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Steph

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  1. 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.
  2. 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.
  3. 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.
  4. 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?
  5. 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.
  6. 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.
  7. 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.
  8. 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)
  9. 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.
  10. 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!
  11. 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!
  12. 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.
  13. 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.)
  14. 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.
  15. 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.
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