jump

You know, this might sound crazy, but maybe you have to trust yourself in this case. I'm sure you've read up on these disorders. Which ones really feel like they describe your symptoms? Did you read about one and say "bingo! that's me!" Did you read anything that made you say "hmmm, maybe not"? I think we've all done this to some extent, like when our doctors tell us we're "just anxious" and we say "uh... no." Can you apply your gut instinct to this as well? And then use the 8 ball as a back up. Ooo, or how about a Ouja board??? Sorry you're dealing with this, jump

valliali, For years I only had isolated incidents of POTS symptoms. One day I might be perfectly fine and the next my hr might shoot up from 50 to 150 while standing in line or something. I think if I had been tested during those years I could have easily had the TTT on a "fine" day and not had any reaction. Especially since my hospital only does TTT's in the afternoons, which tends to be when my symptoms are the least. Now I think pretty much every single time you stand me up I have at least a 30 bmp increase; on beta-blockers, the tachys aren't always true tachys because my starting hr is typically very low. (For example, I might go from 50 bpm sitting to 90 standing; 90 isn't tachycardia, but it is a 40 bmp jump). But, this consistency in symptoms took a long time to reach... probably about three years of gradually getting worse. Is it possible that your resting hr is quite low? 110 could be considered pretty high if you're starting out at 50, and you might not notice. Also, do you find your symptoms changing at all? Have you had any tests besides the TTT that might shed some light on a *pattern* of symptoms, instead of just that one particular day?

Hi again, sorry for all the questions lately, I'm just trying to get organized before my various meetings with doctors.... So far, most of my tests show that I have tachycardia when standing but NOT a correlating drop in BP. Sometimes when standing my BP actually increases a good bit (normally it's around 110/60, standing it's sometimes 140 or 150 /80). Because I don't have hypotension, I've been assuming I also don't have low blood volume or blood pooling in my extremities. However, when I read more about blood pooling I realize I have a LOT of the symptoms. If I stand my hands and feet get very hot and swollen, especially my feet and ankles. Standing gives me severe "coathanger" pain and headaches within a few minutes. If I continue to stand, I start feeling like I'm at a high altitude -- kind of disoriented and nauseated, and eventually I feel like I'm completely drunk. I'm assuming this is because my brain isn't getting enough oxygen because the blood isn't getting up to my head the way it should. So my question is, can I have blood-pooling issues *without* having low blood pressure? I noticed on the Medical Mysteries segment about Linda Smith that she didn't have a drop in BP but she did have blood-pooling. I take beta blockers and this helps a lot with the tachycardia and the "skipped beats" etc. -- and taking the BB also helps me feel comfortable standing longer (because my heart's not going quite so crazy). But, would the BB affect blood pooling, if I do indeed have blood pooling? Does it counter-act it at all, or does it just keep my heart from racing? Also, from what I read, it sounds like *everyone* with POTS has blood pooling in their extremities when standing. Was I misinformed to assume that if my BP was high upon standing instead of low that I didn't have blood pooling problems? Thanks in advance for any insight, you all are really nice to answer my questions... jump

So true!!!! I could kind of tell right away that the people giving me my TTT didn't really know exactly what they were doing. It's not a procedure that's done very often here I guess. I do have plenty of recorded tachycardias in the 120-200 range (from about 60 sitting) from my holter monitor test and from other various tests. And I've had countless positive "poor man's" TTTs. It just seems like the cardio department feels like if I didn't faint on the actual table on that particular afternoon then I can't have dysautonomia. Siigh. At least my PCP believes POTS is a clinical diagnosis. She is 100% sure I have POTS and other dysaut problems, and she's the one I'm going to be working with the most, so it doesn't really matter I guess.

Thanks!!! In my TTT, my pulse went from 60 lying down to 90 tilted up, before the isuprel injection (this took about two minutes). Then they gave me the injection and my hr went to 140, and they stopped the test because they said my heart rate was too high. But they also said the test was negative and that I do not have POTS; I asked if a hr of 140 was typical for the test and they said "well, that was just because we gave you the isuprel." But, the initial jump from 6 to 90 would have been cause for diagnosis anyway, right? And the jump from 90 to 140 is maybe indicative of abnormality too? I had this particular TTT almost a year ago when I was much less symptomatic; all the cardiologists say it was negative (that I do not have POTS and my primary care says it was positive. To clear things up, she wanted me to be tested again (now that my symptoms are worse); but the test is REALLY expensive for me to have ($600 out of pocket), plus it made me feel like ****. So if I can explain to her that the test really was abnormal even though I didn't faint (they're very fixated on the fainting aspect of the test -- but I was only tilted up for about 8 minutes, and I don't faint nearly as often or as quickly as others with this disorder do) then I would save a good bit of cash.... Thanks for the info, now that I know the isuprel isn't supposed to cause much of a change in normal people I may be able to make my argument stronger... jump

Hello again, On my holter monitor test, I have all these things noted called simply "ventricular events." I know they're not harmful, but I'm wondering what they are? I looked this up on line and couldn't find anything helpful. It kind of looks like my heart just goes berserk for a few moments. I also have something called "ventricular singles" noted, and I don't know what those are either. Can anyone explain this to me? thanks, jump

Hey all, I have a question about the isuprel injections given as part of the TTT. If a person without POTS gets the injection during a TTT, does their heart rate stay the same? Why do they give the injection? What are they looking for? Thanks, jump

Awwww, thanks ((((everyone)))). I can't tell you all how much this helped me. I feel a million times better reading all your replies. I think part of the problem has been that I've been really pushing myself all along to stay positive and be optimistic, and, while I think it's important to keep a good perspective, I also think I wasn't being honest with myself. And burying all my negative feelings around this, instead of just letting them out, was just building up and making me feel worse.... I feel *much* better reading your responses and I feel less guilty for getting a little down. It just helps so much knowing I'm not alone (even though of course I wish no one had to deal with this). ((firewatcher)) I'm sorry you're in the same boat, but I agree, I think group venting probably can't hurt -- vent away!! I hope you find some relief, even if it's just incremental, for your headaches. maybe the meds will start working better... thanks again everyone, hugs all around, jump

This happens to me, too, although not as frequently as you describe -- it happens to me when my other POTS symptoms flare, so usually just in the mornings, except on bad days.... I've found doing things that control all my other symptoms help with this. I get up reeeally slowly, and when I have that symptom I lie back down again. That usually helps with the chills and sweating although it doesn't help with the diarrhea. I salt load and drink a lot of water. I try not to get too fatigued. I'm sorry you're dealing with this, it isn't fun. I hope some of the advice in this thread helps you. jump

Hello everyone. I've discovered a really weird thing. I just realized a lot of the extremely-salty foods I crave when I'm feeling particularly bad have monosodium glutamate in them. Usually I avoid MSG because I know it makes a lot of people feel really ill and gives them headaches. But I don't read labels all that carefully, and I didn't know that many tortilla chips and processed "snack foods" have MSG. I kind of thought it was mostly fast-food that had it. Anyway, I hardly ever eat processed food. But when I'm not feeling well, when I'm especially orthostatic, I crave this particular kind of tortilla chip that's extra salty. Turns out it has MSG. But when I eat them I feel better, not worse. Could there be something in MSG that might actually help with OI? I'm wondering if maybe it just really works to raise my blood pressure or something.... Anyone else actually have a positive experience with this chemical? - jump

Hello all, Sorry if this sounds like a pity-party, but I'm having a really hard time lately keeping my spirits up. I've been in an unusual amount of pain lately (chest pain that I still don't know where it's coming from); and then recently I started having more tachycardias than usual (usually on meds I don't go much higher than a 50 bpm to a 90 bpm jump, but lately it's been more like 50 to 115 sitting/standing -- which is still better than before meds, but man it is exhausting). I can't get anything done because I'm so tired. And although I have an appointment to see my doc (mostly about the chest pain -- I'm having trouble breathing now, which is new) I don't feel overly confident that anyone will help me. Although my family outwardly is very sympathetic (which I am grateful for) I still get the strong sense that they think I'm just being weak, that if I had more willpower I'd be able to do more, etc. When really I'm trying my very, very hardest to ignore the pain and the fatigue and just get on with my life. I think, too, I'm starting to realize that this isn't really going to go away completely. That I might have better weeks or better months, or find a constellation of drugs that help, but this probably isn't going to just disappear and leave me a perfectly healthy, pain-free person with no weird heart symptoms. I guess usually I just feel lucky that this isn't worse. I normally feel really lucky that I don't have something fatal, or completely and totally disabling, or completely disfiguring. I have close friends dealing with cancer, and I feel guilty feeling sorry for myself when people around me are struggling with things that are much worse. But, even though I still do feel lucky that this isn't worse, I still feel really overwhelmed with trying to cope with this pain and feeling like others don't really cut me all that much slack -- or if they do, it's kind of like, "Oh, you know Jump, she has no stamina, we can't expect her to do X and Y" with a little smirk and an eye-roll. Instead of understanding that I WANT to be able to do all those things everyone else wants me to do -- I WANT to work full-time and run around volunteering for things and participating in things -- I just CAN'T. And I get so mad that people seem willing to understand that I'm not going to do certain things but unwilling to accept that it's not my choice, that I really am sick (instead of just lazy or something). Sorry to vent like this. I know you all understand this all ready. I just feel so lonely dealing with this, and I hate thinking about how I'm going to have to keep dealing with it. jump

Postural heart rate changes and tachycardia can be caused by all kinds of things, not just POTS. Pain can make a person's heart race, and anxiety, and other illnesses. Basically any bodily stress can cause a brief heart racing. My understanding is that POTS is a diagnosis that comes only when all other likely reasons for a racing heart have been ruled out. Before meds, my hr didn't necessarily go sky-high every single time I stood up in the beginning. For about a year it would speed up some, but not to the high levels that it later did. And sometimes in the afternoon I wouldn't noticed it at all. (Later my symptoms became more intense and more regular). But it sounds like what you're describing is different. Even when my tachycardia wasn't every single day, it was still my biggest "problem symptom." What you describe almost sounds like your heart could be occasionally racing from other things -- the bodily stressors of your other symptoms, for example. Especially if you have other heart conditions, an occasional tachycardia could easily be a secondary symptom of another heart condition and not POTS. I can totally understand your frustration!! These illnesses are so difficult to pin down and deal with. However, if you never really had a consistent problem with your hr changing upon standing up, then I think you might be smart to talk to your doctor about looking for a different diagnosis. Even if you haven't found the right ANS disorder to describe what you're dealing with, you don't want to risk being treated for something you don't really struggle with (like tachycardia) and have doctors not be focusing on what IS bothering you the most.

I've always been an introvert, and I would still consider myself more of an introvert than an extrovert, but there's no question my illness has made me vastly more extroverted than before. I never used to feel the need to rely on others to help me through tough times; I was never the kind of person to call a friend when I was feeling down. Since becoming sick, I've learned how important it can be to stay in touch with people as a way of staying cheerful and optimistic. Also, since becoming sick, I've really had to learn to speak up for myself and fight for my needs, something I NEVER, EVER did before. I definitely use my voice now much more than I ever did before. I suppose these are small gifts that come with illnes; the silver-lining so to speak. I think before I was shy and introverted to a fault perhaps. Now, out of necessity, I am more balanced. jump

I personally never go to the ER. I get palpitations, tachycardia, bradycardia, low bp, skipping beats, breathlessness... in the past even when I have "heart-attack-like symptoms" (chest pressure, radiating pain, trouble breathing) I still don't go to the ER. In my case, my doctors assure me I have no structural problem with my heart -- just ANS dysfunction. So even if I feel like I'm dying I can logically assume that I'm not, in fact, dying. But, I wouldn't necessarily recommend this approach to others if you have an actual heart condition (in addition to pots or ncs) or if your doctors haven't really figured out what's wrong yet and reassured you. Also, a few times when I've known I was really dehydrated I did go in for rehydration IVs. that's the only think I've found to be helpful, though; in my case, there's nothing they can do about the heart symptoms.

Firewatcher (and others who might know), What does a consistently elevated red bloodcell count mean in relation to POTS? For two years I had to have a CBC every few weeks due to a completely different medical problem that's now resolved; in all of those tests, my RBC's always came back elevated. I asked my doctor about it and she said "oh, that's nothing." But they were always consistently high by quite a bit. Is this significant? thanks, jump

I also have SAD, but in my case I don't think it's related to POTS. SAD runs in my family, and I live in a fairly northern town. Right now the sun sets at 5 -- I think that has more to do with how I feel than any ANS thing. I've had SAD since I was about 12 years old but I only developed POTS as an adult.

Thank you both! I'm going to take your advice -- those sound like things that apply to me as well.

Hello all, I've finally worked through my ridiculous health insurance deductible, so I'm considering seeing my PCP again to see if I can get more information about my POTS and possibly get more relief for symptoms. In March, I had a TTT and a 24-hour holt-monitor test through my cardiologist. I had had a healthy echocardiogram two years previously so they didn't redo it. From this I was diagnosed with POTS and given and beta blocker; everything else I've done (mostly lifestyle changes) I've learned about through my own research. My concern is that I read about how certain tests should be run to "rule out" certain causes of POTS; like adrenal testing, testing for Addison's disease, testing for food allergies, and testing for Lyme disease. My doctors didn't have me do anything beyond the two cardio tests. They seem to feel certain I have no underlying heart conditions and I tend to agree with them as the BB has sorted out most of my rhythm issues and has helped with the tachycardia. So my question is, what tests do you think are the most important as follow-up to diagnosis for POTS? Are there some that will narrow the diagnosis or help with symptom management? Right now my biggest bothersome symptoms are excessive thirst, chronic chest pain, digestive discomfort, insomnia and fatigue. My doctor is caring and open to suggestions but she doesn't have a lot of background information on dysaut. What tests were most important or helpful to you? thanks! jump

Have you been tested for autoimmune diseases like lupus? Discoloration around the eyes can be a symptom, and ANS problems can be caused by or mirror symptoms of AI diseases.

Hopefully the judge will indeed be considerate. Although a hassle, it is really interesting to sit on a jury. Hopefully yours will be short and sweet!

I'll second coconut water!! It's a natural isotonic beverage and it has the exact chemical make-up as human plasma (no joke!) so it's great for fixing dehydration and electrolyte imbalances.

I am generally a little skeptical of my cardiologist, but he did tell me that doing an echo standing isn't necessary, as the echo is done to determine only if there is structural damage to the heart. This can be seen whether the heart is acting up or not; in other words, an echo isn't used to diagnose POTS or to determine heart rate, it's only used to rule out structural problems. You can have a perfectly normal echo and still be having heart rate problems. Same thing with murmurs -- if the murmur is causing physical damage, it should show up in the echo even if the murmur itself isn't present at the time of the echo.

My understanding is that everyone becomes tachycardic with a fever. That's one of the reasons why they rule out viruses and other illnesses before concluding a POTS diagnosis. Sorry you feel sick! hope you feel better soon.

I consider myself high-functioning and I know I can't stand for very long. Sometimes about three minutes, on a good day maybe five -- but I've found that I can be high-functioning without standing very much, and without standing still hardly at all. For me, walking is different - walking makes me tachycardic and short of breath, but I can *do* it, whereas standing still is pretty much an impossibility. There are very few things in my life that require me to stand still, and those few things (waiting in line, for example) I've learned to avoid (usually I shop with someone else and make them wait in line while I find a chair to sit in, that sort of thing). I personally don't feel very well most of the time. Most of the day I feel like I'm going to faint and I feel sick and often I have a lot of chest pain. But I've learned that, for me, there is a big distance between feeling sick and actually collapsing, so I don't let feeling sick prevent me from working and doing most normal-life activities. Luckily I have a high tolerance for pain anyway, and I'm more or less used to feeling under the weather most of the time. I do have days that are worse, and those are hard, but the kind of base-line symptoms I have are such that I can still do almost anything, with fairly easy adjustments and accomodations.

Hi all, I know that for a lot of us a high heart-rate occurs in response to a dropping in BP -- part of the body's way of compensating. I also know that with POTS anything goes and sometimes tachycardia isn't a perfect cause-and-effect symptom. However, I'm curious: does anyone know what the "science" behind a high BP and a low hr might be? I've noticed that when I have this combination I feel very unwell, and I'm curious to know if I'm doing something to trigger it, besides they typical POTS triggers. Usually I have difficulty with tachycardia, not bradycardia, and I don't usually have abnormal BP (usually around 110/60). With the high BP / low HR combo, is the body compensating for something, the same way tachycardia can be compensation for low bp?