I have prolapsed mitral valve syndrome, for which I see a specialist at the Prolapse Mitral Valve Center in Birmingham. He has me taking Toprol XL and Klonopin. And exercise. And avoiding caffeine, alcohol, and stimulants. This manages my symptoms fairly well.
Recently I went to an internist who bills himself as a metabolic doctor. (My interest was because I have a strong family history of diabetes, and wanted coaching on avoiding it.) He suggested taking taurine (which I am doing) and hawthorne (which I am not.)
I called my trusted Birmingham cardiologist and asked whether these meds were safe or would interfere with my current medications. He was frank about not knowing anything about them and referred me back to the doctor who prescribed them.
From what I have been able to glean, it sounds like taking taurine is at least harmless and could be helpful. I have avoided the hawthorne because I don't understand the mechanism of action and some of the information refers to it lowering blood pressure, which I certainly don't need. Do you have any opinions about this?
Taurine is a conditionally-essential amino acid which is not utilized in protein synthesis, but rather is found free or in simple peptides. Taurine has been shown to be essential in certain aspects of mammalian development, and in vitro studies in various species have demonstrated that low levels of taurine are associated with various pathological lesions, including cardiomyopathy, retinal degeneration, and growth retardation, especially if deficiency occurs during development. Metabolic actions of taurine include: bile acid conjugation, detoxification, membrane stabilization, osmoregulation, and modulation of cellular calcium levels. Its use is still very experimental but it has been suggested for the treatment of a wide variety of conditions, including: cardiovascular diseases, hypercholesterolemia, epilepsy and other seizure disorders, macular degeneration, Alzheimer's disease, hepatic disorders, alcoholism, and cystic fibrosis.
You can find further information concerning taurine in Alternative Medicine Review. 3(2):128-36, 1998.
I couldn't find much on hawthorne except one article, interestingly the next article in the same journal. Again I would say its use would fall into the extremely experimental catergory.
Alternative Medicine Review. 3(2):138-9, 1998 Apr.
I have cardiovascular disease and a totally blocked right coronary artery. My self-designed program for recovery includes low fat diet, walking, hiking, & skiing, and lots of vitamins and supplements, L-Taurine and Hawthorne being 2 of them.
My doctor says that I have expensive urine, but I believe that some of the supplements may help over time. I get my liver enzymes checked every couple of month's and I don't seem to have a toxicity problem with them or my cholesterol medication. I do think that the amino acids such as l-arginine, l-taurine, & l-carnitine, give your metabolism a little boost.
Here is a list of what I take:
Multi-Vitamin, Vitamin C, B Complex, E, Folic Acid
Hawthorne, Gingko Biloba, Odorless Garlic, Norwegion Salmon Oil,
Lycopene, beta carotene, and a couple of other anti-oxidants that I can't think of right now.
I am glad to see that the CCF CARDIO MD is open to the idea that some of this stuff might be beneficial. Many doctors don't believe in any non-prescription supplements. But most doctors are coming over to the belief that Vitamin E and Folic Acid are beneficial to the heart and that was only alternate theory a few years ago.
I do believe that some of these agents help over time. I had exercise angina for several month's after my heart attack, last July, but am free of it now and have more physical ability than I have had in 15 years.
I had an ablation on 2/l6/00. It turned out that I had two bad
pathways that had to be ablated. My natural pacemaker was too close to the goofy pacemaker and both were zapped. I ended up having to have an artifical pacemaker put in three or so inches below my collar bone. I didn't think anything bad would happen and was totally freaked out when I woke up. I feel good now though. How old are you? Is your heart rate fast or slow. Mine went up to 240 bpm. I had been on beta blocker for l8 yrs., so I have to be weaned off of them. I should be off all heart meds next week. It's a big decision. The doctors make it seem like its no big deal and that bothers me. Its the only heart you have. My case was rare, yours may be much less complicated. If you have any questions, let me know. I'll be praying for you.
For Bruce sunday mar 5 this is my first time posting anywhere so please have patience. i had a cathater ablation on feb 15 1999 the first day of my new life ,i suffered with SVT for 22 years i am 50.i have other arrythmia problems, but since 1 year ago i have a new life. i researched the procedure VERY thorougly than i researched the doctors around the east coast on internet, other heart patients. after i decided to have ablation i decided the team and facility to use. had to move to new york, go on medicade (my SVT was so frequent,and debilitating,it was hard to hide from employers for very long. any way MAKE SURE YOU GET THE BEST TEAM my doctors do minimum of 50 a week . find very experenced dr. the reason so many ablations must be repeated is in-experenced people. my doctor came down to see me after procedure. nurses said he never does that. to tell me he was so glad he was able to help me i was the most severe case of Svt he ever worked on said he burned as much as possible without causing blockage the pacemaker was ready to go in but he took it to the limit and thats what i needed please dont be afraid, be informed . use a teaching facility not a county hosp. i went to new york teaching hospital with a busy electrophyseology dept but several teaching hosp in N Y were vieing for me to use them talk on phone to as many as possible DONT SETTLE .iwas truely a handicapped person despite all kinds of meds for 20 years sex was even almost impossible thank God i have a new life. hope i dident bore you bruce .PEACE HEALTH & JOY
hi lorretta, you did great on your first posting. my wife and i are making all sorts of mistakes. thankyou for your very positive comments on your very positive experience with ablation. clearly your research paid off in many ways. i am now in the process of trying to make an educated decision. i responded to kathy s. if you read that letter i will be saving space and avoiding repetition on thid wonderful website. congratulations on your new life. may it be long, healthy and full of joy. and thanks again for your response, both present and future.i
to kathy S and loretta...haven't figured out how to see the entire screen as i type. therefore i've been typing blind half of the time.winds up looking like pig latin! hope you were able to understand.
thankyou kathy s for you quick comments to my ablation queatioi'm sorry to be slow at getting back. my hookup onto the web is not reliable yet. my wife and i are working at it. i am assuming that when you said your natural pacematker was to close to your goofy pacemaker you were speaking of the one area that needed ablation vs the one 'electrical wire' that didn't need it. corect? i may have the same situation going. i have many excellently don repots and prognosis form my doctors and may try at some point to post them on this site. to answer your question , i am a healthy, active working 72 year old. my beats went to about 175 when i first discovered a problem two years ago. i've been on tenormin and cumoudin since then. when my beats are irregular it is scary but not so much as in the beginning. . i had been told that the pscemaker would be a possibility after abalation and that medication might also be needed. also that there was the possibility of zapping the one that didn't need it, therefore the pacemaker. my concern is that i might be trying to ix something that could be better left alone in my case. i will be getting another stress test to determine what kind of candidate i'd make for the proceedure. thankuou for your prayers. we will both be praying that you accept the decision you have made to be no accident and that it was the best decision for you to have made. hope to get your response if this goes through. bruce
I'm considering, at this point in my life now, consulting with an EP doctor because I can't take the unexpected arrival of these runs of PVC's, that I'm continually are told are benign! Especially after 7yrs. and the last episode I had where trigemeny and bigemeny is in the picture now and it's becoming scarier than ever, despite the 75mg of tenormin and klonopin I take for the severe anxiety\stress and impending doom that co-exist with these episodes. So can you please suggest a "good" electrophysiologist since I seem to be exhausting all other options. I live in New Jersey and I'm 20 min. from N.Y. so if you know of a few names you can run by me I'd appreciate it. I don't want to be in inexperienced hands! It took me years of side effects of the meds. and suffering, not to mention many many trips to the ER. I hear of horror stories regarding ablation , most commonly proarrhythmic effect,(winding up with a worse arrhythmia than you went in with) and ablation of the hearts sinus node or natural pacemaker, these are my biggest fears and if I knew that one of these would occur, I would actually stay on the meds. or go trial and error on other meds. more powerfull than Tenormin or Inderal, because they only keep the SVT in check but do very little for the PVC's especially the last episode I got which lasted for 4-days! with this change in pattern,(trigemeny, Bigemeny) and I'm still told not to be concerned and they will pass but I am concerned and I don't want to hear "this is benign" anymore. They are affecting my life at home now at work, which i've been out now for a week going on my second week! It's a vicious cycle and If your very symptomatic as I am over these, they do put a tremendous burden on your life whether they can cause SCD or not! anyone reading this please help if you can, I would be grateful for any input,even though I did a tremendous amount of research already over the last 7-8 years. Sometimes it takes collaboration to come up with the right answers.
my ablation was performed at Westchester Medical Center, Valhallah N.Y. Dr. Sorbera. call there and check them out, as i did.Every situation is a little different even with the same disease, but all of my research led me there. They have a cardiac clinic that saved me a lot of time and money. My SVT was getting really out of hand the last few years and the quality of my life is GREATLY improved, as only a frequent SVT sufferer would appreciate. this " BENIGN " disease is a physical, and emotional crippler LOVE PEACE and HEALTH be well !!!
I live in VA and have suffered from bouts of mysterious tach for 13 years. Since last August, following the birth of my baby, I have had frquent (one per week) spells of nighttime tach that last for hours. They only happen when i am sound asleep. My doc here in Blacksburg, VA wanted to make a referral to the very clinic you went to for an EP Study! What a coincidence! He said one of the docs there was his former colleague and that he's the best! I've decided on a doc at UVA, only because it's not very possible (children, insurance coverage, etc) for me to travel out of state. Thank you, thank you, thank you for your p[positive words re ablation. I'm really scared to death about my appt later this month for an EP study/ablation. I'm only 33 and have three small children. I really want everything to work out! Thanks again!
dont be afraid amanda have faith in God and in the miracles he has sent to us in medicine. one of my earlier choices was university of virginia at charlottsberg i think thats the right name . they were some of the pioneers in electrophyseology studies so your choice of that facility was an excellent one indiana heart institute (ithink thats the name) i dont have all my research info handy at this time any way indiana heart inst. is a leader in research and developement in this field of cardiaology. thank god the procedure is gaining popularity. do you know untill a few years ago they opened the chest to do this procedure.dont be alarmed if you are extremely fatigued and cold and exhausted for a few weeks you will get stronger every day the extent of fatigue will be directly related to the extent of heart muscle is ablated dr sorbera told me he ablated as much as possible without causing obstruction and i would do it again if it was necessary. the quality of my life is SOOOO improved.be brave, but more than that be INFORMED. learn all you can and make an educated decision . the world is at your fingertips, please post here how you are doing i will be praying for your complete healing from SVT it happened for me and it can happen for you.LOVE PEACE & HEALTH be well.
Thank you so much for your kind words of encouragement - you're very, very sweet. My appointment at UVA is May 13 with Dr. DiMarco. It's a consultation, and then possibly an EP Study. I'm doing very well on my beta blocker (Toprol XL), but still have my nighttime arrythmia. However, the episodes don't last very long and my rhythm corrects itself (w/out the beta blocker, the episodes are horrible and long). Last night I woke up and it was happening again. I'm always so afraid when it happens, it's such an unnatural feeling to be racing inside like that when I'm sitting perfectly still. I think that positive changes have resulted from this, though. I think that my faith in God has really been strengthened since the birth of my baby eight months ago (when my SVT became much worse). I realize how vulnerable I am, and how well my faith helps me to cope. Thank you again for your kindness. Amanda!
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