jump

Going off 200 mg of a beta blocker could easily be causing your strange symptoms!! I only take 25 mg, and if I forget a dose my heart goes completely completely wacky. It probably isn't safe to just stop a medication that your body is used to without first talking to your doctor. I believe usually when people come off BB's they have to taper off slowly to avoid side effects.

I do get bradycardia, and I think it's fairly common with POTS. My heart rate when I'm sitting or resting is usually around 45 (sleeping goes into the 30s). But, when I'm on medication, it's always low; when I have a tachycardia episode, it may go up to 100-120, but on meds I don't hit the high rates I was getting before meds (180-200 range). So what concerns me about what you've described is that your tachycardias are really high compared to your bradycardias, and also that you don't usually HAVE bradycardia. If you had this more frequently, then I think it'd be easier to say it's just POTS and don't worry, but since it's new, you should probably get it checked out. Also, it sounds like this symptom is bothering you -- when I get bradycardic, most of the time it doesnt' affect me. In very extreme episodes, I"ll get very cold and unable to think clearly. But in my day-to-day life, a hr of 45 isn't even noticeable. If you notice symptoms in addition to hr, then it's worth getting attention for. I also get bradycardic after eating -- I have slow gastric emptying and GERD, but also after you eat, especially a bigger meal, your body sends more blood to your digestive system to help deal with the food. If you already have low blood volume, this will obviously aggravate your symptoms. Even if you're not, it can still cause bradycardia because of changes in where the blood volume is increasing/decreasing. I hope you find some relief! jump

OK, I feel a little crazy saying this, but I've noticed I often have a big increase in POTS symptoms (tachycardia, nausea, headaches, feeling out of breath, very tired) on days that are rainy or cloudy -- especially on really cloudy days right BEFORE it rains. Does anyone else have this? I'm wondering if it could be something like a response to pressure changes? I know some people get sore joints before it rains... is it possible to get headaches before it rains? Or is this just a funny coincidence? jump

YES!!! OMG yes. I get them all the time and there seems to be no rhyme or reason to it. I only just recently started wondering if it was somehow related to POTS/dysaut. A few years ago, my doc told me people who get them frequently do so if their body is deficient in vitamins. I have noticed that I get them more frequently if I'm busy and a I go a day or two without eating a lot of fruits and vegetables... but at the same time, none of my bloodwork has ever come back with vitamin deficiencies, so I'm not sure how accurate this is. But maybe try taking a vitamin and boosting your veggies, just in case it helps! I sure wish I knew the answer to this one! jump

For me I really didn't notice a significant increase in symptoms after I ate at all. It's been more just this chronic, persistent pain, all the time. I noticed it was a little worse in the morning, which I always assumed was just another weird POTS thing since everything feels worse in the morning, but now I suspect it's because lying down makes GERD worse. I think it's very possible to have GERD without the classic "burning after eating" problems.

I've found that gentle yoga that focuses on the shoulders, back, neck and arms helps a good deal. I think maybe because it increases the blood flow to that area? not sure. maybe it's just placebo, but it helps me!

My main symptoms are chronic chest pain that feels like a bruised sternum, a chronic sore throat, and sinus pain. I don't have the "classic" symptoms at all, although I do occasionally get a sharp chest pain that radiates to my left arm. My doc has decided it's probably GERD after ruling out heart and lung problems. It is important to rule out sinister heart problems, but if you have weird, unexplainable chest pain you might want to consider GERD. I've just been eating differently for a week and I already feel a lot better. I wish my doc and I had figured this out a long time ago! good luck, jump

Hello all, I've had chronic chest pain (literally every single day) for well over a year now, and always assumed it was related to having POTS but never had a doc who could explain it to me. Recently (in the past two months) I've also had a chronic sore throat and a cough, and I've noticed I get heartburn and regurgitation (gross, I know) more often. After reading articles on line, I'm starting to think maybe I have acid reflux disease, and maybe this chest pain is really caused by that (since nothing comes up wrong with my heart, thankfully). I've read that GERD can be caused by low gastric motility, which I know I have but don't take any drugs for. Do others with POTS have GERD, and is it a common side-effect of low motility? How do you deal with it? I'm worried about contacting my doctor, since she isn't very patient with me and treats me like a hypochondriac -- so I'm considering just changing my diet and taking OTC antacids and see if that helps. Is this wise or do I need to see my doc? Some things I read say that GERD is really common and not something to worry about, and some things I read say it needs to be montitored... Also, I'm going to try and eat a low-acid diet, but I haven't been able to find anything about what foods to eat/ what to avoid except to avoid caffeine and alcohol. But surely there are other things to avoid? If anyone knows of a website or resource about how to eat with GERD I'd really appreciate it! thanks jump

Oh my goodness no. Regular exercise does seem to help with symptoms, but I don't think there are too many people here who could exercise for an hour every day. I myself feel quite proud if I am able to exercise for 30 minutes three or four times a week. I think a lot of people here can manage much less than that. Start small and build up. Did your doctor recommend an exercise program for you?

Hon, I'm so sorry you felt so sick!!! And, whatever strange comfort it is, I think lots of people here will probably post about similar experiences. Basically a TTT is designed to trigger all your worst POTS or OI or NCS symptoms -- hence, it's designed to make you feel really badly. I don't faint easily, so, like you, I experienced really intense symptoms without passing out - so they kept me going for way too long. Finally they put me down because my numbers were scary, but for once I wished I'd had a lower fainting threshold just so I could've gotten it over with sooner! I felt sick for a good two days afterward. Just take it easy the next few days until you get back on your feet, and if you have good doctors you shouldn't ever have to do it again! take care of you, jump

I'm sure fluid is a big part of it, but I don't think it's the whole picture. I wake up every 1-2 hours because of polyuria, and for a while I experimented with drinking a lot of water every time I woke up to see if I would feel better in the morning, and even drinking all through the night didn't seem to help with my morning symptoms. Also, I've found that if I go to bed at 9 pm and wake up at 6 am, I feel just as sick as if I went to bed at 1 am and got up at 6; whereas if I go to bed at 3 am and wake up at 10 am I feel much much better than either 6-am scenerio. In other words, the hour that I get out of bed seems to affect my symptoms more than the total hours of sleep I get. I find it all very mysterious. jump

Hey Katja! I get low-grade fevers when I wear myself out and have a POTS episode. However, it's a good idea to keep getting tests done to rule out the many possibly causes of POTS (lyme disease, hepititis, autoimmune, various viral things....) because the fever symptom is sometimes a sign of an *underlying* disease. In my case they haven't been able to find anything underlying that would explain the fever, and as I've gotten these little fevers off and on for years, I no longer worry that it's something more serious and personally feel pretty certain that it's just POTS. Here are some articles that list low-grade, re-occuring fever as a symptom: http://www.steadyhealth.com/articles/Postu...TS__a81_f0.html http://home.att.net/~potsweb/POTS.html http://www.level1diet.com/63751_id good luck! jump

I think it does tend to vary by office and I'm not sure there is much you can do about that, short of writing up a protocol for yourself. Diagnostically speaking, it's an increase of 30 bpm or more OR a hr excessive of 120 anywhere from immediately upon standing (the surge) or within ten minutes of standing. So it shouldn't matter if it's not steady or if it's changing a lot so long as it's more than a 30-bpm change. I had a long history of orthostasis BEFORE developing POTS, and the protocol I was always taught was: sit or lie down for five minutes, take pulse first and then bp. Then stand for five minutes, then take pulse and bp again. If any of the numbers (pulse, systolic or diastolic) changes by 30 then one is considered to be in a state of orthostasis or orthostatic (either orthostatic bp or hr, or both, depending on which numbers changed). But, I only learned this from my own various doctors, I'm not by any means an expert, so I don't know if that's 100% correct. That's just what I was always told. It almost sounds like your nurses are confusing POTS with being orthostatic. really, your BP and HR logs should be enough for diagnosis, or a TTT. They shouldn't have to have a clear reading in the actual doctor's office and furthermore, I would think a weird reading (like never being able to find your pulse) would be indicative of diagnosis and cause them to consider further testing (like a TTT). Have they told you what they're hoping to achieve with the in-office readings? good luck, sounds frustrating! jump

I work part time and I work mostly in the afternoons and evenings. If I had to work full-time or in the morning I'm not sure I could manage, so I am grateful for what I have. In my case, I did not have to tell my work about my syndrome. I simply told them I wanted to work part-time and later in the day and they accommodated me without questions. Depending on how much/what kind of accommodation you need, you may not have to file anything formally just yet. Although if my job told me I had to start working mornings, I would def. get a signed/letterhead letter from my doc saying I can't.

I can't really shed much light (except that what you describe does sound very typical for POTS) but if you find out what causes your chest pain, come back and share!!! I have chest pain during "bad times" that feels exactly like I've been holding my breath for a long time (like how I used to feel as a child the day after I spent a day swimming). It's very painful and uncomfortable, but no docs have been able to either tell me why this happens or what I might do to relieve it. good luck with your new doc!! jump

Agreeing here, too!! Sounds like self-care to me. It seems like the real problem here is helping people in your life understand how best to help you. Perhaps if they had some concrete ways to help you cope, they wouldn't suggest pointless things like the therapist did. I *do* think that if there's something you really want to do, it's important to find ways to do it while still being respectful of your illness. Like if you really want to be able to go for walks, then start by taking short walks with someone and work your way up to it; I do believe if there's something you're really dreaming of, you should let yourself make small goals to work toward that dream even though you are sick. But that doesn't sound at all like what you are describing -- to me, it doesn't sound like you are wishing to do things but are too afraid. It sounds like you know your limits and, while of course you'd rather be well and not have to think about this, you've found a way to live your life and still take care of yourself. You feel happy with things - don't mess with success! Don't let others' judgments make you doubt your self. jump

My BBT is wacky (changes 1-2 degrees with no apparent corrolation to my cycle) but I've been told it's because I have hypothyroid disease.

My understanding is that if you have a harmless irregular heartbeat they call that a sinus arrhythmia, and don't really consider it an arrhythmia at all because it's harmless. At least that's what my doc told me. jump

Hey all, I'm having a VERY symptomatic week, and it's easily my worst week since I started taking medication in early March. I'm having such a hard time getting by.... Basically, I did too much and wore myself out, and now it seems I can't catch up. My very best friend got married yesterday, and the whole week was a whirlwind of showers, bachelorette parties, helping her get things ready, and then the actual ceremony. I tried to minimize what I volunteered to help out with, but I didn't want to miss her shower or anything important. I tried to sleep a lot and rest in between the busyness, but there were a few nights when I couldn't sleep from excitement and nervousness, and there were a few days when I was too busy to eat properly, and there was a lot of driving and walking around.... and now I'm paying for it. It's actually hard to type so I'm going to cut this short. I just needed to vent to people who understand. I feel like I didn't do a good job of balancing my limitations with other people's needs, and now I'm really hurtin' -- but at the same time, when I look back, I can't think of anything I could have done differently without either missing an important milestone or letting my best friend down. balance is so hard!!! thanks for listening, jump

Mornings are rough for me in the sense that I'm very tachycardic and dizzy and all that. But in the afternoons, I often "crash" too and it's a very different thing - I usually feel sick and need to lie down. I'm usually bradycardic in the afternoons (around 5 for me). I'm not sure why this happens. For me, because I go brady, I usually sit down and have some coffee and it passes in an hour or so. Have you found anything that helps you get through it? good luck, jump

Like others, I have too many symptoms to really keep track of, but these are the ones that BOTHER me the most: tachycardia when standing, sometimes with slightly elevated bp bradycardia irregular heartbeat excessive thirst polyuria stomach cramping and bloating, and extreme cold after eating IBS-like symptoms cold intolerance fatigue from all of the above difficulty sleeping (which I'm sure doesn't help the fatigue!) Most of the time, though, I can live with these things, as long as I don't expect too much from myself. Before I knew what was going on, I was constantly pushing myself to do more even when i felt sick -- and this in turn would trigger a period of serious unwellness. Now that I know to take my meds and not push myself, I can go along my day-to-day life in a relatively normal way, albeit modified. jump

I can relate to all of this so much!!! And I haven't come up with much that really helps... For so long I tried not to talk about it too much when I wasn't feeling well (I'm fairly functional most of the time, I just FEEL really sick). In a lot of ways I'm kicking myself for this, because now my friends are really baffled by the fact that I keep talking about this syndrome -- because they didn't really know I wasn't feeling well in the first place, you know? So now if I need to sit and rest, they definitely think I'm just being lazy. Or that I'm "out of shape" which is hilarious to me, because with POTS, I've pretty much given up on ever being "in shape" in the conventional sense of the term!! I really related to dreading people's oh so helpful suggestions-for-a-cure. My mother recently told me that she read that drinking water makes you thirsty, so maybe I'm actually just making myself thirsty by drinking so much and I'd be better off if I just had self-control and stopped drinking. Never mind that if I restrict my drinking I either pass out or get a migraine.... Once a friend was suggesting that maybe this was all in my head and I told her about how people used to believe cancer was a mental issue, too. Which is true -- it was formerly believed that cancer was caused by people retaining anger, and that really angry people who didn't "let it out" would develop cancer. Now, of course, we know that's silly. Telling my friend that kind of shut her up -- and helped her realize that just because we don't currently know all the medical science behind a problem doesn't mean it isn't medical; it just means medical science is an imperfect one. Sometimes when I get really frustrated by my friends' and familys' lack of understanding I just write about it. I spent twenty minutes just writing out all my complaints and how upset I am that they're not more empathetic. It's a slightly lonely way of dealing with it, but I really do feel better afterward. And I'm hoping that with time more of the people in my life will become more understanding. In the meantime it's nice to be understood here!! jump

Sorry to hear about your shoulder!! I am very clumsy and off-balance, especially in the mornings, because of POTS. I kind of teeter, especially if I move from standing still to walking. And I think it's fairly common to be more clumsy around "that time," so I would imagine the combination of POTS and hormones could make a person VERY clumsy. I also occasionally have the pounding hr when I first wake up. It can be kind of scary, because it completely immobilizes you. But my cardiologist assures me this is fine. In fact, he even likes to tell me it's normal. Ha! But I believe him that it's not dangerous, because otherwise I'd probably be dead by now. I used to play the French Horn too!! Such a lovely instrument. I stopped playing a few years ago when I finished college because I missed having a band to play with, but I really am not sure I could play it now with POTS. The breathing, I think, would just be too hard for me. But maybe it's something you could work up to, if you really love it? Or, if you're musically inclined, consider learning an instrument that doesn't use the breath, like guitar! Hope you feel better soon, jump

My POTS was triggered by severe and prolonged anorexia nervosa that I had as a teenager and young adult. Evidently, secondary autonomic dysfunction is very common in people with eating disorders, but typically, when the person gets better, the dysaut resolves itself. In my case for whatever reason it didn't go away, even though I have been very healthy and at a normal weight for many years now. I know POTS can sometimes be triggered by dramatic weightloss, so it makes sense. I had no POTS symptoms at all as a kid.

Sometimes being really bradycardic will cause me to cough. Maybe this is my body's way of trying to speed things up!!