jump

Waterbaby, your story is amazing! Is it possible to get transdermal B1 and magnesium over-the-counter, or does one need a prescription? Thanks, jump

You know, if you feel comfortable doing so, you may want to gather other parents and protest this requirement. I ran competitively throughout my adolescence and young adulthood (until getting POTS! Sigh...) and even though my highschool cross-country running team was #1 in the state, our coach never would have required seven-minute miles for all the athletes. It isn't reasonable or healthy for ANY young woman, and probably not within reach of a teen with POTS. Running is the biggest trigger for the female athlete triad in teens - loss of menstruation, bone loss, and disordered eating. While of course running may be an aspect of any high-profile team, I think it is probably very risky coaching to make such a fast time be such a large focus of any teenage girls team. Women are not built the same as men and overly-strenuous running can be very risky to any woman under 25, even a very healthy one. You may want to do a little research on young female athletes and the importance of preserving bone and joint health and present this information to your volleyball coach. This to me seems like an unreasonable and potentially dangerous requirement for a highschool team, POTS and asthma aside. And like I said, I have over 15 years competitive running experience myself. Good luck, and I hope you and your daughter can find a solution for this that leaves her feeling good about herself. If she has to not try out for the team, keep reminding her that it has to do with the requirement being unreasonable, not her being a sub-par athlete. Jum

Hi Richard! Welcome! Although sorry to hear you're in this boat as well. I have POTS and I believe mine is related to both excessive exercise and hypothyroidism - or at least exacerbated by those two things, even if they weren't the root cause. So I related a lot to what you had to say. When I went to my PCP with this, I brought several articles printed off this website and I also brought a detailed list of my symptoms and their severity and frequency. And I also brought a detailed list of all the symptoms I experienced for one week. It was a pain in the neck keeping track of EVERY symptom for a whole week, but it really helped my PCP see how much this was affecting my life on a day-to-day level. Also, being a doctor, she was more impressed by concrete numbers ("Your heart rate goes from 55 to 140??") than she was by descriptions (when I said "My heart races so much I can't stand up" she wasn't nearly as concerned as when she saw hard and fast numbers). I would recommend that you bring as much documentation as you think is relevant. While you're waiting for the appointment, there's a lot of good things on this website you can try to alleviate symptoms. I find that taking magnesium and B-complex supplements, drinking a LOT of water and a lot of isotonic drinks (my favorite is coconut juice) and getting plenty of sleep really helps. I find mild exercise helps too, but I really couldn't do much until after I started taking medication that helped with the OI. I would say do as much exercise as you can without being ridiculously uncomfortable -- if the treadmill brings on episodes of symptoms, it might be best to try a milder form of exercise until you're feeling better. Good luck! Let us know how the appointment goes. Jump

Hello all, This article was in the NY Times Magazine today (Sunday). Although it doesn't go into much depth *about* POTS, it does illustrate very well how frustrating and scary the diagnosis process can be. Reading it made me feel better about how much trouble I had getting diagnosed, although I felt sorry that the subject of the article had to suffer so much before he got help. You can read it here: http://www.nytimes.com/2008/06/15/magazine...amp;oref=slogin Or if that link doesn't work, you can go to : http://www.nytimes.com/2008/06/15/magazine...xprod=permalink Or go to "NY Times Magazine" and click on the story titled "Diagnosis - Strange Spells." Sorry, I'm not all that technologically savvy... - jump

Hey, I just wanted to chime in too. *Kitchmill* is right that everyone's different! Even if your levels come back normal it might not be the right dose for you personally. A healthy thyroid hormone reading is anywhere between , but each individual person usually has a smaller range that they feel well in. Leg pain, hot flashes and hunger are all signs of hyperthyroid, but sometimes the first few days or first two weeks of starting a medication can cause these symptoms and then they go away. If you've been taking synthroid for a while and you still have these symptoms, you might want to talk to your doc about possibly lowering your dose -- keep you still in the "healthy" TSH range but at a place where you feel good. My big indicators that my meds are off are my hair starts falling out, I'm really tired, I usually gain five pounds overnight, and I get irritable and impatient. But it's different for everyone. My sister also has hypothyroid, and when she's on too much medication she's wired and overly energetic and really hungry, and when she's on too little she's sluggish and exhausted. Also, I know I mentioned this before, but some thyroid meds are tolerated better than others. Sythroid is the most frequently prescribed, but I personally couldn't tolerate it. I take a different medication now and I really feel a lot better. Sometimes it's a little trial-and-error to get the right medication and the right dose. A lot of the symtpoms of hypothyroid and POTS overlap, but I find I can usually differentiate by noticing which ones are constant and which ones change from day to day. For example, fatigue can be hypothyroid or POTS. If one morning I'm really exhausted but it abates by the afternoon, or if it only lasts a few days, then I know it's POTS. If I'm always exhausted every day for a stretch of time, then I know my medication is probably off. The dose of medication you need for hypothyroid is affect by other meds and is also affected by the time of year. I need more medication in the winter than in the summer, and when I started taking a beta blocker I also had to adjust my dose. Something to keep in mind -- that's why you should have your TSH levels tested every so often even if you've found a dose that works. Jump

Um.... I've received the most help from this website!!! I've really received no significant care beyond diagnosis, which was done with my PCP and local hospital. I haven't found much help for symptom management, but I'm getting by.... and it's hard to get motivated to find better care when it's not an emergency. jump

You know, it hadn't occurred to me to try propping myself up more! Makes logical sense, though. I will try that and see if it helps. Medicalenigma, I have palpitations when I wake up too, although usually only if I wake up from a daytime nap. If I wake up early in the morning I don't have them as frequently. I've found that if I sit up on the couch with my feet up and drink something isotonic (I personally drink coconut water but gatorade or similar drinks also work just fine) and give myself about fifteen minutes of sitting and sipping then they usually go away and I can start my day. It's a horrible way to wake up, for sure, but once I started anticpating this problem ("OK, I know when I wake up from this nap I'm going to have to sit and drink for a little while....") it didn't feel so awful to deal with. thanks guys, jump

Hey all, When I lie down to go to bed my heart skips a lot of beats (between five and fifteen skips per minute, for usually about an hour to an hour and a half). It's not a medical concern (they did a holter monitor test) but it prevents me from falling asleep. The skipping causes me to cough and makes it difficult to breath, and just is uncomfortable and weird-feeling. I've tried lying on my right side, my left side, my back, my stomach - no position seems to really help much. I'm taking a beta blocker but it doesn't seem to do anything for this skipping. Is there anything else I could do or take that might help? It's not a huge problem, but sleep is so precious I like to try anything that might help me get more of it! thanks, jump

Although I often feel poorly while I'm exercising, and afterward I might feel exhausted for an hour or two, I do find that generally speaking I feel better when I exercise a few times a week. Even walking slowly helps me have less severe symptoms. jump

Ginger pills also work wonders for me! And strangely enough dramamine or other motion sickness medications. hope you find something that works!

This has all been very interesting!! As it happened, I was experiencing these things before I started taking medication. I teach for six hours a day, and so was standing for six hours a day and on a "good" day my heart would be between 140-160 for all of those six hours. On a "bad" day it would be higher and I'd have to sit down and have my students write on the board, etc, for me. This was one of the reasons I initially sought help, because the "bad" days were becoming so frequent that it was interfering with my work. Around this time I was also mildly tachy even when sitting (100-110) so I felt like my heart was NEVER getting a rest except for the hours that I slept (when it would go down to 55). Before developing POTS, I did used to run for upwards of six hours a day (I was training for marathons, and I had poor guidance). I ended up over-training my heart and developing an arrythmia, and at the time the doc specifically said it was because my heart was beating more than 100 bpm for more than an hour or two a day. This made me wonder what the difference is between excercise or stimulant-induced tachycardia and regular POTS tachycardia, since my doc told me that if I left my POTS untreated it wouldn't cause any harm to my heart (despite the long hours of tachy when untreated). But, now I take meds and I'm not so tachy when I work. And I very much believe that POTS tachycarida isn't harmful, I was just curious about the why of it all. And I suppose that since I'm not as tachy for as long anymore, and since we at least know it ISN'T harmful, it doesn't matter why!!! jump

I know I already posted, but I want to emphasize again the importance of trying different thyroid medications!! Lots of them have weird side-effects and everyone is affected differently - but there are at least half a dozen medications available (and even more when you take them in combination) for people with hypothyroid disease. Be persistent with your doctor until you find one that suits you! I emphasize this because it's really dangerous to have uncontrolled thyroid disease. If you have hypothyroid you aren't supposed to miss even a day's worth of medication let alone skip it all together. Many people can skip medication for a period of time and not feel the effects, but it's still not healthy for your endoctrine system. I'm alarmed that so many people don't take their thyroid medications! Please find one that doesn't give you side-effects rather than skipping. I don't want to sound bossy but my understanding is that it's pretty important to one's overall health. I've had hypothyroid disease for almost ten years and it has the potential to be quite serious if left untreated. A book that really helped me find the right medications/doses is The Thyroid Solution - can't remember the author right now. Also, there are some illnesses that initially present in ways similar to hypothyroidism (adrenal fatigue, Hashimotos Thyroiditis, a disputed disorder called Wilson's Temp syndrome, to name a few) -- if you have lab work that indicates hypothyroid disease but standard medication doesn't help, it might be useful to talk to your doc about some of these other similar disorders. Sometimes a different class of medication is necessary to regulate thyroid function. I know lots of people (all the women in my family, practically!) who can't tolerate Synthroid but who do just fine on another drug. I also know a small handful of people who find that certain homeopathic remedies (like eating a lot of coconut oil) have helped, but either way it's important to take care of hypothyroidism. jump

My doctor told me that when I experience the "shooting" pains it is brought on by dehydration. I don't know if it's psychosomatic or not, but I have found that if I experience the more severe pain if I really push fluids it usually goes away faster than when I don't. But I don't know the science behind that, I never really asked. Sorry you're still in so much pain! jump

OK, so in another thread people were talking about how their echos have come back fine and how the POTS is not dangerous to the heart. My docs have said the same thing - that all the bradycardia, tachycardia, palpitations and other weird sensations aren't a problem at all and not indicative of a problem. While this is very very reassuring, I don't understand how that works scientifically. If, for example, I went running for six hours a day and my hr was 150 for six hours a day, that would strain my heart and cause problems down the line. So if I have untreated POTS and my hr is 150 or higher for six hours a day, why doesn't *that* also cause strain? Or, if I drank a lot of coffee and had a consistently high heart rate - let's say 100 bmp all day long - that would also be a health concern. But if my hr is 100 all day long because of POTS, it's not. What is the mechanism behind this? I'm really curious. When I asked my doc, he just said, "Don't worry, this isn't going to cause any harm to your heart long-term." I think he thought I didn't believe him, when really I was just really curious. Can anyone explain this to me? Why is one kind of tachycardia harmful and the POTS kind isn't? Jump

Well, I'm not sure. I know I didn't have it as a child, even though my mother has NCS so I think there's probably a gene in my family somewhere. I had an illness that has POTS-like symptoms as a secondary-effect -- but then after I recovered from the illness, the symtpoms never went away, and in the past few years have been variable in how bad they are. So the original onset of symptoms came on probably within a few months.... I'm not sure if that answers your question really though. Certainly if you find anything else out from your doc, you'll have to share with us!! jump

Thank you so much to those of you who responded! There's no question that I was feeling really down and overwhelmed. I feel better having read your responses, and more motivated to keep trying. I did end up finding an EP from the list that practices near me which was a pleasant surprise. I haven't worked up the nerve to call yet, but I'm sure I will sometime this week or next week. I'm realizing bit by bit how hard it is to advocate for myself. This isn't the first chronic condition I've had, and I always thought I did a really good job of self-advocating -- but it's a whole different ball game with a disorder like POTS that isn't so well known and isn't life-threatening! I find that when doctors don't take me seriously, it's really hard to continue to take *myself* seriously. I'm really working on that. I feel bolstered now, though! so thanks for taking the time to give advice. it really helped. jump

I couldn't tolerate synthroid or unithyroid, but now I take levoxyl and have no problems with it. Have you tried different thyroid medications? It might be a question of finding your personal fit. Jump

I'm sorry you are sick! Mono is rotten. I do know though that it is often a long illness. I had mono before POTS and I was sick for at least 8 weeks. I would imagine that it would be prudent to really follow doctor's orders and rest a lot, and to take extra precautions since you do also have a chronic condition, but I'm not sure you have to worry that it will necessarily make things worse in the long-term for you. Good luck and I hope you feel better soon! jump

I wonder why stairs are particularly hard, instead of all exertion being equally unmanageable? In the first year or so of developing POTS, I had symptoms only in the mornings so I could exercise fine in the afternoons (I ran about 8 miles a day and was in very good shape). But even then, going up a flight of stairs any time of day would make me breathless. I no longer run, but most days (now that I'm on meds) I can exercise some, like walk or bike. But every time a flight of stairs just leaves me panting!! I feel so embarrassed about it sometimes! jump

When I'm experiencing an episode of intense symptoms I almost always have high bp instead of low. My doctor told me that tachycardia can be a body's response to low bp, and that in my case it isn't, therefore there was no reason for me to eat a high-salt diet. I don't try to increase my salt intake. Before my diagnosis I had a very low salt intake, and now I have an average one. I do however take magnesium supplements which seem to help a lot, and since my bp tends to run high I don't have to worry about the super-low bp side-effect that some people get with magnesium. Did your doc tell you to increase salt even with the high bp? jump

Thanks all, for your input. Here's the thing about finding a new doc, though. Every time I search for a specialist (either for POTS, autonomic dysfunction, or electrophysiologists) I come up with nothing. I live in a rural area but I am withing driving distance to Boston and any of the hospitals there, or Dartmouth-Hitchcock in Hanover. I'm willing to drive a few hours for care if it's better, but so far I haven't found any leads on anyone who might be more knowledgeable. There were two suggestions on this website, and I called both offices and both offices said they'd never heard of POTS before. I'm starting to feel crazy - like did I make this disorder up? Also, if I keep changing doctors and seeking second-and-third opinions, will that make me seem less believable? My current cardio already asked me why I saw a different cardiologist two years ago with a suspicion like maybe I was doctor-hopping to get the meds I wanted or something (I'd seen a different cardiologist because my health insurance plan changed.) Am I searching wrong? It seems like with all the hospitals in boston I should be able to find SOMEONE, but I keep coming up short. I don't want to drive and interview docs and spend that energy if they're not going to be any more helpful than the ones I have.... thanks for your support, sorry if I sound down, I'm just really feeling overwhelmed with all of this... jump

Hey all, I really like my PCP, but when it comes to POTS issues things have sometimes been difficult. It took me two years of complaining before she finally ordered a TTT, and then because my bp didn't drop she kept insisting there was nothing wrong with me. I brought in articles, and finally she accepted my cardiologist's diagnosis of POTS but she's been very hands-off about it, and once she determined my symptoms were not caused by something harmful she has been reluctant to explore options with me for symptom control. She keeps saying "You're so young, you don't want to take drugs you don't need" and "there's nothing else we can try besides the beta blocker." I also see a cardiologist (the one who actually diagnosed me) but he, too, has been reluctant for me to try any medications. He actually wanted me to stop taking the beta blocker even though it's made me feel a lot better because he says there's nothing physically wrong with me (I'm not sure what this means then - the tachycardia is mental?). Despite the tachycardia, he keeps insisting that my TTT was normal and that my holter monitor test was normal (even though I had episodes of bradycardia and tachycardia and an irregular rhythm) and that if my tests were normal I shouldn't "want" to take medication. It's not that I want to take medication, it's that I'm desperate for some relief from these symptoms. If my docs had any non-medication suggestions I'd be happy to try them first, but they don't offer me any guidance, whether pharmacutical or non-pharmacutical. So it's been very awkward. On the one hand, these people diagnosed me so they accept that something is wrong with me. On the other hand, they seem to either not believe that the symptoms are affecting me profoundly or they don't think that meds will help or something, because they're reluctant to let me try any medication. I've been doing a lot of research lately on DDAVP, and I think it might be something that could really help with some of my worst symptoms. I at least want to have a discussion about it or consider having a test to check my vasopressin levels. But I don't know how to approach my docs because they were sooooo reluctant to give me the tests I've already had, and they keep talking to me like they think maybe I'm making a big deal out of nothing. I had to fight so hard just to get a TTT and I'm afraid to approach them again about another test. My cardio has told me flat-out he doesn't think I should take the BB because it isn't necessary, so I'm scared to approach them about trying another drug. I feel like both doctors are already very close to thinking of me as a hypochondriac or a "worrier" and I really, really don't want to get labeled as such and ruin my chances of being listened to in the future. Also, although both doctors seemed ok when I brought in info on POTS, they didn't use the information to my benefit (they didn't consider any of the medications listed as possible aids) and I'm worried about how many articles I can pull off the internet before they label me as a difficult patient. How do you approach resistant doctors? Any advice would be helpful. I feel really stuck. jump

Hi Summer! I don't know if I have hyperadrenic POTS or not (never been tested) but I've wondered if I do since in all my tests I tend to have high bp or an increase upon standing instead of low. Anyway, I also had a very adverse reaction to an SNRI and my docs were very surprised until I talked to them about my POTS - they felt the adverse reaction was related and advised me not to try any more snri's. I think it does affect everyone differently, but since it affects norepinephrine it makes sense that it could make you feel worse. Hope you find something that makes you feel *better* instead! jump

I do not usually have TMJ but a LOT of medications - especially SSRIs and SNRIs and anything else usually used for depression or mood disorders - give me SEVERE TMJ. I noticed in your signature that you take a few meds - did you notice if the TMJ got worse after starting any of them? My doctors have told me that it is a common enough side-effect for a lot of medications but one that it not widely advertised. sorry you're in pain!! hope you find something that helps. jump

Hi all, I read the other thread about DI but found I had more questions than advice to share, and I didn't want to hijack that thread with new questions, so I'm starting this one! I've long had real problems with thirst and output, and when I did research on my own I thought my symptoms sounded like DI. I talked to my PCP about it, but she said it would show up in a normal urine test and that people with DI become "truly crazed" if they don't have access to water and do things like break into buildings and steal in order to hydrate. I don't get "crazed," I just get really really sick with thirst. Plus my standard urine test came back normal. But from reading other threads, it sounds like my PCP's assessment was maybe off -- both that DI is akin to a mental disorder and that a standard urine sample would show it. What tests *would* I need to know if I had this? Since then, I was diagnosed with POTS and have been assuming that my input/output problems are just related to POTS and not DI at all, but I haven't been able to get any relief from the symptoms. I can't try DDVP (?) right now because I'm temporarily out of insurance and can't get an appointment with my doc for three months. Do any of you know of any non-pharmacutical things that might help with diabetes-insipidus-like symptoms *besides* this medication? Anything homeopathic or a lifestyle change I could try? thanks, jump