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I think technically speaking, for normal people, the heart is supposed to stay in the 60-100 range all day long, except when exercising. In fact, a hr of 90 is considered within the exercise range (low-impact) for most people. Obviously this doesn't apply to us. Even if you are on medication, I think it would probably be unreasonable to expect your heart rate to stay within the "normal" range most people experience. If you google "maximum heart rate capacity" you'll find a tool that calculates the highest your heart rate can go without damage. I don't know how scientific or accurate it is, but when I ran competitively (oh those good old days!) we used to use this tool to make sure we weren't over-training our hearts. You're never supposed to go higher than 80% of your max capacity when you're training (which for me, if I remember correctly, is around 180). So when I'm doing something, if I find my heart rate approaching 180, I stop what I'm doing. Supposedly you can't damage your heart as long as you keep to 80% or less of your maximum, provided you have no other heart disease problems. Other times, I just keep going with an activity until it gets too uncomfortable to continue (I find I have a hard time continuing an activity if my hr is beyond 140 or so).

Frequent, low-grade fevers were one of the first symptoms I noticed when I started having difficulty with POTS, and I still get them. No one has proven conclusively that they're from autonomic dysfunction but I personally feel very certain that they are. For me, they always come when I push myself too much, and go away when I finally get rested up. They are often in the evenings although I have had them at other times. My normal body temp is about 95.6-97.9, and these fevers are usually around 99-100.5. A few times they've been higher, but typically they're not very high (although my body temp isn't very high to start with, so maybe that's why). Like you, they're not indicative of infection. I actually find them useful, because they let me know when I've really pushed it too much and they get me to slow down immediately. Kind of like a warning. And, they are a concrete thing too, so I can show my family the thermometer and say "see, I really do need to stay in bed!" and then they leave me alone.

Hi all, I know people have talked about having bp where the numbers are close together. Lately I seem to be having the opposite problem - my numbers are unusuually far apart. Yesterday my bp was 140/55. I can't imagine why this would be cause for concern (unlike bp that's too close together) but I am wondering if this could be contributing to my palpitations. It often feels like I have a really big heart beat and then a bunch of little ones -- is it possible that I'm "feeling" the momentary high bp (140) and then the low bp (55)? My understanding is that you can't feel blood pressure so I'm guessing this isn't the case, but out of curiosity I thought I would ask.

My immune system has been weaker, so I put "yes," but I still wouldn't classify mine as weak. Before I started having disruptive dysaut problems, I NEVER EVER EVER got sick. Like truly never. Since getting POTS symptoms, I've had pneumonia, mono, two bouts of bronchitis and one or two colds -- but all over the stretch of about six years. I wouldn't call five illnesses in six years excessive. Also, I have no problem with healing from scrapes and bruises. So, I do notice a change, but over all I think I still have a pretty strong immune system.

OMG I have this problem too!!!! I'm sorry you have this, but I'm also partly relieved because I have been really really struggling with this and I had been thinking it wasn't related to ANS dysfunction, but it would be a relief to think it might be, if only to have an explanation for it. I struggle to breath in any cold, dry situation (which makes winter rough). I have chronic chest pain related to breathing 365 days a year, but it gets much worse in the cold, to the point where I feel like I can't fill my lungs because it's so painful. I feel like my lungs are burned all the time. I had a methylcholine challenge test and my doctor feels certain I don't have asthma, and for once I'm pretty sure she's right because I don't have trouble breathing OUT, I have trouble breathing IN. Plus this constant, dull pain is not indicative of asthma. And while I found parts of the test difficult (it hurt my lungs to keep taking deep breaths) the asthma-triggering chemical itself didn't affect me at all. Also, I have no allergies so I know in my case it's not related to that. Even though I feel like the cold/dry makes it worse, I haven't really found anything that makes it totally better. I've tried sitting in a steamy room, drinking lots of tea, putting a warm, damp compress on my chest -- nothing seems to really help all that much. Unfortunately I can't see a pulmonologist (sp?) until March, but if I find anything out I will be sure to post it here in case it could apply to someone else. I hope you find some relief, Ernie, and if you learn anything about this please share it!!!

Hmmm, that does make sense, but do you still experience polyuria at night when you're lying down? I have polyuria and polydypsia (sp?), and I assume it's related to POTS although no one has been able to explain the possible mechanism to me. The only thing is, these symptoms don't seem to go away if I'm not standing; at night, for example, I lose between 5-7 lbs between when I go to bed and when I wake up, and I have to get up to urinate usually 4-6 times a night. I don't drink at night because I don't want to make it worse, but being horizontal doesn't seem to help me. Have you noticed a difference between sitting and standing? If so, that could be your explanation.

I had a good friend who went on remeron and gained about 60 lbs, and the weight gain didn't start until she had been on it for almost a year. I believe that drug in particular can have a major impact on weight; my friend was also ravenously hungry when she was on it. In her case, the weight gain did eventually stop, and although she was a little overweight and not thrilled she still looked fine to everyone else, and it really helped with her symptoms. After about five years she found she no longer needed the remeron and slowly tapered off, and lost all the weight she had gained without even trying. Maybe in your case the drug is the culprit, too -- have you talked to your doctor about that?

Did you guys have tests done to determine Raynaud's or was it just a clinical diagnosis? I know there's a test for pernio... My doctor diagnosed me with Raynauds, but she just looked at my cold, purple hands, said "Do your feet do this too?" and I said yes, and told me it was Raynaud's and that I should wear mittens (Ha! as if I would ever go anywhere without them...). I've heard of a test where they stick your hand in ice-water but I thought that was archaic. Am I mistaken? It sounds like you all had testing done. I wonder because although my hands and feet are often unbelievably cold, and they do occasionally turn kind of purplish and my nails turn purple, it doesn't sound nearly as severe as what several of you have described. I wonder if I DON'T have Raynaud's, if maybe I just have cold hands and feet.

Yeah, I'm starting to think I need to see an endo -- I just have so many things going on and none of them seem to make sense. But, I just had to see a pulmonary specialist because my chest pain is getting so bad that my doctor was worried it was lung-related... and that appointment cost over $900 which will take me at least four months to pay off. I don't see how I could afford to see an endocrinologist any time soon.... I feel really stuck because I feel like I need a really good doctor and really good health insurance and instead I have really awful health insurance that basically covers nothing I need, and a doctor who doesn't seem to know what she's doing and whom I can't really change easily because of my awful health insurance. I feel so overwhelmed by this sometimes.... I can drink water before the test, just practically speaking I haven't had more than about 8 oz by the time I get to the doctor's office. Next time I go to get tested I will drink a lot more and see if that makes any difference. I was just wondering if anyone had heard of this, since I'm not going to be tested again for a month.

Hello and welcome! I've never been to the Cleveland Clinic, but it's my understanding that they're very good so they'll probably understand exactly what you need. However, I've found that it's always helpful to bring a document detailing your symptoms, their frequency, when they started, what makes them worse, what makes them better, and your general medical history. Sometimes on the day of the testing you may have contradictory tests or inconclusive tests (although hopefully that doesn't happen as much at Cleveland!) and if your doctor has a clear picture of what your day-to-day symptoms are he or she will have an easier time sorting out what your tests could mean and which tests to take. Also, you mentioned you've had a lot of tests already -- you should bring copies of any that are relevant to your autonomic dysfunction, and be familiar with what they say. For example, I had a 24-hour holt monitor test that showed my tachycardias upon standing and my bradycardia upon sitting; when I consulted a doctor about it, he had a copy of the test, but just read the brief section that said I had no harmful arrythmias. If I hadn't read the test myself and known what was in it, he might have missed my POTS symptoms. Just because they have copies of your tests doesn't mean they are reading them carefully! Good luck and I hope you find some relief soon!

Hello all, So, as I mentioned before, I had a "pre-diabetes" BG reading although I don't have any of the risk factors for diabetes (normal weight, fairly active, my blood pressure may be STRANGE but it's not high, low cholesterol, no family history, plus I'm young). My doctor had me come off my beta blocker because she thought that might be elevating my BG levels. I've only been completely off it (had to taper) for a few days, so it's too soon to know if that's going to do the trick, but in the meantime I've been reading up. I've read a few articles that say diabetes can cause dehydration, but then I've also read a few articles that say dehydration can cause a temporary elevation of BG levels. Since excessive thirst has been my primary complaint for years, I have been tested for diabetes before and it always came back normal; so I don't think my pre-diabetes is causing my thirst, since my thirst predates the pre-diabetes by about four years. However, I'm wondering if my body's inability to retain water properly could be causing my elevated BG readings. I've noticed that my fasting bg test lately has come back high (I've had it done three times), but it's always done in the morning when I am the most "dry." When my doctor took other bg readings at other times in the day they came back normal. Also, I've noticed that I often crave water even more than usual if I eat anything sweet; sometimes sweet things make me feel kind of sick and slightly woozy, and usually a big drink of water makes the feeling go away. Well, obviously this is speculation, but I was wondering if anyone had heard of this before. I can't tell by my reading if it's legitimate enough to pursue with my doctor or not.

Two words: Retail Therapy!!! I got a bunch of small-amount gift certificates for Christmas -- ten dollars here, twenty there. I'm hoarding them, and when I'm having a rough time I'll use them to treat myself to something. In fact, I did this just the other day. I had traveled to visit some friends, and the day after I felt so sick and in so much physical pain -- for me, the pain is what really makes me blue. But I had a $20 gift card to a craft store.... so I went, and they happened to be having a sale, so I got so many goodies and didn't spend a dime of my paycheck! It cheered me up immensely. What also helps me is to make a gratitude list. Sounds cheesy, but for me it really works. For example, when I was feeling really badly earlier in the week, I wrote down things like: I'm grateful that I was ABLE to visit my friends, even though it tired me out. I'm grateful that I have such good friends to visit in the first place. I'm grateful I have a warm, comfortable bed to lie in on the days when I feel too unwell to get out. etc.

I always have severely weak arms, and so do my two POTSy friends. For me, they're only weak when I try to raise them above my head - like, I have to take a break when shampooing my hair, braiding my hair. Reaching for things above my head is difficult. I've always thought of this as a "weak" feeling, but I could also see where it could be expressed as a heaviness.

Also, acidosis can trigger seizures. Is it possible that her body enters into a state of acidosis first and then she has difficulties? Or do you think the seizures trigger acidosis?

I don't have an answer to this, but I do know that what you described happens to me, too. If I drink a glass of water, about 20 minutes later I have to pee SO BADLY, like clockwork. It often seems like I'm losing waay more than I drink, too -- like if I have a small glass of water my bladder is completely full. Incidentally, this happens MORE when I'm a little dehydrated, like in the morning. If I've had a lot to drink in a day, this happens less. I also get symptoms of dehydration (unbelievable thirst, dry skin, fast hr, very dark urine) without showing clinical signs of dehydration in my bloodwork. Often I am SURE I'm dehydrated from how I feel, but when I pinch my skin it still springs back fine. What does SG stand for?

OMG I get the weird cough, too!!!! I've been thinking I was crazy for this. This has been interesting for me to read, because for me it's definitely not a question of exertion. On days when I'm feeling ok, I can cross-country ski -- not super fast, but still, it's true exercise and I don't get out of breath. But going up stairs ALWAYS makes me gasp for breath. It's definitely qualitatively different than just regular exertion.

Hello all! I have a good friend who has had NCS since her teens; she's in her late twenties now, and her NCS symptoms have been better as she's gotten a little older, but she also has MVP and that has gotten worse. She needs to have surgery to either repair or replace the valve (they won't know which one it's going to be until they actually go in and look at it). Can anyone tell me more about this and what she might be able to expect? I know lots of people here deal with these two things, and I'd love any info you could share. Thanks!

Do you guys think this is dangerous? When I go up a flight of stairs I completely black out (though don't pass out) and I feel like I am going to DIE - my heart pounds so hard and so fast. I worry that doing this over and over is dangerous to my heart muscle, the way too much exercise can be dangerous for someone who is out of shape. My other symptoms -- heart racing when standing in line, for example -- are different because although my hr goes high, my heart doesn't pound so hard that I can't breathe or anything. The combination of really fast AND really hard worries me that I will do damage to my heart over time. My doctor keeps telling me there's nothing wrong with my heart, just my autonomic nervous system, but I don't want something to BECOME wrong because I'm stressing the muscle so much.

Are you able to have plenty of fluids, or do they bother your stomach, too? Being dehydrated can really worsen nausea. If you are already undernourished and dehydrated, that could be why it's hard to keep food down. If this might be a contributing factor, perhaps a saline IV would help?

I had a similar experience. I had a 24-hour holt monitor test, and at first my cardiologist said it was "normal." But what he really meant by that was that it didn't show anything out of sinus rhythm for a significant amount of time -- which is very good and very reassuring, but not the end-all be-all of "normal." When I pointed out that my hr went up to 140 while I was brushing my teeth (standing), going up a half-flight of stairs, waiting in line, etc, and that my sitting hr was 50 and my sleeping hr was 40, he diagnosed me with POTS. I think sometimes cardios are so busy, they just check and make sure you're not about to die and they don't look at the details. At least that's the only explanation I can come up with. Incidentally, I think having a sleeping hr in the 40's is not considered bradycardic (at least from what I've been told). Sleeping heart rates are often very low even in perfectly healthy people. In my case, it was only of note because it demonstrated the drastic difference between my body at rest and my body standing; if I had had an elevated hr while sleeping and sitting, my cardio wouldn't have diagnosed me with POTS. I've been told a normal sleeping hr is 40-68, and that only when it gets below 40 is it of concern. Obviously waking hr is different.

Hello and welcome! I also have Hashimoto's and POTS, and it's tricky because there are some symptoms that are the same for both disorders (eg, fatigue). Teens with POTS frequently outgrow it by the time they are in their mid-twenties, and over time your daughter will learn what management techniques and which medications will help her the most; the first few months of being ill are often the worst, because you don't yet know what helps. In my experience, Hashimoto's isn't really something I ever "got over." Several women in my family have it as well and they all report the same thing - that even with medication they never get back to feeling how they did before they developed a thyroid disorder. That can be hard to accept - that to some degree, some fatigue and other symptoms may always be there. But, I will say that although I don't feel "normal" (the way I did before I got sick) I do lead a very normal and happy life. I have to pace myself a little more than my healthy friends do, but in no way to I feel like Hashimoto's (or POTS for that matter) has ruined my life. I can only imagine how frustrating it is to be a parent and see your child struggle with symptoms that you may not be able to get rid of. Try to keep in mind that even though Hashimoto's isn't curable, it also isn't debilitating when it's well treated. I've found that eating a lot of coconut oil helps my thyroid disease, and coconut juice helps my POTS symptoms. Also, thyroid medications are very sensitive - they work best if you take them at the same exact time each day, and with no dairy products, walnuts, or anything containing iron or calcium within an hour or so of taking the medication. Soy consumption can also interfere with the medication and my doctor recommends I never eat more than 10 grams of soy protein a day, and that I try to avoid it all together (which is hard because I'm a vegetarian!). All of this information is in great detail on the insert that came with your daughter's medication; I highly recommend you have her read it carefully and really follow it. I used to be less careful about when I took my medication and my Hashimoto's is so much more under control now that I follow the instructions to a T. I've also found, through my own experience and through the experience of my family members, that Hashimoto's - especially when you're young and your hormones, height and weight are still changing - often requires FREQUENT medication tweaking. DO NOT assume that the first prescription the doctor gave your daughter will be the only one she needs long-term. Your doctor has already probably been testing her frequently but I thought I'd mention it just in case -- sometimes doctors don't do this if hypothyroidism isn't their specialty. I personally find I need both a TSH, a free T3 and T4, AND a thyroid antibodies test to get my medication to be at the right dose. There is a difference between a healthy thyroid level for the general population (a very large range) and your daughter's personal healthy thyroid level (probably a smaller range within the healthy range for the general pop). If her levels come back normal but she's still having symptoms, she may need a slightly different dose of medication. Often after diagnosis the thyroid gland reacts to suddenly having synthetic hormone, and your daughter could suddenly need much more or much less medication, especially during the first year of starting medication. After that initial adjustment, most doctors like to monitor people every six months; I've found that I need different doses of medication in the winter than in the summer. If your daughter is having thyroid symptoms (ones that more clearly don't overlap with POTS, like hair-loss or moodiness), she could need a small medication adjustment even if her levels come back in the "normal" range. Also, I'm sure your doctor mentioned to you that it's a little unusual for women to develop Hashimoto's at a young age. Sometimes developing it young is an indication of a more comprehensive problem. Do you or your husband have type I diabetes, rheumatoid arthritis, Hashimoto's or celiac disease in your family? If so you might want to consider having her tested for Celiac's or gluten intolerance, or just simply try a gluten-free diet for a few weeks and see if that helps the nausea. Hashimoto's is an autoimmune disorder that is closely linked to the others I mentioned, and if you have Hashimoto's, especially young, you are much more likely to have gluten sensitivities than the rest of the public; in the average population, gluten intolerance is about 1 in 133 people, whereas in the Hashimoto's population it is more like 1 in 50, and that increases significantly if anyone in your family also has gluten intolerance. As for the connection between Hashimoto's and other autoimmune disorders and ANS dysfunction, I'm not sure the science is very clear yet (others might be able to answer that better than I can) but there is definitely a significant correlation. Lots of people here have autoimmune problems, specifically those on the Hashimoto's-RA-DiabetesI-Celiac spectrum. Do you have any ideas of what could have triggered your daughter's thyroid disease, or was it totally random? In young people, there is often a genetic component (usually a parent or an aunt also has it) and often it is triggered by an event (exposure to chemicals, diet pills, eating disorders, serious illness). If you know what triggered the hashimoto's, it might give you some insight as to how it might be related to her POTS, I don't know. I've read a theory that after an illness, a person's immune system may come back stronger than before because it has been strengthened from fighting the illness and succeeding (kind of like how when you lift weights, you wear down the muscle a little and it builds itself back stronger than before). Since Hashimoto's is an autoimmune disease, this would mean symptoms will be worse, or could begin, at a time when the autoimmune system is strong. I find that my POTS symptoms vary a good deal from day to day and from week to week -- so I actually don't find it that odd if your daughter wakes up one day and feels pretty good. Perhaps her autoimmune system was exhausted from the UTI, which would mean all of her autoimmune-related symptoms will be less. Hopefully she'll have more days like that! I do think, though, for most people, POTS doesn't disappear completely in any kind of quick fashion. She may have a handful of good days and then have another handful of bad days. If she's having trouble keeping water down, try slightly sweetened fluids, like water with a small amount of non-acidic juice or water and pedialyte. Avoid anything with citric acid (gatorade, ginerale) as this can sometimes upset the stomach even more. And as ramakentesh pointed out, super-duper salt loading isn't for everyone; your daughter may have to experiment and find what works best for her. I personally find I need more salt that I was eating before diagnosis (I used to avoid salt! No wonder I felt so sick all the time!!), and I probably do eat more salt than your average healthy person, but I don't find I do well with buckets and buckets of it. I personally only need to eat more salt when I'm particularly symptomatic -- certain things trigger my symptoms and then, yes, I do crave salt and eat more of it. But day-to-day, I just sprinkle a little on my food and don't worry about it too much. The fluids, however, for me are absolutely key. I feel ten million times better when I drink 4-5 liters of water a day than when I drink just 2. Hope you find some help here for some of your questions! You daughter is lucky to have such a caring mom who is willing to help her sort some of this out.

In my case, I actually don't think eating gluten was causing my POTS symptoms or that eating GF will relieve my POTS symptoms. Instead, I think perhaps my POTS is related to some kind of autoimmune connection -- but this is just my own speculation, there isn't any great research I can find that really proves this -- but not CAUSED by my diet, and so far no changes to my diet have affected my POTS symptoms at all. In my family, on both my mother and my father's side, every single woman has either Hashimoto's thyroidisis, rheumatoid arthritis, or diabetes I, or more than one of these conditions. These conditions are related to each other and are somehow genetically linked although the science isn't really specific on how. They are also linked with celiac disease and gluten intolerance, which are also autoimmune. My mother and sister have gluten intolerance (as well as thyroid disease) and my mother tested positive for RA although she has no symptoms yet, thankfully. I also have the thyroid problem and I've had a LOT of GI and digestive problems; for a few years I assumed the GI problems were related to ANS dysfunction (since that is a common problem) but, given my family history, I've started to wonder if perhaps I'm just gluten intolerant like everyone else. I've been eating GF for only a few weeks so far but so far it has helped my GI problems considerably. I do wonder if my POTS is related to this vague autoimmune problem that runs in my family; at least two of my family members with the autoimmune problems also have dysaut symtpoms, although I'm the only one who has sought treatment for my dysaut. I suspect they are somehow related. Still though, I'm eating GF to solve GI problems which may or may not be related to dysautonomia, but are definitely not related to POTS -- my core POTS symtpoms (tachycardia, uneasiness and discomfort standing, heart palpitations, blood pooling) so far have not been affected at all by my change in diet. I just figure if I can get my tummy to be feeling a little better then that's one less thing to deal with! I haven't found any dietary changes that affect dizziness at all, besides eating more salt. I'm not sure you will find something dietary that will fix those symptoms, although if you do please share!!!

I have to lie down throughout the day, too! I'll just get this overwhelming feeling like I have to lie down, and when I do my symptoms abate (although initially lying down usually makes my heart go a little wonky, but it doesn't last long). I always assumed this is because lying down keeps the blood from pooling in the lower part of my body, and my brain finally gets the oxygen it needs to feel good. I don't know about the food stuff though. I just avoid ALL processed foods except for some cheeses, and I don't eat gluten (or meat, but that's an emotional choice not a medical one).

I get sensations like you are describing around when my beta blocker is starting to wear off. Maybe it's waking you up because the BB is out of your system and your body is responding? I always take my BB at night for this reason, so it's fully in my system by morning (since morning is my rough time, like so many of us). Have you tried taking it at a different time?

I'm so sorry you're going through this!! :( Fortunately, I don't frequently get tachys as high as 140-150 anymore, but I used to get them daily (also in the morning) and it was EXHAUSTING. There's something about that range -- or there is for me, anyway -- that just takes the stuffing out of you. I can imagine how much harder this is making your day. It's like you're running a marathon every day before work! Have you looked into disability services in your city? There are often services that will pick you up and drop you off, and they're usually free. It might be a little annoying to feel less independent, but you could just use it while you're waiting for your handicap plates. I have a friend who uses that type of service where I live, and she says it's great. Also, doesn't your company HAVE to provide handicap parking, even if they're not a consumer business? Where I work, there's one handicap designated spot and two disabled people who need to use it, so they just designated another close parking spot as handicap. I feel like legally this might be required. I'm sorry HR is being difficult!! I have to say I never found anything besides the beta blocker that helped with the really high AM tachys, besides what you're already doing. Drinking a lot is key for me, but without meds I was still always in the 140 range in the AM. Can you go into work later by any chance???