Steph

I'm also doing an exercise program following the Levine study. I find it necessary to have a rest day after every 2 workout days in order to prevent a total collapse. I do Mon, Tues, Thurs, Fri. I've been going for about three months now. I've definitely noticed an improvement in how hard & how long I can exercise (aka my general fitness), but my symptoms haven't improved. Actually things are worse since the exercise takes up all the energy I have and leaves me reeling. Still, doc said six months, so six months I'll do.

My advice, from my own experience: go cold turkey. If you go the weaning off route, it's too easy to cheat and keep having little bits of gluten here and there, which forms bad habits. If your son has celiac disease, as opposed to gluten intolerance, even minute amount of gluten (like, think a bread crumb from a shared peanut butter jar) can cause serious problems - and it can take up to three months for the digestive system to recover from a 'special treat just this once.' It's important to stress how important it is not to have ANY gluten at all. (In this vein, be sure to have some yummy gluten-free treats around, or when he wants a treat, he'll go for the familiar. Glutino brand is generally gross, but their wafer-style cookies are amazing.) It's actually very easy to switch to gluten-free at home if you cook; the difficulty is in eating out (whether fancy restaurants or fast-food), visiting friends/family, and travelling. Prepackaged foods, whether chips, bbq sauces, frozen foods, soup stocks, etc, should be avoided unless you're quite certain about them. It seems intimidating to open up your fridge and start tossing out everything with gluten in it - and most things will have - but once you've found suitable replacements for the things you use the most, you won't even have to think about it. And after all, fresh fruits/veggies and meats don't have gluten. Hidden dangers: spice blends, yogurt, oats (GF themselves, but processed with wheat) other brands/flavours of a 'safe' product, anything without a label. Really, once you've dumped out the old stuff and bought new things, it's really easy as long as you prepare things yourself. Want spaghetti for dinner? Use a GF pasta, available at most grocery stores (although you may have to try a few brands before you find one you like.) Stews, sauces, gravies, etc? thicken with cornstarch or a gluten free flour mix instead. Making a fancy dinner of steak, potatoes, and veggies? well, make a fancy dinner of steak, potatoes, and veggies. I eventually learned I was gluten intolerant, not a celiac, so I can afford to take a few risks. I never eat anything with gluten actually in it, but I don't have to be completely neurotic about cross-contamination when I'm out. My own kitchen is completely gluten-free except for the cat food.

Can't say I think these results will be terribly accurate in terms of actual demographics of POTS/Dysautonomia. It'll only reflect the demos of the forum users, which is restricted by language, access to medicine, technological fluency/comfort, and access to a computer and internet. On top of that, exactly half of the specified locations are parts of the US, with the rest of the planet being lumped together. I'm not trying to be offensive . . . I just think it's important that you recognize the flaws of a survey like this and do not give undue weight to the results.

I'm going in to a consultation about breast reduction surgery, and I don't want to scare the doctors off, but I don't want to risk my health either. What POTS-related issues should I bring up? I read something about getting an arterial line(?) when going under general aesthetic, but is there anything else in particular I should talk about/insist on?

NUUN tablets are inexpensive, easy to carry, and come in a variety of flavours. You just add them to a glass or bottle of water and let them dissolve. They fizz like alka seltzer tablets, so you don't need to stir, which is nice.

I've definitely gained a fair amount of weight since this started, about 25 pounds, but considering the loss of muscle mass (I used to be fairly strong, now I'm a noodle), it's more likely about 40 pounds of fat gained, and 15 pounds of muscle lost. After about a year, when it started to seriously impact my life, I started to make eating healthy food a priority, and I've managed to keep that up - but the problem is, as I got worse and more sedentary, not only did I burn less calories, but I started eating a lot more. (I don't have the stomach problems many of you suffer for, so no loss of appetite.) Partly because eating helps keep my energy up so I can get things done, and partly because when I'm sitting around my apartment all day, I get bored. So I eat. It's a bad habit I've always had, but when I was healthy I was able to do things to distract me.

My pee problems come at night. During the day, I may pee more often than someone who drinks less water does, but that's it - I pee and then I'm good. But a few months ago, troubles began! [insert cheesy sci-fi music FX] At night, when I'm desperately trying to go to sleep (I have insomnia), I get an urgent need to pee. I go to the bathroom . . . and pee for approximately half a second. 10 minutes later, it repeats. Again and again and again. Not only does the constant up-down-up-down make me feel super crappy, but it makes getting to sleep even harder.

Yeah, I think the biggest problem once I've gotten used to cooking differently will be when I visit family. My grandma is far too old to be expected to learn to cook differently, but she's one of those grandmas who ply you with food (really really GOOD food!) and refuses to take no for an answer. The big family dinners like easter, thanksgiving, xmas, eg, are huge affairs where everyone brings a dish or two, and it's considered very rude if you don't at least take a small bit of everything. You can usually get away with not having your one most hated item, but that's about it. And then there's the problem of cross-contamination, with people using the same tongs to grab buns and meat slices and veggies. But for my everyday home life, I've already found a few new things that work well. My rice cooker will make rice porridge, which is actually easier than oatmeal or cream of wheat, since I just set it and let it run. It tastes very different, but is very good with dried cranberries cooked in and a bit of brown sugar mixed in to the bowl. I have salted rice crackers that are VERY nummy. And just yesterday I made up a fresh batch of stew using my GF flour. Making stew always wipes me out and leaves me useless the day after, but I make a lot of it and freeze it in baggies. I even found a way to have Kraft Dinner! I use brown rice noodles and Cracker Barrel Grated Cheese (right next to those green containers of Kraft Parmesan Cheese)

Just last monday I visited a naturopath and got tested for celiac disease. (confirmed) I spend tues-sat eating as much of my opened/perishible gluteny stuff as possible, then I threw the rest out and took the unopened non-perishables to the food bank drop off at my grocery store. My mum drove in from out of town and helped me out with that and buying gluten-free food items from various places around town. So I've only been gluten-free for a few days now, but I'm really hoping that it will help with my symptoms. It could even be the cause of my dysautonomia, I guess, since mine's idiopathic. The naturopath said I have to be 100% gluten free for three months to clear it out and see if it's what's causing all my problems (as opposed to just my relatively minor digestive issues), so no cheating for me. But GF flour is soooooo expensive! And there's gluten in just about everything easy-to-make, like canned soups or porridge, and in half the ingredients I regularly cook with, like soy sauce! (I got wheat-free tamari, but it's $7 for a tiny little bottle.) And so many things that don't even have gluten normally get contaminated with it in processing. *sigh* Well, I'm sure I'll get used to it soon enough, and it'll all be worthwhile if it helps. I'd certainly rather eat differently for the rest of my life than take a bunch of meds and still feel crappy.

Have you tried Nuun tablets?I've found them to be cheap, effective, convenient, and less awful-tasting than sports drinks. A benefit of Nuun over juice or gatorade is the lack of sugar. I don't need the tooth decay or the rush!

My newest cardio didn't have anything new to try, but he suggested combining Midodrine and Florinef. (When I tried midodrine before, a year or two ago, my then-cardio had me go off the florinef first.) He said that I'd have to get monthly eye tests (at least for the first while) to check for warning signs of glaucoma, and also check my BP regularly. Can anyone share their experiences with this combination? Any bad experiences with either of the two risk factors my doc mentioned, or any others that he might not have? Any advise would be appreciated. I'll probably start taking the midodrine in a few days, since I want to have a bit of a baseline for my bp first. Thanks!

These sound interesting. How do they function on stairs? Do you feel safe wearing them going up & down steps? I ask because my university (where I do pretty much all my walking and standing) has lots of staircases.

Yeah, I've got bricks under the feet of my bed. I think my problem's more to do with pressure than with being out of alignment. I think I'll probably de-tilt my bed the next time my dad comes through town (it's too heavy for mw to lift by myself.)

Since my doctor recommended tilting my bed, I often wake with numbness and pain down the side I'm laying on. Even when I'm awake and change positions a lot, this is often the case. Help? I spend most of every day in bed.

I think you'll have to continue with the salt - my doctor said the florinef was to help you retain salt, and kept me on a high intake. Sorry.

I'm pretty lucky - it seems like I got a dx much more quickly than most of you, although it felt like forever at the time. I think, in retrospect, that my symptoms started sometime in late summer two years ago, although I didn't realize it until after I got a dx and started to connect the symptoms. I "passed out" or "fell down" a few times in late 07/early 08, but I dismissed it - "I must have stood up to quickly," "I guess I haven't eaten enough/had enough water today," etc. It wasn't until early spring 08 when it happened three times in one day (once while making breakfast, twice at work) and I poured boiling hot water over my hand that I figured I should go to the ER. Even then, I thought it was probably just a temporary thing, like low blood sugar or something. Blood tests: clean. Multiple types of wires-taped-to-body tests: clean X-ray: clean 24-hr holter moniter test: some abnormalities. Problem? At this point I'd recently moved to go to university and I had no GP. My city has a serious shortage of docs willing to take on new patients. So no one was looking at my test results or following up on what was wrong with me. After that first day of suckyness, everything started happening at once. I went to stay with my parents for the summer and got my old GP to see me. He ordered some tests, and referred me to a cardiologist. 4 months later, his office calls to make an appointment - for 3 months down the line. Late 2008: I go to the cardiologist. He orders an ultrasound, and in the meantime advises me to eat more salt. Says, "many young women are just "fainters," and we don't really understand why, but in most cases, drinking more water & having more salt will fix the problem." (paraphrased) Around this time I finally find a GP willing to take me on. Office never calls me back for follow-up on the ultrasound like they said. Early February 09, I call them and they say it's isn't necessary if I'm no longer experiencing symptoms. What the h***? Would I be calling for a follow-up if I was all better? In the end, I get an appt. for 3 months down the line. Have some in-office tests. Cardiologist gives me a dx of dysautonomia. (he never specified what "kind" -- I was thinking NCS at first, but further research and the discovery that I go tachycardiac standing up has led me to suspect POTS.) Tells me that that's what he'd suspected when he saw me before, but now he was certain. starts me on florinef, makes a follow up appt. for 3 month's away. Says I can double dosage (.1 to .2) after 3 weeks if I wasn't getting any relief. No good at all. 3 weeks on, I double dosage and get some very mild relief. (suspect that might be placebo affect, but hey -- if it helps, it helps.) When I go to my GP to ask permission to do so, I get a blank stare and an "Oh, you're still feeling dizzy then, are you?" Well if you read the file the cardio sent you, you would have known that already. Next appt. rolls around. usual battery of pre-appt. tests. Cardio takes one look at me and says he can tell the Florinef isn't doing enough. Nice, for once, not to have to tell someone that I feel horrible. Stop florinef, begin midodrine. EVIL. Worse headaches, no relief from symptoms, and after maybe a month, palpitations like WOAH. GP ignores me the first time I talk to her about the latter, then I went back a week and a half later and she orders a ECG-type test done - and books it for the day before she leaves on a 3-week vacation. Subtle, much. In the intervening weeks, I get in contact with cardio's office, and get permission to drop the midodrine & resume the florinef. after about 3 days, the palpitations mostly disappear. That was maybe a month ago. My next cardio appt. is this wednesday, and he's going to start me on ssris, I think. Here's to hoping they help. Good news is that I've finally found a replacement for the GP of Horribleness. He may be just as awful as she was, but his office is only 3 buildings away from my apartment, so at least it will be easier to get there - no choosing between driving (don't feel safe for more than 10 minutes, really) or taking the bus and walking the last 15 minutes uphill and (recently) in the blazing heat. Now I just need to figure out a way to get off on the right foot with the new GP (I'm seeing him for the first time in two weeks) and convince him to take an active interest in my condition. Overall, I think I was very lucky that I got the cardio I did - he's competent, sympathetic while being professional, and while my time with him is always brief, he doesn't rush me out the door and he listens to what I have to say without butting in or contradicting me. On the down side, in addition to his own practice, he's also chief of the cardiology division at the hospital and works there 3 days a week, so it takes a while to get an appointment and he's only available at certain times.

1 cup of Nestle instant coffee is the cure my dad suggested - and unlike most useless "oh, well, you should really try this, it worked for so-and-so" type remedies people keep oh-so-helpfully throwing at me, it actually does help. 9/10 of my headaches are cured by the instant coffee, and it helps reduce the number of pills I take. Regular coffee doesn't seem to do it. (It's chemically different.) Of course, my headaches might not be the same as yours, and you might not be able to tolerate caffeine, so I don't know if that's any help to you.

I've recently switched back from Midodrine to taking Florinef again (midodrine didn't help, and gave me headaches; florinef helped a little bit, so my dr. told me I could go back on it until my next appt.), but I wasn't taking my bp before so I don't know if it's a new thing or not - neither of my doctors have told my specific numbers. I did what you said, and wow! I got some really weird results. Lying down 97/69, pulse 75 1 min standing 104/62, pulse 90 3 min standing 113/63, pulse 97 5 min standing 99/75, pulse 109 10 min standing 101/54, pulse 114 Weird . . . the pulse went up in a fairly "normal" way, but both my bps fluctuated oddly.

I recently started taking my blood pressure at the advice of my doctor (in the evening, first sitting down, then after standing for 10 minutes) and I've noticed something a bit strange. My diastolic blood pressure is almost always low, while my systolic bp is in the healthy range - sometimes it even goes up when I stand (though not always), while the diastolic ALWAYS goes down, although not always by a lot. IE: today's results: sitting: sys - 118 dia - 59 pulse - 77 standing: sys - 106 dia - 53 pulse - 119 (BTW, I used to have bp fairly close to the average 120/70 before I started getting sick.) Is this common? Does anyone know why this might be? I'm seeing my cardio on the 16th, but I often have a hard time focusing enough to ask him the questions I mean to when I'm there.

He sounds like a really terrible doctor, but I just thought I'd add in my 2 cents re: the childhood trauma thing. Is it possible he was referring to a physical trauma, not an emotional trauma? I can see how an injury in the right place or illnesses in childhood could cause something in our developing bodies to go wrong. I'm not saying that it would be the sole cause, but it could be a contributing factor. As for myself, I was a very sickly child, although I grew out of it to be a healthy pre-teen and teenager . . . and then became a sickly adult. Just thought I'd play devil's advocate, there, I'm not by any means saying that you should accept his crazy treatment plan without question. Maybe you could ask your regular cardiologist to explain how the course of medications is supposed to help, and why it's worth the risk - if he can't, then he won't be able to drop you for not taking it. Best of luck with working things out.

I drink both nuun and Gatorade, depending on what I'm doing. I'll drink nuun around the house, in bed, where ever, but I drink Gatorade when I'm at work, class, or the very rare occasion I'm out with friends - usually only one bottle, though. After that one bottle on work days, I alternate water or nuun with caffeinated beverages, it seems to raise my blood pressure and make me slightly less dizzy and fall over less. (I'm more NCS than POTS, though, so what works for me might not help you guys much.) I'm a student, so my only real job options are fast food or retail, and I'm going with fast food. I really wish I could have a job sitting down, but it's not really an option as a student. As if the dizzyness and confusion weren't bad enough, whenever I 'fall down,' everyone looks at me like I'm trying to get attention or get out of work early, even though I've never left early the whole time I've been there. The tubes say to put 1 tablet for 16oz water (~500ml), but I find many of the flavours more palatable if I break the tablet in half (they come with break-marks) and only use half for a ~500ml glass or bottle of water.

mkoven: Thanks! I couldn't find anything on google when I took a quick check, but I'll keep looking. potsgirl: I don't remember what my BP is (horrible memory for doctor's visits) but she said it was about the same as it was last time, and last time she said it was fairly low. I asked my cardiologist (who is, in contrast to my GP, very helpful, but lives hours away and I can only get an appt. every 3 months or so) about a TTT, but he said that there's a good chance of a false negative, so there wasn't much point - he'd treat me the same whether it was positive or negative, so all it'd do was make him some extra $. brianala: I think I'll go back in to see her if it doesn't go away in a few weeks. I'd rather go back in now, but I get the feeling she'd just brush me off again. About getting a new doctor, it's just too stressful and exhausting. It too me eight months last time. There aren't enough doctors in my city, so none of them are taking on new patients - I only managed to get in to her clinic because she takes on any patient that goes to my university.m I really wish I could, though. I'll try upping my salt/water intake even more, though - it's been pretty warm recently and maybe I'm losing more to sweat than usual, so it's a good suggestion.

(Delurking) About a week ago I started getting that feeling where you can always feel your pulse in your chest. I went to my GP the other day and she was all "I don't know why you're feeling what you're feeling . . . it's just a sensation, not every sensation is a medical problem." She took my BP and it was still super low. (she hasn't bothered to find anything out about dysautonomia and always rushes me out of the clinic as quickly as possible, but I can't take the stress of trying to find another one. It took me eight months the first time round.) Anyways, I was wondering if anyone else has experienced this? It's worst when I'm lying down (which is most of the time) but it's there when I'm standing or sitting, too. Currently on: Midodrine (about a month & a half), vitamin B, iron, and tylenol for the headaches the midodrine gives me.

Thanks everyone for your words of encouragement and advice! I don't know which 'kind' of dysautonomia I have, since my doctor didn't say, but I'll ask him next time I see him. (I suspect NCS based on what I've researched, but it's hard to know for sure.) I bought a pair of knee-high compression stockings, and they do seem to help me a bit - although I want to find some toeless pairs, so I don't have to worry about slipping on the kitchen floor.

Thank you! I've been going to karate twice a week, although I don't always make it when I'm having a 'bad' day. I find that the wide stances are stable enough that even if I'm very dizzy, I don't fall over - and the sensei is very understanding when I need to sit down from time to time. I usually feel quite well by the end of class and for a few hours after, as long as I haven't pushed myself too far. Of course, the next day I'm absolutely wretched, but I think it'll help in the long run. I'm still able to go to class on a reduced course load as long as I can get myself out of bed in the morning, which isn't always (I didn't go for an entire month and a half when I was in a bad swing) but I haven't worked in a year. I'm really hoping that I'll be able to go back soon because I hate having more student debt than necessary. I don't drive anymore so I take the bus, which stops right outside my apartment, and I sit with my feet up on an extra chair or crossed on my own and it's not too bad. I'm going to take your advice about looking at old topics for tips and so on, and I'm going down to MediChair since it apparently has higher-rated compression stockings (the drug stores only go up to 20mmHg) and buy a pair, see if they help any.