The paperwork never ends The Archives
June 16-31, 2000 Archive Index CHFpatients.com

Tom 6-17     seek SSD advice
 
Frank S' 6-17 reply to Jon's 6-14     Coreg opinions
 
Jon's 6-17 reply to Frank S' 6-17     Coreg opinions
 
Deb 6-17     seek CHF specialist in upstate New York area
 
Jon 6-17     new pages, need some doctor info
 
Ginger 6-17     alternative & supplements info & more
 
Jon's 6-27 reply to Ginger's 6-17     CoQ10 & statins, & more
 
Tony T 6-17     questions about heart thumping forcefully & more
 
Gerald F's 6-17 reply to Ann C's 6-15     Atacand works for me
 
Phyllis A's 6-17 reply to Tony T's 6-15     verapamil dose & to Debra
 
Tom S 6-17     Coreg, numbness & other symptoms
 
Jon's 6-17 reply to Tom S' 6-17     stopping Coreg & more
 
Ann C's 6-17 reply to Gerald F's 6-17     meds, options & more
 
Joe S' 6-17 reply to Tony T's 6-17     finding the root of the problem
 
Rick M's 6-17 reply to Frank S' 6-17     Coreg
 
Lamar M 6-17     a-fib & meds questions
 
Carl's 6-17 reply to Barbara's 6-12     CHF specialists & more
 
Maggie S' 6-17 reply to Tony T's 6-17     funky heart beats & more
 
Bill D's 6-17 reply to Tony T's 6-17     funky thumping heart beat experience
 
Ginger 6-18     how do I find a new PCP?
 
Donna Z 6-18     how do I ease leg cramps at night?
 
Lynn M 6-18     thumping heart beats, PVCs, questions
 
Jon 6-18     thumping, irregular heart beats
 
Lynn M's 6-18 reply to Dee L's 6-13     inverted T-waves possibility
 
William 6-18     seek CHF doc in Utica, New York
 
Frank S' 6-18 reply to Jon's 6-17     seek comments on MyoVive
 
Jon's 6-18 reply to Frank S' 6-18     to recap what's on that page,...
 
Lisa M 6-18     it's my one year new-heart birthday!
 
Jon's 6-18 reply to Lisa M's 6-18     congratulations
 
Robin Lynn's 6-19 reply to Lynn M's 6-18     arrhythmia
 
Jon's 6-19 reply to Robin Lynn's 6-19     arrhythmia
 
Robin Lynn 6-19     ignoring strange heart rhythms
 
Ginger's 6-19 reply to Frank S' 6-18     am curious about your opinion
 
Donna Z's 6-19 reply to Lisa M's 6-18     happy birthday!
 
Jon 6-19     if you want to help,...
 
Frank S' 6-19 reply to Ginger's 6-19     supplements
 
Jon's 6-19 reply to Frank S' 6-19     supplements
 
Suzy B's 6-19 reply to Lisa M's 6-18     happy birthday
 
Gus R's 6-19 reply to Robin Lynn's 6-19     things that go bump in the night
 
Jack's 6-19 reply to Frank S' 6-19     supplements
 
Bruce 6-20     what's normal 6-minute walk test & more
 
Robin Lynn's 6-20 reply to Gus R's 6-19     about those thumpings
 
Clarence 6-20     seek Alexandria, Virginia CHF doc & more
 
Lynn M's 6-20 reply to Robin Lynn's 6-19     about those thumpings
 
Tony T's 6-20 reply to Joe S' 6-17     about those thumpings
 
Lynn M 6-20     about those thumpings
 
Tony T's 6-20 reply to Maggie S' 6-17     about those thumpings
 
Carol W 6-20     working at home part-time
 
Jon's 6-20 reply to Bruce's 6-20     6 minute walk distance
 
Frank S' 6-20 reply to Jack's 6-19     whatever works for you
 
Maggie S' 6-20 reply to Tony T's 6-20     more details about that thumping & more
 
Jack's 6-20 reply to Tony T's 6-20     for what it's worth
 
Tom S 6-20     fitful, restless sleep & dreams
 
Renee M 6-21     Coreg has worked for me
 
Hope M's 6-21 reply to Tom S' 6-20     fitful sleep & bizarre dreams
 
Joe S' 6-21 reply to Tony T's 6-20     dyes, food allergies & more
 
Tom B's 6-21 reply to Tom S' 6-20     fitful sleep & bizarre dreams
 
Barb S' 6-21 reply to Tom S' 6-20     fitful sleep, trouble getting to sleep
 
Lynn M's 6-21 reply to Robin Lynn's 6-20     & to Gus R - angina attacks
 
Lynn M's 6-21 reply to Maggie's 6-20     edema & pain
 
Gus R's 6-21 reply to Robin Lynn's 6-21     a-fib, pains, descriptions & more
 
Barb L S 6-21     update, son faces serious risks, prayer request
 
Eric's 6-21 reply to Renee M's 6-21     seeing improvement on Coreg
 
Robin Lynn's 6-21 reply to Lynn M's 6-21     thumps & bumps, to Tom S & more
 
Jon 6-22     posts will be tardy today
 
Ruthie A 6-22     update, back pain & meds versus CHF
 
Pam E 6-22     getting benefit from beta-blockers
 
Pam E 6-22     questions about magnesium supplementation
 
Jon's 6-22 reply to Pam E's 6-22     magnesium supplementation
 
Judith's 6-22 reply to Carol's 6-20     seek advice about at-home part-time work
 
Sylvia's 6-22 reply to Barbara's 6-21     restless legs, sleepless nights, meds & more
 
Lynn M's 6-22 reply to Robin Lynn's 6-21     arrhythmia, fluid retention, synrdrome x & more
 
Jon's 6-22 reply to Lynn M's 6-22     syndrome x & decompensated CHF
 
Thelma's 6-22 reply to Robin Lynn's 6-21     menstruation & arrhythmia
 
Aubrey 6-22     seeking CoQ10 info Urls
 
Cheryl L 6-22     glad to find you all
 
Pat L's 6-24 reply to Pam E's 6-22     metoprolol versus Coreg
 
Joe S' 6-24 reply to Judith's 6-22     internet work
 
Jon's 6-24 reply to Joe S' 6-24     internet work
 
John len's 6-24 reply to Carol W's 6-20     other work options
 
Joy R 6-24     those chest pains, thumpings, update & more
 
Barb L S' 6-24 reply to Donna Z's 6-18     leg cramps, rubbing legs & more
 
Barb L S' 6-24 reply to Sylvia E's 6-21     leg cramps
 
Barb L S 6-24     coxsackie virus
 
Sally R 6-24     what is compensated heart failure
 
Jon's 6-24 reply to Sally R's 6-24     compensated heart failure
 
Jon 6-24     upcoming CHF workshops in California
 
John Len 6-25     home businesses
 
Robin Lynn 6-25     thumping, syndrome x & headaches
 
Jon's 6-25 reply to Robin Lynn's 6-25     syndrome x resources
 
Tom S' 6-25 reply to Sally R's 6-24     that low an EF means less energy
 
Jon's 6-25 reply to Tom S' 6-25     it depends on many things
 
Pete C 6-25     checking in
 
Barb L S' 6-25 reply to Jon's 6-24     leg pain, clots, massage & more
 
Jon's 6-25 reply to Barb L S' 6-25     leg pain, clots, massage & more
 
Danny H 6-25     CoQ10 price & sodium restriction questions
 
Sigmund B 6-25     has anyone had surgery with CHF?
 
David A 6-25     questions - Coreg dose, cramps, flying
 
Barb L S' 6-25 reply to Jon's 6-25     does CHF go away? & more
 
Jon's 6-25 reply to Barb L S' 6-25     does CHF go away?
 
Ben B's 6-26 reply to Jon's 6-25     waiting for that decline
 
Jon's 6-26 reply to Ben B's 6-26     I suspect,...
 
Jack's 6-26 reply to Danny H's 6-25     CoQ10 & salt restriction
 
Joe S' 6-26 reply to Jon's 6-24     selling over the Internet
 
Barb L S 6-26     SSD, leg pain, EF vs activity & more
 
Jon's 6-26 reply to Barb L S' 6-26     leg pain, Vo2max & more
 
Gene S' 6-26 reply to Barb L's 6-24     rubbing painful legs
 
Jon 6-26     seek owner of this e-mail address - dwilson7@uswest.net
 
Jon 6-26     CHF specialist listing
 
Tom S' 6-27 reply to David A's 6-25     Coreg dose reduction & more
 
Pam E's 6-27 reply to Pat L's 6-24     metoprolol dose
 
Pam E 6-27     syndrome x & chest pain
 
Bev T's 6-27 reply to Tom S' 6-25     CHFers functioning with low EF
 
Jack's 6-27 reply to Gene S' 6-26     rubbing vinegar on skin
 
Ben B's 6-27 reply to Jon's 6-26     doing what we can
 
Jon's 6-27 reply to Ben B's 6-27     walking the dog
 
Hope M 6-27     headaches with Lasix and Aldactone - anyone else?
 
Donna Z 6-27     seek info about a CHF device
 
Jon's 6-27 reply to Donna Z's 6-27     a girdle-like heart device
 
Jon 6-27     rubbing legs & blood clots risk
 
Bill D's 6-27 reply to Hope M's 6-27     headache side effects
 
Robin Lynn 6-27     syndrome x & to Pam E
 
Phyllis A's 6-27 reply to Pam E's 6-27     improvement on metoprolol
 
Madelyn J's 6-28 reply to Gene S' 6-26     vinegar on skin, lotions
 
Donna Z's 6-28 reply to Hope's 6-27     Lasix and Aldactone, headaches
 
Joy R's 6-28 reply to Barb's 6-26     cardiac rehab, exercise & more
 
Leland Y 6-28     thank you for the information
 
Jon's 6-28 reply to Leland Y's 6-28     you're welcome
 
Cheryl L 6-28     support, helpful info, EF vs. activity & more
 
Jon 6-28     Al H is okay pretty much
 
Lynn M 6-28     leg cramps, surgery with CHF
 
Leland Y's 6-28 reply to Tom S' 6-20     beta-blockers & nightmares
 
Jamie S 6-29     muscle cramps & stretching
 
Linda O 6-29     leg cramp remedies
 
Frank S' 6-29 reply to Jamie S' 6-29     leg cramps, blood flow, update & more
 
Jeff 6-29     intro, site on life with a heart assist pump
 
Bill D's 6-30 reply to Lynn M's 6-28     leg cramp remedies & more
 
Kathryn C 6-30     have faith
 
Jay Q 6-30     hey - no-sodium pickles and water softeners now!
 
Al H 6-30     don't be so touchy!
 
Jill S 6-30     watch out for the anesthetic during dental work
 
Jill S 6-30     has anyone heard from Jill M?
 
Jon 6-30     bios on the Who's Who page - heads up


Tom, June 17, 2000 - Hello, I have an SSD issue. I could use some help in establishing for SSA the actual date of my disability due to CHF. I was diagnosed as such in April of 2000 and had not worked for the previous 10 months. I submitted to them that my date of disability was June 1, 1999 (the end of my last employment). They came up with a very arbitrary date of January 1, 2000. Here's the background:
     In January of 1999 my family doctor has a record of my complaining about shortness of breath and fatigue. At the time we chalked it up to anxiety since the company I was working for was laying off people and of course I was worried. In hindsight it seems to me that while there may have been anxiety, my symptoms were in excess of that and now ought to be identified as CHF. After I was laid off, I did seek work but my symptoms persisted. Also, I visited my doctor with continuing complaints of fatigue and shortness of breath in July of 1999. Concurrently, my energy level and stamina were such that had I landed a new position, I beleive I would likely have been unable to do it very well or at all, for medical reasons.
     I'd like to "prove" to SSA that in fact, my date of disability was June 1, 1999. What I'd appreciate would be suggestions on how best to make this case. Many thanks! tbehan@earthlink.net


Frank S' June 17 reply to Jon's June 14, 2000 - Dear Jon, I apologize for not making myself understood by you. My impression is that there seems to be many posts that have negative stuff to say about Coreg; more so than most other drugs which we talk about. Perhaps it works for many more people than people who have problems with it. I assume that since you are so concerned by my quite sterile comments about the stuff, that you have had a positive experience with the drug. I just hope there are more people that use it without difficulty than those who comment negatively on your web site. I hope you will forgive me for voicing my impressions about the drug. Later, Frank. marquasmith@mailcity.com


Jon's June 17 reply to Frank S' June 17, 2000 - Hi Frank, You said you would "experiment like crazy to stay away from it." That ain't a sterile comment. ;-) You said that you have not taken Coreg so I assumed you must have read more than just some negative comments here to cause such a comment and I wanted to know what you had read, that's all. I have had a totally neutral experience with Coreg myself. Aside from raising my blood sugars, I have noticed neither benefit nor ill effects from the stuff. Jon.


Deb, June 17, 2000 - Hi, Does anyone have names of a good CHF specialist or CHF clinic in the upstate New York or New England area? gbrodeur@twcny.rr.com


Jon, June 17, 2000 - Hi everyone, I have substantially upgraded my Links page so please take a look and make use of the expanded selection. If you know of any good links not listed there, send me the Url and I'll check them out. As most of you know, I am always waaay behind and it takes me weeks to actually act upon suggestions. Please rest assured that I do take them seriously and will eventually get to them, one and all (I hope). I also added a page about MyoVive, a supplement designed for CHFers.
     I am now working on a page listing CHF doctors and clinics, which will replace the section on CHF doctors currently on my Links page. Please send me the name, location, Url, e-mail address, or phone number (preferably all the above) of your own CHF doctor. Let me know whether your doc has okayed me listing him here. If not, I'll contact him first chance I get to ask permission to list him on my site. That page will of course always be under construction, like the Me Too pages, so please be patient. I hope it will turn out to be a valuable resource as doctors and clinics are added. By the way, Comp USA PC actually got my pooter fixed Thursday afternoon! (whew!) Jon.


Ginger, June 17, 2000 - Hiya's, For those of you into alternative medicine, there is a great site for it at www.drwhitaker.com. I read a lot of it and noticed that the stuff he tells us we need for our hearts is real close to what Jon has on his pages. The reason I am bringing this is up is that I read on one of the sites like the the one I just listed that statin drugs deplete the CoQ10 in our systems. I never heard that before. Have any of you?
     I thought it was interesting due to a lot of us taking statin drugs and some of us taking CoQ10 also. There is another site like the one I listed but at this one you can listen to live radio broadcasts. It is also about alternative meds like supplements and they have a call-in and ask questions time too. It is www.waxy.com. They don't tell us not to take our regular drugs, just what they think we should be taking with them. On the waxy site, almost everthing he talked about yesterday that was good for CHF is in Myovive. The only drawback I found to MyoVive was exactly what Jon said: not enough CoQ10. If you're taking statin drugs and take CoQ10, maybe you ought to look into these pages.
     I am not trying to preach alternative meds here guys, just giving you places to go see and listen to form your own opinions about any supplements and vitamins you take or have thought about taking. Regular docs for the most part are not gonna give us statin drugs and tell us that it can deplete the CoQ10 in your system. So I found these sites very enlightning. It's hard these days to know what we should be taking and at what dose. I haven't found their section on colds yet. Figures huh, considering that was what I was looking for in the first place! <lol> Stay well ya'll and I hope to make it to chat Saturday night. Hugs and prayers, Ginger. mystery@laker.net


Jon's June 17 reply to Ginger's June 17, 2000 - Hiya Ginger, It's the usual problem: I have so much stuff scattered all over my site its hard to find specifics without using the site search engine and a lot of patience. <g> You can find an article about statins like Zocor and how they affect CoQ10 here. And by the way, what's the idea of e-mailing your cold to me?! Man, I've got it bad! <lol> Jon.


Tony T, June 17, 2000 - Hi, I just read through The Manual again. It says that 40% of CHF patients die suddenly. This is one of the reasons that I wanted to become active on Jon's site, except I thought the percentage was higher. Most days I am not aware of how my heart is beating. If I listen to it, I'll notice an irregular beat. It never beats normally but frequently, no matter what meds I take, it starts jumping. I can feel it throbbing through my chest. You can feel it quite clearly by pressing a hand to my chest. The worse it jumps, the worse I get. For instance, last night I had trouble sleeping because of this noticable thumping and it is still going on. I'm blaming it today on the windy, dry, allergy-high conditions down here in Miami. If it doesn't stop, I'll probably try 0.125mg of Lanoxin.
     I don't know at which point this thumping gets life-threatening. I also don't feel that the thumping is totally related to Verapamil and its interactions with food, other meds and my allergies. Judging from what I have read in The Manual, Medscape, etc., most CHFs experience this also. I would really be interested in other's experiences with this thumping or whatever you call it. How do you handle it? Have you been successful in calming your heart? How long does your thumping session last? Does your heart always thump? Have you found out some of the events that can cause your heart to thump? Do most CHF patients always feel their hearts beating or jumping, or are you usually not aware of the beating?
     Jon, on a side note, I know a lot of info is at this site and in your Manual but with short term memory problems, redundancy rules. Can anyone point me to a good conversation on this subject in The Archives? t0nyt@yahoo.com


Gerald F's June 17 reply to Ann C's June 15, 2000 - Hi Ann, Atacand is the best thing to happen in my treatment. Zestril had me at minimum quality of life. Things are better now and I'm glad I switched. I wouldn't go back to the coughing and other side effects. Gerald F. gefan37@home.com


Phyllis A's June 17 reply to Tony T's June 15, 2000 - Hi Tony, Yes, I'm on a lot of Verapamil but when I was on lower dose I had some thumping and PVCs so the doc kept increasing it until my symptoms stopped and that was at 360mg twice a day. To Debra, I agree and you put it so well about the Verapamil. I thank God I have felt pretty good for the last few months. phylcasurv@msn.com


Tom S, June 17, 2000 - Hi, I am sure there are a lot of folks who have been on CHF-related medications a lot longer than I have but I believe my nearly 5 years of taking some pretty heinous stuff should qualify me as somewhat of a minor expert on the subject. As far as Coreg goes, I am taking the vaunted 50mg a day (25mg twice a day) and I honestly haven't got a clue what it's doing for me. I actually have gone off it for short periods of time and again I really don't see much appreciable difference. That's not to say it wouldn't have a profound effect on someone else. After all I tip the scales at a little over 300lbs on a 6 foot frame.
     Lasix and potassium supplements on the other hand do have profound effects on my substantive frame. If for any reason I stop taking either, water-weight starts setting in and it takes several days of Lasix at a rate of about 320mg a day to drop the extra fluid. If I can't afford my K-Dur and drop it for a few days I might as well plan on a "Serta" vacation because I end up with the energy of a slug.
     For those of you complaining about numbness in the hands and feet, and lightheadedness, I believe a lot of that is associated with some of the medicines we are prescribed. I noticed that those symptoms seem to have faded with time. For those new to this CHF thing, don't panic every time you feel a strange twitch or two in your chest or perhaps feel a little tingle, or even somewhat dizzy. I've lived with those symptoms for nearly 5 years so they can't be too critical. My original prognosis was pretty dreary and so far I have managed to exceed all life expectancy prognostications by more than 4 years. bhigheart@hotmail.com


Jon's June 17 reply to Tom S' June 17, 2000 - Hiya Tom, I hope you beat those prognostercashuns another 4 years! Please be careful about stopping Coreg. If you need some Coreg, please e-mail me immediately. For what it's worth, my CHF doctor did not put me on Coreg so I would feel better. He wanted me on it for one reason only - mortality benefit. That's the real reason to take the stuff. It significantly increases our chances of living longer. Jon.


Ann C's June 17 reply to Gerald F's June 17, 2000 - Hi Gerald, Thanks for writing me! I am on the following drugs right now:

     It seems like I am forgetting one. Oh well, I think that is plenty for the time being. There was a time recently that my doctor said he thought he could control it with medication but I think the time is drawing nearer for the transplant situation. Please pray for me. I keep busy raising my exotic Bengal kittens. I am planning a trip to Switzerland in December as well. ;-) Ann. Shomeekatz@aol.com


Joe S' June 17 reply to Tony T's June 17, 2000 - Hi Tony, I have had heart problems with a scarred valve for over 55 years and my heart thumps a lot, especially when I lay down. I started a diary years ago to determine what might have caused it and it seems to always go back to what I've eaten. I have food allergies and if I inadvertently eat something that's a no-no, I really pay the price. About 2 months ago my sister-in-law was visiting and for several days I thought I was going to die with my heart thumping, chest pains and numb arms. I asked what she was putting on the food she cooked and it was Lawry's Season Salt. I got a little angry over her ignoring the third word salt which really was MSG. Other things may bother you, but it's worth the effort to try and find them. Good luck, Joe S. jes@stevensonlighting.com


Rick M's June 17 reply to Frank S' June 17, 2000 - Hi Frank, The reason that you read so many reports of problems with Coreg is that most of us have had problems with Coreg. That said, we have mostly lived through it and are still around to report that we wouldn't give it up if they paid us to. Before Coreg was approved, most CHFer were desperate for a drug that would help keep us out of the hospital and help us live a little longer. Perhaps if you went back a few years in The Archives, you would get the picture of a bunch of people who couldn't wait for their doctors to start them on the sometimes rocky road to the full dose. It takes time and faith and hope to get there, but what worthwhile thing doesn't? rearadml@iu.net


Lamar M, June 17, 2000 - Hi, I have CHF and have had for some time. At one time, I had a-fib. I took a couple of shocks and for nearly a year with medications was doing fine. However, recently after several stressful days I slipped back into a-fib and went went to the doctor. He took me off Cordarone and put me on tenormin and warfarin. I continued to take the Cordarone and left off the tenormin, which was making me sick, sicker, and sickest. In 24 hours, my heart was back in normal rhythm or at least I think so. Its beat is very steady at about 59 beats per second and my BP runs around 148/59.
     My question is, "Do any of you think that I am correct in thinking that I no longer have a-fib and should I contact my doctor (he's nice but pretty bull-headed)?" I am still taking the blood thinner; I am afraid to stop. I feel ok. Has anyone out there had a similar experience? Could the stress have caused the short period of AF? Jon, your page is fantastic! lmangham@zebra.net


Carl's June 17 reply to Barbara's June 12, 2000 - Hi Barbara, I'm sorry I took so long replying. I've been out of touch for some time. Here in Oklahoma City, Baptist hospital has the reputation of being the best for heart problems. I called their heart clinic and asked for CHF specialists only and they gave me 2 names. One of the names was a doctor that a friend of mine had so that is the way I found a CHF specialist. However, he was so booked that I haven't seen him yet. I have an appointment the 30th. Good luck to you and God bless, Carl. cwilkins@ilinkusa.net


Maggie S' June 17 reply to Tony T's June 17, 2000 - Hi Tony, I also have a very irregular heartbeat and a lot of "thumping." I can also see my chest move, especially when I'm relaxing and sitting down. It is worse if I am retaining any fluid. This last week I was having some problems and it felt like my heart was doing "Johnny Jumpups." My physician increased my Lasix quite a bit for 3 days and I lost 3 lbs of fluid, and my irregular beats improved. The fluid retention crept up on me, even though I watch my sodium and fluid intake. These PVCs and whatever are annoying but I try to ignore them, since I've had them so long and my PCP, electrophysiologist and cardiologist know they're there. I was diagnosed with DCM and CHF 7 years ago. I do have an ICD/pacer implanted for V-tach but it has never gone off in the 9 months I've had it. I'm on the usual medications of Lanoxin, Coreg, Lasix, Aldactone, Prinival, potassium, Coumadin, Premarin, magnesium and supplements. I hope everyone is having a good weekend and doing as well as possible. Thanks for this site, Jon. Maggie S. marjac@pro-ns.net


Bill D's June 17 reply to Tony T's June 17, 2000 - Hi Tony, For the last 3 years I've been asking about those thumps! Are they palpitations or are they something else to worry about? My cardiologist said, "Do you have them all the time, or just sometimes?" I thought about it and said, "Sometimes." He said, with a grin on his face, "Are you having them now?" "No," I said. "So you have them when you think about it?" I had to say yes and ever since, I don't think about them. I ignore them and rarely do they bother me. Bill. billdog@gate.net


Ginger, June 18, 2000 - Hiya's, It's me again. I have a question, as usual. <lol> We talk a lot about how to find a good CHF doc but my problem now is finding a new PCP. Mine is not coming back, and keeping the one who took over his practice is not an option as I explained in my last post. I have had this PCP for as long as I can remember. So how do you go about finding a new PCP who is a good doc? I thought about picking one at random out of my insurance book but that doesn't really seem like a great idea. We know what to look for with a CHF doc but what do we look for with a PCP? Thanks ya'll and stay well. My cold is a little better now that I gave part of it to Jon. <g> Hugs and prayers, Ginger. mystery@laker.net


Donna Z, June 18, 2000 - Hello All, I know this was covered before but I can't remember what was said, so here goes. At night I've been getting leg cramps and I know there must be something I can do for it, so any suggestions would be greatly appreciated. Thanks, Donna. dzak@worldnet.att.net


Lynn M, June 18, 2000 - Wow, If we patients didn't have each other to talk to, where would we be?! I'm amazed to read so many messages about people's hearts thumping! I thought it was just me. Last summer when I retained so much fluid that I ended up on a ventilator, my heart was thumping so badly 2 or 3 weeks before that, you could see my clothing actually move. To lie in the recliner I had to cushion myself with a lot of pillows (aside from the problems of pulmonary edema itself) to minimize that thumping sensation. So, any of you suffering from thumping, try the pillow trick if it's keeping you awake. Also, the thumping would be worse if I lay on my left side, which is always uncomfortable anyway. Occasionally, I still get thumping episodes and from reading the messages posted here, I now know that it seems to accompany heavy fluid retention; a connection I hadn't made before now, despite my own experience.
     One important note: If the thumping is extremely rapid and it feels like your heart is literally going to jump out of your chest, you may be having a v-tach episode. Sustained v-tach can lead to v-fib if not treated. When I had a v-tach during an angioplasty, that's exactly what it felt like. When I had my first v-tach, I was unconscious and didn't feel it. My cardiologist told me to go to the ER if I ever felt that again, even if the thumping stops on its own. Fortunately, both times I had v-tach I was either already surrounded by cardiologists or already under heavy monitoring in the ICU.
     Speaking of arrhythmia, does anyone get what I call "sick" PVCs? By that I mean that in addition to the sensation of your heart missing beats, you feel some nausea along with them? Before my heart failure got worse, PVCs were only a frequent annoyance but now they sometimes make me feel so sick that I have to lie down. Lynn. techndex@pacbell.net


Jon, June 18, 2000 - Hi everyone, I guess I'll throw in my 2¢ worth on the thumping sensations. A year or so ago I had many such episodes. My cardiologist was very concerned and when he captured a run of these beats in his office, he immediately hospitalized me; do not pass go, do not go home to collect clothes. While it turned out to be a combination of a-fib - since converted and never returned - and PVCs with non-sustained V-tach, this sensation is nothing to play around with. Find out what it really is before resigning yourself to just living with it. This is very important. Many of us will just have to live with such sensations but a few will need intervention of one sort or another.
     Just to pass on some subjective sensations: while having these "runs" of pounding and sometimes irregular heart beats, if I were in a car or in an elevator, I got dizzy and somewhat sick to my stomach as well as seriously short of breath and I mean seriously short of breath. For what it's worth, if you experience something like this, please get it checked out. Palpitations that are often experienced by CHFers are when your heart "jumps into your throat" and are not the same sensation as a hard-pounding heart beat, which often means PVCs or arrhythmia. Jon.


Lynn M's June 18 reply to Dee L's June 13, 2000 - Hi Dee, I know you asked your question almost a week ago but I guess late is better than never. Inverted T-waves on an EKG can - but not always - indicate ischemia, or that the heart is not getting enough blood. Been there, had inverted T-waves. Lynn M. techndex@pacbell.net


William, June 18, 2000 - Hi, I live in Utica, New York. Does anyone know of a good CHF specialist in that area? bm5487@yahoo.com


Frank S' June 18 reply to Jon's June 17, 2000 - Hello Jon and all, You may or may not want to add a section on your myovive page which contains comments from CHF patients who are able to comment about this product, first hand or in general. I took advantage of their free offer and my impression of their product is as follows:
     Because of the relatively minute quantities of the nutrients which they feel are important to their product's efficacy, I don't understand how it can be effective if the very sick people who try the product are already on some reasonable nutrition plan which must include doses of relative nutrients such as those contained in their formula, which are much greater in dose amounts than the amounts which they prescribe. In other words, most of us who are serious about our nutrition are taking amounts of the contents of their product which far exceed the amounts which they use, so the slight increase in dosage by using their product would make very little difference, if any. Comments on my logic? Later, Frank. marquasmith@mailcity.com


Jon's June 18 reply to Frank S' June 18, 2000 - Hiya Frank, Since you asked me specifically, I'll reply but I put pretty much all my thoughts about it on the MyoVive page itself. For my personal use, I'm content with the amounts of everything in it but CoQ10. There are even 1.4 grams of L-carnitine and taurine, which are the prime nutrients for CHF besides CoQ10. L-carnitine is very expensive. Bioavailability has just got to be higher than any other delivery system except sublingual. If you "pass" part of your nutrient tabs and gelcaps every day (whether you realize it or not) instead of your body using them, large amounts really aren't helping. With a liquid delivery system, everything is rapidly absorbed and high percentages of each ingredient are actually used by your body.
     However, it don't make me no never mind if anyone buys the stuff or not. It's a personal choice and with the price of supplements so high, it's a difficult choice at that. I don't get paid to promote it. I tried to get the ingredient list from some cardiology clinics (including my own) which have their own line of "heart" vitamins but they never replied so I didn't add any of them to my pages. I'm not buying a bottle of any stuff just to see the ingredients! If anyone knows of another supplement designed specifically for CHF, I'd love to know about it so I can check it out.
     I don't have the energy to deal with another interactive page. I am stretched very thin as it is, so forms on another page except the upcoming CHF doctor listing are out of the question. However, everyone should feel free to comment on supplements in general - including MyoVive - right here. I have no stake in its success apart from encouraging companies to produce more similar products, so negative feedback doesn't hurt me any. Jon.


Lisa M, June 18, 2000 - Hi Jon, Just a quick note to let you know I am doing well. June 26th will be one year since I had my heart transplant. Happy 1st Birthday to me! It is the nicest gift I could have ever received from God. Lisa M. Goldylcks7@aol.com


Jon's June 18 reply to Lisa M's June 18, 2000 - Howdy-doo Lisa, Running a web site like this one, the very best thing I can hear from anyone is, "I am doing well!" Very glad to hear it. I would love to include your transplant stpory to my page if you take a notion to send it my way. Jon.


Robin Lynn's June 19 reply to Lynn M's June 18, 2000 - Hi Lynn, Well, I think that by now I am an expert on these thumps, bumps and jumps of the heart. Many docs don't understand that when you come to them with these problems; that each time they can be different. Yes, I get the sick ones. Once, before I knew of my DCM, I called 911 and the paramedics came and had me hooked up to the monitor. I would feel the nausea and tell them "here it comes" and sure enough a run of PVCs would follow. What I am most concerned about is that a lot of the different arrythmias have not been recorded on any monitor. My last attack, just over a week ago, was preceeded by 3 weeks of irregularities in my rhythm. The night this attack hit I thought I was buying my ticket out. My heart rate dropped as low as 43 BPM with couplets and triplets added to it. While I was up, it wouldn't go above 55-60 and I mean to tell ya, you have a real hard time breathing. When I tried to lay down, it would go haywire, racing over 100 and very irregular so I decided to just calmly monitor my pulse.
     I was lying there just feeling my pulse when it stopped the thump, thump on my finger and it felt like my vein pulsated with a bunch of little beats running all together, then I had a sharp chest pain with what I call an explosion in my chest. I have had this happen before; sometimes 2 in a row and that's when I think I am buying my ticket. It happened when my pulse was around 130 lying down. Does this desciption sound like anything anyone knows about?
     I did follow up with my cardiologist and he took me off Lanoxin since it can cause the heart rate to drop and he changed my beta-blocker. Of course, he told me to not hesitate to call him the next time it happens. Good luck to all and God bless. heartful99@hotmail.com


Jon's June 19 reply to Robin Lynn's June 19, 2000 - Hi Robin, Instead of telling you to call him next time, he should have you on a 30-day event monitor, which you wear all the time for 30 days, and which records all your cardiac events over that 30-day period. Please get to a doctor who will stick with it until this is identified and treated. Your current doctor is being irresponsible with your very life if he is not aggressively trying to identify the cause of this heart rhythm disturbance. This is not just something to "live with." Up to 40% of all CHFers die of sudden cardiac death, often caused by arrhythmia. Get it treated, please. Isn't it strange how we let serious problems go with the pump that supports our very life - our heart - that we would demand be properly fixed in our TV or our car? Jon.


Robin Lynn, June 19, 2000 - Hi, It is my suspicion that we feel most of the thumps and bumps when we are resting because we are still and we notice them. They do happen when you move around but you just don't notice them as much. Not paying attention to them or thinking about them doesn't always work. I have become a master of ignoring them and have gotten myself in real binds that way, passing out, for example. heartful99@hotmail.com


Ginger's June 19 reply to Frank S' June 18, 2000 - Hi Frank, I did the MyoVive study and am still taking it. I am curious as to what it is in it that you think there is too little of besides CoQ10? It has twice the L-Carnitine and taurine I was taking before, and a few I wasn't even taking. So just out of curiosity, I would like to know. I am a big believer in supplements. Cya's soon. Hugs and prayers, Ginger. mystery@laker.net


Donna Z's June 19 reply to Lisa M's June 18, 2000 - Happy New Heart Birthday, Lisa. I hope you have many, many more healthy and happy birthdays! dzak@worldnet.att.net


Jon, June 19, 2000 - Hi everyone, I have composed a form letter for asking CHF docs and clinics to add themselves to a listing to be started on this site. However, I am a bit overwhelmed with things to do. If anyone is willing to help get this letter mailed and/or e-mailed to doctors and clinics, please let me know. I also need some help checking Me Too! addresses to weed out bouncers. If you can click a mouse and have e-mail capability, you qualify. Please let me know if you are interested in helping with this. Jon.


Frank S' June 19 reply to Ginger's June 19, 2000 - Hi Ginger, I guess it really boils down to personal comfort with a product, and one's own preferences. If I had to buy Myovive, I wouldn't. L-carnitine and taurine have not received the scrutiny of CoQ10 and other supplements, in my opinion. The 1.4g which they say they deliver in Myovive could be excessive, according to what I've read. With just a few exceptions, if one eats lots of fruits and veggies and meat and fish and grains, all in moderation of course, my opinion is that these researched type products like Myovive are mostly hype. I would rather pay my money for the good Lord's products than buy what the so-called geniuses have to offer. Lots of hugs to you, also. Later, Frank. marquasmith@mailcity.com


Jon's June 19 reply to Frank S' June 19, 2000 - Hi Frank, Please point me to the info you read about 1.4 grams of L-carnitine and taurine being excessive. I hate to think I am missing some good information. I have read that up to 4 grams of taurine per day (2 grams twice a day) is best for those with CHF, and similar doses of L-carnitine are called for. That's from studies published and recorded in Medline, where there are lots of studies about these nutrients for CHF. I look forward to finding new sources of information from your suggestions. Maybe I can add it to the info about L-carnitine and taurine already listed on my Nutrient Stew pages.
     For what it's worth, I certainly agree that what supplements to take or not to take depends on the individual and his preferences. Deciphering all the info out there about different supplements and then deciding what to buy - considering the expense of such things - makes the choices difficult indeed. If I were not comfortable with any ingredient in a product, I wouldn't use it either. Jon.


Suzy B's June 19 reply to Lisa M's June 18, 2000 - Hi Lisa, I too add my congratulations to your new birthday. May you have many, many more to come. lookn4aheart@yahoo.com


Gus R's June 19 reply to Robin Lynn's June 19, 2000 - Hi Robin and All, It is kind of upsetting to find that the things that go bump in the night is us, isn't it. ;-) I'm a little nuts and sometimes see things different than most do, so I'd like to throw in descriptions of my 2 favorite bumps. One feels like a small explosion goes off in the center of my chest and is followed by a warm sensation that radiates out from it. The first time I really thought that was it. I was sure my heart broke, and the warm sensation was from the blood running out. I soon realized that the blood would be the same temperature as it's surroundings, so it shouldn't feel warm if it was leaking out. Then I decided that if it had broken and was leaking in great gushes, I probably wouldn't be calmly sitting there thinking about it.
     The other one won't mean much to you city folk but if there are any hicks here besides me, they'll understand this one. It also is felt in the chest area and is the same sensation that one has when they come in contact with an electric livestock fence. Or, for the city folk, a little similar to being hit in the chest by a baseball bat swung by a real good pro batter. We captured the "break and leaks" with a holter monitor, which showed only short runs of a-fib. We discussed an event monitor to capture the "electric fences" but that seemed to be heading towards a pacemaker and I wasn't in the mood that day. Best wishes, Gus R. gus13@net66.com


Jack's June 19 reply to Frank S' June 19, 2000 - Hi Frank. "If one eats lots of fruits and veggies and meat and fish and grains, all in moderation of course." Can you explain to all of us how we can eat "lots" in "moderation?" Luckily, there is plenty of research on CoQ10, L-Carnitine, Selenium, Taurine, and the other supplements that are in MyoVive so people can rely on the research and not have to depend on your opinion. If you want your 300+ milligrams of CoQ10 daily, 5 pounds of raw beef ought to do it! If you have specific amounts of any vitamins, minerals or nutrients that are required, I'm sure putting away 50 or 60 pounds of food every day will get them into your system. Jack. maddjak@hotmail.com


Bruce, June 20, 2000 - Dear Friends, Who can tell me what a normal distance and the highest distance is for a 6 minute walk test for a CHFer with an EF less than 30%? Call it stupid but I really want to set the national record for distance on August 22, when I have my one year follow up since entering the SCDHeFT Trial. Today I did 2,120 feet in 6 minutes on a treadmill. I figure if I can do it at a 5 mile per hour pace, I can walk a half mile in 6 minutes. Thanks and God bless you all. gilham@decoassociates.com


Robin Lynn's June 20 reply to Gus R's June 19, 2000 - Hi Gus, I was delighted by your descriptions. The sensation you described with the explosions sounds like mine. I have described them as like a firework, but I have not been lucky enough to catch it on a monitor. I do think it is serious and I hope to never have one again (not likely).
     A-fib huh? Have you ever been taking your pulse during it? Does it feel like it just pulsates with a bunch of tiny little beats almost beating at the same time? This was the first time I was monitoring my pulse when it happened and now know what the pulse is like. The baseball bat thing, does it go straight through you and almost knock you down except that you just bend over and hold onto something? That sounds a lot like my shotgun. <g> It hits hard and sharp, goes from the front straight through and out my back, and knocks the breath out of me. My others are a feeling that my heart is just gonna stop. Do you think there's anything to it that we can't seem to catch these on an event monitor? I wore one for almost 2 months, had an attack one week before we put it on and 3 days after I took it off. Ain't that something?
     I want to put out a prayer request for Staci H. She recently had some blood work done and it does not look too good at all. I will keep you updated as I can. God bless to all, Robin Lynn. heartful99@hotmail.com


Clarence, June 20, 2000 - Hi, I am looking forward to Jon's list of heart doctors. The one I have presently was on duty when I checked into the hospital with a-fib several years ago. Last August I was back in the hospital with CHF. Shortly after being released, he had me take a nuclear stress test and said come back in 6 months. I am on the same medications: prinivil, Lanoxin, Lasix and K-dur, as when I was discharged from the a-fib internment in 1998. In early June of this year I had several recurrent early morning episodes of rapid heart beat and early morning dizziness. I went in for an examination and another stress test. I didn't hear from him for 2 weeks, so I called him. He did call back and said the test showed nothing different than last August. I asked him what should we do next? A long silence on the other end of the line, "Well, try exercising a little more and losing a few pounds and let's see what happens." Am I being unjust in looking for a new doctor? If anyone knows one in the Alexandria, Virginia area please let me know. cmartin2@erols.com


Lynn M's June 20 reply to Robin Lynn's June 19, 2000 - Hi Robin, I have had long runs of PVCs too; long enough to trigger the heart monitor alarm in the CCU many times. Once I clocked 28 PVCs in a row according to the monitor display. Like you, I've had many couplets, triplets, bigeminies and trigemenies. However, whenever I complain about all of these blasted arrhythmias to doctors, even when they come in to see what set off the heart monitor alarm, they always shrug them off as nothing to worry about. Even the week just before I went on the ventilator, when I complained about the infernal pounding that shook my whole body, they just shrugged it off. That was less than a month after an a-fib espisode that went into v-tach. You'd think someone would get a clue. Plus, they already knew I was in pulmonary edema at the time.
     For the life of me, I cannot get anyone to take me seriously about this! I must have told at least 10 different cardiologists about it! No one has ever offered Holter monitoring. So I'll probably end up keeling over one day of sudden cardiac death. At least that's better than going the long, slow way of pump failure. Obviously, I'm very frustrated about this. You mentioned bradycardias. Ooooh! Last fall they were giving me so many drugs in the hospital that slowed my heart rate, that they had to keep setting the alarm trigger point on the heart monitor lower and lower. Eventually, they had it set to trigger at 40 BPM. Whenever my heart rate went down into the 30s, I would find it difficult to breathe like you did and would get dizzy just lying still in the bed. Having a blood pressure of 70/36 wasn't fun either. At that point, they eased up on the nitro IV and told me I could have morphine for angina whenever I wanted. Lynn M. techndex@pacbell.net


Tony T's June 20 reply to Joe S' June 17, 2000 - Hi Joe, Like you, if my heart gets mildly upset and starts mild thumping, I mainly notice it when I try to sleep. I can usually go to sleep if the thumping isn't too severe but I pay for it the next day. The next time this happens, I think I will try an additional 0.125 Lanoxin. Have you found something that will "quiet" your heart? The stronger the thumping, the worse my symptoms get and the longer it takes for me to rebound from the weak, tired and sickly feeling afterwoods.
     I am also affected by both allergic and interactional events. Perhaps it is a combination. Perhaps the worst thumping eposides are due to a combination of events both allergic and interactional. For instance, when I was on increased Accupril, which messes around with potassium, when I would eat bananas or drink too much orange juice I would get increased thumping. My doctor told me to cut down on the orange juice and bananas. I chose to cut down on the Accupril. If, during the same time, I ate cheese too close to my verapamil dose or came into contact with dust, or if it was a high allergy day outside, my thumping would get worse. I think some of the worst thumping happens when I take my Lanoxin too close to my verapamil but I don't want to test it to make sure.
     Contact with dust will also cause an increase in BP, thumping and irregularity with me. I can wear black-colored jeans but if I wear certain blue-colored jeans or shirts, my heart will go into stronger thumps. So there are a lot of combinations that make my heart go nuts. No company tests the chemicals they put into materials and clothes to see if there are bad health reactions to the dyes. I wonder how many children are sick with a whole host of sicknesses because they are reacting to dyes or fire retardants in clothing?
     You also said, "Other things may bother you but it's worth the effort to try and find them." I couldn't have said it better! Many CHF patients die suddenly. I believe that is caused when heart irregularities reach an extreme level. My aim is to reduce my blood pressure as much as I can and to eliminate irregular heart beats as much as I can. The only way to acheive both goals is to constantly monitor for interactions. I take my blood pressure about 10 times per day. Because of this I have made changes that have significantly lowered my readings. Like you, I keep a log and have tried to notice what causes my heart to become more irregular or to have these thumping bouts. The more substances I can remove that cause my blood pressure to be higher or that cause my heart to become more irregular, the better chance I have to survive this disease and maintain an improved quality of life. Thanks for your reply. Have a great day! t0nyt@yahoo.com


Lynn M, June 20, 2000 - Hi, I just happened to be reading an AHA Medical/Scientific Statement giving guidelines for evaluating and treating CHF, and found this gem: "Ventricular arrhythmias are nearly omnipresent in patients with heart failure." It went on to say that patients with symptoms due to ventricular arrhythmias, bradyarrhythmias, or cardiac syncope (fainting caused by heart-related problems) "should be referred to a cardiac specialist for further evaluation." Maybe I ought to print out a copy and take it with me to the doctor. Anyone interested in reading more (this is a very long, technically-detailed article) can find it at www.americanheart.org/Scientific/statements/1995/21955555.html. Lynn M. techndex@pacbell.net


Tony T's June 20 reply to Maggie S' June 17, 2000 - Hi Maggie, I hope you are having a good day today. Do you always have that thumping? If not, have you been able to associate the thumping with any event? Have you found anything that makes your thumping get worse? Do you feel better when your heart is not thumping? Have you found something that makes the thumping go away?
     It sounds like your condition occasionally causes your thumping and fluid to get worse. Do you notice any other increased or reduced symptoms when your fluid levels and thumping is increased? If I take too much Lasix, it causes an increase in my thumps and symptoms. Since Lasix rids the body of potassium and magnesium in addition to salt and water, this might explain my increased symptoms.
     Have your doctors given you a medicine schedule? Do you take your meds all at the same time, or space them out? In my case, if I take my Coumadin at the same time as my other meds, I get severe cramps. If I take my Lanoxin and verapamil within 2 hours of each other, I get serious heart thumps and irregularities. Have you noticed any similar interactions between your meds? Personally, I don't feel that the thumping is good for my heart and am doing everything I can to eliminate it. Maggie, thanks again for your response. Have a great week! t0nyt@yahoo.com


Carol W, June 20, 2000 - Hi, Perhaps this will help someone. I have been working for them for almost 3 years and even though it is for only a couple of hours a day, it has helped me to work and know that I can still do something useful.

News retrieval service seeks free-lance person for at-home monitoring of local TV. This involves watching and summarizing TV News broadcasts and transmitting information by modem; Requires Pentium or higher PC a CD-ROM drive and Windows 95 or higher Operating System. Good typing and language skills necessary for 10-20 hours per week. $8.00 per broadcast hour. Fax your resumé or letter to: Logging Coordinator at (716) 875-0275 or an inquiry can be sent to:
NewsTrax, Inc.
2316 Delaware Ave
Suite 200
Buffalo, NY 14216
     Loggers needed in Buffalo, Rochester, Syracuse, Albany, New York; Toledo, Ohio; Johnstown and Altoona, Pennsylvania; Plattsburgh, New York. For people living in other metropolitan areas, if you think you would be interested in this kind of work, your local TV station may know the name of the company covering their area.

Jon's June 20 reply to Bruce's June 20, 2000 - Hi Bruce, For what it's worth, in April of this year, I went 1,260 feet in my 6-minute walk test. My subsequent Vo2max test showed an increase from 13.5% last year to 20%! Jon.


Frank S' June 20 reply to Jack's June 19, 2000 - Hi Jack, My impression of your post is that you are very angry, for whatever reason. If you choose to spend your money on so-called health foods, that is your perogative. Later, Frank S. marquasmith@mailcity.com


Maggie S' June 20 reply to Tony T's June 20, 2000 - Hi Tony and everyone, I hope you are doing ok. I'll try to answer your questions as well as I can. I do notice the thumping at other times but it is definitely worse when I am retaining fluid and especially at night before going to sleep. If I am upset about anything, it is more noticeable also. Sometimes a deep breath helps at that time. I have always had PVCs, even before I was diagnosed with CHF. I haven't found anything to make it go away. When I am retaining fluid I have pressure in my upper chest, pronounced pulsing in my neck, and shortness of breath. I feel bloated and have tenderness in my upper right side; apparently my liver is swollen. I only have to have gained 3 pounds to have these symptoms.
     I take my Lasix, Lanoxin, Coreg, Premarin, Aldactone, potassium and magnesium about mid-morning. I take my supplements a little later; my Coumadin and second dose of Coreg at dinner time; and Prinivil at bed time. I was dividing the Lasix into twice a day but my PCP said to try once daily. I am now on 80mg Lasix to see how that goes. I will see my new cardiologist on Friday for the result of my recent echo and will ask him some questions about this thumping. I hope your week is a good one too. We've been having a lot of rain. Maggie S. marjac@pro-ns.net


Jack's June 20 reply to Tony T's June 20, 2000 - Hi Tony, I applaud you on titrating your meds on your own, and going counter to what your doctor says. You are very brave. However, Accupril is not the potassium culprit. Potassium is messed with by diuretics. The common combination with Accupril is Demadex, which is a potassium-sparing loop diuretic. The addition of extra potassium from bananas could be really bad for you. Of course, foregoing the heart-sparing action of Accupril by cutting the dose so you can have an orange/banana feast could also be bad for you.
     To lower your blood pressure as much as you can, you should dress in natural cotton or even better, natural hemp shirt and pants. Ingest less than a liter of fluid daily (that includes drinking and fruits and veggies) and take plenty of diuretics. The less fluid you have in your blood, the less blood pressure you will have. Keep smiling, Jack. ;-) maddjak@hotmail.com


Tom S, June 20, 2000 - Hi everyone, Lately I haven't been able to get a single night's rest without a lot of fitful sleep that includes really bizzare dreams. Most of the dreams involve trying to beat a deadline to get to some destination, like an airport to catch a flight; and the path to the ultimate destination is through deserted factories, warehouses, up and down rickety fire escapes, through windows and desolate places that I don't recall ever being in. Anyway, I just wonder if I am the only one who has this type of less than restful sleep or if it is common among CHFers. By the way, I always more or less force my way awake so I never do make it to my ultimate destination; in my dreams, that is. bhigheart@hotmail.com


Renee M, June 21, 2000 - Hi all, I hope everyone is doing well. I have been reading some of the posts earlier this month about Coreg. It may seem as though very few notice any difference taking this drug, but I have. When I was first diagnosed with cardiomyopathy, I had a lot of tachycardia. My heart rate was rarely below 130. Even with other beta-blockers, it never got below 100. After taking Coreg, my heart rate now runs from 70 to 80. I have much less shortness of breath since taking Coreg. It did not help with fatigue or anything else but at least it did something for me. Yes, it was a tough breaking-in period while my body adjusted to this stuff, but it was worth it. Maybe it isn't that noticable for many of you but I am convinced that this drug is doing something important in there. Even if you don't feel it, if it helps prolong your life, isn't it worthwhile? So for those of you who can take it, hang in there and don't give it up because you don't feel anything change or because the breaking-in period is rough. I truly believe it's really helping us in the long run. Just my 2¢ worth for today. I'm keeping all of you in my prayers. Renee M. Auntonay@prodigy.net
 
Jon's note: Success stories are very important so we get both sides of every story! If you have a different take on something being discussed, be sure to post it so we see all sides.


Hope M's June 21 reply to Tom S' June 20, 2000 - Hi Tom, Beta-blockers are well-known culprits for vivid and bizzare dreams. I have less problems with this with metoprolol than with Coreg, though both are beta-blockers. Avapro is also known for causing sleep disturbances. Most of the time when I have anything which I consider abnormal, I pretty much chalk it up to the meds. Hope. hlmcneil2@netscape.com


Joe S' June 21 reply to Tony T's June 20, 2000 - Hi Tony, I never thought of dyes in clothing causing any problems but I'll sure look into it. Why do the foods that cause so many problems have to taste so good? I love cheese but when I eat it my heart not only starts racing, I start wheezing and sometimes get zits. The biggest culprits are onions, chocolate, MSG, walnuts, avacodos and strawberries. I have inadvertently eaten the wrong type of onion and had to lie down all day. I have found no solution to this except possibly 4 or 5 Tums. Funny thing is, Monday I had a Persantine DIMP done and for some strange reason I feel great. Maybe it was the chemicals they put in to expand my veins and arteries. Go figure! When I first started my log, I kept ignoring cheese as the culprit but one day my barber of all people, told me to try giving it up and it worked. I began to feel much better immediately. I sure love the stuff though. Joe S. jes@stevensonlighting.com


Tom B's June 21 reply to Tom S' June 20, 2000 - Whew! Are we on the same wave length or what? Yes I've had the restless, stressful sleep you described - exactly. You wake up exhausted, right? My doctor prescribed 100mg Trazadone at bedtime. This is a med which is usually used for depression but in my case makes a good sleeping aid. It works pretty well. Now if I can just get the neighbor's dog to can it. tbehan@earthlink.net


Barb S' June 21 reply to Tom S' June 20, 2000 - Hello Tom, My name is Barb and I have IDCM, CHF, LBBB and V-tach. I have also experienced the exact same thing many, many nights. I don't really have terrible or bad dreams but I do toss and turn a lot all through the night, or I'm up just from coughing. Many times my sleep is broken because I have trouble breathing or I get these (new for me) leg cramps that are painful. A lot of times though, it is just really hard to sleep and I end up punching the pillows, trying to figure out why I can't sleep and then eventually I give up. I have read that it is not good to stay in the same room where you sleep when this happens. So I always get up, watch tv or mostly play with the computer. Then I try again. I've also heard that this is common among CHFers. I think Jon talks about this in The Manual. I'm not sure because I'm also forgetful. Actually, this has been happening a lot to me lately so good luck and I hope you get more restful sleep. Please take care, Barb. musicalheart@hotmail.com


Lynn M's June 21 reply to Robin Lynn's June 20, 2000 - Hi Gus and Robin Lynn, Those explosive whacks to the chest both of you described sound a lot like some of the angina attacks I had last year. I would awaken from a deep sleep with the sensation that someone impaled me with a spear through the chest that went all the way through to my back. It would actually double me over. Do either of you have coronary artery disease? Just a thought, Lynn M. techndex@pacbell.net


Lynn M's June 21 reply to Maggie's June 20, 2000 - Hi Maggie and Tony, I am also coming to the conclusion that the pounding is worse whenever I'm retaining fluid. Last week when the pounding was bad, I was also getting wheezy like I do when I'm going into pulmonary edema. Does anyone else here make that correlation? Someone else here mentioned taking a deep breath to stop PVCs. Sorry, I keep scrolling up to find the post but can't find it. I've found that a hard cough sometimes works too. Lynn M. techndex@pacbell.net


Gus R's June 21 reply to Robin Lynn's June 21, 2000 - Hi Robin Lynn, Explosions, fireworks, shotguns, and ball bats, we're getting pretty technical here. I sure hope Jon is following this so he can upgrade his Medspeak page. Yes, your phrase "pulsates with a bunch of tiny little beats almost beating at the same time" pretty well describes my a-fib pulse. I've always thought it resembled the wing flutterings of a young bird trying to fly, start, stop, fast, slow, hop, and jump, downright spastic.
     Your shotgun is a little different than my electric fence. Most of it is the same but instead of bending over, I pop up. It's enough of a shock that I am not sure what actually does happen but if I'm sitting down when it happens, in what seems like a split second, I'm standing up batting my eyes like a toad in a hailstorm. As to not catching what is wanted with the event monitor, I suppose it's a case of waiting until the symptoms become more frequent, and then if you're still around, try it again. The good side of it for me is that I don't feel like such a fool for not wearing the monitor because I'm sure my luck would have been just like yours. Best wishes, Gus R. gus13@net66.com


Barb L S, June 21, 2000 - Hi, I just wanted say hello to everybody and thank everyone for your kind thoughts, words and prayers. In these most recent days, your prayers are actually helping us to hang in there. One person who e-mailed me said the exact words that I am feeling. This disease does get on my nerves, also has made me a very humble person and has changed my outlook on life in general, forever. Small things that used to bother me so much, do not now. If they do, they eventually go away. There's no time for chaos in my life. When it comes, I play with it for a bit and then throw it away and my faith is strong and has carried me and brought me this far. Actually, not just me, but our whole family. I'm having a much better day than yesterday. Yesterday I probably annoyed many people with complaining and lashing out. Once in awhile, it happens to me.
     We've also just found out some other news. Our son Alex (Ali) has had one of the many "coxsacki viruses" called "Hand, Foot, Mouth Syndrome." Wow! This is a strange illness with an even stranger name. He's been having a lot of pain all over and throughout his body. So of course we already had him to the doctor's twice this week, just to make sure everything is okay. We have just found out though that when he is better, he will have to have genetic testing because many coxsacki viruses lead to other devastating diseases like cardiomyopathy, meningitis and brain damage. Needless to say, he is at high risk for all because it comes from the virus itself, but has a greater risk of also developing cardiomyopathy. I can't believe I am talking about this. I have held it in all day and my fiancé does not want to talk about it at all.
     Please, please keep Ali in your thoughts and prayers. I can take it happening with me. I'm not sure how I or his father, sister, aunts and grandparents would be if anything were to happen to this precious little boy. He's had a long, hard fight already and has already fought off many bouts of bronchitis and pneumonia. Thanks for listening and please, everyone take care. God bless, Barb. musicalheart@hotmail.com


Eric's June 21 reply to Renee M's June 21, 2000 - Hi Renee, Just to concur with Renee's comments about Coreg: I was diagnosed with IDCM in July of 1998 and I had a lot of bad days until January of 1999, when I read about Coreg here. I convinced my cardiologist to give it a try and I went through that "getting used to Coreg" period like many have mentioned. Now, over a year on the max dosage of Coreg, I'm living an almost normal life again. No, I can't run the 5Ks I used to be able to do but I can walk them and jog about a mile of it. I haven't had a "bad" day in months - not several times a week like pre-Coreg. Coreg is no miracle drug (there is not one) but it has made a difference in my quality of life. Talk to your cardiologist and it might be able to help you too. Eric. edybs@ix.netcom.com


Robin Lynn's June 21 reply to Lynn M's June 21, 2000 - Hi Lynn, You know my cardiologist did the cath because my symptoms point to CAD but all turned out to be clean and clear. He really didn't know what was causing these things to happen. As time went on my left arm and upper chest tightness and "clamping" feelings got worse every day. It felt as though there was no blood going into my arm, causing it to be numb and ache all the time, and my fingers and hand would tingle. I think we have our answer now though: microspasms. They are spasms in the small vessels in and around my heart. Now I don't really know what is causing the spasms but I did some research and found that beta-blockers and emotional stress can be contributors to them, as well as cocaine use. Well, that's sure not it in my case! So the bsta-blockers for my IDCM may aggravate these spasms. The calcium channel blockers slowly dilate the heart, which is contraindicated with DCM. But hey, you can't have everything. If I were not feeling so badly before all the meds, I would try to say it is the meds, but I know that's not true.
     On the subject of retaining fluid and PVCs, I can tell you that during a certain time every month, I retain fluid like crazy and have SOB and all the classic CHF symptoms, with increased irregularities so badly that I really am down for about a week until it's all over. So my 2¢ is that yes, fluid buildup does cause more PVCs, or the PVCs cause fluid build up. Maybe the heart's inability to pump properly is what causes the fluid? What came first, the chicken or the egg? <g>
     Has anyone gotten any of these thumps and bumps on tape? If so, what did they call them? They are so hard to catch with monitors and 30 second EKGs. I'm pretty sure now that the "fireworks" are a-fib since they only happen with rapid heart beats. I would love to know about the shotgun feeling which can and does happen any time, anywhere. If these discriptions sound like something you know about and you have gotten them caught on tape, please let us know.
     Tom, I do have those dreams; Not every night, they seem to come in phases. Sometimes I awaken exhausted but don't remember the dream but think it must have been a really stressful one. So here's to all the thumpers, bumpers and midnight jumpers at Jon's. I love you all and pray daily that God will place His healing hands upon you all for one more day of health. Blessings, Robin Lynn. heartful99@hotmail.com


Jon, June 22, 2000 - Hi everyone, I'm off to see my doctor this afternoon so posts won't go up until later this evening. Jon.


Ruthie A, June 22, 2000 - Hi to everyone, I have been reading the posts daily and I have decided that we are a real lot. Of what I don't know, but a lot anyway! <g> Seriously, these days seem to have been tough for a lot of us. I really admire the fortitude you all demonstrate. It is a real encouragement to me.
     I had an epidural steriod injection into my spine yesterday to hopefully curb or eliminate the pain in my feet and legs. It was painful in places and tolerable in others. I was told that I would feel worse before I felt better and they were so right! The pain has been pretty intense, but seems to be diminishing back to the old levels. Time will tell if the injection did its job. In the meantime, the cortisone has done a number with fluid retention. Just overnight I retained enough fluid to become quite short of breath even when at rest. If I was not able to get the fluid off and quick, I could end up with pulmonary edema to the max and we all know that would mean a visit to Club Med, a trip I do not wish to make! So extra diuretics have done their job, albeit slowly, and my breathing is better. Hopefully I will be able to sleep flat tonight without struggling to breathe. I cannot elevate because of the pain in my back, so if I have breathing problems, I have to sit up all night. But if I can get some relief from the pain and be able to walk again without agony, then the SOB and the anxiety not breathing causes is worth it. I think. Ruthie. rlaba@mindspring.com


Pam E, June 22, 2000 - Hi all, I was started on metroprolol nearly a year ago now. My EF has gone from 40% to 61%. My other drugs kept it stable but I really think it was the metoprolol that did the trick. Pam E. gpcs@fastlink.com.au


Pam E, June 22, 2000 - Hi, I have a question. Does anyone know what you need to absorb magnesium? I have been taking 3gm a day for 6 weeks with no change in my blood levels. Does anyone have any ideas? gpcs@fastlink.com.au


Jon's June 22 reply to Pam E's June 22, 2000 - Hi Pam, This article might help a bit. According to all that I have read, blood (serum) levels of magnesium are of little accuracy or importance because most of the body's magnesium resides in the cells themselves. It is usually accepted that a 6-month course of supplementation is needed to bring low magnesium stores back to normal levels. That article describes another way to test magnesium levels. Jon.


Judith's June 22 reply to Carol's June 20, 2000 - Hi Carol, I read your post about at-home work. If this is not feasible, does anybody have any other suggestions for at-home part-time work? Judith1122@aol.com


Sylvia E's June 22 reply to Barbara's June 21, 2000 - Hi Barb, I also suffer from sleepless nights, bad dreams and leg cramps. In fact, some nights my legs are so restless I just can't stay in bed. Last week the doctor put me on one milligram Clonazepam tablets. They worked great but left me groggy most of the day. So now I just take ½ tablet and I get a full night's sleep, no dreams, and no cramping legs. Keep well, Sylvia E. syledmonds@aol.com


Lynn M's June 22 reply to Robin Lynn's June 21, 2000 - Hi Robin Lynn, Meds are always so convenient to blame. <g> Anyway, it sounds like your doctor may be thinking about what's called microvascular angina, which may be the same thing as what is called cardiac syndrome X. I'm not making this up! In microvascular angina, the coronary arteries are clear like yours but the miniature blood vessels spasm. Unfortunately, there is very little information on it here in the USA, with most of the research on it being done in Europe (according to a lady I know who was diagnosed with it along with CHF of unknown origin). I once ran a web search on cardiac syndrome X and came up with only one hit. After reading over a thousand web pages on cardiology doing research for a web site I'm creating, I have come across just one reference to microvascular angina, a mere passing reference at that. I still have to run a search, including in Medline about microvascular angina, to see if I get more hits. The 1000 web pages is not an exaggeration. I keep a log of them. So, you see how little known this condition is, if indeed that's what you have.
     Just the other day, I confirmed with the cardiac syndrome X lady that it and microvascular angina are the same condition. The reason I'm going on about this so much is that maybe you'd want to ask your doctor about both of these. I'm sure it's not helping your heart failure any.
     You asked whether it's the heart's inability to pump adequately that causes the fluid retention or vice versa. As I understand it from what I've read, the fluid retention is the result of the heart's inability to pump adequately. However, CHF is an extremely vicious cycle. I'm talking mainly about decompensated CHF, not compensated CHF where it's stabilized and not getting worse. The weaker the heart gets, the more fluid you retain, the less oxygen you receive, causing the heart to get even weaker and some ugly neurohormones to be activated which do yet more damage to the heart, causing yet more fluid retention. If anyone wants to read a really mind-blowing but very technical article on the pathophysiology of CHF, let me know and I'll provide the Url. It's a downright fascinating description of how the body tries to compensate for heart failure but ends up making things even worse. Anyway, the PVCs possibly increase because of the heart becoming more irritable as it fails. Remember what I posted the other day about AHA saying that ventricular arrhythmias are almost omnipresent in CHF, which would include PVCs. Also, when we retain fluid, at least some of us also retain fluid around the heart itself (I do), which probably also increases the number of PVCs. Some chicken, some egg, eh? Lynn M. techndex@pacbell.net


Jon's June 22 reply to Lynn M's June 22, 2000 - Hi Lynn, Go to the Usenet group sci.med.cardiology and you'll get lots of references to syndrome x info all over the web. Leave off the word "cardiac" in your searches also. I get about 2000 returns in Google on it, very few dealing with the other x ysndromes like triple-x or fragile-x.
     The only thing I would add to your description of CHF above is that the neruohormonal system is over-activated even in compensated CHF and only the hormone-blockers we take (ACE inhibitors and beta-blockers) keep us all from slipping into decompensated heart failure. Those neurhormonal responses start within literally a few seconds to a few minutes of weakened heart action in most cases. Jon.


Thelma's June 22 reply to Robin Lynn's June 21, 2000 - Hi Robin, Concerning that time of the month, I have always had problems with palpitations even before DCM. When I asked my docs about it, they had no clue. Well, I am almost convinced that PACs, PVCs and whatever else is aggravated by hormonal changes and especially fluid build up. No matter how well I stay on my low-sodium diet and no caffeine, a week before my period is terrible! My experiences are like I'm about ready to pass out and feel no heart beat at all with lots of thumping going on. Most likely it's a-fib but all the holters have not been able to catch this. I have also worn the 30-day holter with no luck. Maybe if we all wear holter monitors the rest of our lives there would be no palpitations! Thanks for addressing a concern I've had for over 20 years. Thelma. tcull@prodigy.net


Aubrey, June 22, 2000 - Hi all, First off I would like to praise the Lord for the much increased health and energy I have been enjoying of late! This board has had a lot to do with it. Thanks to all of you. Recently someone mentioned an Internet site with loads of CoQ10 information. I would like to print that to take to my physician and I want to give a copy of it to an 87 year old friend who also suffers with CHF. Thanks in advance, Aub. aubrey.mutch@sk.sympatico.ca


Cheryl L, June 22, 2000 - Hi, I'm new, as I am sure you know, although I am not really new to CHF. I got it and cardiomyopathy (virally they think) 5 years ago. I was misdiagnosed for 9 months before I finally realized that this dcotor was killing me. I stumbled on this web site today and I know that God sent me here. I found out today that my ejection fraction is now 18% but didn't have any idea of what that meant until I found this site. Now I know that I have others who will know exactly how I feel. No one has given me the information that I found here, not just medical but also in things to expect from The Manual. I was so depressed about things but now I know that they are "normal" for people like us. After reading some of the other questions, I feel that I know you all. I will check in daily when possible. Cheryl L. HealedHart@aol.com


Pat L's June 24 reply to Pam E's June 22, 2000 - Hi Pam, That was quite an improvement on metoprolol. How much have you been taking? It wasn't doing me any good at 100mg twice a day so I went back on Coreg. Maybe I needed a higher dose of metoprolol. Pat. patlat@yahoo.com


Joe S' June 24 reply to Judith's June 22, 2000 - Hi Judith, In today's world many people make a fair to good income at home. I earn $500+ every month from my web site. There are also lots of people buying and selling products on E-Bay. Some even go to garage sales and then sell what they get over the Internet. Find an unusual product and get your own site, and away you go. Take a look at www.stevensonlighting.com. You don't have to get this complicated, and a site only cost $40 through netscape.com. Go for it. Joe Stevenson. jes@stevensonlighting.com


Jon's June 24 reply to Joe S' June 24, 2000 - Hi Joe, I just wanted to put in my 2¢ worth about possibly making money on the web. Anyone who is fired up, please take a crack at it and I wish you the best. It can certainly be done and quite successfully at that. A few things to keep in mind just so you aren't unpleasantly surprised:
     It may not be fun and easy. Having pulled this site off the ground with much sweat (and it took a year to do so), I think it is probably easier to move an existing product's sales onto the Internet than it is to succeed with something entirely new. If you provide an actual product rather than an online service, remember that you will need to be up to packaging and shipping the product, as well as providing a warranty of some kind. That means being able to service the product or handle returns and refunds, which means cash and extra product on hand. If you've run a business before, this is no big deal and just something you expect but if you've never managed a business, such things can be truly unexpected. Don't forget insurance for shipped products if their value makes it wise.
     Now, don't get me wrong - if I lose my Disability at some point, I'm going to try making a living off the web first, myself. ;-) A new product can take off like a rocket and make you a very nice income, or even a slight twist on an old product can succeed nicely. Just be prepared for more work than you expected. After all, isn't that how it always is with everything?! <lol> Jon.


John Len's June 24 reply to Carol W's' June 20, 2000 - Hi, Another area of interest might be volunteering. I work one day a week for 4 hours at a marine science museum. It gets me out of the house and is something I can handle. I could work more days or longer hours so the time is flexible. Something like this might be of interest to some of you. a_lenny6@hotmail.com


Joy R, June 24, 2000 - Hi, I don't think I have posted since the end of March when I had my latest surgery, an ileostomy and gastrotomy. It was really hard for me to adjust to these changes in my body image. I have just recently returned to the posts again and it was amazing, the descriptions of nightmares, leg twitching and chest pain that feels like the heart explodes and the pain moves outward. I have this pain and have heard of no one else describe it like Gus did on June 19. When I get it, I'm sure that it is my last breath. The sudden pain is like a fire in my chest and it spreads out to my neck and down my arm. It usually lasts about 15 minutes and then is over. I usually have shortness of breath with this and it has come at rest and during activity.
     I have a Hickman cathether, which is a cathether coming out of my chest that is inserted through the subclavian vein into the vena cava. I am on IVs all the time and I actually felt maybe it was an air bubble or a small clot causing this pain, but now I wonder. When I exert, I get the thump feeling in my throat and that there is pressure building up and going up my throat and then it feels like it is going to suffociate me. It usually puts me into a fit of dry coughing, getting very tacky, very unpleasant. I just though I'd vent a little since so many posts described what I go through. Just my thought for the day. Joy. wapalaremi@home.com


Barb L S' June 24 reply to Donna Z's June 18, 2000 - Hello Donna, My name is Barb and I just wanted you to know that I get terrible leg cramps now. I never got them before. I want to suggest though, that you don't rub them at all, ok? I am not a doctor but did listen to their advice so I'm passing it on to you and anybody that needs it. When I had rubbed my legs a lot because of the cramping, they told me it could cause a blood clot. My homemade remedy is to stand on my tippy-toes. I know it sounds funny but it works. When I was pregnant with my daughter 18 years ago, someone told me to do this and it worked. It might also be good to have your potassium levels checked. God bless, Barb. musicalheart@hotmail.com
 
Jon's note: Wouldn't that mean all massage is highly dangerous?


Barb L S' June 24 reply to Sylvia E's June 21, 2000 - Hi Sylvia, Thank you for taking your time to post back to me. Those leg cramps are terrible. It was a quite funny because the only time I had them before, was when I was "with child." So we were a little concerned, but everything is ok except with our son, Alex. I hope you start to feel better and take care of yourself, because I know how they feel and they are painful. Please stand on your tippy-toes. It may sound strange, but it works. Ask your doctor to do blood work and to check your potassium level. We lose alot of potassium when using water pills and running to the bathroom like crazy. Low potassium will cause these terrible leg cramps. Again, take care. Barb. musicalheart@hotmail.com


Barb L S, June 24, 2000 - Hello everybody, I wanted to again thank you all for your thoughts and prayers. I have received a lot of e-mails and I promise to answer all of them. I couldn't reply because Alex was admitted into the hospital. He is home now, still recovering. Many people have tried to lighten our burden and make us feel better by down playing the coxsackie virus. However, because of what Alex has gone through for 7-8 days, we have done research on this. His pain did not fit "Hand, foot, mouth syndrome."
     After my being sick for so long, we don't scare that easily anymore, not even with our children. We are cautious but do not panic. I'm sure many people here know what I mean. I'm writing this because anyone who has an infant, baby or toddler under the age of 3 who gets this virus should not look at it as a simple virus when the doctor says to. We made that mistake for everyone. We had to confront Alex's doctor and found out that she thought that's all it was. He still has a lot of recovery. It will be another 7-10 days and when he does recover, he does have to have testing done so please keep all of your prayers going. There are many Coxsackie viruses that can cause secondary diseases such as menengitis and cardiomyopathy. I hope everything is ok with everyone and thank you for all of the prayers and e-mails. Barb. musicalheart@hotmail.com


Sally R, June 24, 2000 - Hi, If it's in The Manual, I missed it. I just hiked Victoria Falls and camped in Botswana, all with an EF of below 20. My question is, "What is compensated heart failure?" I have seen it alluded to but never a good comprehensive discussion. Thanks. swool@mindspsring.com


Jon's June 24 reply to Sally R's June 24, 2000 - Hi Sally, It just means that your meds and life style keep you out of heart failure. You may still have heart disease but you do not actually have "episodes" of CHF - edema, shortness of breath, nausea, severe fatigue, etc,... If your meds cannot control your CHF episodes or if you have CHF to a significant degree all the time, you have decompensated heart failure. I hope that helps. (and don't forget Medspeak <g>) Jon.


Jon, June 24, 2000 - Hi guys, Leland brought upcoming CHF workshops for CHFers and caregivers to my attention in Orange, California and Laguna Hills, California. I'm not sure of the dates and times, but you can call and get info if you're interested:
Kaiser Permanente
Health Education
200 North Lewis Avenue
Orange, CA 92868
(888) 988-2800


John Len, June 25, 2000 - Hi, I just want to add a note about home businesses. Most cities and states require a business license. You need to register with the infernal revenue service to get the forms and a number to report your income from the business. Working out of my home was easy compared to the government bookwork involved. John. a_lenny6@hotmail.com


Robin Lynn, June 25, 2000 - Hi all, Gus, I know what you mean about the jump up feeling. When I have them while I'm sitting or lying down, I also jump up like I need to run from it. I have always thought it was a panic type of reaction that causes that firey feeling. When they hit when I'm active, they nearly knock me down. I think I am having a-fib, just not confirmed. Thank you for all the info and for being so open about what your experiences are.
     Lynn, I also found one article on syndrome X and like you said, it was almost in passing. It seems that it is really just now being discovered and they have a lot to learn about it. Have you ever read all the posts about panic attacks and PVC problems at CCF? I am no expert but I believe that they are on the breaking point to finding out why these things happen to so many people. So many of them sound like me years ago and so many of us go through the "get over it" stage. I am willing to bet that this syndrome x is is more common they they imagine. Thanks for the info and I am still gathering info when I get time. Between my 2 little ones, the house, and all the other things I get myself into, the only time I have for research is late at night and that's not good for me. E-mail me anytime, if you want.
     Hey Jon, I went looking around the Url you put out for syndrome X and didn't find the right place. I am not all that good at it and will try again. Thank you for your research on this too. Anything you can tell me is great.
     Well, I worked a bit too hard these past couple of days and you talk about thumps and bumps! They are so bad the past day or so that my head feels like it will explode and I'm gonna be sick any moment. Do you all ever get really bad headaches that you attribute to heart rhythm irregularities? I know we just discussed migraines but this is not migraine, it's plain old hurtin' head with shooting pains that come with PVCs. Maybe with me, its the vessels, the syndrome x? God bless, Robin Lynn. heartful99@hotmail.com


Jon's June 25 reply to Robin Lynn's June 25, 2000 - Hi Robin, I gave an Url to my heart links page - the section that contains a link to sci.med.cardiology - the Usenet group (news group) that has had many many posts about syndrome x over the past few years. I suggest also going to a fast, wide-ranging search engine similar to google and typing in "syndrome x" or "syndrome X" AND (heart OR cardiac), or something similar and browsing the returns. It's a pretty widely discussed subject that I have ignored for years because the discussions seem vague. There are studies concerning cardiological syndrome x in Medline. If you can't find what you want, let me know and I'll look up some more specific Urls. Jon.


Tom S' June 25 reply to Sally R's June 24, 2000 - Hi Sally, According to one of my doctors, a person with an EF in this range would be lucky to make it to the bathroom in their house. bhigheart@hotmail.com


Jon's June 25 reply to Tom S' June 25, 2000 - Hi Tom, That would be true for some people, no doubt about it. It depends on how soon after diagnosis, how fit a person is just before getting sick and more. When I was first treated for CHF and meds had reduced my initial edema, I was 5'8" tall and 199 pounds of solid muscle, conditioned to working in no air conditioning in summer and with little heat in winter, throwing Red and White Oak lumber around at high speed day after day and working out with weights in the mornings as well. I had an EF of 13%, yet I trimmed trees and did all the yard work; lots of house cleaning; all the grocery shopping, cooking and dishes; woodworking projects; and more, for quite some time. I really noticed very little bad effect from CHF. Over time, as I slowly deconditioned, chronic oxygen shortage to my organs started to tear me down and my heart continued to weaken despite meds and exercise. I was able to do less and less despite the fact that my EF rose from meds. These days, I'm about as fit as blob of jello.
     So, it all is highly individual and depends on many factors, including the amount of disease progression so far; more than just numbers. It's very common for a CHFer to have a significant rise in EF and yet be able to do far less as their disease progresses. It's a nightmare for those of us facing SSD reviews.
     With that said, I would never have gotten so carried away with traveling and hiking after diagnosis because I was told - quite correctly - that extreme over-exertion could make my heart weaker faster and hurt me in the medium to long term. Jon.


Pete C, June 25, 2000 - Hi, I just wanted to say hi to all my friends in the chat rooms and apologize for not being able to attend the sessions due to work requirements: second shift and weekends. I hope everyone is doing well and may our heavenly Father bless us all. balooncrew@aol.com


Barb L S' June 25 reply to Jon's June 25, 2000 - Hi Jon, Honestly, just your question makes a lot more sense than what the nurses and doctors told us because even when rubbing my painful legs for a little bit, it helped. Also, I would be lying if I said I have any answer to your question, "wouldn't that mean that all massage is highly dangerous?" I don't think so. We really didn't even think that massaging my legs would lead to anything else. We never even thought about that. Legs hurt. Answer, rub them. No, I definitely don't feel that massage in general is highly dangerous. Again, I could be wrong. Now, I really want to know your take on this since it is a recurring pain night after night, as it seems to be for a lot of people. For me, the only thing that eventually stops it, as I've said, is standing really hard on my tippy-toes. I definitely do not want to give anyone the wrong advice. I am not a doctor. So, if you can tell us your opinion, we would appreciate it. Thanks and take care, Barb. musicalheart@hotmail.com


Jon's June 25 reply to Barb L S' June 25, 2000 - Hi Barb, Night time leg pain needs to be distinguished from daytime leg pain and from all-the-time leg pain. Leg pain needs to be distinguished from leg cramps, which need to be distinguished from restless legs symptoms. The more specific you can be when you talk to your doctor about this, the more likely it is that he can find a cause and be able to help you. Keeping a log including description of symptoms, date and time, as well as any activity occurring at about that time helps.
     I have Restless Legs Syndrome but it manifests as much in constant pain (day and night) as it does in twitching when I lie down. On this one, ya gotta talk to your doctor. It's impossible to diagnose leg pains, cramps, or aches long-distance even for doctors. Things to consider are electrolyte imbalances, restless legs syndrome, peripheral vascular disease, coronary artery disease, structural foot problems and more.
     I asked the massage question because this came up once before and I asked a very good CHF doc about it. He said that massage should not pose any significant risk for causing clots to travel in or from the legs or anywhere else (to his knowledge). I just wanted to see if your doc had said that massage did pose a threat. If he had, I would need to start checking into it again. ;-) Jon.


Danny H, June 25, 2000 - Hi, From reading about CoQ10 in various posts, I decided to try it. I initially bought it at General Nutrition Center in 100mg capsules at 30 for $34.99. I recently found it at Walmart in 100mg capsules for $15.84 for 30 capsules. Does anyone have an opinion as to whether the Walmart Spring Valley capsules might be the equal of GNC capsules for half the price? I've only been taking it for a little over 2 weeks and notice no difference but my doctor told me that any effect I perceived in fewer than 3 months would be a placebo effect. In addition, I am starting to watch my fat intake to some degree and have stopped adding salt to my food. So far I don't see any effect from that either! Feedback please, Danny H. dananjan@otherside.com


Sigmund B, June 25, 2000 - Hello all, I read your posts daily and have learned a lot about CHF. Kudos to Jon for making this forum a necessity. I am an old-timer, almost an octogenarian. I had a double by-pass in 1984. My grafts are now worthless. I've had a pacemaker and defibrillator for several years and my meds pretty well fit into a pattern that matches those I've been seeing in the posts.
     My problem is this: I am already plagued with shortness of breath and fatigue after a few hours of activity in the morning. I've developed an inguinal hernia which is large and unsightly while I am up. It generally disappears when I lie down. I've tried several supports but they are not very effective. I told this to my cardiologist, who sent me to a highly recommended surgeon. If I have the ruptured area repaired using a local anesthetic, my cardiologist feels it is safe. I'm classified as a class 3 patient and my quality of life is poor. I wonder if anybody with CHF has had any experience with surgery. Incidently, I use an oxegen generator when I go to bed. It has kept me alive since the onset of CHF about a year ago. Again, thanks Jon, for making me feel like part of the family. sbegun@hoflink.com


David A, June 25, 2000 - Hi, I have a question for the Coreg takers in this boat. Have any of you been approached by your heart clinic professionals to have you increase your dosages of Coreg from 25mg twice a day to 50mg twice a day? Bearing in mind that your weight is under 187lbs. If so, how did it (is it) go (going)? Presently, I am taking 25mg twice a day. What were the explained benefits of this increase?
     The heart failure clinic I attend at Kaiser, San Jose, California has started me on this dose increase beginning a week ago. They gave me a choice of how to begin the stepped increase. Either we try an increase of an additional 3.125mg both morning and evening or a once a day increase of 12.5mg. I opted for the 3.125mg step scenerio, remembering when I was originally ramping up on Coreg that I had some rocky encounters beyond 18mg twice a day. So far, so good with the increase, with some dizziness in the morning after taking the medication. It's funny; taking Coreg in the morning (after eating) may give me a swimming feeling in the head but the evening dose is fine. Maybe I'm not awake!
     Also, has anyone experienced finger cramping when you least expect it? I've run into this too, along with the occassional leg cramps. When I get leg cramps, I get up and force myself to walk around and stand on my heels with my toes in the air - not a pretty sight! Hand cramps are hard to work out and can make you look arthritic before your time.
     One final item: I've been very reluctant to travel by airline since I started at the heart failure clinic 2 years ago and going to Stanford to be considered for a heart/lung transplant. So far I have not been put on a list but my test numbers look like my college grades - low. Have any of you traveled by airline recently? If so, were there any problems or things to look for besides symptoms we've been trained to be aware of by our clinics? Believe it or not, I have more but will ask later. It's my one year anniversary for my AICD implant (toot horns, drop confetti) and so far I haven't needed it. Dezen@worldnet.att.net


Barb L S' June 25 reply to Jon's June 25, 2000 - Hi Jon, I have a question that we have asked doctors and they seem to have a different point of view about this. When all is still and quiet, and I have no signs of active heart failure, does this mean that I still have heart failure and it is decompensated? Or is the heart failure actually gone and I'm pretty much back to normal? In other words, does the heart failure itself ever go away? Then when I retain fluid, cough, can't breathe and so on, it's back? Some doctor's say that I don't have it at all and others say that I do and will always have it. It just isn't causing any severe symptoms at the time. If anyone knows the answer to this, can you please let me know? Thank you and take care. God bless. Barb. musicalheart@hotmail.coms


Jon's June 25 reply to Barb L S' June 25, 2000 - Hi Barb, In a way, they are both right. Without your meds you would be "in" CHF all the time, so in that sense you always have it - but it's compensated. That means your meds are compensating for your weak heart so you don't have symptoms all the time.
     On the other hand, technically, whenever you don't have the symptoms you don't have CHF. That's why we are said to be "in" CHF when our symptoms flare up. After all, as The Manual says, CHF is defined as the set of symptoms caused by a weak heart so if there's no symptoms, technically there's no CHF.
     So if a doctor says you do not have heart failure, it's because you are not having obvious symptoms at that moment. But you may have CHF later that same day if your symptoms come back. On the other hand, some doctors (like mine) say I have "compensated CHF" when I have no symptoms. That's because he knows that without my meds and fluid and sodium restrictions I would quickly "go into" CHF and stay there. I hope this helps. If not, feel free to ask again or maybe someone else can explain it better. Jon.


Ben B's June 26 reply to Jon's June 25, 2000 - Hi Jon, It's 3 1/2 years after diagnosis, with an EF of 20-25% and I'm still waiting for the decline. Everbody is different! I walk 4 to 5 miles daily, followed by a 10 minute swim, sometimes in the ocean. My doctor has said this is okay and what's the difference between a walk on a treadmill and a walk in the woods? I traveled internationally for a year and a half with my job and an EF of 10-15%. The work involved multiple walks up flights of stairs at factories in foreign countries. My doctor wasn't too keen on this but mainly because I was in third world countries without proper medical care. I don't do this anymore, but as long as I am able, I am going to enjoy life. bdbrinkman@juno.com


Jon's June 26 reply to Ben B's June 26, 2000 - Hi Ben, The key here is that everybody is different. I strongly suspect that I would still be going strong if my personal physician hadn't so miserably misdiagnosed me and thus prevented proper treatment for so many months. My heart just got weaker and weaker. The earlier in the disease process you are diagnosed and properly treated, the less damage your heart sustains. The cause of a person's CHF also comes into play here. I do think one can further damage their heart by overdoing but again, everybody's level of capacity is different. The main thing is to really truly pay attention to your body. Jon.


Jack's June 26 reply to Danny H's June 25, 2000 - Hello Danny, A couple of answers: CoQ10. Pretend you are in farm country. Everywhere you look are big grain silos and all the companies come to buy corn or oats or wheat to use in their foods that go to the grocery store. Well, it's the same with CoQ10. It's made in Japan and shipped in massive quantities all over the world. Different companies buy the powder and put it into capsules or mix it with different things and put their label on it - but it's all the same. So if Elmer's market is selling 100mg capsules 30 for $30 and Charlie's is selling 100mg capsules 30 for $10, then Elmer is ripping you off.
     Now the salt question: It's not just "stop adding salt to your food." The important thing is to quit buying food that has salt in it. One bowl of Campbell's soup has more salt than you are allowed all day! You gotta read the label or start buying fresh unprocessed food. I really think there is a conspiracy among food processing companies to kill us all off or drive us all crazy by polluting our food with salt and sugar. Buy a bottle of balsamic vinegar and use it instead of salt. And stay out of the aisles that have cans and jars in them. maddjak@hotmail.com


Joe S' June 26 reply to Jon's June 24, 2000 - Hi Jon, Regarding Internet selling, what I did was get other people's product and catalogues, and designed a web site to match, using their products. I had to train myself to be able to talk intelligently and now I rarely even touch the product but have the manufacturer ship direct. There are tons of things out there that no one markets very well. You just have to look. As far as I know, I'm the only one who does it with the huge product line I have. Joe S. jes@stevensonlighting.com
 
Jon's note: Need a partner? <g>


Barb L S, June 26, 2000 - Hello Sally R, Tom S, and Jon, Sally, you had said that your EF is 20%. Mine is between 15-25%, which keeps me constantly going for transplant evaluations. They have always told me that they cannot give us an exact number. How true this is, I don't know. All I know is that I also have compensated CHF and thank you Jon, for your explanation. Even with an EF of 15-25%, there have been a few times where I feel better than someone with a higher one, like my father who also has heart failure and his EF went from 25% to 50% - and as a family, we are happy about that. He's 81 and hyper, so it was not a good mix at all. I run around like crazy on a great day, which happens about a few times a year and enjoy myself! I'm adopted so it's very odd that my dad had been diagnosed with CHF about 9 months later than me.
     It seems that I have a lot to learn or at least attempt to concentrate and take in what my doctors are saying. I have already told someone from here not to hold me hostage for not remembering everything they have said. I feel so fatigued and now am attempting to fight by reading something every day, even if I have to force myself. It gets very frustrating because I have to read over and over again. So I just put the book down, take a break and start all over.
     It seems that the more I learn, the less I understand. Jon, I know that I cannot stop meds because I will get sicker. My Vo2 is 15% this year and has dropped from 17-16% in the past 2 years but my echo looks a little better. They really don't want to go into it with us because they don't want us to get excited. Maybe it's just because I've been in CHF more in the past 2 months.
     My leg pains are also different although I don't know what Restless Leg Syndrome is. The leg pain I'm referring to is very much a "charlie horse" type pain and my legs, feet and toes tighten up in a very painful way. Also, I do have a different type of leg pain which I know comes from active CHF, and feels very much like the pain I get when my potassium is low. However, my potassium has not been low. They just hurt so badly. We just keep rubbing them and that's when the doctor had said that on the last painful occurence, not to do that because of causing clots. So when I go to New York again, I will ask my CHF and pre-transplant doctor what to do or I will just call. Thank you for that information.
     Someone mentioned in a post that a person with an EF of 15 probably couldn't make it to the bathroom. I don't agree, only because when I was initially diagnosed, I had a 10% EF and had actually gone through labor and delivery of our son. So anything is possible. That was 2 1/2 years ago. I have a very unconditioned body now too and a lot of things I attempt to do are harder because I have no muscles in my legs or arms and many other places! This is the most unconditioned I've ever been in my life. In the past 6 months they were going to start cardiac rehab and kept stopping it, waiting for me to get a little better. So, we will see.
     Thank you to everyone again for all of your thoughts and prayers for our son Alex. There are many special people praying for him and we know that's what will get him through. He's feeling a lot better. He's fever has broken and we are not looking to the future with anxiety anymore, concerning his testing. Whatever happens or is meant to happen, will, no matter how much I and his father cry or say why. We've been through a lot. My faith is like a light in my life and eventually always takes me to where I need to be. My 18 year daughter Shanon, who didn't even know how sick her baby brother had been, asked me to join a Bible study with her. She had already set it up so they will come to the house because I really can't get out, unless my fiancé is home and helping me.
     Also, Jon, you had mentioned SSD. When we had first come to your site about a month ago, we were about to be evicted because we've had to live off one income for 4 people. I have gone through so much just to finally get my SSI, SSD and medical coverage. It has been a nightmare because they said that I was not disabled according to their standards. It took getting an attorney after almost 3 years and setting up an appeal with a law judge to get anything. If a newspaper article hadn't been done or some kind of benefit that would be in the paper, my money would still be sitting on his desk, so to speak. It's terrible and when I feel better, I want to do something in that field to help people with CHF get what they have worked so hard for. God bless, Barb. Musicalheart@hotmail.com


Jon's June 26 reply to Barb L S' June 26, 2000 - Hi Barb, Your leg pain sounds more like cramps, which is much different than my leg pain. You might want to try taking a magnesium supplement for 6 months and see if it improves. You can read about Restless Leg Syndrome at www.rls.org. I am personally convinced that there is a type of chronic and severe leg pain that comes with CHF for many people. My doc's nurse agrees but he doesn't. Go figure.
     Hang in there - Vo2max can improve too. Mine went from 13.5% to 20% in the past year after having gone down 4 years in a row. The only thing I did differently was take supplements a lot better than I used to take. Jon.


Gene S' June 26 reply to Barb L's June 24, 2000 - Hi Barb L, I was reading your post about not rubbing your legs and that is what my cardiologist told me also. He said that rubbing your legs or arms can cause a blood clot to break loose. He said that a regular back massage is different than rubbing your legs. A neighbor of mine has a lot of leg pain and she has a home remedy that she says works. She lightly pats on, or pours on, apple cider vinegar and she says that it really helps with the pain. It could be worth a try. Bye. gene51s@netscape.net


Jon, June 26, 2000 - Hi if anyone has an email address of dwilson7@uswest.net or has ever had this e-mail address, please contact me at misterbooboo@prodigy.net. Thanks, Jon.


Jon, June 26, 2000 - Hi everyone. I have had lots of problems getting to my own site for the past 2 days due to geocities having major technical problems. So if posts are extrememly late, I apologize.
     I am setting up a CHF Specialist Listing on my site, with a lot of help from volunteers who are helping me with everything from page design to footwork. As soon as geocities gets its access problems straightened out, I am planning on making the page available to doctors so they can add their practice to the list. Please e-mail me contact info for your own CHF specialist if you woud like to see him listed on this page. I need:

Doctor or practice name
Doctor's credentials if you know them (MD, FCAA, etc,...)
Location - street address, city, state, country, zip code
Phone number with area code
Url of doctor's or practice's home page if there is one
Doctor's e-mail address if there is one
Number of cardiologists in the pratice (if you know)
Whether he/they specialize in CHF patients or not (if you know)
Any comments

     As long as you include the street address and phone number, either me or a member of our "team" can find out the rest if you aren't sure, so don't sweat it if you don't know some of this info. I need everyone's help to make this list work, so please send me this info if you can. This list includes doctors from all over the world or at least I hope that it will eventually, so if you live outside the USA, please send me your doctor's info anyway. Thanks, Jon.


Tom S' June 27 reply to David A's June 25, 2000 - Hi, I have been on 25mg Coreg twice a day for about 3 years now and just this past week my doctor wants me to cut back to just 12.5mg twice a day to see if that may be causing some severe fatigue I am experiencing. While I am significantly larger than you (316 at last weigh-in), I was about 216 when I started on Coreg. My doctor also wants me to discuss some weight loss therapies with my regular medical doctor, which he said may include some medications. By the way, he wants me to reduce my Coreg dose for 3 weeks and see if there is a difference. Perhaps there is a correlation between Coreg and fatigue levels. Right now the jury is apparently out on that score and we are in testing mode. bhigheart@hotmail.com


Pam E's June 27 reply to Pat L's June 24, 2000 - Hi Pat, I am only on 50mgs of metroprolol twice a day. It has gone from 40% to 54% in 6 months. I must have been lucky. gpcs@fastlink.com.au


Pam E, June 27, 2000 - Hi All, I would just like to add my name to the list of people who suffer from Syndrome X. We are looking at either esophageal spasm or Syndrome X. I personally feel I suffer from both. On close scrutiny of my chest pain, I seem to get 2 different types. Since we have gotten this close, I have been more concentrated on the events of the pain and analyzing them. Pam. gpcs@fastlink.com.au


Bev T's June 27 reply to Tom S' June 25, 2000 - Hi Tom, Tell the doc he'd better study more patients. My 80 year old mother played golf twice a week and walked a mile a day with an EF of 10%. Go figure, Bev. Mtnmama008@aol.com


Jack's June 27 reply to Gene S' June 26, 2000 - Hey Gene and everybody else, I'd be leery about rubbing vinegar on my body because vinegar is acetic acid and it can cause burns and skin damage. Jack. maddjak@hotmail.com


Ben B's June 27 reply to Jon's June 26, 2000 - Hi Jon, I agree with you 100%. Nobody should overdo it, and I didn't plan to advocate that. Also, I am not implying I am in some sort of Olympian condition. The trick is to find out what is within your capabilities. Fortunately, my doctor sent me to cardiac rehab early and although I had to fight my insurance company to pay for it, it really paid off. Although I walk a long distance, I take a long time. I start slow and bring my pulse up, then slow down at the end. I never really get out of breath. I know I am very lucky to be able to do this, as some people would strain to walk a block or so. I know I am also very lucky that my internist diagnosed me right off and sent me to the heart clinic. As such, I have never been in the hospital except for tests. I know many people are not this fortunate.
     Also, although I hate to admit it and really fought it, being off from work the past year and a half has made me feel a lot better. All the stress, long hours, commuting and lack of sleep it caused was far more debilitating than these strolls I take now. If I continue to feel better I may try to find some occupation that is less demanding. That remains to be seen. Then again, I know that I could get sicker all of a sudden or drop over from SCD. I guess I'm like everybody else and take it day to day. Anyway, these walks are now one of my few daily responsibilities, so I'm glad I can still enjoy them. bdbrinkman@juno.com


Jon's June 27 reply to Ben B's June 27, 2000 - Hiya Ben, You'll appreciate this one. I was walking my dogs around the block last year. Eventually, I got to the point where I couldn't really take the heat and humidity of summer but I kept trying to walk the dog anyhow. I ended up stopping in the middle of my walks and sitting down on the sidewalk with my dog in a sit-stay beside, me while I caught my breath to finish the walk (we live in a roller coaster area of hills so there is no level ground). After awhile doing this, it became apparent that my neighbors were worried that if I keeled over on the sidewalk, my Rottweiler wouldn't let anybody near me to treat me so I had to quit. Needless to say, I now walk on the treadmill in our living room. ;-) Believe it or not, my male Rottie will also walk on the treadmill when he feels like it. Jon.


Hope M, June 27, 2000 - Hi everyone, Last month my cardiologist switched me from dyazide to Lasix and Aldactone. I now have a headache that never goes away. Please e-mail me if you have experienced this problem, and let me know if the headaches eventually went away, or if you found any cure. Thank you, Hope. (last time I posted I had .com at the end of my e-mail address, but it is actually .net) hlmcneil2@netscape.net


Donna Z, June 27, 2000 - Hi, Has anyone seen information on the net that they are using for CHF at the University of Pennsylvania? I saw a small blip on the health segment on TV last week and will not be down to Penn until mid-July. It looks like a net that you put delicate laundry in and they place it over your heart. That's all the information I got on this and have no idea as to who it would help and at what stage. Donna. dzak@worldnet.att.net


Jon's June 27 reply to Donna Z's June 27, 2000 - Hi Donna, You should be able to read about it here. Unfortunately, my security settings don't allow me to view their site and their web master has not replied to my message so I can't tell you much. It's a restrictive device to physically prevent your heart from enlarging. It literally forrces your heart to stay a certain size. Personally, I 'm a little leery of this one but like I said, I have no further information. Like the CHFer with a poor memory that I am, I also didn't save the name of the reader who alerted me to this device recently, but thank you whoever you are! <g> Jon.


Jon, June 27, 2000 - Hi everyone, I got a quick reply from a CHF specialist I trust about the rubbing legs and blood clots question. He says that in general, the risk of thromboembolism (throwing a clot) is low for CHF patients. So there is no clear recommendation that all patients be put on a "blood thinner." However, if a person has or had a recent deep venous thrombosis (DVT - clot in the veins of the leg), then rubbing the legs might not be a good idea. He suspects that many of you are talking about night time cramps, which he says are a frequent problem but can be addressed, and that you should definitely mention it to your doctors. Jon.


Bill D's June 27 reply to Hope M's June 27, 2000 - Hi Hope, My Mayo Clinic Pharmacist CD says headaches are a "less common" side effect of Aldactone. It didn't say headaches are a side effect of Lasix. Why don't you skip a couple of your Aldactone pills and see if it has any effect on your headache? Bill D. billdog@gate.net


Robin Lynn, June 27, 2000 - Hi everyone, Okay Jon, I found lots and lots of studies being done on Syndrome X. I have read through about 25 of them. For most of it I need a medical dictionary to assist me but I got enough info to realize that in one study or another, all my symptoms including left ventricular dysfuntion and cardiomyopathy are mentioned as being associated with it. I was really shocked to see one study that discribed the results of my stress test to a tee: the myocardial ischemia, abnormal wall movement with activity and stress, cardiomyopathy and left ventricular dysfunction; it was all there. One study even links the cardiac microvessel disorder (syndrome X) with migraines! I must say that there were also a few opinions that this condition is benign, although most of the studies are looking into the effects it has on the heart. One that I read stated that syndrome x was found in early cardiomyopathy and CHF. I found it very interesting and would recommed that if you think you have syndrome x or have been told you do, go look at the link that Jon gave in an earlier post.
     Thanks again, Jon. It looks like this thing might be of some significance to people with the types of symptoms I have: basically attacks that would indicate a heart attack due to CAD but with arteries that are clean and clear. I think I no longer have idiopathic cardiomyopathy. I have an appointment to see my cardiologist next week and I have a lot to discuss with him. I do know that the meds are nitro and anti-spasmodic drugs, I am guessing that calcium channel blockers have this anti-spasmodic effect. It sure has lessened my attacks and other symptoms. If anyone finds more info about this, please post it. Layman's terms would be best but that's not always available.
     Pam E, I am interested to know what your symptoms are. How were you diagnosed? God's blessings to all, Robin Lynn. heartful99@hotmail.com


Phyllis A's June 27 reply to Pam E's June 27, 2000 - Hi Pam, You made a comment to Pat about metoprolol. I have been recently put on this too and it has made a world of difference. I was not able to walk too far before this med, therefore I didn't get much exercise and my weight stayed up. Now I can walk and my weight is starting to come off. I'm just on 25mg twice a day but went to my primary care doc and she said my cardiolgist that I see on Thursday may want to increase to at least 50mg twice a day. So it worked wonders for me too. phylcasurv@msn.com


Madelyn J's June 28 reply to Gene S' June 26, 2000 - Hi all, I want to echo Jack's warning about rubbing vinegar on your skin. There's good reason (acidity) why vinegar is such a useful household cleaner, including usage for cleaning the scale build-up out of coffee makers! If you need to use any massage product frequently, ask a doctor for recommendations. Also watch the ingredients of anything called a "lotion." You'd be surprised how many contain skin-drying chemicals such as isopropyl alcohol, which create a vicious cycle of needing more lotion to relieve itching. This is true even in "massage lotions" sold in bath product boutiques. My skin is very sensitive to some common ingredients of fancy lotions. I stick to Aveeno products and alcohol-free lotions. madelyn29@juno.com


Donna Z's June 28 reply to Hope's June 27, 2000 - Hi Hope, When I switched from Lasix to Aldactone a few months ago, I had some wicked headaches for a week or two but I'm no longer having them. I did stay on Aldactone so if you can hang in there,..., or call your doctor and see what he says. Now I do not take Lasix at all. The doctor did tell me if I needed Lasix I could take it occasionally but that if I started to need it every day to let her know immediately. The other thing to remember is that with Lasix you need K-dur. With Aldactone, you don't, so please watch your potassium levels while taking both. dzak@worldnet.att.net


Joy R's June 28 reply to Barb's June 26, 2000 - Hi Barb, I have DCM and am on home IV dobutamine. I have been doing this for almost 3 years now. I finally asked my cardiologist if I could try to do some cardiac rehab since dobutamine has finally helped me to the point that I can get around pretty well. In the beginning I couldn't even make it to the bathroom by myself, I had such labored breathing and I was forever in the hospital. I wanted to do more if I was able so cardiac rehab evaluated me and of course afterI was on the treadmill for about 3 minutes at 1 1/2 miles per hour, they stopped because of EKG changes.
     They set me up on a program and I've been going for 3 weeks now. It is mostly range of motion and 5 minutes on the treadmill at one mile an hour. I hold 3 lbs of weights and lift them 10 times. It has been extremely diffficult for me to do this but I think in the long run it will give me more stamina. I found if I do everything very slowly, I don't get too short of breath. I carry my dobutamine with me and hang it on the equipment. I have met many nice people and have enjoyed being around others again but I have had much more fatigue since I started. I am so tired all the time it is an effort to sit and use the computer, and just to walk or move. I force myself to do a little, then I rest. I am going to try later this year to see if I can wean off the dobutamine a little at a time. So it is very important for me to follow this through. The cardiac rehab folks say it may be a next year before I will feel the benefits of this rehab. I wanted to ask others about the fatigue. Does it go hand in hand with trying to do a little more? If it helps in the long run, keep it up. Joy. wapalaremi@home.com


Leland Y, June 28, 2000 - Hi Jon, I have just gone over the section on CHF Treatment, specifically CHF Tests for the second time since my CHF came on. I did not thank you the first time but now, a year later, it gets to be more and more educational and I realize how informative your site is. I can only question why some of the pages have been hit only 3500 times, which is about 10% of this posting site. Thank you so much for this site. I did not mention in my attachment that I sent to you (about Kaiser's Self Management Program), that Kaiser also has another program called "Heart to Heart," another support program for heart patients. Leland. LLYEE@surfside.net


Jon's June 28 reply to Leland Y's June 28, 2000 - Hi Leland, You're welcome. Unfortunately, I can't make people read, and web surfers are among the laziest people in the world. Most of the regulars here are exceptional and read a lot about a lot of things, but most non-regulars would rather try to get someone to explain it in a post rather than look it up and read it themselves. <g> Jon.


Cheryl L, June 28, 2000 - Good afternoon all, This is a thank you to all of you who have been talking about your EF and why we feel the way we do. My EF is 18% but I continue to work daily. I run a very small one-girl office. My boss is wonderful. I was working here when I got sick and he knows that when I go home early it's because I'm tired and need the rest. I am beginning to wear out easier than I did even 6 months ago. I don't feel bad, just tired. My edema is worse but I often get that worse in hot weather.
     I have a wonderful support system. My husband is wonderful. He has to do so much of the housework now but he never complains. I have my family, although none live close so they aren't here for the day to day things. My church family goes above and beyond. I never feel left out of anything. They make sure I stay involved and active in everything that is happening at church. Now I have my support group.
     I don't usually put in my 2¢ worth but you all will know exactly what I feel. I see that there are others who have a low EF and still feel pretty good, and others that have higher EFs but are unable to do the things they would like to do. All of this did confuse me until I read all of the posts today. Please feel free to contact me at my e-mail address, I would love to talk one on one with any of you. May God's blessings be upon you. I will check in again soon. Bye. HealedHart@aol.com


Jon, June 28, 2000 - Hi everyone, I called Al H tonight and he's still breathing, folks. <g> He is just having a bad week so he is taking it easy - wisely. Jon.


Lynn M, June 28, 2000 - Hi everyone, Here are some of the things I used to do when suffering from leg and foot cramps, with varying degrees of success. Massaging a cramping muscle can cause it to bruise so procede gently with that, if at all. Alternately extending your heel so that your toes point toward your nose then relaxing it can work if the cramp isn't too bad. It worked for me quite a few times before mine got to the point of being screamie-meemie affairs. Walking barefoot on a cold tile floor sometimes works, too. I tried potassium pills without much success. Mostly, I either soaked the affected foot in a basin of hot water or got into a tub of hot water if it was my entire leg. Soaking in hot water always worked, even if they were so bad that I was screaming in pain. I've had them that bad, to the point where hubby had to throw me fully clothed into a tub of hot water even. I took quinine pills, which helped for a few years but I don't know how safe they are for CHFers, which I didn't have at the time.
     When it became more difficult to buy quinine over the counter here in the States, I started drinking tonic water (which contains quinine), with Scwhepps lemon-flavored being especially tasty. I always had bottles of tonic water rolling around on the floor in the car for those times when leg cramps would hit while I was out. Eventually, the peripheral vascular disease progressed to where quinine no longer worked, so I took to drinking huge quantities of brandy. You know, alcohol being a vasodilator. This worked great, except I'd then be roaring drunk. Don't try that one. Just before going out to buy a Christmas tree one year, I did the brandy remedy. Hubby forced me into a restaurant to soak up some of the brandy because I became very loud out in the driveway, causing the neighbors to peek out their windows. He said that I was also very obnoxious in the Xmas tree lot. I got very bad leg cramps while cooking Christmas dinner the next day and my family arrived for dinner to find me nearly passed out from brandy. So this method has serious drawbacks, despite getting rid of the cramps.
     Heart disease entered the picture a few months after the brandy treatments and now I have a whole new arsenal of drugs that happen to minimize the leg cramps. I noticed that whenever I was in the CCU on IV nitro, I never ever had a leg cramp. Hmmm. Then I noticed that on days when I had really bad angina and took so much nitro that the palms of my hands were cherry red, I never had leg cramps. Otherwise I had them every single night. Anyway, I found that nitro and long-acting nitrates help alleviate them to some degree.
     Most of these methods are rather dangerous, especially for heart patients so I'm not actually recommending them, especially without first running them by your cardiologist. Even sitting in water hot enough to relieve the cramps puts quite a load on the heart. Fortunately, now that my heart is even worse, I don't have many leg cramps because I had an aortal bifemoral bypass, which restored the blood supply to my legs. But maybe this will give hope to the person who is contemplating serious surgery for something totally different (I'm sorry I forgot your name). They did the aortal-bifem only a few months after my second heart attack although the vascular surgeons had to battle cardiology and anesthesiology to get the go-ahead to do it.
     It may require spending some real quality time in the Surgical Intensive Care Unit (I was there for a week) and they may even have to put a catheter into your heart to constantly monitor it closely as they did mine, while you're in the SICU. But it can possibly be done, if done carefully with a lot of precautions, especially with a very good anesthesiologist. Lynn. techndex@pacbell.net


Leland Y's June 28 reply to Tom S' June 20, 2000 - Hi Tom, Many, many years ago I had similar dreams, which were caused by beta-blocker drugs. This was not discovered by family doctors but with a cardiologist. Some beta-blockers cross the blood-brain barrier and cause these nightmares (propanolol, naldalol). Switching over to atenolol solved my problem completely. Atenolol does not cross the blood-brain barrier. I am not sure if Coreg is in the former or latter category. You might ask your CHF doctor. I can sympathize with you, Leland. LLYee@surfside.net


Jamie S, June 29, 2000 - Hi, For everyone who is having cramps, maybe having a regular stretching routine would help. Keeping your muscles toned that way may reduce cramps and the severity of the cramps. Stretching is a great way to stay limber and it can also help arthritis. Staying limber can help prevent some injuries should you fall. Stretch before you cramp. Jon, note the new e-mail. Thank you. Jamiedan@optonline.net


Linda O, June 29, 2000 - Hi, I hesitate to suggest this for the leg cramps since it sounds a little far out. Maybe my leg cramps are just not as bad as the ones described but here goes: Grab your nose in the middle along with a little of your skin right below your nose, and hold it until the cramps go away. I hope it works for you as well as it has for me. Linda O. norvalo@clarinda.heartland.net


Frank S' June 29 reply to Jamie S' June 29, 2000 - Hi Jamie and everyone else who has muscles <g>, Your use of stretching exercises is very effective for all the musculo-skeletal system and I couldn't agree more except to comment that those of us who suffer from vascular disease also have lack of blood circulation to the muscles and organs in our frail bodies. I used to chuckle to myself when the so-called fitness experts and even some doctors, would say, "Just do a little bit of exercise at a time and you will gradually build up your 'wasted' muscles." Well, those of us who have circulation problems due to poor blood flow know that re-building our muscles just ain't gonna happen unless adequate blood flow is restored.
     By the way, I'm having another arterial doppler study done on my extremities, to ascertain just how much restriction exists. After that is done, perhaps an interventional radiologist/cardiologist will be able to perform balloon or stent procedures, which would hopefully increase the blood flow and keep the cramping and claudication from making even ordinary movement so difficult. Even moderate exercise is crucial to any fitness which we can give to our very sick organs, especially the beloved pump. Later, Frank. marquasmith@mailcity.com


Jeff, June 29, 2000 - Howdy, My name is Jeff. This is only my second time on this web site and it is very good and interesting. I will be back for more soon. I have a an enlarged heart with a bad valve. Three months ago I was nearly dead. All my organs had shut down. They put a balloon in my heart and kept me going long enough to get my organs working again. A couple of days later they put a heart pump in me called an LVAD (left ventricular assist device). It is quite a package, let me tell you. I am doing a great deal better and I keep improving each day rather that gettting worse. I am currently number one on the heart transplant list in Iowa. The pump is mostly used as a bridge to transplant. I have a web site, if you are interested in learning more. This web site puts mine to shame! I am plan to become a regular here. I love the web and this is the best site I have seen on heart conditions. I will be back later. Catch you all later, Jeff. iowajeff29@aol.com


Bill D's June 30 reply to Lynn M's June 28, 2000 - Hi Lynn. My wife Rosie used to have leg cramps, not as bad as yours, though! Rosie hates doctors and hasn't been to see one for 42 years. But, Rosie will take any vitamins or supplements you tell her to with a straight face. <g> She takes a double tablespoon of various colored pills every morning despite the trouble she has swallowing them. She read your post and said, "Ever since I started taking bioflavenoids I haven't had a cramp. They used to wake me up and have me dancing around the bed." (I slept right through it) Oh well, bioflavenoids are cheap and have no side effects. She takes one pill that's composed of: 1,400mg bioflavenoids, 100mg vitamin C and 100mg Rutin, which I think is the glue that holds the pill together. Bill. billdog@gate.net


Kathryn C, June 30, 2000 - Hi, I had to pass this along. Have faith! kathryncole@hotmail.com

     A little boy was spending his Saturday morning playing in his sandbox. He had with him his box of cars and trucks, his plastic pail and a shiny, red plastic shovel. In the process of creating roads and tunnels in the soft sand, he discovered a large rock in the middle of the sandbox! The boy dug around the rock, managing to dislodge it from the sand. With no small struggle, he pushed and nudged the rock across the sandbox by using his feet. (He was a small boy and the rock was huge in comparison)
     When the boy got the rock to the edge of the sandbox however, he found that he couldn't roll it up and over the little wall. Determined, the little boy shoved, pushed and pried but every time he made some progress, the rock tipped and then fell back into the sandbox. The little boy grunted, struggled, pushed and shoved but his only reward was to have the rock roll back, smashing his chubby fingers. Finally he burst into tears of frustration. All this time, the boy's father watched from his living room window as the drama unfolded.
     The moment the tears fell, a large shadow fell across the boy and the sandbox. It was the boy's father. Gently but firmly he said, "Son, why didn't you use all the strength you had available?" Defeated, the boy sobbed back, "But I did Daddy, I did! I used all the strength I had!"
     "No, son," corrected the father kindly, "You didn't use all the strength you had. You didn't ask me." With that, the father reached down, picked up the rock and removed it from the sandbox.

Jay Q, June 30, 2000 - Greetings, fellow low sodium sufferers, I have good news. Steinfeld's No Salt Added Sweet Cucumber Chips contain zero - repeat, zero - salt and fat. Also, I have discovered that Sears carries a potassium salt (KCL) recharge for water softeners, which means no addition of 2 sodium ions for each calcium ion removed. Cheers, Jay Q. affinis@aol.com


Al H, June 30, 2000 - Hi everybody, The following article ran in the Times Record News from Wichita Falls, Texas:

When in Rome, Pray As,...
by Nick Gholson
 
     "Some people, it seems, get offended way too easily. I mean, isn't that what all this prayer hullabaloo is all about - people getting offended? At least that's what I hear the courts and the ACLU telling us. I am not easily offended. Outside of getting run off the road by a Mack truck, nothing much offends me. Daddy and Mama gave little Nicky a sense of humor.
     Some people, however, either weren't born with a sense of humor or they lost it in a crap game. These people are still in the minority, but those of us in the majority are always tippy-toeing around, trying to make sure we don't step on the toes or hurt the feelings of the humorless. And you can bet there's a lawyer standing on every corner making sure we don't.
     Take this prayer deal. It's absolutely ridiculous. Some atheist goes to a high school football game, hears a kid say a short prayer before the game and gets offended. So he hires a lawyer and goes to court and asks somebody to pay him a whole bunch of money for all the damage done to him. You would have thought the kid kicked him in the crotch. Damaged for life by a 30-second prayer?
     Am I missing something here? I don't believe in Santa Claus but I'm not going to sue somebody for singing a Ho-Ho-Ho song in December. I don't agree with Darwin but I didn't go out and hire a lawyer when my high school teacher taught his theory of evolution. Life, liberty or your pursuit of happiness will not be endangered because someone says a 30-second prayer before a football game. So what's the big deal?
     It's not like somebody is up there reading the entire book of Acts. They're just talking to a God they believe in and asking him to grant safety to the players on the field and the fans going home from the game. 'But it's a Christian prayer,' some will argue. Yes, and this is the United States of America, a country founded on Christian principles and we are in the Bible Belt. According to our very own phone book, Christian churches outnumber all others better than 200 to 1. So what would you expect - somebody chanting Hare Krishna? If I went to a football game in Jerusalem, I would expect to hear a Jewish prayer. If I went to a soccer game in Baghdad, I would expect to hear a Muslim prayer. If I went to a ping pong match in China, I would expect to hear someone pray to Buddha. And I wouldn't be offended. It wouldn't bother me one bit. When in Rome,...
     'But what about the atheists? is another argument. What about them? Nobody is asking them to be baptized. We're not going to pass the collection plate. Just humor us for 30 seconds. If that's asking too much, bring a walkman or a pair of ear plugs. Go to the bathroom. Visit the concession stand. Call your lawyer. Unfortunately, one or two will make that call. One or two will tell thousands what they can and cannot do. I don't think a short prayer at a football game is going to shake the world's foundations. Nor do I believe that not praying will result in more serious injuries on the field or more fatal car crashes after the game. In fact, I'm not so sure God would even be at all these games if He didn't have to be. That's just one of the downsides of omnipresence. If God really liked sports, the Russians would never have won a single gold medal, New York would never play in a World Series and Deon Sanders' toe would be healed by now.
     Christians are just sick and tired of turning the other cheek while our courts strip us of all our rights. Our parents and grandparents taught us to pray before eating, to pray before we go to sleep. Our Bible tells us just to pray without ceasing. Now a handful of people and their lawyers are telling us to cease praying. God, help us. And if that last sentence offends you - just sue me!"

Angels fly because they take themselves lightly. Go and do thou likewise! bobal@ecajun.com


Jill S, June 30, 2000 - Hi, I don't know if it's in The Manual or not, but I just found out that CHF patients who need a local anesthetic for dental work should not have the Novocaine that is mixed with epinephrine. Epinephrine is adrenalin and can speed up your heart rate. It's a good thing my periodontist checked with my cardiologist, cause the cardiologist never told me this poses a health risk for me. You need to tell your dentist to give you the stuff without it, if you need to have an anesthetic. Jilschrod@jps.net


Jill S, June 30, 2000 - Hi, Has anyone heard from Jill M from South Africa lately? Jilschrod@jps.net


Jon, June 30, 2000 - Hi everyone, For the past 2 months, I have been trying to get all the bios on the Who's Who page updated. I am finally down to a list of people who have not answered my e-mails, although none of those messages have bounced. The last request for updates went out June 23. If you are on this list and you have contacted me with an update already, please e-mail me and say so and I apologize in advance for my mistake. If you are on this list and you have not contacted me, please note that if I don't hear from you in the next few days, I'll be pulling your bio off the site.
     If you would like to put a bio up, all you have to do is e-mail me the information and I'll do the rest. If you have had a heart transplant and would like to share your experience with others pondering having one, please e-mail me your story and I'll put it up on the heart transplant section. Thanks, Jon.


All information on this site is opinion only. All concepts, explanations, trials, and studies have been re-written in plain English and may contain errors. I am not a doctor. Use the reference information at the end of each article to search MedLine for more complete and accurate information. All original copyrights apply. No information on this page should be used by any person to affect their medical, legal, educational, social, or psychological treatment in any way. I am not a doctor. This web site and all its pages, graphics, and content copyright © 1997, 1998, 1999, 2000, 2001, 2002, 2003, 2004 Jon C.

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