India

Amen to everything that has been written so far and cut out any alcohol as well. If you feel as if you are having "skipped" beats or that your heart momentarily stops as some people describe it, I have been told (and have practiced to good effect) coughing and or bearing down. Not sure why this works. A cardiologist also told me that exercise will lessen the frequency of irregualr beats although for some people exercise induced adrenergic excess can actually exacerbate problems (as with me). Keeping cool seems to help too and getting proper sleep. I take 25mg of atenolol which has helped with but not eliminated the problem. India

I'm a professor at a small liberal arts college in Hawai'i. Although a lot of my time is spent in front of a computer and therefore sitting, a lot of it is spent lecturing in front of a class. I always have been a very animated person and so I tend to walk around a lot in my classes which seems to keep the POTS symptoms at bay. I've also learnt to do this, however, as I found that standing still at a lecturn would leave me feeling dizzy after about 15 minutes of not moving my legs. The greatest difficulty for me is when I have to give formal lectures at professional conferences where the standard delivery method is to park yourself rigidly at a lecturn and babble on for 45 minutes without moving. I actually had to halt a lecture once because I blacked out! The other major problem I have is being too tired and too "foggy" to concentrate and this sometimes makes grading and grappling with some abtuse historical controversy very exhausting (I'm a history professor). On the whole though, I count myself as very fortunate in having chosen the profession I have under these circumstances. I've been one of the lucky ones in that I haven't had to miss too much work. But there have been days when I could not get out of bed because I was too dizzy. I've also been lucky to have a very understanding boss and very supportive colleagues who have stepped in to cover classes for me. On days I feel particularly potsy at work, I just sit down and lecture or I adapt my class so that the students work on projects without the need for me to be up there talking all the time. Again, I'm lucky that I have a job that is flexible enough to allow me to do that and a job in which I have a good deal of autonomy and not a lot of supervision. As to hobbies, I used to be very very active before the whole POTS thing blew up. I love sports and miss participating in them as much as I used to. I have problems with hyperadrenergic excess that exercise sometimes exacerbates. But I do what I can when I feel well. I play tennis, I try to walk every day, and I've even been known to boogie board on occasion. I love to read, but find that more taxing than it used to be: sometimes I can read a couple of pages and have no idea what I just read! I've heard people elsewhere talk about "autonomic storms:" episodes of severe POTSY symptoms which are compeltely debilitating. These are interspersed by periods of relative normality. And I think I'm one of those people who is on that kind of roller coaster. Although it flies against every grain in my personality, I've had to learn to deal with that and take advantage of the good days and not get too stressed out when I have the bad days (I know, easier said than done, eh?) I jsut wish someone could work out why these storms occur. The lack of energy I have comes not just from trying to get through every day but also doing everything I can to research this issue and to try and make my life more livable.

I have had almost the opposite reaction to beta blocker types, which shows how different we all are. I was on nadalol for years and it made me, if not depressed, then very down, anxious, and extremely tired. I was switched to atenolol and tolerated that much better. On both beta blockers I felt breathless from time to time and was told by various cardiologists that this was just a common side-effect of the medication (like that made me feel better!) Recently, my breathlessness has become much worse. A visit to my cardiologist this morning resulted in a reduction in my dosage of atenolol so we will see how it goes. I too was prescribed albuterol by my family doctor but did not take it as my cardiologist said that it would just increase my tachy episodes and probably make me feel MORE s.o.b. than less. She believes that the beta-blocker is the culprit, perhaps in combination with the florinef that I just started two months ago. As the florinef is keeping me upright, however, (far fewer dizzy attacks and no --fingers crossed--fainting) she would rather reduce my beta-blocker than take me off the florinef. The bottom line is, everyone seems to react differently to these meds, which I know is certainly no comfort. I guess we all have to find what works specifically for us. Anyway, good luck and my heart goes out to you. I too feel like a guinea pig. Shouldn't medical test subjects be compensated in some way?!!! India

My chest pain was so severe last year when I was exercising, before I was diagnosed with POTS, that I was hospitalized and had the treadmill stress test, heart monitoring etc etc. All tests were negative. When I finally had a positive tilt table test and was diagnosed with POTS my doctor explained that chest pain was common in people with the disorder and might be present during exercise or at rest. My pain tends to come and go with seemingly no reason. As with a lot of POTS symptoms, you just have to do what you can do when you can do it. I find it very difficult to resign myself to that reality having been a very active person all my life. However, on the positive side, if the chest pains are POTS related, the literature I have read says that they are not related to or prescient of a serious heart problem. India

I was substantially overweight when I first developed POTS (although was not diagnosed at this point). As I have posted elsewhere, I lost a lot of weight last year, although not to the point of being thin but rather within a healthy range for my height. I felt a whole lot worse when I lost the weight! Here I was, thinking I was doing something good for my body, and my body rebelled! I'm now on florinef and the dizzy spells and syncope have been absent for the month I have been on it (yipee!) But I still have other POTS related symptoms. India

Melly, I think I have exactly the same issues as you. When I am conscious of being s.o.b I think I overcompensate and end up overbreathing. Then I get all panicky and everything gets worse. I've tried the belly breathing and I've tried short in breaths and long outbreaths. It works sometimes but at others I find it just makes me more conscious about my respiration I too have no heart disease and have had stress tests and the super enjoyable electrophysiological study of my heart to look for arrhythmmias (I can never spell that word right ) but they all came back negative. So I guess it must be the POTS. I was sitting here typing earlier and I went s.o.b all of a sudden and now I'm o.k. It just frustrates me that neither I nor the docs can pinpoint the triggers. On that point, the only doc I knew in Hawaii that knew something about POTS has left (aagh) Are there any other Hawaii POTS sufferers out there who know someone who knows something? My current cardiologist is clueless. India

As a previous poster mentioned, keeping your legs strong is key. I've been really helped by my rowing machine, which, if you do it properly and push with your legs first and not pull with your arms, really helps to strengthen your legs. I am also sitting down which really helps. I just can't tolerate aerobics or anything like that which requires uprightness for so long! Pilates has been good too as, again, you can do a lot of the exercises in a recumbent position. I also find that I have to be in a really cool room. My body can't cope with the stress of exercising and having to keep itself cool: I get very tachy very quickly if I exercise in heat. But I'll agree that it's a frustrating experience because some days you'll feel as close to fine as you can and then the next day just a couple of pulls on the machine sets my hr skyrocketing. A beta blocker has helped a bit but too much beta blocker drops my BP. It's a catch-22 situation! Let us know if anything works for you and good luck. India

During the tilt table test I was 55/47 and the doc was amazed that I didn't black out. I've never managed to take an accurate measure of my BP when I feel really bad as moving around to get my bp monitor always pushes the rate up a bit! But I am sure I probably get down into the tilt table range. I tend to run in the 100-110/60-70 range. I take 25mg of Atenolol per day as I get very bad adrenergic excess attacks and this probably keeps it down. I do find, however, that when I feel slightly off my systolic may be o.k--100-107--but my diastolic is low. This morning, for example, I was 107/45 and felt very s.o.b. Does anyone else have this problem or is this not a POTS related issue? India

Thanks so much to everyone who replied. I am certainly hoping that the florinef can do something for me. Your concern came at just the right time. I don't want to abuse this forum by getting too off topic, but this has been a horrible six months for me: my father passed away at a relatively young age, one of my beloved rescue cats died, and just yesterday her daughter passed away suddenly too. I am just so stressed at the moment and usually that sends me into a potshole, but fingers crossed, I'm surviving and haven't felt dizzy once for six days (higholy unusual for me in the best of circumstances) I guess the florinef can't be working after only a week of taking it, can it? Anyway, thanks for all your support and love. India

In the eight months before I was diagnosed with POTS, my lovely husband drove me to the ER four times--three times in the middle of the night--and my employers called 911 once. On two occasions I was kept in overnight as they saw changes in my EKG. On one occasion, the attending ER doctor was so insulting and condescending--"female problems...anxiety..wasting our time"--I reported him. On one occasion when I was taken by ambulance after my diagnosis to an unfamiliar ER, the doctor had never heard of POTS and seemed entirely sceptical as to its existence. So, I've not had a very positive experience with ER's. Like the previous poster said, I've had more success talking with my doctor's nurse who is familiar with the symptoms and can give more pertinent and comforting advice. India

My doc has recently prescribed florinef (.1mg/day) after exhausting other options--midodrine rocketed my heart rate to unbearable levels, paxil just worsened my sleep problems and caused terrible anxiety, and both failed to solve any of my POTS related symptoms. I took the first dose today after putting it off for about two weeks. Obviously I'm not feeling anything as yet. But, having searched the archives here for florinef I am obviously anxious about the side effects. I asked my doctor what the most common side effects were and she casually said, "oh, not serious, just a bit of water retention." Having read the archives, however, I am now completely freaked about the possible side-effects that people reported, especially the headaches and weight gain. I suffer from severe headaches anyway and don't want to make them worse. And as for the weight gain--this is going to sound extremely vain--but I recently finished the only successful diet I've ever been on (lost 45lbs) all in an effort to make myself feel physically well after feeling awful for about 10 years while I waited for someone to diagnose me. Anyway, I just don't want to put any back on--I don't think my fragile self-confidence will take that! Is there anyone out there who has had a positive result with florinef? On such a low dose should I be taking potassium supplements too? I resolved at the beginning of this year to try and be more positive and harness the power of self-healing. But it is sooooo hard to do when everything they prescribe just makes me feel worse. I've completely forgotten what it is like to feel "well." At the moment I'll settle for feeling "better" than yesterday! The best medicine I've found so far are the inspiring stories on this site. So thanks to all of you! India

I was finally diagnosed with POTS in January of this year after years of suffering the dizziness, syncope, sweating, tremors, fast hearbeat etc etc with which we are all so, unfortunately, familiar. Since the beginning of my symptoms twelve years ago I've had periodic problems sleeping and would wake up in the middle of the night gasping for breath and/or with with my heart pounding. Scores of doctors put this down to anxiety. The episodes got more frequent over the past three years and although I would not always wake up with either SOB or noticeable heart pounding, my sleep has been seriously disturbed: on an average night I will wake up at least five times and often have terrible trouble getting back to sleep. Needlesstosay my lack of sleep was creating my POTSholes and I think I've felt worse over the past twelve months than I have over the past twelve years. To add to all this, I've been under enormous stress: my husband has been ill for three years and my very young father, with whom I was very close, was diagnosed with a brain tumor last August and passed away two months ago. My beloved cat died and my Uncle nearly died from a burst aortic aneyurysm (which runs in the male side of our family) all within the space of a few weeks of my father's diagnosis. Add to this the stress of having to defend attacks on my job at work and I can say that this has been a tremendously trying year. Anyway, I am sure this has all contributed to my sleeping problems. But finally, and after my positive tilt table test I persuaded a sympathetic family practitioner to order a sleep study, having read about the incidence of POTS and sleep apnea. O.K. Here's my question. I had the sleep study last night and although the final results are of course not in, the tech did tell me that she observed no cessations of breathing. But she did observe that I had several tachy incidents at night and these seem to be connected with my nocturnal awakenings. I was only aware of the palpitations once, however. Does any one else have these symptoms and are they a manifestation of POTS or something else? I've had holter studies in the past which showed nothing--but of course we never have symptoms when we are tested, do we? I currently take 25mg of Atenolol because I've got the hyperadrenergic type of POTS. I've tried Midodrine and Paxil but had more tachy episodes on these meds and so stopped. Now the doctor who diagnosed my POTS--and seems to be the only medical professional I can find in Hawaii who has any experience with this problem--has left the islands! HELP! A very, very tired, India

I'm fairly new to the forum, so apologies if this subject has come up before... Does anyone else experience a worsening of their POTS symptoms during their period? Over the past year in particular, almost every month, things get a lot worse for me. The light-headedness increases, I get more near-syncopal episodes, I get sweaty, shakey, and very nauseaus too. My tachy episodes also seem to get worse and I am more apt to be more out of breath on more occasions than usual. Is this due to blood loss--I'm mildly anemic and take iron supplements--lower blood volume, hormonal changes, or the stress associated with menstruation? And is there anything I can do about it? As an aside, my doctor prescribed midodrine for my POTS back in January and it is making me feel much worse--many more tachy episodes than before. I felt so awful that I've stopped taking it. How have other people done on midodrine? Is this just a period of adjustment to the drug? My doctor has been less than helpful on this front. India

I live in Hawai'i (I know I am not going to get much sympathy for that!) and when the trade winds drop and the temperature soars, I am pretty much unable to function. I try to keep as fit as possible but am totally unable to exercise during the day when it is hot outside. I took tennis lessons at 8am in the morning last summer and even that was too much for me most of the time. My body simply cannot seem to cope with the demands of exercise and regulating my body temperature. I used to be an extremely active person. But now, the most I can manage is walking in the evenings after it has gotten dark and hence cooler with my husband. My exercise tolerance is much better in cooler climates but, as my trip to England recently demonstrated, I have to wear layer upon layer of sweaters and thick fuzzy socks to keep warm! I'm sitting in my office at the moment and have managed to adjust the a/c to a comfortable level for me. But I find that if the powers that be determine the a/c needs to go up I have to put a sweater on! Consequently, I always carry around various clothing items with me and even a pocket fan. My girl scout training is kicking in here--Be Prepared! India

Radha, I too have had tachy episodes after eating for years, but they come and go over the course of months for no seeming reason at all. Like Danelle, the one thing I have found can help is to eat very small portions and to eat them very slowly--which frustrates the heck out of my shoveling husband! I also do better when I am eating in a well ventilated room--any heat at all makes it a whole lot worse. Avoiding sulfites and anything heavy is a good idea too. A friend of mine who suffers similarly, swears she feels better when she "sits up properly like my mother tod me (!)" at the dining table rather than slumped over her desk at work or on the sofa in front of the t.v. I've also heard that magnesium supplements are supposed to help tachy palps but also that they reduce blood pressure which is not good for pots. I haven't tried them myself. Has anyone else? India

Hi James, I've had similar pains on and off for the past few years: on a couple of occasions they took me to the emergency room. I had all the usual tests and of course they came back negative for any heart related problems. As a couple of the other posters suggest, POTS sufferers seem to commonly suffer from such pain although the cause is not clear. What one of my many doctors suggested, however, is that, in my case, the pain may be related to recurrent GI problems (also a common issue with POTS sufferers). I too seem to suffer the pain after alcohol or spicy foods. Apparently, GI problems can often manifest themselves in chest/rib pain based on how pain pathways are formed when we are very young. Hence some people's GI pain manifests itself as back pain, another's as chest pain etc. I've been on various GI meds--including ranitidine and prilosec--and they did provide some relief. But I would not recommend long-term use of these meds as they seem to cause more GI problems than they solve in many people by upsetting the healthy bacteria balance in your gut. Of course, stressing about all this will make the pain worse, whatever the cause. So as long as you get any heart related causes ruled out, I suggest you keep on with the exercise as far as you are able as that is what helped me both reduce the stress and relieve some of my GI symptoms. Good luck! India P.S. As a "newbie" I've got to add that it is such a relief to find people out there who can identify with all the curious symptoms I had for the ten years before I got a diagnosis. Thanks to you all!

Brwneyedchica, I too have been very lucky in having an understanding partner. However, many years ago, before my diagnosis, he too was having problems coping with my condition--especially my fatigue, needing to rest a lot, and consequently not feeling very sociable. Since then, he has been diagnosed with fibromyalgia--a condition with many of the same symptoms as POTS, especially the fatigue--and I think he finally understood what I had been suffering for years. It's awful that someone has to suffer too to empathize with how I am feeling and his illness has in some ways added to my own strain. But he has been wonderfully supportive as a result. I'm not the most communicative individual regarding my feelings either--I come from a family whose attitude to illness was to put up, shut up, and carry on. And while this can have its benefits, you can't expect your partner to be a mind reader. And I've found that if I am more communicative about how I am feeling, it has really helped him to understand that this is an ongoing problem, not just an occasional inconvenience, and we have both been able to adjust our lives somewhat. Self-counseling has also really helped us (too short on cash for a "live" therapist!) and talking to couples who share similar predicaments. We've both read extensively about each other's condition as well. I guess we have learnt enough to understand that both of us need support and that means sacrificing some things, but that it also means allowing the other to do what he or she wants and alone or with other friends if necessary. Life has to go on and we try to make it as normal as possible. Bottom line after all this rambling: there are guys out there who will and can cope with your illness. But this may be something that has to be "learned": it doesn't always come ready made off the rack!

1. Name: Allison 2. Age: 37 3. DX: POTS 4. Age at DX: 37 5. Where you live: Hawai'i 6. Symptoms at worst: blackouts and near blackouts, extreme dizziness, nausea, profuse sweating, fast h.r., palpitations, insomina, GI problems, fatigue, exercise intolerance, memory problems, visual disturbances, tinnitus, s.o.b, numbness in hands and feet, excessive urination, heat intolerance, chest pains, unable to function at work 7. Symptoms at best: insomnia maybe only twice a week and can function fairly well 8. Medications/treatments that did not work: Newly diagnosed so am just starting a treatment/medication regimen 9. Medications/treatments that did work: As of 2/2005 I have been on Midodrine for two weeks. I feel a lot peppier, but I am also getting more palpitations and will have to be re-evaluated. Also take Atenolol for adrenalin sensitivity and this seems to lessen the frequency of tachy episodes.

Hi, I'm so glad to have found this forum. I'm 37 and was finally diagnosed with POTS last Thursday after a ten year struggle to get a definitive diagnosis. I am convinced that I have suffered from it a lot longer--I vividly remember near syncopal episodes in interminably long choir performances in school! Mild symptoms--episodes of tachycardia--started in 1994. For years they were ascribed to "stress" and the usual "female problems." I then began to have the occasional fainting episodes and more commonly near fainting episodes on standing. I was prescribed beta-blockers for a while after several holter monitor tests. But the attitude of my doctors was generally condescending and their unanimous opinion was that I was "highly strung." Over the years I really began to doubt my sanity and would have bought into my doctor's "diagnosis" had it not been for my husband, who, knowing me perhaps better than I knew myself, was convinced that there was something physically wrong and that I was certainly not the sort of person to succumb to some phantom illness. I was also fortunate enough to relocate across the country to a new job and to find a new doctor about a year ago who had experience with POTS. Thus, after many, many tests--including an electro-physiological study of my heart (lots of fun!)--I finally had a tilt test last week. After about 15 minutes my heart rate shot up to 139 and my bp shot down to 50/42, I had the sweats, the tremors, all the usual stuff. And there I was, with finally a diagnosis and prescription for midodrine. I was so relieved that I burst into tears in the exam room! I wasn't crazy afterall. My question is this. Over the past year, my symptoms had gotten much worse. This I initially associated with living in a much warmer climate--my symptoms had always seemed to get worse in summer where I lived before. And where I live now it is really summer all year round. But, I am now also wondering if the worsening of my symptoms has to do with my weightloss. Trying to be pro-active before I had been diagnosed. I decided to embark on a fitness program and lost 45lbs. The weight loss was not rapid--it occurred over a period of seven to eight months. But I am wondering if this contributed to my symptoms and whether my body might "readjust" to the new svelte, but more syncopal me!