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I think by all accounts I would be considered very high-functioning. I personally feel like I've lost a lot of ability since getting sick, but in the grand scheme of things it's not too bad. I am able to stay "functional" by: - Only working about 10 hours a week. A few weeks ago I worked 20 and paid dearly for it. - Drinking about 5 liters of water a day. - Taking a beta blocker and sticking to a vitamin regime. - Accepting that about 1 or 2 days a week I will need to spend most of the day in bed (but this means the other days I can do most things) - making sure to get at least 10 hours of sleep a night. - avoiding all the usual triggers: standing, skipping meals, eating too big of a meal, getting too little sleep, not having enough water, waking up too early, etc etc etc. - I struggle with daily pain and fatigue, but I try not to give in to it and I try not to let it affect my decisions. Although there are times when I feel like these accommodations are a big change from my life before illness, bit by bit they are just becoming habit. I feel lucky that I am able to do as much as I can: work part time, exercise a few times a week, even go on the occasional not-too-strenuous hike, have a social life as well as a work life and a home-maintenance life. There are times when I have plans with a friend and I don't feel well enough to keep them, and that's always hard. But there are also times that I can keep those plans. I'm not on disability, so working part-time is very difficult financially, but at least I am able to keep my apartment and buy groceries. I know a big part of it is just luck that I am able to function as well as I do, but I also try to make sure that I really stay on top of my lifestyle changes, and that's made a big difference. jump

Thanks! That made a lot of sense. I get sharp pains too, and, as I've been complaining about lately, a constant but more subdued pain. But reading this little blurb made me wonder, if my lungs don't rest properly in between respirations, maybe that could also make my chest cavity feel "tired." Who knows? But it was comforting to read! jump

I don't get phantom smells, but I do get other sensory symptoms, like strong sensations of extreme hot and extreme cold alternately flashing all over my body. I usually get these if my other dysaut symptoms are acting up. jump

I only have visual symptoms when I'm experiencing pre-syncope, so I'm pretty sure mine are only a side-effect of POTS. If I stand too long or stand up too suddenly I experience sort of a "white out" - it's like rapid flashing of light in front of my face. Almost like if tons of papparzzi were snapping those old-fashioned cameras in my face. When this happens I can't see anything, but it happens very consistently if I'm going to faint, so it's a really good warning-sign. When I experience this I sit down fast, and I'm usually fine. What an interesting thread! jump

I experience more skipped beats after eating, whether I have indigestion or not. I think it may have something to do with increased blood flow to the stomach/intestines? I'm not sure. I also get more skipped beats when I'm tired, but I've also noticed that the frequent skipped beats make me feel more tired, too. So for me it's kind of a chicken-or-the-egg thing. For me, when I breathe deeply I get a little bradycardic, and my skipped beats happen more often when I'm brady. Does your heartrate go low? Like others have said, it's important to get this checked out by your doc, but I also wanted to reassure you that it's possible to have this and have it not be a medical problem. Before taking beta blockers, I would sometimes have over 300 skipped beats over the course of one hour. It was uncomfortable and scary, but in my case, it wasn't harmful. For me, the beta blockers have really helped. I didn't expect them to impact my skipping problem but they really have - I now rarely have skipped heart beats. Have your doctors discussed any possible treatments that might help you with this? good luck, jump

I have this problem too, big time. My heart goes out to you! It really is crappy not being able to sleep -- especially since, this is probably true for you too, my POTS symptoms are SO much worse when I'm not well-rested. I typically wake up every two hours, sometimes every hour. On average I wake up five times a night, and I usually stay awake for at least 20 minutes before being able to fall back asleep. Lately I've been waking up after sleeping for two hours (like you, I have no real trouble falling asleep the first time, just trouble staying asleep) and then not being able to sleep for the rest of the night; sometimes I can fall asleep again in the morning, around 6 am. For me, part of it is because I have polyuria/polydypsia with POTS -- I'm careful not to drink anything for two hours before going to bed, but I still have to pee all night long! But even when that symptom is better than usual I still wake up every two hours. I haven't found anything that helps, besides making sure I set aside a good ten hours to "sleep" each night, since I know I won't actually be sleeping the whole time. I've tried the usual things (like you said, warm milk, camomile, no caffeine) and I'm careful to use my bedroom only for sleeping (not watching tv, etc), and when I wake up in the night I don't put the light on or anything. None of it helps at all. Lately I've tried having a glass of wine in the evening, and although that helps my circulation a little, it hasn't helped me stay asleep. I just live with it. Which I know is not the best advice, but I haven't found anything else. The only thing that helps me fall back asleep is basically boring myself back to sleep. I've memorized five poems and when I can't sleep I repeat them silently to myself over and over again until I fall asleep -- this keeps me from thinking about other things and ruminating on the day, which never helps. I do find it helps me fall asleep again faster, but it (obviously) doesn't keep me from waking up in the first place. I really hope you find some relief for this, because it is terrible! If you find anything that helps make sure to let us all know. And take comfort in knowing that just lying there and resting is still good for your body, even if it's not the best. jump

OK, I'm going to start carrying a straw in my purse, and after I go up a flight of stairs or have to stand in line I'll breath in through it and see if it works. If it does I'll let you all know - maybe we'll start a new fad. jump

If it's not interfering with your son's daily life too much, you could just wait and mention it to his pediatrician at your next appointment. Perhaps the pediatrician could check his pulse lying down and standing (not a TTT, just a quite pulse-check) which wouldn't be a scary test but might give you a little more information.

I also was mis-diagnosed as having IBS several times before it was finally agreed that I don't have IBS but some other GI problem, probably related to dysaut. My doc explained that with IBS I would see a real pattern to my symptoms -- eg, certain foods, high stress, etc. would trigger certain symptoms. Instead I have IBS-like symptoms with no apparent connection to what I eat or when, and then tend to get worse when my POTS symptoms get worse. jump

Thanks so much for all the information!! This has all been really interesting. I'm going to see about trying those patches to see if they help more. The reason I thought it was connected to POTS/dysaut is that the pain gets significantly worse when my other symptoms get worse -- but I wonder if my POTS symptoms are just aggravating the problem instead of causing it. I wonder if tachycardia could be re-irritating my ribcage? My heart beats hard when I'm not well but I'm not entirely sure it beats THAT hard. Last week I did have much worse pain after I had been sick (vomited) the day before, which had been due to pushing myself and I had lots of GI problems as a result. So that could be part of it.... Another thing is it gets much much worse when I don't drink enough water. I'm not sure if I'm going to ever really figure out what's going on, though. I keep researching things on-line and don't really find anything that sounds like a true description of what I'm dealing with. . . . Thanks again, if anyone has any thoughts on how hydration might affect chest pain, I'd love to hear about it... jump

I also had very severe negative reactions to effexor. And in fact, my docs believe I have hyperadrenergic POTS because of my adverse reaction to effexor. but, it does seem like everyone is different when it comes to meds. If you are going to try it, I would say try it really really slowly, even more slowly than the doctors recommend (like start with the smallest-dose pill every-other day, instead of every day). And if you don't like it, go off it really slowly too.

Good for you!!! Remember that what you were able to walk was a big accomplishment for you, just as I'm sure 60 miles was a big accomplishment to your healthier friends. I was in a similar situation this year, where I signed up for a bike-a-thon charity event months in advance, and by the time it came up I knew I wasn't well enough to bike 25 miles. The people who were sponsoring me were really understanding and gave me the money they'd promised anyway, but a lot of my co-workers who were also doing the bike-a-thon were much less sympathetic. They teased me about being a "weakling" and stuff; but I just tried to laugh it off, because I think they truly don't understand that I'm dealing with an actual illness. It seemed easier to deal with it by just turning it into a big joke (even though this is my daily reality, and not all that funny most of the time!!) Don't let your friends' lack of sympathy get to you. You did a great thing for a great cause, and that was the whole point!!! jump

Pat, that doesn't sound funny at all!! I already take all the underwires out of my bra, and I tend to wear them pretty loose. Did your experience with this last for a long time? The more I read the more I question that this is what I deal with. This has been a very consistent pain for well over a year - it never goes away completely, although if I do something like wear a back pack it gets worse. Plus, I can't make it hurt more by pushing on my ribcage -- although it is definitely my ribs that hurt. It's more of an all-over rib pain instead of a particular swollen spot. jump

Oh, you know what! I talked to my doctor about this since this thread was more "active," and she said that all weight-bearing leg exercises temporarily increase the blood flow to the legs, and that squats are the WORST because you have both gravity and muscle tension causing extra blood -- essentially like blood pooling. So for someone who struggles with maintaining a regular blood pressure upon standing, squats are pretty much the devil. It's ironic, because of course leg strengthening exercises help us long-term with the whole blood-pooling issue. But my doc said you should always do them on the floor with your legs over your head (like a leg press scenerio) instead of squats, and that it's better to do many reps of a low weight than a few reps of a high weight. I guess this gives the legs the same long-term benefits without the short-term bp problems. She also told me that any time I do any strength exercise with my legs, I should stand up/change position slowly afterward. jump

I know most people have had the most success with a combination of medication and lifestyle changes, but I'm curious to see which one you all think has played the bigger part in managing your illnesses. jump

Thanks marshallgurl, that was really helpful information. One thing I keep reading over and over is that "costochondritis usually goes away on its own in 2 - 8 weeks." I even read on one medical website that is it NEVER a chronic condition. Have you had it for a long time? If I've had this problem for over a year, does that mean it isn't costochondritis? jump

Melissa, I get motion sick riding light-rail too!! Even when I'm careful to sit facing forward. I even make myself motion sick when I'm driving my own car, which is supposed to be impossible. I do find that ginger helps, but pickled ginger usually makes me feel worse. Ginger altoids often help me. I don't get migraines, but they do run in my family. Perhaps there's some connection there and I got only half of the migraine/motion sickness gene. jump

You know, I feel really relieved that people don't think I look sick all the time. I, too, hate it when "You don't look sick" is used as an accusation, or suggestion, that you're making it up. Or as evidence that you're making it up. But at the same time, I'm guilty of a similar crime. A close friend of mine has cancer (and is obviously very sick). She's lost her hair, she's skinny as all ****, she has a horrible surgery scar. Yet when I see her I often say "Hey, you look great!" Obviously she doesn't look great as compared to healthy people. But on days when she's looking great for someone so sick, or on days when she's looking better than she did before, I usually say something. She knows I mean it as encouragement, not that I suspect she doesn't really have cancer or that she's making it up, and she always appreciates the compliment even though we both know there's something a little ludicrous about telling a bald, pale, skinny woman that she looks great. She knows it's a compliment because there's no unspoken question in the air about whether or not her illness is legitimate. I wonder if sometimes people tell us we look well or don't look sick because they know we have a chronic illness and they're trying to make us feel better. Kind of like saying "well at least you don't look as crappy as you feel," in a supportive or attempt-at-helpful way. Because we've also had so many people just not believe us that we're suffering, maybe it makes us take the occasional well-intentioned comment as an accusation. jump

Hi All! Sorry to start two threads in a row but they are very different questions. I get motion sick extremely easily and I've wondered if it's related to POTS. I wonder this because one thing that really helps (besides taking dramamine or bonine) is eating a lot of salt (like even more than usual). So I wondered if motion sickness could be somehow related to poor salt retention, and ANS in general. Anyone know? thanks, jump

1) Jump 2) 27 3) POTS, hypothyroid disease, and some general dysautonomia problems that aren't specifically POTS. 4) 27 conclusively, but sort of had a quasi-diagnosis at 24. Symptoms started at 19. 5) North East US 6) So extremely tachycardic when standing that I couldn't stand for more than 10 or 15 minutes at a time. LOTS of weird, irregular heart beats and flip-flops that made me feel really sick and exhausted. Needed at least 12 hours of sleep a night to function. So extremely thirsty all the time that it was painful; polyuria. Lots of gastrointestinal problems and bowel problems similar to IBS but with no rhyme or reason to them. Night sweats and chronic insomnia. Severe chest pain. 7) I still have some tachycardia, especially in the mornings, but it's much less than before (like my hr goes from 50 to 100 instead of 50 to 150). Often no tachycardia in the afternoon or evening. I'm able to stand as much as I want and exercise about 30 or 40 minutes; sometimes with some breathlessness but not enough to make it impossible. Still have the excessive thirst and urination (I drink 3-4 liters of water a day and feel really sick if I don't sip water all the time). Still have severe chest pain, but no longer have the constant weird/irregular heart beats. Still need a lot of sleep, but I can function on much less if I have to (like I can get 7 hours and still work the next day, I just feel like crap. Whereas before I wouldn't have been able to work on 7 hours of sleep). I still have the same GI problems, but when I take the time to "eat right" it's not quite as painful. No more insomnia and the night sweats are much less. 8) Ignoring my complaints and hoping they'll go away!! This didn't help at all. Also, in the beginning, my doctors thought this might be being caused by pneumonia and bronchitis that I had, and the fact that I was thin. They thought if I gained weight and gave my body a few months to recover from the pneumonia then everything would resolve, but both of those things happened with really no change to my ANS problems. 9) I take 25 mg's of a beta blocker and that seems to have really helped with the standing tachycardia and all but cured the irregular heartbeats. I try to eat 6 small meals a day and that seems to help a little with some of the GI problems, although not entirely. I try to rest and not push myself too much or get really busy and stressed out. This helps a lot with the thirst, the chest pain, and the GI problems. I try not to get out of bed before 8 am. This helps with everything. On days when I have to wake up earlier all of my symptoms are worse. I try not to stand still for very long; I either make sure there's a place for me to sit, or if I really can't sit, then I move around and switch my weight from one foot to the other. I drink a lot of warm water, coconut juice, and gatorade. My body seems to absorb this better than plain cold tap water. I do not fly on airplanes unless I absolutely have to. I really try to speak up for myself and tell people when I need to sit, or find something to drink, or have a snack. I find I can avoid crashes most of the time if I use my voice and take a lot of precautionary care of myself. I take a daily B complex and a magnesium supplement. I'm not sure how much they help, but they definitely don't hurt. I notice more of an overall improvement with the magnesium. If I have to do something that I know will make me feel unwell (like if I have to visit a relative and I know it will be a busy weekend full of travel and standing and not eat properly) then I plan ahead and make sure I can have a day or two off afterwards. I know I won't feel well, so I plan for feeling bad instead of having to cancel things last minute.

Oh, I do this too! I suppose it's not really funny, but I do find it amusing that I keep getting myself in these situations... I think I'm so used to being able to conquer anything in life through sheer will and determination that I'm really struggling with just accepting that "being determined" isn't enough to keep me from collapsing!! Recently I was visiting friends and they wanted to walk around for several hours in this park. Normally I can manage that kind of thing if I'm feeling well anyway and I walk slowly and take breaks on a bench every now and again. But this time I had a heavy backpack with me. And part of me knew this would probably be the "straw to break the camel's back," and tip the experience from manageable to unmanageable, but did I listen to that part of me? Nope! So today I am home in bed. Hopefully I will learn from this!!! jump

Did you get through the weekend all right, and did your doctor shed any light on the situation? I just wanted to chime in that while the sudden change might be nothing, it also might be something. Make sure if this is still going on that your docs are paying attention to you!!! Having a low hr can make you feel really tired and also "weird," like brain-fog, difficulty concentrating, like you're moving in slow-motion, or like you have a head cold. Hopefully you're not still feeling badly! good luck, jump

Hello all. As I know I've mentioned before, one of my worst symptoms of ANS/POTS is crushing chest pain. My doctor and I ruled out any serious heart problems which of course was a relief, but doesn't help me at all with managing the pain. It's an every-day all-day thing, although some days are better than others, and it hurts more when I breathe, so my docs suspect it's related to lungs/trachea. At first we thought maybe it was caused by GERD (which I have) but I've done a lot to improve the GERD and feel a lot better in general but don't feel any different with the chest pain. Now my doc is talking about possible chondritis, but I don't have EDS, just POTS and a few general dysautonomia problems that haven't really been pinned down (including the chest pain). So I have three main questions. First, *is* costochondritis related to POTS at all, or only other ANS problems like EDS? And secondly, for those of you who have it, how do you deal with it and does anything help with the pain??? When I take massive amounts of anti-inflammatories it seems to help some, but I don't want to damage my liver by taking them every single day. I've had this problem for almost two years so I don't think it's going to go away on it's own. Lastly, how could my doctor diagnose this for sure? She mentioned I could have an x-ray, but that it might be inconclusive, and she seems reluctant to do it because it's expensive and I have bad health insurance. Are there any tests that are fairly conclusive, and would be worth my money so to speak? Any advice would be greatly appreciated!! jump

I know that if a person has a lot of caffeine on an empty stomach they will get temporary postural tachycardia -- meaning when they stand up their HR will soar, and when they sit it goes back down. This lasts until the person either metabolizes some food or until the caffeine leaves the body. I would agree that this isn't the same as the entire syndrome of POTS (a constellation of symptoms) but I could see where someone might refer to it as a "temporary POTS." Perhaps the volleyball player hadn't had much to eat since she was working out (I know I can't eat a lot before exercise without getting a stomach ache). The combination of low food, high energy expenditure, and loads of caffeine could make her posturally tachy temporarily.

I began noticing POTS symptoms after I had been tall & thin for a few years (after a highschool growth spurt). I was 5'7" and about 120 lbs for a long time, and a size 0. Since being diagnosed, I've gained some weight (from the meds? from getting older? who knows!) and sometimes I wonder if weighing more helps reduce my symptoms. I'm taking meds for the tachycardia, but I don't take anything that might help with retaining fluids -- and I've noticed that since I've gained weight it's much, much easier for me to stay hydrated. When I was a size 0, I had to drink literally 7 or 8 liters of water a day. Now I can manage with just 3 or 4. jump