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  1. Forgot to say that when I first went to my celiac support group meeting and asked if others had ataxia, orthostatic problems, etc most had no idea what I was talking about. BUT once I described the symptoms many could relate. I'm assuming they simply got a pat on the head by their doctors vs a proper dx for their symptoms. Most were probably told that they're just getting older or anxious. Haha tc ... d
  2. I started taking melatonin, 5htp, Benadryl and either Theanine or Klonopin 5-6 years ago because I hadn't slept well in almost 20 years as the result of accute onset me/cfs with numerous neuro problems. I've since learned that my neuro diagnosises are common in MS. This combo worked great for sleep but caused my OI to become more severe. I was having days where I could barely stand up without getting POTS. I made a huge mistake taking these every nite for all those years. I'm still having some days / hours where my OI is bothersome but the improvement is remarkable. I suspect part / most of my OI problems now are because I still need Klonopin for nocturnal myoclonus. And still take 1/4 tsp Benadryl for allergies. I know my OI is better without anything that makes me drowsy so I'm working on eliminating them somehow. Just wanted to share for those taking anything that makes you drowsy. tc ... d ps. most of my improvements since 2005 are from watching my diet. I follow a mostly paleo / wahls / low oxalate diet. I have the dq2 gene tho so gluten was never ok for me.
  3. Dr Hadjivassilou should have the answers to your questions. I had it from 1990 - 2006. I had sudden onset me/cfs with numerous neuro symptoms back in 1990 but most vanished 1-2 years post gf diet. I get it again but much milder with gluten exposure.
  4. Glucose tolerance test. Checking for insulin can show hyperinsulinemia.
  5. Good to hear you're feeling better. I'm always fighting utis but mine appear to be from oxalates. I've cut back on these again and am having less urinary symptoms. I just found out that I was getting stones in 2008 but suspect the problem started sooner. Recent studies are showing oxalate problems are common for leaky gut. Fun fun fun .. just an fyi on the cipro. It's a flouroquinonlone and these can cause severe reactions in some people. I was given Levafloxin and after about 4 days I noticed slight shoulder pain but just ignored it. My shoulders and knees went out in Jan 2013 and I'm still dealing with weakness and imobility. Hope you feel better soon. tc .. d
  6. I have to eat sonething every 2 hours too but I'm a celiac so my digestion is hosed. I was dx with hyperinsulinemia via a gtt plus glucose. My bg never gets below 60s, but I feel and look horrible at that number. I read that diabetics are told to eat something sweet prior to exercising and found that if I eat sonething sweet every 20 minutes when active I function much better. It's made a huge difference in taking long walks, doing my laundry, etc. tc .. d
  7. Chronic constipation, hard stools, unless I take magnesium citrate everyday. Too much is as bad as too little so I'm always playing with this. Nothing works as well tho and I've tried it all. Digestive enzymes, more fiber, more raw fruits and veggies, coffee etc etc. Other digestive symptoms resolved via diet changes.From what I've heard explosive diarrhea is common for gluten intolerance.
  8. Magnesium citrate helps me with this. I use Natural Calm and ad a pinch of sea salt. I can't have a normal non painful bm unless I take this so I figured it has something to do with chronic dehydration. I took muscle relaxers until I realized they were making my eyes lazy. My right eye esp would wander. Funny not so funny story. I saw a neuro optomologist for this problem and he was clueless. Got off meds and problem was gone. also, fwiw, certain foods are known to cause pain. Tomatoes affect me but not sure what else. Magnesium helps this reaction tho. fwiw Doctors Best chelated mag has a good rep but never helped my bms. tc ... d
  9. Sorry to hear you're sad on your birthday. I didn't see anyone mention eliminating toxins. Many of us find that we have food intolerances, esp gluten, dairy, corn, soy and chemicals and avoiding those should make you feel better. You may be intolerant of something I didn't list too tho. These are just the common intolerances. I've found that 5htp helps me avoid being sad. Exercise is great too if you're able. fwiw, I have a daughter about your age who had multiple medical problems that are gone via diet and exercise. Imho, it's worth a shot. tc ... d
  10. Add me to the bad girls club. ; ) I've probably only smoked 1 pack of cigs in my life but I experimented with both cigarettes and nicotine lozengers recently and found that cigs were more effective at calming me while at the same time made my thinking clearer. The losengers made me jittery but also improved my thinking. I stopped because I already have lung scarring and noticed that I sweat profusely after smoking. I didn't try the gum, patch or chewing it. The coffee sozo makes me less jittery than any other coffee I'd ever tried but caffeine pills work better and don't make me jittery. I have to take extra sleep meds and supplements if i use caffeine but I don't mind. I've only tried the Leader brand caffeine pills and I break them into quarters.
  11. yes as long as I haven't eaten any of the foods that I'm intolerant of or taken too much of any med that affects my brain (benadryl, klonopin, or pain med) and I'm not hungry or suffering from low blood sugar. it takes me a solid hour to recover from a pots episode tho. I have pots episodes everytime I'm upright for too long. For me that's typically 20 - 30 minutes of standing. Doing the dishes or cooking nails me. Most of my symptoms were from intolerances and allergies.
  12. Sorry to hear you're going thru a rough patch. Me too. My pity part consisted of eating waay too much gf junk food and I'm paying for that now too. Lol. I took up smoking, one a day, several months ago to see if nicotine would help my oi. It didn't but it made my thinking clearer. I could multitask again. I noticed an sharp increase in sweating and assume it was my body detoxing all those chemicals. This stopped as soon as I stopped smoking. Nicotine lozengers didn't work as well and caused digestive issues at least 1/2 the time. I didn't notice a hr increase but I had more energy. My bp and hr run on the low side. Hope you feel better soon. D
  13. sorry you had to go through such a traumatic experience. I'm not sure what to think about how they decided to treat you and that you were stable enough to come home. Since you changed your meds tho maybe you had a bad reaction. as far as weight loss tho maybe you could use smoothies made with organic rice protein powder. I make these everytime I'm having digestive problems now. Bananas and flax meal add calories. I use 3 servings per smoothie for extra protein. Homemade meat broths, esp chicken, may help too. I typically add a few veggies and a little overcooked soft meat for soup. Hope you feel better soon. D
  14. I do this if I've had too much caffeine or certain b supplements. It doesn't always happen right away and so it was hard for me to figure this out. I used to feel like i was buzzing non stop until i stopped eating gluten. On the celiac dot com board they called this buzzing and it was common. Mine stopped within the first 24 hrs of being gf.
  15. What my Dr called the elimination diet wasn't enough for me. It included wheat but didn't include gluten and that is my biggest offender. I think the list of improvements is in my signature. I have the dq2 celiac gene tho. I'd say it took me about 2 years of experimenting to discover all my food intolerances. I stayed on a restrictive diet then experimented with one food to see how i reacted. Discovering that bacon and tomatoes triggered my fm pain helped. Also learning that high oxalate foods trigger pelvic pain helped. I'd been living with pain for so long being without it was like a miracle. I've been watching my food for 8 years now and still get most of the same symptoms i had. Taking mast cell meds help but I'd be asleep all the time if i took all the meds i need to control my reactions. So definitely a huge difference for me. tc ... d
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