goldicedance

I have a pacemaker--top of the line, rate responsive. In fact, I am already on my second. The first lasted about 6 years. I am confused as to why your heart rate dropped to 40 when you were on the tilt table test. Isn't your hr supposed to increase when standing. What is the reason for the pacemaker. Do you have pauses--i.e. bradycardia? Have you had a sinus node ablation? That's what necessitated the need for a pacemaker for me. And, it didn't stop the rapid heart beat. Basically with POTS your heart is not the problem; it is the autonomic nervous system that tells your heart when to beat. After I had the ablation (before research showed that ablation was not the way to go with POTS), then I not only developed bradycardia but also junctional (av tachycardia). The bradycardia was caused by the ablation and the junctional tachycardia was a result of not only the ablation but POTS. I later had an AV node ablation so now I am fully pacemaker dependent--not a situation that I relish. In fact, my first POTS doctor said that my POTS would have been easier to treat had I not had the sinus node ablation and the pacemaker issue. Be very careful about pacemakers. The ony device I know that can slow the heart in an implantable defibrillator and no way Jose would I want that. Good luck and let us know how you do with your new doc!

Glad that you found a cardiologist that can be helpful. Word of caution--bedrest could be terrible for a POTS patient. On bedrest, your body would release more fluids and you would get really deconditioned. Then, when you stand up, you will really feel faint. Bedrest affects people without POTS in the same way, but for us POTS people the situation becomes exacerbated. On a brighter side, you might want to try drinking ice water when you are not feeling ok. Put your feet up and enjoy a glass of ice water. Apparently the chilled water causes your gut to tighten up and then helps stop the pooling of blood in your legs. I have heard this now from two docs who are experts on treating POTS. One doctor (Dr. Low) called it a self infusion. Keep us posted on how you are doing. You know that you have friends out here in cyberspace. Good luck and most importantly feel better.

I join the group in sending you my wishes that you can feel better! The sooner the better. There is indeed a subset of POTS that has high blood pressure. That is the one that is usually missed in diagnosis. Don't have a sinus node ablation! Make sure your cardiologist is well versed in POTS! Always explore your options! Take control! Be positive! You have a big support system here! All our hopes and prayers are with you. Feel better.

Check out www.dynakids.org for information especially of interest to parents and children who have dysautonomias. Not only does this site have interesting information but also has a place where one can get adorable medic alert bracelets.

Curious about two items that appeared in the above postings. First, about a pacemaker that could slow down your heart. As a wearer of a pacemaker (I'm on my second) as a result of an ill-advised sinus node ablation because no one knew about POTS a decade ago, I am unaware of a pacemaker that can slow your heart rate. More information from you all would be appreciated. Second, about POTS being rare: Dr. Low told me that he believed that POTS was more prevalent than MS, just misdiagnosed. Third, a holter monitor to see if you have POTS will not help much. One of the best tests is either the tilt table or simply a doctor with patience who can measure your bp and heart rate when you are lying down and then when you are standing up--every minute, using an automatic blood pressure cuff--until you become symptomatic. How long you can stand is really the crux of the matter! Your thoughts?

We are all in an area that falls between many specialities. Indeed it is difficult to get the doctor's time and attention. At some times during difficult POTS periods, I just want to say--I'll pay for an hour of your time so that there is no rush. That is impossible. Right now, I am seeing an endocrinologist at WVUH who is doing some tests with octreotide. So far, I am getting a good response. He does take the time for talk, explanation and ideas. I travel about 400 miles round trip every two weeks to see him for these tests. I can say it is worth it. My other advice is just keep seeking advice. We all need to be proactive and keep trying to see what relief we can get. My prayers are with you on finding a doctor who respects you and your POTS. I get ticked off when doctors blame it on stress or nerves. That is not the case, as we all know. Check out the site, www.dynakids.com or .org. Interesting information.

Check out www.nbc.com--Today Show. Today there is a feature on menses and migraines. You might all find this interesting. Boo, boo on migraines!

Has anyone out here tried Prednisone or another form of Cortizone for POTS flare-ups? Would be greatly intereseted to know asap. My doctor is very interested in this possibility since one time I was taking Prednisone for severe neck paid and my POTS systems got much better! Thanks

I too continue to have premature beats when my autonomic nervous system is being stressed by standing. That really freaks my "octreotide" doctor. What is really more strange is that I have a pacemaker. The cardiologist tells me that what I am actually experiencing is one strong, one weak, then one strong beat. While it may be easy for people to say that "everyone has them", I think that no one has them like we POTS people do when we are standing. While we may be more sensitive to them, nonetheless the fact that they are occurring when we are stressing our autonomic nervous system makes it a little different animal. Also, when I have them, I feel bad...know that I have to sit or lie down. By the way, one trick that seems to help somewhat although not that much is when standing to cross your ankles. Magnesium is good for heart rhythm as well.

I think we should start out with articles. I have had experience writing and having the articles published in the journal of the organization I work for. Does anyone else like this idea? Is anyone willing to start? Any outlines? We need some catchy openings, etc. I think it will work. I don't want to say that everyday I feel fine. That, frankly, is not the case. Over the past several years, I have had major hospitalizations for POTs and for cardiac problems related to the sinus node ablation I had back in 1996 when no one knew anything about POTS. That would be an experience in itself. I have had more prescriptions and prescription changes. My insurance probably hates me. But that's life. I really sympathize for everyone who is feeling badly and poorly. I know how it is and know how easy it is to have bad spells. Like I said, last June was the last really bad period. While I work, on weekends I am thoroughly exhausted. I basically spend 1 day of my 2 days off in bed. During the week, after dinner, I go to sleep. I would relish the luxury of being able to stay home, put my feet up on the lounge year, and keep my fluids up. I know my quality of life would be better.

I had the Sweat Test at the Mayo Clinic twice. There you are covered with the wonderful powder that turns color in places where you sweat. There, they slide you into a box (kinda like an incubator) after you have been powdered like a turkey. Then you roast until your temperature reaches a certain point. Then they take you out and take pictures of you that they then send to the doctor via computer. Then you take a shower and try to get off all the powder. It probably took 2 days to get everything off. Then when you see Dr. Low, he has the pictures in front of him. If you have had it done before, he can compare. When I first went into the sweat box, it felt like I was on vacation at the beach. After a while, I felt like I had heat exhaustion--just like you feel when you have been out in the sun too long. The technicians give you time to rest and cool down before you leave the lab. The test is fatiguing. Drink alot after you have the test and before (provided you don't have to use the bathroom during the test). You can always recognize others at the Mayo who have also had the sweat test. Another test that may get confused with the Sweat test is the Qsart. I don't do well in heat either and have been known to faint. However, all went well and I hope and pray that you do as well. Just keep an open mind--imagine yourself on a beach and getting a tan. Think pleasant thoughts!!!!

Florinef can also cause excruciating migraine headaches--bad enough for me to be hospoitalized for a week. Re Fluids--I agree that for exceptional circumstances IV fluids are good. Been there, done that. Re: Experiences. I have been diagnosed with POTS since 1996 but suffered with it since December 1993. Believe me, those weredays of certainly unchartered territory. I went from doctor to doctor, 3 extensive hospitalizations for low blood pressure, angry cardiologists who got angry when my tachycardia occurred standing up (even in front of a cardiac telemetry room) saying that's impossible--it is nerves; to horrible cardiac ablation of sinus node (with its ensuing complications), unitl 1996 when my doctor discovered a cardiologist at Georgetown who knew something. In fact, I was in the clinical trials for Midodrine. (I kept a few of the trial bottles as souvenirs). Let me tell you, back in 1994-1996, you couldn't find anything on the internet about POTS. At least now, while there is no cure (ugh) although there are good days and bad days, you can know that you are not alone; not crazy, and that there are other people out there who can understand you. I had a small child back in 1994 and let me tell you she was pretty scared when she heard doctors puzzle and worry about my condition outside my hospital room in cardiac care. Not that that doesn't happen now, for sure. But for no one to even have a clue what to do for you. It was only happenstance that my internist (during a day when her office building closed because of a water main break) read a Neurology Journal and discovered Dr. Low's pioneering work and a light bulb went off. At that point, she did further research, and located a doctor at Georgetown. Now, she was and is a pulmonologist so it would not be usual given her hectic schedule, to do extensive reading in the neurology field. Now my Georgetown doctor has left patient practice (given the problems with University and Hospital funding the powers that be decided that he wasn't generating enough money since, as we all know, treating a person with POTS takes more than the amount of time doctors can give us) so I am basically back to my internist who admits she is over her head. It is hard to imagine that in the Washington, D.C. area, there is such a dearth in doctors with an interest in POTS. Oh well, sorry to go off like that...I can tell you I've been through some horrible times. Times when the insurance companies wanted to force me out of the hospital even though I couldn't stand up because of low blood pressure. Moreover, as we all know, our instincts when we are feeeling bad are to lie down, to get out of the misery of lbp, tachy, and possiblly sweating, dizziness. However, I am sure that many of us have also discovered that when we stay flat for a long time, our symptoms only worseen and deteriorate. Enough of my rant...I know that there are times when symptoms can get really bad--during periods, during sickness. I also know that I push myself way too hard at work. Fortunately, my Employer lets me work at home 3 days a week, which is a big boom (Good luck, Future Hope). I also travel 2-3 time outside the country for business. I can tell you when I get home I am really exhausted. In fact, my husband says that most of my hospitalizations have occurred within a month of when I return to the country. How we all long for life back to normal. While we may "look normal," we know that inside we are feeling terrible and that our friends and possibly family can't figure out why we don't feel well even though we look ok. How looks can be deceiving. What I would like to see happen, is for all of us, with all our varied experiences put together a booklet, publish an article, etc. for the "real world"..just get out there with our stories and experiences. We should be active in that regard and get the word out--particularly in areas of our countries and beyond where we can help shed some light. How about for start--an article in like Woman's Day or any of magazines of that ilk which get wide readership so that people who may be suffering from undiagnosed POTS will have something to take to their doctors. We could probably go through old discussion forums and the information is right there. I'm sure many of us wouldn't mind sharing our stories and experiences. Any thoughts?????

Re: fluids Here is my take: Dr. Low told me that an infusion of IV fluids is not really the answer. He suggests salt, V-8, cold water, and sitting with your legs propped up. Last June, I had a terrible flare up of POTS and was hospitalized for two weeks. During the first week, my internist put me on IV fluids; the second week, a nephrologist thought I had diabetes insipidus. Moreover, I felt sleep deprived since I got up about 6-8 times per night. A few weeks later, I saw an expert on diabetes insipidus and he told me that IV fluids were a quick fix but your body can only retain so much. Moreover, with POTS, during the day when you are upright your body does its best to retain fluids to help maintain your blood pressure. At night (or when you lay down), you body releases those fluids since your blood pressure is generally higher when you are stretched out. Thus, a vicious cycle. Now wonder we all feel bad@

I am taking a very low dosage. I usually just take 1 in the morning. It gives me more enery to carry out my activities. My doc said the dose was so small not to worry about addiction. Moreover, I don't use it every day==only on those days when it is really an effort to get up out of bed.

Like all my "forum friends" before me, I endorse all their recommendations. One more point I would like to add...do not let the doctor's tell you that it is "all in your head, that you are imaging things, that it is stress, that it is nerves." The last time that I saw Dr. Low at the Mayo, he told me that doctors are wrong when they blame POTS systems as being "all in your head." He then said, yes, it is in your head but from the autonomic sense. Keep the faith! Never stop exploring possible avenues for alleviating your symptoms. Keep a positive attitude. I have had POTs since 1994. One suggestion...avoid any suggestion to have a cardiac ablation of the sinus node to stop the tachycardia. It doesn't work and causes more difficult problems. Feel better! Keep pushing doctors--try cardiologists, neurologists, and endocrinologists--somewhere in Alberta there is someone to help! Good luck!

Would be interested to know if any of you have tried Ritalin? One neurologist suggested that it might make you (with autonomic problems) function better as well as help with migraines. It seems to help for me. I think it is a good idea to always continue to seek new solutions to help alleviate our problems given no one seems to have a real grip on the matter. Your thoughts?

Confused...why do you all want to continuously monitor your heart rate. I know when I feel bad when my heart rate acelerates and what stops it somewhat (i.e., sitting or lyng down). Heck, I don't want to be tied to continuous monitoring. Don't you think that it makes you more depressed??

That's wonderful, Denabob!!! At least, you can get rid of that cast and return to some semblance of order. Hope you are feeling better.

Why are you stunned that insurance companies would consider paying for octreotide? Is there a $ limit at which insurance companies should no longer pay? I don't think so. There would indeed be some very difficult ethical questions to ask and be answered. goldicedance

Certainly do experience that symptom.

I have recently started taking this drug and it seems to be of some help. It is difficult to give you dosages, etc, because the dose must be titrated to your needs and reactions. I was flabbergasted when I picked up the 3-month supply and the price was about $6,000. And, that is for doses in varying strenghts. The stronger the dose, the more costly. This process involves monthly injections done at a doctor's office and injections you can do at home on a daily basis. I hope that this information is useful to you all.

Re: Octreotide Not to put the downers on this medication but it is more than extremely expensive. A 3-month supply is about $5,500. It is more expensive than gold! Goldicedance

I too have experienced benefits of WVU, the talent of Dr. Hoeldtke, and octreocide. Hopefully, the beneficial effects will continue. Only through the research efforts of doctors such as Dr. Hoeldtke can we expect to make any progress in returning to a semi-productive/productive life.

Had very bad migraine headaches. Most sever triggered by florinef. Am now contolled (somewhat) on high doses of neurontin, some zoloft, and ritalin. Maxalt works well for me. Migranal as a last home resort followed by DHE in hospital. Good luck!

Tried DDAVP. Big problem--low blood sodium in the morning. Also, understand that DDAVP should only be used in a pinch. Not good to use on a long-term basis.