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I hope these options aren't too confusing! I'm just curious to know how POTS affects people's lives in kind of the average, day-to-day ways as opposed to the bad days.

I've also always been very emotional and have seen no change with developing POTS. When I'm over-tired, I cry more easily, so I guess in a round-about way POTS sets me up for more crying jags since it wears me out... but other things make me tired too, and if I stay rested my emotions are pretty even. jump

Flying makes me really sick!! If at all possible, DON'T fly in the morning. I used to take early-morning flights because they're cheaper, but I'd be so sick for three or four days afterwards it didn't even make saving money worth it. Fly as late in the day as you can. I drink a TON - at least 8 oz of water for every hour I fly on top of the 3+ liters I drink anyway. And I eat a lot of salt before and during flight. Part of it, though, is I just accept that on the day I fly and probably the day after I'm pretty much useless. I don't try to do long-weekend trips anymore because I feel so sick it isn't worth it. jump

I too have an increase in symptoms at high altitudes. I live at about 400 ft, and I notice a big change in how I feel at about 4,000 ft. I agree with what others have said - try the conference, just plan ahead. Get there a few days early, drink a lot, rest a lot, and make sure you have a chair to sit in when you present! Also, I've noticed that for me the biggest "problem" symptom at high altitudes is tachycardia - and my doc told me if I'm traveling to some place high it's ok to take more of my beta blocker for a few days. If you know which symptoms are worse when you're at a high altitude (migraine, heart rate) maybe discuss with your doctor taking a little more of the corresponding medication while you are in Denver. Good luck! jump

Since I had a surge in POTS symptoms this year I've also had inexplicable weight gain. I haven't changed my eating habits and I eat fairly minimally, and although exercise is sometimes dicey, I've actually been able to exercise MORE in the past four months or so (since starting medication) than I was able to before - yet my weight continues to creep up. I do take a beta blocker which can sometimes cause weight gain, but I started gaining weight when my POTS symptoms increased, which was months before I started taking the BB - and I take a very low dose. I assumed this weight gain was unrelated to POTS and that I just needed to somehow eat even less and exercise even more, but then I read that POTS can be triggered by poor adrenal function, and I know adrenal fatigue can cause weight gain... anyway, does anyone know anything about this? Does ANS affect metabolism at all, or are they unrelated creatures? Thanks! jump

You know, I'm someone who has a lot of "weird" coincidences throughout my life. I'll often dream of someone I haven't seen in a long time and then literally the next morning they'll call me out of the blue. I've had horrible nightmares that people I care about are in danger and then very shortly thereafter they get bad news. I've been driving along in the car singing a song to myself, only to turn on the radio and have the exact same song come on in the exact phrase I was singing. Over time, I've come to realize that these "weird coincidences" are just that -- coincidences. While I can imagine that your experience, your nightmare and then turning on the TV to find your nightmare mirrored, would be very very scary. But if it happened to me, I personally wouldn't believe it was anything more than a creepy coincidence. If you're worried though, maybe you'd feel better if you talked to someone in real time about it? You mentioned you're catholic - perhaps it would help you to talk to your priest about your worries? Or another close mentor-like figure? Hope you feel more at ease soon, jump

I take metoprolol ER (the same as Toprol XL, or extended release) at night before I go to bed. That way, it's already in my system when I wake up in the morning and the extended-release keeps in the same rate for 24 hours so I don't experience a crash. The only time I sometimes notice it wearing off it at night when I'm due for another dose, but in the evening my symptoms are usually their mildest so it's not too hard to cope with - plus, if I'm in bed, the tachycardia's not much of an issue! If you've had good luck with metoprolol so far you might want to try the extended release. jump

I'm really glad you pointed out these clips! Part of me really wants to send the informational one to my family and friends, but a lot of the people in my life are really resistant to that sort of thing because they think I'm making a big deal out of nothing. Whenever I show them an article or something about someone with POTS they say, "Well, you aren't that sick, this isn't like you at all." And it's true, I'm lucky, I'm not bed-ridden and have not had to spend a lot of time in the hospital. But I do feel sick every day, kind of like always having the flu - I just don't talk about it much because what's the point? The symptoms are always there. If I told my friends and family about it every time I was feeling crappy it's all we'd ever talk about!! But they seem reluctant to believe that I even feel sick at all, and when I try to give them information, it almost makes it worse, because they insist that I'm nothing like other people with this syndrome. jump

I can't shed any light on the matter, but did want to chime in and say this has been a problem for me, too. In fact, the excessive thirst and the constant need to pee were my first complaints to the doctor; the funny heart rates didn't bother me in my day-to-day life nearly as much as the thirst. The thirst for me is actually painful at times, and I can never sleep more than an hour or two at time because I need to wake up and use the bathroom. Originally, a nurse-practitioner I was seeing said she thought, just based on my input/output, that I must have DI. But when I saw my PCP about it, she said there was no way I could have DI because it's so rare. No one ever offered me any tests at all, even though routine urine tests always come back with a low spec gravity. When I was diagnosed with POTS I felt really relieved that polyuria and polydypsia are both symptoms, because I felt like, thank god, I'm not crazy after all!! People used to get angry with me that I NEEDED to drink so much and use the bathroom so often (doesn't make car trips fun!) but now that I have a reason for it - albeit an unclear one - my friends and family are much kinder about it. jump

Carly, I can completely relate!!! Because I'm young and appear healthy my PCP dismissed my complaints as me "just being a worrier" for a very long time. My cardio also told me that because my echo was normal there is no reason to seek further treatment. I have gone back a few times to unhelpful/unknowledgeable doctors, although at the moment I am trying to find someone more knowledgeable. For me, I kept going back to an unhelpful PCP because when she would keep telling me that it was "normal" to have the symptoms I was having, I assumed she was right. I would go home and say, "well, I guess this is just normal...." It was only when my friends and family were really concerned for me and my symptoms were affecting my daily life in very noticeable ways that it occurred to me that maybe my doc was wrong. Then I tried another doctor who knew nothing about POTS with the home that he'd be open to my educating him - which he was, but when it came to trying to find treatments/medications, he just kind of said there's nothing life-threatening going on so I should just go home and suck it up. Which I think amounts to him simply not knowing what to do to help me. There simply don't seem to be too many doctors out there who know very much about this, and certainly when you live in a rural area like I do, your options are limited. Like others have said, my symptoms with the medication I've been able to wrangle out of my doctors are controlled enough that I can get by in my life. And because I had POTS untreated for so long, I kind of got used to most of the symptoms anyway. I do have moments when I long for some more relief from what I deal with day-to-day, but until I find a different doctor I'm not sure I'm going to get that relief. jump

I have a lot of different heart symptoms. When I'm standing, I get the racing, fluttering heart and a strong feeling of pressure or weight on my chest. When I'm sitting or lying down, I get bradycardia, an irregular heart beat, a sensation like my heart is flopping and lurching in my chest, pounding, and the same weight/intense pressure that I get when I stand. I frenquently feel "uncomfortable" in my chest but can't really describe it exactly - it's an odd, internal discomfort, not pain like a shooting pain, but definitely really not comfortable. In my case, all of these symptoms were deemed abnormal but not harmful by my doctors. Hope your appointment goes well! jump

I feel best when I sleep 10 hours a night, although I can get by on 9. I usually have one day a week where I'm so tired I have to sleep pretty much most of the day (10 hours at night and then a 5 hour "nap" or something). If I'm not working a lot I don't need that big "sleep day." Even in the perfectly healthy population, lots of people need more than the suggested 8 hours of sleep. I know healthy people who need 10 or 11 hours a night to feel their best. If getting 11 hours of sleep doesn't interfere with your life - that is, if it doesn't bother you or keep you from doing things you like, etc - it's not necessarily a problem. Just like some people need less than 8, some people need more -- and I think people with dysaut often get easily fatigued, so it would make sense that you might need more than your average person. jump

I drink 4-5 liters of water and/or gatorade a day because I'm painfully thirsty all the time. Also, I drink a lot because I do get dehydrated more easily than normal people, I suspect because my body doesn't regulate the absorption of fluids very well. Even slight dehydration makes my POTS symptoms much much worse. For example, I think most healthy people could go half a day or so without drinking anything and not really feel any differently. If I go more than an hour without anything to drink, my hr skyrockets and my POTS symptoms are much more dramatic than when I am well-hydrated. I have had low potassium at times and had urine tests with a low spec gravity, but I don't always have these problems, and these problems don't seem to necessarily be related to anything. For example, when I had low K, I didn't feel any differently than when my K is normal, and I wasn't doing anything differently. I know that for me, I don't have OH or hypovalomia, so I don't need to salt-load. I also have borderline high BP all the time, although now that I'm on BBs my BP is lower. Before being diagnosed, I didn't eat hardly any salt (I don't really like it) and I had a lot of trouble with fluids just flushing right out of my system and not being absorbed. Now I try to eat a normal amount of salt to help me retain more fluid, but frankly it's still a big problem for me. I can't sleep for more than two hours at a time because I'm so thirsty. I think some lifestyle changes for POTS people depend a little bit on who you are and your particular constellation of symptoms. If you have POTS but not OH, you might not need to salt-load as much as someone with both. If you're not thirsty all the time, it might be less important to push fluids. You can decide these things with your doctor. jump

Also, some people only have symptoms (or their symptoms are worse) in the morning. If your daughter's appointment was in the afternoon, this could have influenced what the doctor observed. That being said, sometimes people can get heart-racing and heart beat irregularities because of other illnesses, and these do resolve themselves when the illness is over. A good friend of mine recently had pneumonia, and her hr skyrocketed upon standing or any exertion -- but now that her pneumonia is resolved, her hr is normal again. If your daughter was sick, maybe her funny heart rate was because of the primary illness? good luck, and I hope you and your daughter find an answer soon! jump

Welcome Cam! Sorry to hear you've been through so much! It's nice of you to post your story, though - I always find it helpful to read others' experiences. It sounds like you have POTS but not OH, is that so? That's the case for me, and I had a very hard time getting diagnosed, since my bp didn't drop during table-tilts. I'm glad you found a doctor who knows what she is doing!! I've visited Colorado (eagle) a few times and I'm jealous that you live out there - what a beautiful place!! jump

I started taking b-complex at the same time that I started other medications, and noticed a significant lessening of my symptoms. I assumed this was because of the prescribed meds, and when I ran out of vitamins I just didn't take them for about two weeks - and my symptoms got much worse!! So now I'm religious about taking it. I take a regular b-complex (Wild Harvest brand); it's 50 mg total with 50 mcg of b-12. I have no negative side effects (except for the neon yellow urine!), but I don't really have an unusual drug sensitivity. I do always take it with food, which might help. Does anyone know - does the neon-yellow urine mean my body isn't absorbing all the vitamins? And if so, is there a better way to take it (maybe take half a pill twice a day?) in order to absorb it better? I also know there is herbal tea with b-12 only. If you have trouble tolerating it in pill form, maybe try the tea? jump

I don't take any herbal supplements, but I take OTC magnesium and B-complex and they help immensely. When I don't take them my symptoms are much, much worse - sometimes I think they help me more than the prescribed meds!! jump

Also, you could try some non-medical remedies in the moment to bring your hr up. Sometimes it's a pain to do this sort of thing in the middle of the night, but I find it helps me sleep better afterward. I find taking a hot shower, drinking hot water, putting on a sweatshirt and eating something with salt all help. When I get bradycardia in the afternoon I have a small cup of coffee or 2 oz of red wine. Also, although a person it technically bradycardic under 50 or 60 bpm (I forget which), people feel symptoms at different points. For example, I don't feel anything unless I get below 45 or 40, but some people start feeling unwell at 58 or 59. Your hr naturally slows down considerably at night (circadian rhythms) so it's not unusual for brady sypmtoms to be worse at night. For example, it's fairly common for ppl's hr to get in the 30's while they sleep. It's only worth paying attention to if you have bad side-effects (which it sounds like you do) but not normally something to worry about if you have no side effects. I hope you find things that help! It's no fun being woken up in the middle of the night.... jump

When I was diagnosed, my doctor just kept calling this by its long name (postural orthostatic tachycardia syndrome) and talked about autonomic dysfunction. As a result, I've only ever seen POTS and OI and NCS written down. Do people say POTS as if it's a word (like rhymes with spots?) Or are you supposed to say it P-O-T-S like initials? Same thing with NCS and OI - are those just shorthands used on this website, or if I said N-C-S to a doctor (like initials) would they know what I was talking about? I know this is a silly question, but I'm gearing up to call some new doctors and I don't want to sound silly! And saying postural orthostatic tachycardia syndrome is such a mouthful....

I'm sorry you're having a hard time with doctors! I think that you're probably right and should be continuing to pursue the cause of this mysterious weight loss with your doctor. That's a lot of weight to lose for no reason. POTS can sometimes be caused by dramatic weight loss, so maybe that's how things got started? Regardless, that sounds like a serious symptom to ignore. good luck, jump

I've never found a way to talk about chronic illness that's 100% foolproof, but what usually works best for me is to find a way to work it into the conversation casually really early in the relationship. For example, on one of my first dates with my current BF, he asked if I'd like to go hiking in this area that, as luck would have it, is pretty flat. I said I'd love to, but added that I might have to stop and take breaks because I have a chronic illness. He didn't ask anything further and didn't seem to mind that I had to stop and take breaks. After we had been dating for a month or so, when I was sitting taking one of my famous breaks, he asked me what this illness was and I told him more about it. He seemed really interested, so I gave him some websites to look at. Over time it became comfortable to talk to him about it on a regular basis, when it was pertinent. For me, I usually wait to give someone a lot of information until they express some interest - whether its a friend or someone I'm dating. Some of my close friends for example don't even know that much about POTS and my struggles with it - they know I have a condition and that sometimes I have to sit down and that I always drink a ton, but they don't know anything else, none of the day-to-day stuff or anything like that. And I'm ok with that - I figure, if they are interested, they'll ask me sometime. In the beginning, when I was first diagnosed, I felt a little hurt that some of my friends weren't more interested - but then I realized that chronic illness is really hard to understand if you have no first-hand experience with it, and they probably just don't realize how much it affects me. I try to be honest with them - like if I'm having a rough day, I'll say, "I'm sorry, I can't go for a walk with you, my POTS is really bad today," but I also realize that if they don't want to know the "gorey details," it's not because they don't care about me, it's just that it's really different for them to think about. With a potential life-partner, of course you want them to know a lot about your condition and help you in your quest for health. But I think that's the sort of thing that can unfold with time. If you start dating someone and they seem really disinterested in your health concerns or it seems like they just "don't get it" at first, it doesn't necessarily mean they're not worth dating. It might be that their education around your illness and how best to support you takes a while. My bf, for example, is still learning a lot about how to support me, and we've been together two years. I try to be patient with him because I have a lot of other supportive people in my life, so I can afford to be patient, and because I know that dealing with something like this is new to him - he's never known anyone with a chronic illness before. Good luck and I'm glad you posted this - it's a great question! jump

My heart beat is very irregular sometimes, to the point where I have trouble breathing. My cardiologist also tells me this is fine. I guess an irregular beat isn't so much a problem in and of itself, it's just a problem if it's caused by something sinister like heart disease. I know it's uncomfortable, but if you've had it checked out, it's probably ok to trust your doctor. jump

My cardiologist told me that BBs make the heart rate and bp more stable - so it may be a few points lower on average, but you don't get the huge rises and drops that one experiences not on a BB. My understanding is that it is often the sudden drop in bp that makes people feel unwell, as opposed to having low bp in general.

Having small sips of warm (body-temperature) or hot water is easier for the body to absorb than gulping lots of cold water. You may want to try that. Also, I drink coconut juice and it seems to really help. They sell it at Shaws and WholeFoods. hope you feel better soon! jump

In waterbaby's thread about B1, she mentions that when she started taking thiamine she felt much worse for a short period before feeling better. Something about the body adjusting from an imbalance - you may want to read it. jump