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Thanks for that article! Hmmmm, it is troubling though. Does anyone know if having a high fasting blood glucose level is a problem if the non-fasting readings are fine? I had both done, and while my fasting bg was "pre-diabetic" (113) all my other readings throughout the day were normal (109-125). I don't know if this means that the BB is putting me at risk, or if the BB is just causing something of a false positive, since my bg is clearly well regulated when I'm eating.

I'm not really an old timer and I don't have things 100% under control, but I have definitely seen great improvements in my symptoms since March. For me, step 1 as outlined in the JH protocol - all the different lifestyle changes the describe - have helped me far more than anything else. I do also take a beta blocker and that helps too, but I think I could live without the beta blocker whereas I could not function without increasing salt and fluids, avoiding triggers, etc. I do find exercise helps me a lot although it's hard because it also exhausts me. I'm currently working on some dietary changes (trying to eat gluten-free) but it's difficult because I'm also a vegetarian (by choice, not by medical necessity) and I have a lot of food intolerances.... I've been reluctant to really commit myself to eating gluten-free because it feels like there's nothing left for me to eat sometimes!! But all the other things listed in step 1 are things I do religiously, and they've helped a lot.

Hello all, I take 25 mg of Metoprolol ER (toprol XL) every day. Recently I had my routine blood work done, and my fasting blood glucose was 113 -- this technically falls into the "pre-diabetes" range, and is unusual for me since my fasting bg is usually on the low end of normal, around 50-70. My doctor thought this was odd, and said it was probably the beta blocker. She's going to have me have random bg tests throughout the day and see if those numbers are high, too. I looked this up on line, and it does say metoprolol can affect your blood sugar, and not to take it if you have diabetes. My question is, if it makes my fasting bg numbers a little high, but does not affect my other bg readings, then is it safe? Is having a "pre-diabetic" reading dangerous in that it could make me more likely to get diabetes? I've never had any risk factors for diabetes, but I still don't want to increase my chances of getting it. Right now the beta blocker is really helping me, so I also don't want to stop taking it if I don't have to. Has anyone had experience with this, or any advice? Thanks, jump

Hollie, this is the funniest thing I've heard in a long time! I'm sorry your family is so not understanding but this really made me chuckle. I must forget things downstairs all the time.....

I sometimes feel better with alcohol, too, as long as I stay well-hydrated. I always assumed it was because alcohol improves your circulation (is this even true?? ) and I am frequently overwhelmingly cold. All I know is it helps my hands and feet to warm up. But if I don't also drink a lot of water, then my symptoms are usually worse the next day.

I am so sorry you're having such a hard time with this!! I wonder though, perhaps the key here, with the doctors, might be to focus more on your symptoms. If you often feel nervous and shaky and this feeling is often off-set by eating, then that perhaps gives them more information than isolated BG readings. It sounds like they're not listening to your numbers, so maybe try to really emphasize how you FEEL. As others have pointed out, low blood sugar and hypoglycemia are as much about symptoms as about any kind of objective science. As I mentioned, I myself am frequently "hypoglycemic" by the numbers, but I have no symptoms and no adverse physical reactions so it isn't something my doctors treat. I would imagine that the reverse would also be true -- that if your numbers are borderline normal but you FEEL very unwell, then it's a sign that it's a problem and needs to be treated, you know? Everyone's body is a little different, and many people with dysaut are much more sensitive than the regular population. Perhaps your doctors would listen better if you gave them a record of your symptoms? In the meantime, it sounds like you've started to find things that help --- keep up what you already know works! If you know you feel better when you eat, don't let yourself go a long time between meals. Perhaps try one of the hypoglycemic-friendly diets others have suggested. If it helps, that's a good thing, even though it's frustrating not to have an actual diagnosis. One thing I've learned with dysaut is that the docs may not ever be able to give me clear answers, and while I hate that intellectually, I also have to learn that the important thing is learning ways to manage it. If I know doing X or taking Y medication helps me, but I don't really know WHY it helps, well... at least it helps!!! You already know eating helps... maybe the thing to do is to try and narrow it down (do certain foods make you feel better than others? etc) and focus on the management side of things, even if the doctors aren't giving you any good answers. You know your body better than anyone and certainly better than the doctors; you don't have to wait for their approval to try and make yourself feel better, especially when it's something like tinkering around with when you eat.

I get a very similar thing, especially when, like you describe, I lie on my side or switch from one side to another. In my case, it's nothing -- evidently even the long long pauses between heartbeats aren't a problem as long as the general rhythm is still a sinus rhythm (which it is for me). It IS really uncomfortable though, and often wakes me up or keeps me from falling asleep, which is bothersome because it happens more when I'm tired and I really need to sleep! I find that sleeping in a more upright position -- several pillows under my head, or sleeping propped up on the couch -- can help a lot. I take a beta blocker too and that helps. I've also found that caffeine makes this particular symptom worse (which is counter-intuitive to me - I always thought the caffeine would speed things up and help with the long delays, but such is not the case) -- which again is inconvenient, since when I'm tired I could usually use a cup of coffee! Before the beta-blocker, I used to have half a glass (2 oz) of red wine when I had these symptoms and it always seemed to help, but I wonder if that was just placebo effect or something. Since alcohol sets off a lot of my other POTS symptoms, I don't drink any more. Have you had a 24-hour holt monitor test? I had one that showed my strange rhythms, while pronounced, were harmless because they stayed sinus. It even caught some of my long delay beats at night. It made me feel a lot better to have a doctor look at this and say it's ok, since it feels so very wrong. If you haven't already had this test perhaps you should get it, just to make sure there's no "bad" rhythm problem.

71 is very normal, but if you have symptoms of hypoglycemia, you might as well get it checked out. Usually normal is considered 60-100, with 100-119 being "pre-diabetic" and 120 and above signalling diabetes. Below 50 can cause problems for some people, but not always. For a period of time I had blood sugar levels consistently in the 37-55 zone and nothing bad happened to me. Read up on hypoglycemia symptoms (usually shakiness, sweating, tachycardia, feeling weak) and ask your doc about it if you think it sounds like you. Do you have someone in your family with diabetes? (I ask because I wonder why you have a bg monitor). They might be able to give you more info, too, and might better be able to describe what low blood sugar feels like. But if it were me, I would continue to look for something else as the source of the weird zapping sensation, since 71 is normal and "zapping" is not the most common hypoglycemic symptom.

My understanding is that NCS MUST include a drop in BP upon standing (hypotension) and, more importantly, must include syncope. A 30+ rise in HR upon standing, without syncope, is more indicative of POTS. But many people either have both or don't differentiate too much between postural NCS symptoms and POTS symptoms, if they have both. Does your daughter faint frequently? I was diagnosed with POTS and not NCS because I experience a dramatic change in hr but do not experience corresponding hypotension or fainting consistently.

Hi! Here's how beta blockers work for me: I take 25 g. of Toprolol XL (metoprolol) at night before I go to bed. It helps control my tachycardias, which are usually worse in the morning (which is why I take it at night, so it's working in the AM). On the BB, my sitting HR is usually around 52-57. My standing hr is anywhere from 65-90. While 90 is technically speaking still POTSy (because it's a significant change from 50) it's a LOT better than how I am without BB's. Without them, I routinely go from abut 65 to 120-180 which is very uncomfortable. On the BB's, my "tachys" are lower and they are also less frequent. The BB also helps a LOT with my irregular heart beats. I used to have daily episodes of many many "skipped" beats (like three or four a minute for over an hour) and I used to have a lot of "fluttering" and "gurgling" sensations in my heart. On the BB I virtually never get these any more which is nice because they would make me out of breathe and uncomfortable. The BB also helps me with bradycardia, strangely enough. Without meds, my hr used to plummet occasionally in the afternoons, to around 48. I would get very cold (my hands and lips would turn purple) and I'd feel confused until I could get my hr up. Even though my hr is lower on the BB, I don't get the huge drops in rate and I don't get the cold sensation and the confusion. Now my hr never gets below 52 except when I'm sleeping. Here's what the BB DOESN'T do. Even though I'm not as tachycardic when I'm standing, I still have difficulty standing. I might be in line and get hot-cold sensations all over my body, break out in a sweat, feel very weak and faint, have an uncomfortable sensation in my chest, yet my HR will be only 75 or something. For me, it seems the BB masks or blocks the tachycardia but doesn't really change the core cause of my symptoms, so other symptoms still persist. These symptoms aren't as frequent as they were when I wasn't on BB's (when I really couldn't stand for more than a few minutes at all) but they still occur on a regular basis if I have to stand up. The BB's haven't affected my other ANS symptoms at all, like the thirst, insomnia, GI problems, fatigue. Over all I've found them to be really helpful. On the small dose I'm on, they haven't lowered my BP nor do they make me feel sluggish or tired (two common side effects). For me they're the difference between being preoccupied by my symptoms 24/7 and being able to ignore them a little and go about my daily life a little more freely. I also take a medication for my thyroid disorder and I take magnesium and B-complex supplements. The nice thing about most BB's is that they don't stay in your system very long and they don't take a long time to work. So you could easily try a small dose of one, and you'd know within a day or two if it was helping you or not; furthermore, if it was making you feel worse, you could stop it right away and it would be out of your system quickly. Good luck! I hope you find some things that help you!

Hello all, I've had hypothyroid disorder for about ten years now. I've always had trouble managing it -- it seems like the dose of medication I need changes every few months and it's hard to keep up with. Recently, I asked to be tested for Hashimoto's since there seems to be a correlation between Hashimoto's and ANS dysfunction. First my doctor told me I had elevated thyroid antibodies which meant I have Hashimoto's, then she said well maybe I don't. Either way my TSH has plummeted from too high to too low in just a three month span, and these dramatic hormone changes are making me feel awful. I'm exhausted and it's hard for me to tell where my POTS symptoms end and the hypothyroid symptoms begin. The thyroid seemed to become much harder to manage when my POTS became worse about a year and a half ago. Can anyone recommend a website or a place to get good information on thyroid disorders? I've read a lot and I feel like I don't understand my test results at all. I've tried all the thyroid medications out there and in different combinations and right now nothing's working. I need to get this under control because it's making it so hard to deal with POTS. Any advice would be great, I feel really lost in this. jump

Wait!!!! Not all people with POTS have OI?? How is that possible? The definition of orthostasis is a 30 bmp change between sitting and standing or a 30-point change in bp right? And isn't OI defined as chronic orthostasis? So... wouldn't it follow that a diagnosis of POTS would have to include OI? I was diagnosed with OI before being diagnosed with POTS on the basis of hr change; my doctor considered POTS to be a more specific branch of OI. I was under the impression that OI is an umbrella term that encompasses NCS, POTS and postural hypotension. Someone explain it to me if this isn't right!!

Hello and welcome!!! I've had some experiences with dating while being chronically ill.... For me, my various illnesses, and the treatment of them, took up the vast majority of my time and mental space for years. This meant when I met new people, it was hard not to talk about it, since dealing with my health was kind of what I did all day. But, like mkoven, I really found that the best thing was to not talk about it too much at first. Healthy people have a hard time understanding what it's like to have chronic health concerns, and it can seem really overwhelming at first. I've found that the best thing is to be honest if it comes up (for example, someone on a date asked me once if I liked hiking, and I said I loved it but had some health problems that prevented me from doing it very much. At the time we had just met, so I didn't elaborate more than that). But not to talk too much about it in detail until people ask or are ready to hear it. Instead focus on the other aspects of your life. For me, this was good for me to do anyway, because, like I said, so much of my time had been consumed with my health that sometimes I felt like it was all there was about me. Making myself focus on my interests and the other aspects of my life made me remember that I am more than just an ill person, and this gave me confidence during the actual dates! The important thing to keep in mind is that a good person for you is someone who isn't going to judge you. If you go out with someone and they judge you for being ill or for not having had lots of relationships in the past or whatever, then they are so not worth your time anyway. There are lots of nice people out there who will like you and appreciate you just as you are. If you meet someone who doesn't, it says a lot more about them and their values than it does about you. Good luck and have fun!! If you get nervous or stuck for conversation, just ask her about her kids. Most people love talking about their children!! take care, jump

This was also my only symptom as a child. Now, as an adult with POTS, I am desperately thirsty all the time and I absolutely have to go every hour and a half or so, night or day (which means I don't sleep well). I've learned to tolerate the feeling of "urgency" but, partly because I do actually drink a TON, I can't hold it for more than 1 1/2 hours really. Even when I 'm not drinking (like at night) this seems to be the case. As a child, I always had to pee and my parents would actually get angry with me for it. They thought I had some kind of anxiety problem. Then my mom realized every time I went I really WENT (I was young enough that she accompanied me to public restrooms) -- if it had just been anxiety or nerves, they figured I wouldn't actually urinate bucketloads every hour. But, no one ever pursued it, and even now, even though it is by far my most upsetting and disruptive symptom (because I can't sleep) none of my doctors have been able to offer me any relief, nor have they even been particularly interested. They tested me for diabetes and kidney function, and then they just kind of said "well, live with it." So I do. Now that I know polyuria is a symptom of POTS, I wonder if that's what was going on when I was younger even though I didn't have other POTS symptoms.

I have the opposite problem! Frequently in my life I've weighed a normal amount but had an abnormally low bodyfat %. There was a period of time when I weighed 135 (I'm 5'7") - pretty normal - but my body fat % was only 9%, dangerously low for a woman. I wasn't getting my periods and this was why. I do know, though, that those scales are often really inaccurate. If you're concerned, you can get your body fat % measured by a nurse practictioner. That's usually much more accurate. Also, I'm not totally sure about this, but I'm not sure 30% is considered an "obese" bodyfat % anyway, for an adult woman. Isn't the "healthy" range something like 20% - 32%? jump

Hi, I know heartburn/GERD issues are common with people who have dysautonomia, due to low gastric motility, gastric paralysis, etc. However, if your daughter has never had this problem before, and it started up with a change in diet, then I personally would be more inclined to blame the dietary changes. jump

Maybe your body was reacting to the rash and hives. I know for me, ANY bodily stressor - a bad sunburn, a cold, etc - makes my symptoms worsen. If your body was having an allergic reaction to something, your ans could have been reacting to that. After all, your skin is your biggest organ. Hope you're feeling better today!

Aaah! Not being in sinus rhythm seems MUCH more concerning than low bp! (and even more concerning with both!) If you're not in sinus rhythm and your doc doesn't already know this you should go to the er! I'm no doctor of course but that doesn't sound good.

I wish I had known: - That just because people tell me I'm fine doesn't automatically mean they're right and I'm just making it up. - Frankly, I wish I had HEARD of POTS sooner!! I spent four years feeling like a freak, with all these strange, seemingly-unrelated symptoms.... and then I finally read about POTS and I was like, OMG, that's ME!!!! - That this is not about hard work and stick-to-it-iveness. I'm used to being able to "knuckle down" and work my way through any problem. Hard work helps, determination helps, but it's not going to CURE me. I have to accept this to a certain degree, even while I work hard to find ways to help myself out.

Sarah, Glad you are well from your ED now -- no small feat! POTS can be triggered by "significant weightloss" so it follows that an eating disorder can trigger POTS. I had anorexia for more than half my life and now, even though I am fully recovered and have been for several years, I still have a fair amount of physical problems, including POTS. My own doctor is convinced my dysaut problems are somehow related to my eating disorder. As I'm sure you know, orthostatic intolerance is one of the hallmark symptoms of anorexia and bulimia -- that's why when people have these diseases their doctors check their bp and hr sitting and standing all the time. With most people, orthostatic intolerance is supposed to resolve itself as the person resolves their unhealthy behaviors and maintains a healthy weight without purging. Indeed, OI is usually considered a way of determining if a patient with an eating disorder is recovering or not. In my case, it seems the OI "stuck" for whatever reason. My POTS symptoms started when I was physically ill with the eating disorder, but they did not subside when I physically recovered from anorexia. In fact, although my symptoms initially improved when I gained weight and my overall health improved, over the years I have been healthy from the anorexia my POTS has actually gotten incrementally worse. But, even though I do believe there is a connection, I also think, at least in my case, there may be more to my POTS "causes" than simply years of running my body ragged with an eating disorder. My mother had NCS symptoms all her life until she hit menopause, although she was never diagnosed with any dysautonomic problems. My sister has what we jokingly call "occasional POTS" - she often feels really faint and dizzy in the mornings, but her symptoms are not as pervasive as mine. So, while the physical trauma of an eating disorder may have "triggered" my POTS, I think I probably had some kind of genetic predisposition or something. After all, although most people with eating disorders develop short-term orthostatic problems, most people do not necessarily develop long-term problems. So... I too feel certain there's a connection, but I'm not sure it's necessarily a straightforward or simple one. There's no question in my mind, though, that if I wasn't eating properly now it would make my POTS symptoms so much harder to manage. I feel grateful that I was able to fully recover from one disease and the determination I learned in recovering from anorexia has definitely helped me better cope with facing POTS. -jump

Shannon, I've had the same problem! Every time I ask my PCP or my cardiologist how low "too low" is, they just tell me "your BP can't be too low." Obviously this isn't true. From my reading, it seems that BP is too low if you have symptoms from it -- like feeling weak, fainting, experiencing bothersome palpitations. Similar to how bradycardia isn't a problem in and of itself unless you have adverse symptoms from it. If you have POTS or NCS, then you probably do get plenty of adverse symptoms from your low BP! I don't know how you would decide when to go to the ER or not. If it were me, I'd go if the low BP was persistent (wasn't relieved by sitting or lying down) or if I were having symptoms from the low BP that were either more extreme than usual or were different in some way. I know when I had relatives in the hospital, the nurses and staff would get upset if their BP dropped below 80 for the top reading. Sorry this isn't very helpful, I hope you can find good advice for this! jump

Thanks for the info on the tests. I thought what my doc said sounded a little off from what I had read. I'm not sure I do have "classic" symptoms of adrenal insufficiency, but, from my reading, it seems like I might have symptoms of some kind of adrenal abnormality. I do have very dark circles under my eyes that nothing seems to help (I've tried iron and other vitamins, and sleeping more). I have hypothyroid disease, but I'm on medication for it and my blood work says that it's perfectly under control. Yet I continue to have symptoms associated with low thyroid hormone -- complete and utter exhaustion, weight gain even though I hardly eat anything, no appetite. I've read that hypothyroidism can sometimes go hand in hand with adrenal issues, and that POTS often goes along with adrenal issues. I'm not sure if my symptoms warrant pursuing this with my doctor. Any advice?

Hello all, I've read that there is sometimes a connection to adrenal function and dysautonomia. When I read up about it, enough of the symptoms seemed to apply to me (extreme fatigue, unexplained weight gain, and then the dysaut) that it seemed worth testing for. When I mentioned it to my doctor, she said that adrenal function was really difficult to test for, and instead tested my potassium levels, and said that if there was anything wrong with my adrenals it would show up as a potassium imbalance. This doesn't seem to quite fit with what I've read on the internet, but I know the internet is at best imperfect. Is my doctor right? Are there other tests I should be considering, or is the potassium test good enough? Thanks, jump

I have hashimoto's and an autoimmune gluten allergy (less serious than Celiac's but basically caused by the same thing). RA runs in my family as does type 1 diabetes. I def. think there's a connection to dysaut and autoimmune stuff.

I just realized also that several of the bouillons I crave when I'm having symptom-flare ups ALSO have msg! How very odd! Heiferly, I'm glad to know I'm not the only one!