goldicedance

Melanie, I wish you the best on your trip to the Mayo. I hope that your appointment is with Dr. Low. I found him very caring, very reassuring, and very comforting. He explains everything really well and emphasizes how POTs is not an anxiety problem. I travelled twice from the Washington DC area to see Dr. Low. While he has no magic bullet, he does offer some possibilities suited to your condition. Moreover, while at the Mayo, he can refer you to other specialists in other disciplines for evaluation. Enjoy Rochester! I hope that you are staying at the Kaylor (spelling). They have real good rates and is very close to the Mayo--through an underground walkway. Wear comfortable shoes. Bring plenty of reading material. Enjoy the marvels of the Mayo. Let us all know how you fare. We are rooting for you and hoping that the Mayo doctors can offer you some relief. Know that POTs is not a life sentence. We just need to take it real easy, listen to our bodies, and enjoy our family and friends. Like others, despite POTS, I still live a reasonable life. I travel, with lots of rest time, and work. I don't worry about maintaining a clean house. I spend my energy on better things. goldicedance - Lois

Hiss on weight gain. During the course of POTS, I had first lost weight - almost 50 pounds-- then gained weight - even more. Right now, I am down about 25 pounds following my last flare up with POTS last year. Florinef puts weight on. I also have a feeling that midodrine does too. Moreover, I think that sometimes I eat because I feel like I am going to faint. I think that is really POTS rearing its ugly head. I have a couple wardrobes. One has more stretch than the other. I have just learned to live with it. My husband had gastric bypass surgery last fall and lost 100 pounds. I am jealous. Oh well, weight is not everything. The most important thing is to feel good, good enough to function and then some. Who cares about the weight gain? Has the extra weight boosted your blood pressure? That may even be a good thing. Try switching meds. I take zoloft and ritalin (occasionally when I feel really low). Be happy! Don't let the weight gain bother you! Think of all the new clothes you can buy. I bought some bigger sizes on Ebay and saved a bundle!

I too have dark circles under my eyes, always and forever!

I, too, am slated to be in the study dealing with the measurement of autonomic system dysfunction. I understand the project is on hold somewhat because they are waiting for some new equipment. I'de be interested to hear how you did during the study as well as the role that Dr. Goldstein plays in ongoing patient care after the study. Did you go for the 1-day evaluation? I was told that, after reading my files, Dr. Goldstein did not think the 1-day evaluation was needed.

Dr. Goldstein, I don't believe, sees "walk-in patients" or have a private practice. He is conducting a number of autonomic nervous system studies, including some on POTs.

Ditto on the above. One factor that seems to aggravate POTS is frequent bathroom trips, especially at night. That really aggravates the condition. I like how doctors say that they would like to see you on a "poor" day. Perhaps if you could get an appointment for that day, it would work! Otherwise, you might have to wait awhile and hopefully for you you are feeling better. Kinda a vicious circle. Keep on plugging!

Please see the reference in the February 2001 issue of Pacing Clinical Electrophysiology that deals with sinus node ablation. The article is called, "Is sinus node modification appropriate for inappropriate sinus tachycardia with features of postural orthostatic tachycardia syndrome." I knew I could find the reference if I really tried. BTW, I know there is a tachycardia that can be helped with EP study and ablation--I think it is called White something or other syndrome. A friend of my daughter who iceskates had this done and voila she is back to iceskating. This goes to show that all cases are different. I guess I would say have the EP study to rule out other causes but have the ablation (if not clear that it can help) at a later time. I did that when I was considering AV node ablation. Good luck and feel better!

I found that the higher bpm pacing helped smooth out the rhythm and made a real big difference, particularly at night. Does she have a rate-adjustable pacemaker? I went this past fall to the Mayo for consultation with Dr. Low. While there I went to their Pacer Clinic and the doctors adjusted the upper end as well so that the pacer could go as high as 145 bpm if necessary to support increases in my heart rate. I don't believe these docs when they say it is all in your head. That is like them tossing their hands up in the air and saying they don't know--that would be a better approach. When my problem first started back in early 1994, I was hospitalized in cardiac care. My cardiologist at the time got angry with me because when I stood up for more than a second my heart rate would go sky high. His answer was that hearts aren't supposed to do that. And, then he walked away. I changed cardiologists sometime thereafter.

I take an extremely high dose of Neurontin and it has really helped with migraines and possibly POTs symptoms. I also take it with Zoloft and had been taking it with a beta blocker. Suggest you ask your doctor about the combination of drugs you are taking and the impact of adding neurontin. Good luck and let us know how you did!

Justme: Have they tried setting her pacemaker with a higher heart rate minimum so that her heartrate does not have to drop to 50 bpm before it gets shocked. Like I noted earlier, mine is set at 80 bpm so that essentially I am always being paced at the sinus node in addition to the ventricular mode. Is her pacemaker rate responsive? Does she have dual leads implanted just in case? I ask about the minimum because I was having a lot more problems initially when the pacer was set at 60 bpm because my heart rate would get tachy for a period of time and then the pacer took too long to start pacing because aof the drop in beats necessary to activate it. Just a thought...

I finally found the reference pertaining to sinus node modification and POTs!!! It is an article entitled, ,"Is sinus node modification appropriate for inappropriate snus tachycaradia with features of postural orthostatic tachycardia syndrome?" Authored by WK Shen et all, it appeared in the February 2001 issue of Pacing Clinical Electrophysiology.

What is a 6volt shock? She has a pacemaker versus a defibralater? My pacemaker is set pretty high at 80 since I seem to function better at the high rate. I also use it 100 percent of the time because of the AVNode ablation. My pacemaker is also rate sensitive--supposedly increasing my heart rate when moving around. According to my consult in October at Mayo, my pacemaker is state of the art with regard to pacing possibilities. They "tweaked" it when I was there but I think they felt like they had to do something. Perhaps she might explore a different brand? Keep in touch with how she is doing. She had such complications in the hospital. That's a shame. With my second "generator" replacement, I was in the hospital for about 6 hours and then they shipped me out. The replacement is not so bad since the pacemaker pouch is already there. Good luck to your wife and her pacemaker travails.

1. Lois 2. 55 (I am the Old Lady of this group) 3. POTS (possible EDS, pacemaker dependent) 4. Diagnosed in 1996 though symptoms began in 1993 but no one familiar with such a syndrome like we are all blessed with). Triggered possibly by a horrendous ear infection. 5. Potomac, Maryland 6.Symptoms at worst: Difficulty with standing for any period of time; inability to retain fluids, fatigue, lethargic; intense sweating and dizziness, strange heart beats, horrible migraine headaches, difficulty sleeping. Have been hospitalized several times for several days at a time until I could begin to walk around. 7. Symptoms at best: Difficulty with standing in line or in one place for more than a couple minutes; many premature heart beats; tired, difficulty sleeping. Dificult to get up in the morning--just thinking about how I will feel makes me want to stay in bed. Very lightheaded when in heat. Would do best with a good nights sleep and a nap during the day. 8. Meds that did not work: Clonidine; Phenobarbitol; Florinef (migraines that led to hospitalization), salt pills, some kinds of beta blockers, sometimes midodrine 9. Meds that do work: Octroetide, Neurontin, Zoloft and sometimes Ritalin. Midodrine gives me bad chills and head tingling.

So sorry to hear that your wife is having problems with her pacemaker site. I am now on my second pacemaker. Moreover, a few weeks after I had the first pacemaker implanted a lead dislodged so I had to be "opened" again to fix the problem. For the first moth after my latest pacemaker insertion. I had burning occasionally on the site. The doc thought it was either the result of scar tissue or just healing. It went away fortunately. My first pacemaker lasted about 6 years. The battery was supposed to last 8-9 years. However, my paced rate is 80 so that puts additional strain on the battery since I am almost always paced for the sinus node. Moreover, since I had an AV node ablation, I am 100 percent dependent for ventricular pacing. What brand pacemaker does your wife have? I have a St. Judes. What does the doctor say about the pain at the implant site? I would press for an answer other than sometimes it happens.

I know how difficult it is to stand in one place. I experience the same sort of thing that you do when standing. I try standing with my legs crossed, that helps for a bit. Most times, I sit down even when others are standing, even at religious services. Waiting in lines is terribly difficult for me. My internist suggests that I get one of those canes that has a pot-up seat. Gosh, I really feel old. I have my wonderful husband do all the waiting in line. At home, when I need to prepare meals, I frequently do the job at the kitchen table because standing in one place does me in. Oh well, its good to have other people to chat with who are in the same predicament as me. Know that we are not alone. Feel better!

Well put, Might Mouser. An EP study rules out an electrical problem. Be sure to get a good work up for POTS by a doctor well versed in POTS (although they seem to be few and far between). BTW, I don't know how you all cope with getting appointments with your doctors that take a few months to get. What do you all do in the meantime?

I take neurontin 3600 mg a day (900 in the morning; 1200 in the afternoon, and 15oo in the evening. My POTS doctor started me on a low dose. However after migraines that resulted in hospitalizations, my neurologist increased my dosage of neurontin very slowly over a number of months. I think the neurontin has certainly helped with the migraines. It may also have helped ameliorate some of the POTS symptoms. As we all know, everyone reacts different to meds. Why not explore the option? If it doesn't work for you, then you can discontinue it. Good luck! Let us know how it works for you.

I had an a sinus node ablation; then needed a pacemaker because of pauses caused by damage to the sinus node; and then about 20 months later an AV node ablation. I had this done before doctors were familiar with POTS. My advise, make sure you are clearly diagnosed with an "electrical" problem rather than an autonomic problem. You don't want to damage your electrical conduction system if you have an autonomic problem.

Re: Cutting Atenolol pill down The doctor that told me to do this is not only an EP with POTs experience but also a clinical pharmacologist. I think that's a pretty good reference for pill cutting. Moreover, I've read that some people try to get their doctors to prescribe a higher dose of the medication even when they know they need to cut it in half since frequently double the strength costs less than if one we're to buy 2 lower doses. Therefore, by cutting the dose in half, they can save money. AARP even suggests that. With drug prices what they are, every little bit helps.

One suggestion about working is to see if you can work at home (i.e., telecomute) a couple of days a week. That way you can take rest periods if you need and avoid the hassle of commuting. Moreover, I really think that you get even more deconditioned by lying around. If I had my druthers, I would probably be resting much more in bed. I am afraid that if I stop working I might deteriorate further. Right now, I keep plugging along. Eventually old POTS roars its ugly head and forces me to stay home or worse to be hospitalized.There are times when my house is a clutter and my husband does the cooking and shopping. When I come home from work, it is usually just dinner and go lie down. My ankles swell terribly when I am up all day so I need to elevate my legs. Anyway, keep up the best that you can. If you need to stop working, there is nothing to be ashamed about. You gave it your best try!

I had been on atenolol and Zoloft together along with high dose of neurontin. Atenolol in 25 was too much for me as well. My doc had an easy solution--take 12.5 by breaking the atenolol in half. The generic was too small to break so I had to use the name brand. I also take 3600 mg of Neurontin to help control migraines as well as some POTS symptoms.

Congrats to your daughter for her achievement. I know exactly how you feel and know that it is not good. My daughter is a competitive iceskater--synchronized skating. Two times I could not go to competitions because I was in the hospital with POTs. The first time, it was going to an Eastern Sectional Competition and the second time to a National Competition. I also missed out on all the college exploratory trips because I knew that I couldn't keep up and would be totally exhausted. I know that your daughter understands. I always felt bad for my daughter because she was much younger. Oh well, we can't do everything and unfortunately must pass on important events. What a wonderful situation we are in....but we know where we can go for support and encouragement. Thanks to all the "penners" on this site. It's a shame that we can't get our internists up to snuff on POTS.

Thanks for the clarification. You are absolutely right. A sinus node ablation may be called for but not for POTS. I had it done before doctors knew about POTS. The doctors had incorrectly assumed that I had an "electrical" problem, rather than an autonomic one. That's why I emphasize to POTS people not to do anything permanent (like a sinus node ablation) without making a number of consultations.

Just Me: Sounds like your wife got the pacemaker for bradycardia. Are you under the impression as I am that there is no pacemaker that will stop tachycardia. By the way, I am on my second pacemaker.

What is Junctional Tachycardia? The heart beat goes electrically speaking from the sinus node then the junctional node and then the ventriculr (" My photo does not do these pants justice. The pattern in actuality is a muted washed denim stripe. Somehow, stripes and checks do not photograph too good.?) node. The junctional node kicks in when it does not get a good signal from the sinus node. In my case, even with the sinus node ablation, there was still tachycardia due to pots. Junctional tachycardia feels much worse than sinus node. Your heart feels like it is going to beat out of your chest, you are really short of breath, and you feel like you are going to keel over. May you all never have junctional tachycardia!