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Hi Hollie, I take toprol xl (25 mg - a low dose) and it does help me. I had a low hr (45ish) for years not related to the beta blocker, and although I didn't like it (I felt sleepy and cold all the time) my cardiologist has insisted that there is nothing wrong with having a hr that low, provided it isn't caused by a sinister disease. Still, you should check with your own doc. I like the bb I'm on because while I still get tachycardic symptoms they are not as extreme. So far I haven't had any neg. side effects, but I also still have a lot of "weird" heart sensations. The bb's definitely aren't a cure-all for me, but they do help. Keep track of what you're noticing on your new med so you can talk about it with your doc. It might be a question of taking a different kind of beta blocker or taking a different dose. good luck, jump

I read on this website that people with dysautonomia have to let their anesthesiologists know about their condition before getting anesthesia. Is this true of people with POTS, or only those with other forms of dysautonomia? What is one supposed to tell their anesthesiologist, exactly? I asked my doctor about this and he said it's only a concern for people who have "really severe" autonomic dysfunction, but he also told me that lots of people my age (I'm 27) can't stand up for more than 5 minutes so I don't always trust that he knows a lot about this. What do I need to know, and what can I expect anesthesiologists to already be familiar with? thanks, jump

Well, I had a great suggestion from my doctor today. Actually, it probably would have made me really angry except that I knew I could come here and share it with all of you -- I am so grateful to have a place to share this stuff and be understood!!! I saw my cardiologist today and I told him that the beta blocker he gave me seemed to be helping some but not completely. I still have an orthostatic pulse in the morning (more than 30 diff. between standing and sitting) it's just not as extreme as it used to be, and I'm not as symptomatic in the afternoon which I'm grateful for. But, I was wondering if I higher dose of the beta blocker might help with the morning symptoms. To which my cardiologist replied that there are just some things about my body that I might not like that I just have to learn to accept. Like he, for example, was balding, and he didn't like that, but he just had to accept it. My body has a fluky response to being upright, and I just have to accept that. I thought, so.... is his balding interfering with his job and his social life? Because if so THEN maybe they'd be similar. But until his hair loss prevents him from being a cardiologist, I don't think it's really the same thing. Lol! jump

I've had similar problems with doctors. My doctor keeps referring to my "normal" tilt-table test where my hr went from 58 to 140 and my bp went from 120/88 to 90/60 to 155/85. Call it what you will, but that's definitely not "normal"! All the doctors I've met around here seem to think a TTT is only diagnostic if your bp drops and you faint, which didn't happen to me. Luckily they believe TTT's often give "false negatives," and they consider me to fall into this category. Although maybe if they took the time to read the articles I've given them about POTS they wouldn't have so many false negatives. jump

I had a good friend on neurontin for nerve pains (she doesn't have POTS) and she found the drug to be a godsend for the first three years. Then she started developing tachycardia as a result of the medication and had to stop taking it. I guess this is an unusual side-effect, but the chances of having it increase the longer you take it, and also increases if you go on and off and on again. jump

Welcome! I am sorry you and your daughter have to cope with this. But at least you are coping together. I also run a low-grade fever from time to time for no "reason" (ie no infection). I don't know what causes it, but I do know that for me the only thing that makes it go away is lots of rest and treating myself as if I really did have an infection (lots of sleep and fluids, stay home from work if possible, eat healthily, etc). I always get them when I'm run down, not getting enough sleep, working too much, not taking the time to prepare healthy meals, etc. Also, I suggest you have your daughter take her temp on a day when she's feeling well. Lots of people with POTS have a low "healthy" body temp (mine is 96.8 - 97.2) which can mean a "low-grade" temp like 100 or 101 might feel more tiring than it would to someone who's body temp is the average 98.6. Hope your daughter has better luck with doctors. She's lucky to have you. jump

I can tolerate one or two tiny glasses of white wine (2 oz glasses, not the big goblets that have become popular). The next day I am DEFINITELY more symptomatic, so I save it for special occasions like weddings and graduations. But, as others have pointed out, it can be really dangerous to mix meds and alcohol, especially things like kpins. Depending on the dosage it might be safest to just abstain. Strangely enough, I have one symptom that coffee actually HELPS, even though typically coffee makes me feel worse. Every once in a while my hr will slow down in the afternoon to about 55, and my heart will skip 3-4 times a minute for a few hours. And for some reason I've found that drinking about 6 oz of coffee makes the skipping stop. I have no idea what the science behind that is!! jump

Also massages and heated neck pads help. Doesn't really cure it per se, but makes it more tolerable. Sorry your daughter is experiencing this. jump

Hmmm this is something that's always been tricky for me, too. Most of my family is really understanding, but I have one or two friends who get impatient if I suddenly need to sit down or something. I've found that just holding out my wrist and telling them to take my pulse helps -- the definitely thought I was just "lazy" til they had some concrete evidence (like actually feeling my heart rate). For some reason, me just telling them about it or having them read about it didn't do anything. They needed "proof" with their own senses. But here's something else to think about. Years ago I dated a guy who had a really difficult time with all of this, similar in some ways to your BF - he was very sympathetic and wanted to be helpful, but I could tell he had trouble with the whole fine-one-day-sick-the-next thing. What we came to realize that the problem really was that he resented that I had something that always took precedence, and that he didn't have anything similar. Like if he wanted to go for a hike, if I said I felt sick then that was it, I wasn't going hiking with him and he couldn't really argue. He resented that something was in our lives that was so beyond his control and kept him from doing things he wanted to do (eg, hike with me). He was so bothered by not being able to control this that he took it out by trying to control *me* - with kind of a "tough love" attitude, like maybe if I just tried harder I could accommodate his wishes more. We didn't end up staying together (for reasons unrelated to this), but it did help when we finally realized that THIS was what was really bothering him. Bascially, he was unhappy with how my symptoms were affecting the relationship, and so he felt like if he could just "fix" me or control my symptoms, everything would be ok -- when really it was much more helpful to take the focus OFF my symptoms, and talk instead about how he was feeling/how he was being affected, and what we could do (besides me just "snapping out of it" which wasn't possible) to help him feel better. I have no way of knowing, of course, if your BF if feeling similarly, but I wonder if you had a real heart-to-heart about this if something might come up that ends up being helpful. Try steering the conversation away from your symptoms and his focus on them, and see if you can get him to tell you more of what he's thinking/feeling about all of this. Maybe that will help you know how to tackle it.

I'm having trouble getting the link in the second post to work. I, too, would like to know what are some signs/symptoms of hyperadrenic POTS, and what the other kind(s) are. I'm looking on this website but not finding it. I'm curious because my doc put me on Effexor and I had a really, really bad reaction to it which surprised her. But if POTS is related to norepinephrine (sp?) then maybe that's why.... jump

I teach, but I teach adults so it's a lot easier than children. If I'm having a "bad day" I just have a student volunteer to write on the board, pass out papers, etc, for me and I just sit. I don't have to discipline my students and I certainly don't have to chase them around like early elementary school work requires. It's good, too, because it's a split-shift day, so I can come home in between shifts and rest. The downside is my morning classes are early enough that there are days when I really feel too sick to work. I always go anyway, but I'm thinking of trying to cut back on my morning hours to help with this problem, if they let me. jump

In a word, yes. I try not to be obsessive about it, but I feel a lot better if I eat whole, unprocessed foods as much as possible (eg, a baked potato instead of crackers, home-made cupcakes instead of packaged, etc). One thing I've recently done is to stop drinking gatorade and to drink organic coconut juice instead. Gatorade made me feel better than water, but it always gave me kind of a burning sensation in my throat, I guess because it has all that citric acid and other preservatives. Coconut juice has the exact chemical make-up as human plasma -- in fact, in world war II they used to use it in IV's when they didn't have access to blood banks. I find it's just as helpful to combating my symptoms as the gatorade was, with the added bonus of no chemically "burn" sensation. It's a little hard to find and it took a while to get used to the taste, but I was starting to worry about how much gatorade I was drinking, and if the chemicals would eventually catch up with me. jump

:) OMG I'm actually sitting here at this computer and laughing out loud. This thread just tickles me. Here's mine: For four years I would go see my PCP every three or four months or so and complain about my funky heart and my excessive thirst, and I told her I always felt worse in the mornings. I would say things like, "Well, I can't wait in line without fainting" and "When I stand up my heart rate shoots up to 140" and she would say, without fail, "Oh, don't worry about that, that's normal." I would say, "Really? This doesn't happen to any of my friends or family members." And she would say, "Oh no, this happens to lots of people, it's perfectly normal." Then, finally, after four years of complaining about the same thing, I went in to complain yet again, and she came in and said, "I think I may have figured out your problem." I was so surprised, and asked what it could be. She asked: "Could you be pregnant?" And without thinking I said, "For FOUR YEARS?" At a different time, I met with a different doctor and told her all my symptoms. She kept making me appointments in the afternoon, and at that time I wasn't very symptomatic in the afternoons (this was in the beginning) so she never saw anything weird with my hr or bp in the office. When she said she didn't see anything unusual, I asked what could be the problem. She looked right at me and said, "Well, I think you're stubborn." So those are my diagnosises: stubborn and pregnant. jump

So far (only been a few days) I'm liking it as well. I do have a fast hr, but only when I'm standing up (ha ha. obviously). My sitting hr is usually around 55-65, and I was worried the bb would bring my resting hr down to 45-55 again, which I didn't like when I experienced it before. But so far my hr is just consistantly staying around 55-60, a little higher when waiting in line, but honestly I can't remember the last time my pulse was 70 STANDING so I'm pretty pleased. I still have symptoms in the morning, but hey, if I get afternoons "off" from the racing heart, I'm not going to complain. I have another question that relates. I asked my cardio if having a hr of 115-140 for a large majority of my waking day (because I don't have a job that just lets me sit all the time) would do any long-term damage to my heart, and he said no. I'm having trouble understanding how this could be true. If I did other things that made my heart race - take speed, drink too much coffee, compulsively exercise, that sort of thing - it would definitely damage my heart over the long term. So why are POTS-related heart symptoms different? Does anyone know why a POTS hr of 140 isn't dangerous, but a speed-induced hr of 140 is? Obviously I don't know much about medicine or how the body works, but I'm curious if someone could explain it to me. Hope this toprol continues to work for me (knock on wood...) thanks, jump

I want to second showering at night and wearing fingerless mittens! I carry my fingerless mittens in my purse and now that buildings have put their air conditioning on, let me tell you I really use them! I also want to add: - eating six small meals a day. Although I hate all that food prep, I find I really do feel better when I make the time to eat regularly. - if I have to fly (which I avoid as much as possible), I always schedule for the afternoons. Sometimes it's more expensive, but I've found that if I fly in the morning I'm so sick for so many days it's not worth the money I saved. - Periodically, I schedule a "sleep day" where I don't plan anything and I just get caught up on sleep & rest. I have a flexible job and no kids, which is probably why I can do this but I really find it makes a big difference. This thread actually really touched me. I've spent so long accommodating this syndrome and although I hate that all of you have to deal with this too, I'm also really, really comforted by the feeling of not being alone. To know that others can't tolerate blow-drying their hair is strangely comforting and makes me feel less lonely. I'm beginning to realize how much of my time is spent dealing with this, and while it's not the worst thing in the world, it means so very much to me to have "met" people who understand. jump

Thanks all, for your responses. This brings up something though that my doctors never seem to be able to answer. What hr and what blood pressure are TOO low? Years ago my resting hr was between 45-55, and I always thought this might be "too low" as I was always severely cold and felt sluggish a lot of the time, but my doctors always assured me that this was not too low. I asked what blood pressure was "too low" and they said it depends on the person. I don't think the meds will give me low bp, as lately my bp has tended to be on the high-normal end, but I did wonder about the wisdom of slowing down my hr when I have a history of what, to me, felt like a very slow hr. Have any of you had doctors that told you how low was too low? thanks, jump

I'm going to start taking 25 mg of Toprol XL (beta blocker) tomorrow and I was wondering what others experiences have been. Any bad side effects I should be on alert for? Anything else about it you'd like to share? My docs are not convinced a bb will be all that good for me but I kind of want to try anything to see if it will help. This is the first prescription med I've tried -- I tend to be a little wary of them. thanks all, jump

GI problems can also be a legit symptom of Depression and stress. I have a lot of IBS-like problems, but I don't have IBS. For me, the problems are a combination of low motility due to POTS, seasonal depression (obviously this is only an issue in the winter), and stress. When my POTS symptoms are worse (mornings, if I'm not well hydrated, if I'm over-tired, etc) my GI problems are worse. But if I am generally feeling great and I eat an IBS-triggering food (coffee, for example) it doesn't affect me at all (this is how I know it isn't "true" IBS, although IBS is a tough diagnosis anyway, so I'm not even sure "true" IBS even exists). You should definitely see a gastroenterologist (whew I don't know how to spell that), but know that if things are inconclusive, you're not alone. For me, I deal with it by knowing my triggers really well and avoiding them. Like I said, I know anything that triggers my other POTS symptoms will trigger GI problems as well -- so I don't have a hearty breakfast when I wake up early in the morning, for example. On the rare occasions that I have coffee, I drink it in the afternoons. I adhere to the six-small-meals-a-day routine to help with motility (although I'm not totally convinced this really helps). I've learned some exercises that help with motility as well. Pursue this, though! It's awful to go around with stomach problems and if someone can give you some help, great. If not, be your own detective and try to see what works best for you. I think POTS and IBS often show up together and/or have overlapping symptomology. good luck, jump

Thanks guys! I will definitely bring this up with my doc then. Sometimes I'm nervous about bringing something up that is "obviously" POTS because then my doctor just looks at me and says "That's normal for autonomic dysfunction" and I feel silly. I know I need to kind of 'get over' that feeling -- worrying what the doctors think certainly hasn't helped me in the past! -- but it's still reassuring to have a sounding board first. jump

I did read somewhere on line that antibiotics are contra-indicated for people with POTS. I personally can't take the 3-day high doses, I do better with the traditional 10-day lower doses. That being said, you'll have to take something because no one wants to just live with a UTI. Can you leave your doctor a message? Do you usually have sensitivity to medications? hope you feel better soon, jump

Hello all, I'm just trying to sort out which of my complaints are just a part of POTS and which I have to keep pursuing with a doctor! I have constant chest discomfort, like a weight on my chest. I always figured this was related to my fun heart doing it's fun and crazy things. But recently I was talking to a friend (who has no medical experience, mind you) who said that if it hurts more when I take a deep breath (which it does) then that means there's something wrong with my lungs. So my questions are 1) can POTS-related chest pain increase with breathing? and 2) are there any lung problems associated with POTS that might be causing this symptom? Thanks! I'm still learning so much about this... it's such a relief to be able to ask questions without worrying people are going to look at you like this hehe. I just discovered those smilies, can anyone tell? take care, jump

oh and PS -- My mom has diagnosed NCS, although it was never really treated and after she went through menopause it went away. I do think this stuff runs in families.

((Bluesky))) I'm sorry you're going through such a hard time! My doctor did tell me that false negatives for TTTs happen all the time while false positives do not -- in other words, if you have a TTT and you faint, it's a confirmation of diagnosis, while if you have a TTT and you don't faint, it doesn't mean you don't have POTS. My doc also told me that diagnosis of POTS and several other things in the dysautonomia spectrum are diagnosed "clinically," meaning you may have lots of tests done to help with a diagnosis, but the deciding factor is the doctor listening to your personal history. For example, I don't have low blood pressure upon standing, so when I first had a TTT it came back negative; also, they did the test in the afternoon on a day when I happened to be feeling better than normal. But when I went over my history (I kept track of all of my symptoms for a week) my doctor felt it was obviously POTS, despite the fact that my TTT had been negative. And when he looked back at my record, he did notice that although I didn't faint, my hr went from 55 supine to 150 upright during the TTT -- something they originally overlooked because my bp didn't change and I didn't faint. He still had me do a few more tests to rule out sinister causes, but the diagnosis was based on his medical interpretation of all of my symptoms, not on any one test. So if you do have a TTT and it comes back negative, make sure you still pursue some kind of diagnosis -- basically what I'm saying is, if you get the test and they say there's nothing wrong with you, it doesn't mean there's nothing wrong with you. Also, consider making an appointment with a neurologist instead of a cardiologist, and don't be afraid to say you've done a lot of research and autonomic dysfunction is the only thing you've found that sounds like it might be what you're suffering from. Also, be very specific when you describe your symptoms about how much they are interfering with your daily life -- in my experience, doctors are much more interested in "getting to the bottom of it" if it's seriously impairing you. When I first sought help for this, I would just go to my PCP and say, "well, I don't know, my heart does this funny thing...." It was only when I said "I can't stand up to teach my class and I can't go for hikes that I used to be able to hike last month" etc. that they really paid attention and took me seriously. Good luck, and I hope you find someone who can help you. jump

Actually, this has been what's worked best for me. I live in a very rural area, and it took me four years of complaining to my PCP before she OKed me to see a cardiologist -- and even that was only because I was about to run out of health insurance. The cardiologist diagnosed me, but the few neurologists within driving distance really don't know much about POTS, and, like another poster said, because mine isn't crippling (I can still work part-time, I can still do a lot of things I love, like walking and hiking, on some days. Just some days I can't) everyone took the attitude of, "Well, at least it isn't worse.... just keep drinking lots of water." When I printed out all the articles I could find on POTS and brought them in, it was really helpful, and my cardiologist was actually glad that I did -- he knows he's not a neurologist, and he also knows he doesn't have time to spend doing special research for one patient. He was willing to have me try a few things based on the advice in these articles -- so it's been kind of a joint effort, with me finding information and suggesting things to try, and him sorting through the information and OKing my ideas or not. It's not as validating or comforting as a doctor who just says "I know exactly what's wrong with you and I know how to fix it!" But I don't think there are too many doctors out there who can do that for people with autonomic dysfunction. I can also related to the family & friends thing. While my family really helped me push to get a diagnosis (they were really worried about my symptoms), now that it's "chronic" they have a harder time being sympathetic. If one day I can help around the house, I have energy, I can go out, etc and then the next day suddenly it's all I can do to get through work and I have to sleep the rest of the day, to them it looks like I just use my symptoms as an excuse to be lazy. And, although it hurts me to have them think this, I can kind of understand it -- it's a very "invisible" syndrome in a lot of ways. If you can find a doctor in Toronto who is at least a good listener and takes you seriously, that might be your best bet if you can't find a specialist. Good luck! Jump

Sometimes my resting hr is high, 90-100. This is especially true if I am sitting, but lately even my true resting hr (lying down) has been higher than normal (never used to get above 50, now it's usually 75 or 80). I'm not sure why it's changed for me, but you can def. have POTS with a high resting hr. welcome!