jump

I actually think more people have a mild form of this than is realized. I don't think I know anyone who doesn't associate words with colors, or sounds with colors, or map numbers, or ANYTHING. I can imagine that extreme forms of this might be linked to autism, but it seems like everyone I know does this at least to some extent.

I had a similar experience, in that I had a TTT with significant results (my hr went from 60 to 140, and then they stopped the test because they said my hr was getting too high), but when I asked for my medical records all it said was "TTT - normal, negative for syncope." When I went to see a specialist, I explained what happened in the TTT in detail, and noted that they didn't record any of that on my medical file. I also explained that I didn't want to have the TTT again because of financial reasons (it cost me $700 the first time!). The specialist understood completely - he was able to diagnose me based on my own records (I recorded my hr sitting and standing for about a week) and based on a different test I had had previously. In other words, he was wiling to "take my word for it" and did not require me to have another TTT. I think you should see someone who specializes in dysautonomia, and just explain everything as you have to us. Chances are, he or she will have had other patients with a similar situation - a cardiologist who misdiagnoses, mis-prescribes, and/or gives incomplete medical info - and he'll be very understanding.

Excessive thirst (and excessive urination) were/are my biggest complaints - the thirst is so extreme as to be painful, and having to pee all the time really interferes with my life. I've found a few things that have helped, although admittedly I still don't have "normal" thirst levels - but much closer to normal: * Florinef, which you said you were already on - if you haven't noticed a difference, perhaps you should try an increased dose? When I started taking Florinef I noticed an immediate change in my thirst levels - within 24 hours. If you're not already on a high dose, consider upping yours. * Sipping warm water slowly throughout the day. By warm I mean about 80 - 90 degrees. This is a lot easier for the body to absorb; when we drink tons of cold water, especially if we have a whole glass all at once, our bodies are more likely to "dump" it than absorb it. * Drinking coconut juice and/or gatorade. The coconut juice works best for me. * Don't get up too early in the morning if you can help it. Waking up - and getting out of bed - early triggers all my POTS symptoms, and seems to make the polydipsia and polyuria the worst. * I try to limit my water intake to 3-4 liters a day, no matter how thirsty I am. The problem is that my body doesn't seem to absorb water well, so drinking more doesn't really solve the problem, it just makes me have to pee constantly. By limiting my water somewhat, I find I am able to keep from feeling too sick (if I limit myself to just 2 liters, for example, I get too POTSy to really function) but also train myself to ignore the thirst a little. I've found that although it hasn't gone away, I've been able to get used to it more and it no longer bothers me as much as it did. * Eating salted foods and high-sodium foods help me much more than taking salt tablets; I suspect my body doesn't absorb the salt tablets as well as it absorbs salt in food. Good luck! I hope you find something that helps....

Thanks guys! I see there is another thread about this very thing on the front page, so I will read that, too. Dsdmom, I do have a bad reaction to trying to do too much, but I always thought it was POTS. If I exercise too much, or just do too much in general (too much walking around, too much work, etc), I run a fever, experience intense chest-pain, and crippling exhaustion. This doesn't happen to me very much any more to such a severe degree because I REALLY pace myself. I have learned my limits, and if I abide by them, then I am just exhausted, and not feverish or totally unable to function. I wouldn't normally worry too much about the distinction, but I am thinking of going back to school and I am wondering if I need to get to the bottom of this so that I can be armed with the right diagnoses if I end up having difficulty in school.

OK, I know this has been asked before, but how do you know if you have "just" POTS, or if you have POTS and CFS? I have been taking florinef, and it has helped a lot with my "classic" POTS symptoms (ie, the tachycardia). I hardly ever have significant standing tachycardia any more. Some other peripheral symptoms, like excessive thirst and excessive urination, have been better on florinef, too. However, my fatigue is just as bad. I looked on-line and I have some CFS symptoms but not every single one, so it doesn't seem clear-cut to me. I have had "weird" bloodwork, but always attributed it to POTS. I had been attributing my extreme fatigue to POTS, but now that most of my POTS symtpoms are resolved *except* for the fatigue, I'm wondering if something else is going on. I know some doctors believe OI and CFS are the same disorder, and still others believe they often go together. Does anyone know how I would figure this out? CFS seems like an even harder thing to diagnose than POTS, and I don't even know how to begin sorting this out. I know I need to see my doctor, but I want to go with articles, suggestions for test, etc, as each doctor's visit costs me more than $100 so I have to make good use of my time. Thanks for your help, Jump

Yes, the Holter Monitor was how I was diagnosed. I had a TTT, but because I didn't faint (even though my hr went from 60 to 140 and they had to stop the test) it was considered negative for POTS (obviously that doctor wasn't a specialist). The HM test showed that my hr was high doing every day things like brushing my teeth (standing), and very low when I was at rest (45 sleeping, 60 sitting). Also, it showed a big jump from when I first woke up in the morning to when I stood up and started moving around. Apparently this big morning jump is the "hallmark" of POTS on an HM test, and it allowed my doctors to diagnose me without doubt. I wouldn't be too afraid to mention POTS to your doc. Simply say that you've been very concerned so you looked up your symptoms on the internet. Bring in a printed list of POTS symptoms and highlight the ones that apply to you. That way, even if your doc decides you don't have POTS, he or she will have a highlighted list of all the things that are interfering with your help, and will be more likely to help you pursue a diagnosis, instead of just sending you on your way. Good luck!

Do you have POTS or another form of dysautonimia? My understanding is that remeron is contraindicated for people with POTS, because it can cause standing tachycardia. In fact, I had a very healthy friend who took it for two years, and developed temporary OI - her resting hr was in the 50s and her standing hr was in the 120s just from the drug. In her case, it went away once the drug was totally out her system, but it doesn't seem like a good drug to take to me if you already have problems with tachycardia.

I have chronic chest pain in the winter, and for a long time I thought it was the cold, but now I actually think it might be due to dryness. One of my most troubling symptoms has always been excessive thirst (made better by florinef), and I always "feel" dehydrated. My current apartment is very moist and damp, and I find when I stay at my parents' house over night (their house is VERY dry), my chest-wall pain is always much, much worse. And of course, it's much more dry in the winter than in the summer. The other factor, though, that I can't rule out, is that in the summer I hardly work at all (about 7 or 8 hours a week), whereas in the fall, winter and spring I work much more (15-25 hours a week). So sometimes I wonder if the chest pain is related to the increase in activity. For me, work-related activity is the most "stressful" on my body (standing up, sitting down, going up stairs, talking to people in a coherent way, driving). Although I'm inclined to think the winter-chest-pain is about dryness, it could also be about increased physical stress, I don't know. I do know I haven't found any relief for it. I think the florinef has helped some, and it has also helped me feel less thirsty all the time - but it's hard to say, because it could also be that I'm just more used to the pain now and less bothered by it. But I think the florinef did help. Other things I've tried - massage therapy, reiki, ibprofen, asprin, inhaling steam, keeping very warm, doing yoga - do not seem to help at all.

Hi all, The changes I made were not anything especially unusual for the treatment of POTS, I think it was just a question of weeding through all the possible treatments (I tried a lot of things that did not help very much) before finding the constellation of treatments that do seem to work. And I think some of it was just good luck. But here's what has been most helpful: * Slowing down the pace of my life considerably, and recognizing that I have serious limits on the amount of energy I have. Planning ahead for these limitations and respecting them. * Drinking lots of water and eating more salt. * Making moderate exercise a priority (and by moderate, I mean very moderate.... a slow walk, etc. For me, regular exercise is more important than trying to do something strenuous or for a long period of time). * Making sleep a HUGE priority * Making good nutrition a priority * Taking Vitamin D, Vitamin B-complex, and magnesium supplements * Taking Florinef * Following up to make sure my other health concerns (thyroid disease, celiac disease) are under control * Then I think another big part of feeling better was just coming to terms with the fact of chronic illness and chronic pain, and learning to self-soothe and use things like meditation, talking to friends, and attending to my spiritual needs to cope with some of the symptoms that I have no control over.

Hello all, I had life-disruptin POTS symptoms for 5+ years before finally having a bit of a "crash" and then getting diagnosed about a year and 8 months ago. After diagnosis, things improved a small amount when I started making lifestyle changes (more water, more salt, etc). But last winter things were really hard for me, and I felt very discouraged; in addition to POTS, I have severe chest pain in the winter (I don't know if it's related or not), and the pain combined with the debilitating POTS stuff had me really down. I was worried I would never be able to live an even close to normal life. But then I saw a specialist in September, and I'm happy to report that for the first time in several years I feel ok. Definitely not "normal" - I can't work full time, for example - but working part-time I feel like I have a mostly-normal life now. I can do most of the things I like to do, in moderation. I still have some pain issues, but they are not as severe. I still have some weakness and a lot of fatigue, but the dizzyness and other POTS symptoms are hardly noticeable from day to day (partly, I think, because I have gotten used to it and don't notice when my heart races, but also partly because the tachycardias are fewer and less severe). So, over all I am feeling much more optimistic than I was this time last year. I just wanted to put that out there, for those of you who are newly diagnosed or really struggling - you never know when things might turn around. I know I could have another 'crash' at any time, but I am grateful for this respite for as long as it lasts. I hope others find some relief as I have. wishing everyone the best, as always, jump

1) Pupils oscillate back and forth between more dialated and less dialated. Looks like my pupils are wiggling. 2) No liquid feeling in head, but when symptomatic I can "hear" my blood pulsing in my ears with very little exertion; before POTS and when less symptomatic, this only happens if I am exercising really strenuously 3) Actually, I've experienced both symptoms. But I would say it's more likely that my hands will get swollen and hot; about every fourth time they will get really cold and white. Usually they are very cold and white all the time, and doing something like that - hanging them over the bed - usually helps this symptom.

Vitamin D makes me feel much better, but I have a chronic insufficiency. I have read that an excess of Vitamin D can give you the same symptoms as too little (sleeplessness, exhaustion, irritability, blood sugar problems); it is possible to overdose on D if you take supplements. Is your son taking supplements because he has low levels? If he doesn't have low D, maybe the supplements are making his D too high? Also, I think the type of supplement can sometimes matter - I take 2000 IUDs a day and have no adverse side effects, but I didn't feel good when I took the once-a-month mega-dose.

I'm a vegetarian, and have been most of my life. I definitely don't think it negatively impacts my health. My mother, who also has POTS and NCS, is not a vegetarian but finds she feels much better when she doesn't eat meat. Yes, you do have to make sure your B-vitamin levels and iron are normal, but if you still eat dairy products that shouldn't be much of a problem. The only thing I noticed is that being vegetarian means I often choose "health food" alternatives, like when I'm at a restaurant or when I buy pre-prepared meals... and "health food" often has less salt. So I make sure to use my salt shaker. But other than that, I've found no adverse connection between being vegetarian and having dysautonomia. If you're concerned, maybe meet with a nutritionist to make sure you're getting a good variety of foods in your diet?

Have you tried magnesium supplements? I find they help with palpitations more than my BB did, although the BB helped some.

I had reflux problems too! For me, then went away when I stopped eating gluten. Thank goodness. Have you looked into possible food allergies? It seems like allergies often go with POTS, and I'd imagine an undiagnosed allergy could make reflux or IBS worse.

Being underweight exacerbated my POTS symptoms. I am now a healthy weight and I find my symptoms are not as severe as they were when I had a low BMI. I also had some absorption issues because I have a gluten allergy. Before it was diagnosed, I had a lot of GI problems, but vitamin deficiencies never showed up in my bloodwork, and I did not experience the classic wasting effect of undiagnosed gluten allergies. However, once I did get diagnosed and stopped eating gluten, I noticed a BIG (positive) change in my POTS symptoms. I suspect that poor nutrition was adversely affecting everything, even though it wasn't severe enough to show up in tests.

Florinef also causes bruising, if any of you are taking that.

Hm this is interesting to me. I get chest-wall pain that comes and goes (usually for a few days or a week at a time), accompanied by low fever and fatigue. It bothered me so much last winter that I went and got a battery of lung tests, all of which were normal. In my case, this chest-wall pain did not start with the onset of my other POTS symptoms, but rather started several years later, after I had had a nasty chest cold that I left untreated (bad insurance at the time). The chest pain started with the illness, and has come and gone in varying degrees of severity since then. On really bad days, I can only take shallow breaths because of the pain, and I can't really do anything. I've tried anti-inflammatories and they don't really seem to do anything. My doctors had all just been telling me this was POTS, but when I went to see an EP (who is the only doc I've ever seen who seemed to know what he was talking about), he said he felt fairly certain that the chest-wall pain was NOT POTS. Maybe related somehow (the way my various autoimmune problems might be related), but not caused by it. He also thought the degree of fatigue I was describing was not related to POTS. I haven't pursued anything further with this, because I've already seen a lung specialist and lots of cardiologists, and I don't know who else I would see about this pain. If you ever figure anything out, please do post it here!

I live in New England, and I STRONGLY suggest you consider hospitals in ME or NH instead of MA. As you said, because massachusetts has health care reform, they no longer have a good system to deal with patients who have no health insurance and have limited income. They are trying to handle their in-state billing problems and they don't have the time or money right now to deal with out-of-staters. I had really good luck at Dartmouth/Hitchcock hospital in Lebenon, NH. You might want to consider them. They were able to fully diagnose me and set me up with a reasonable treatment plan, too. I have health insurance, but I also have huge deductibles, and the hospital was willing both to give me a discount AND to set me up with a manageable payment plan. However, with any hospital, you have to call a social worker or a financial adviser at the hospital FIRST - and fully explain your situation. The receptionist who makes your appointment can't help you, so don't even bother telling him or her that you can't pay. Also, I know there are still some Catholic hospitals in NH and VT that are prepared to give charitable medical services. They might be a better bet than a regular private or state hospital. I would imagine there are some in ME, too.

I spike low-grade fevers whenever my POTS symptoms are worse. It happens when I wear myself out (if I do too much). My little fevers are ALWAYS later in the day - in the late afternoon or early evening - and they always go away if I get some rest. I usually will get them for a few days in a row, and then they'll go away until I run myself down again. My doctor feels certain this is related to dysautonomia and POTS. I am going to see an endocrinologist in a few weeks, and if she gives me any further insight, I'll be sure to share it here. The biggest thing for me, though, is that these little fevers are a sign that I really need to rest asap. If I ignore them, they only persist and I feel more and more sick. When I see them as a sign that I need rest, they usually go away in a day or two.

I've had LOTS of GI problems, starting a few years before my POTS symptoms. At first I was diagnosed with IBS, but several years later they figured out I actually have celiac disease, not IBS. But I'm not sure there's much of a connection, except that Celiac is an autoimmune disorder, and people with dysaut. seem more likely to have some kind of autoimmune problem than the regular population. When I wasn't properly diagnosed and was having diarrhea all the time, I think it made my POTS symptoms worse (because I was dehydrated). But other than that, I really see no connection in my own life. What kind of connection are you thinking of with this?

I have the same problem, although I am not pale, and no one else in my family has the same problem, even though some of them are very pale indeed. My D levels are never normal naturally (although incidentally, my doc told me they were fine as long as they were above 30 -- do you think it's possible that your doc has unrealistic expectations about what your D levels should be? Did she have a reason for wanting you to be in the upper end of normal?) Honestly, I have all kinds of weird symptoms when I let my D fall low (can't sleep well being the biggest problem), so I just happily take my supplements. I spend a LOT of time outdoors - in the summer, probably two or three hours a day - and my D's are still never normal. Even if you want to continue trying to get them to be normal naturally, though, now is probably not the time to try, since it's fall.

I have this problem, too! I'm so thirsty all the time, and anything I drink (water, gatorade) seems to come right out within 15-20 minutes. When I described this to my POTS doctor, he said it's not really a symptom of POTS so much as a symptom of autonomic dysfunction in general. I am going to see an endocrinologist for it, and if they tell me anything insightful I'll be sure to post about it. So far, I've found it helps to: - sip warm water throughout the day (as opposed to drinking a glass of cold water) - this has been the most helpful thing to slow down the time between drinking and having to go to the bathroom - increase my salt intake - stop drinking 2-3 hours before bed - sleep with my head tilted up But mostly it's still a big problem for me. I can't go to a movie and sit for two hours without having to pee really badly, and that's embarrassing for me; I also am constantly having to leave my classroom to pee, which is embarrassing as well. Sometimes I just won't drink - like if I'm going on a long car ride with people who aren't as sympathetic to my health problems - but not drinking just makes my POTS symptoms sky-rocket, so that's not such a great solution either.

This is a totally self-serving poll since, as I mentioned, I'm about to try this medication. I'm really nervous about it, and I thought seeing other peoples' experiences would help me.

Hello all, I'm about to start Florinef, and I was reading through all the information, and it keeps saying "tell your doctor if you have hypothyroid disease." I do have hypothyroid disease, but my doctor already knew this when he prescribed Florinef. From what I read, it sounds like being hypothyroid can sometimes make a low dose of Florinef have a stronger effect. Do any of you who have POTS and hypothyroid know anything about this?