Dizzysillyak

I took it for 16 1/2 years for nocturnal myoclonus (nm) and now only take it if I have a seizure. I now take sun theanine as needed for nm. It's a natural alternative for klonopin. It took me 4 months to wean myself off of this. It never helped my oh or tachycardia. Tc .. D

Imho, One simple way to try this if you don't want to give up grains is to simply replace your current grain with gf ones. They're easy to find nowadays. At least in the us .. If you google gf, you'll get an idea what's available. The only problem is that some gf foods are tasteless so it helps to know which ones to avoid. You couldn't pay me to eat energy bread .. Or that pecan one .. Homemade gf foods will knock your socks off tho .. Lol .. We usually have homemade gf foods at My celiac support group mtgs. I heard udi's bread is good. Tinkyada brown rice pasta is supposed to be the best. Boar's head meats are gf but there are other ready to eat meats that are too. Many restaurants have gf options too. Chilis, outback, Olive garden, etc .. Tc .. D Ps. There isn't a standard for the amount of gluten allowed in "gf" foods in the us yet so these foods are typically cross contaminated. Some people can handle a little gluten and some can't.

Most of my me/cfs symptoms are gone now and most, if not all my neuro problems were from gluten. caffeine did a number to me too tho. It kept my heart and adrenals racing for hours .. From what I've read, The testing for celac disease isn't reliable.. Which is why the trend now is to go gf and see how you feel. "Theglutenfile" explains this and can give you an idea of what gluten can do .. My understanding is that the stool test is the most reliable. I believe it since even my gluten antibodies were normal after I'd gone gf but was eating quite a bit if those "gf" processed foods. And my stool test says I have antibodies everytime still .. There are quite a few of us here that are gf .. tc .. D

Integrative or functional doctors look at all chronic illnesses as having root causes, bacteria, viral, gut damage, parasites, nutritional deficiencies, etc etc etc .. Not as being a part of some other disease process. Imho, Until traditional medicine looks at our bodies this way, it's a waste of our time ... I'm new to medical research so it is shocking to me how finding root causes has been ignored. Tc .. D

Excellent post. I'd like to add toxic foods and chemicals to the list of causes. Imho, sadly, like me/cfs, pots is a wastebasket diagnosis. Tc .. D

Imho, chasing these chemicals isn't productive because traditional medicine never looks for root causes of why these are off. Root causes can include food intolerances via leaky gut, nutritional deficiencies due to gut damage, poor diet or genetics, toxins and pathogens like bacteria and parasites. Imho, Caffeine or other drugs, if possible and with dr's supervision, should be eliminated too. I took myself off klonopin ama but it's because my idiot doctor was insisting I had an anxiety problem and needed it for that. It turned out that getting rid of her helped my anxiety level .. Lol Because I had ataxia for 16 1/2 years, it's possible that brain damage may be causing oi. Integrative or functional medicine look for and treat causes. I still have oi but I'm working on it. Recently, h pylori increased my oi dramatically, so I'm looking more closely at pathogens. We're all different tho, so treatments may need to be individualized once the Common underlying problems have been addressed. Dr terry wahls and dr myhill explain this .. Tc .. D

Mine gets tight on it.s own. The hypoperfusion and vasoconstrition thread has a video on why this happens. I just bumped it .. Tc .. D

Thanks for posting this. This explains exactly what's happening in our bodies when we're upright. Imho, this should have a sticky. My other me/cfs symptoms (ataxia, constant brainfog, brain zaps, digestive problems, etc) are under control via diet (food intolerance, low carb, low glycemic and toxin elimination). It's only when I'm upright that I feel weak, fuzzy headed, sob, etc ... Just like he points out. I have a left bundle branch block, aka ticker problem, that my cardiologist says isn't bad enough to cause my oi. BUT .. I've never had a standing ekg. Do they even do this ? I was however booted off the treadmill but I was too sick to follow up and ask why .. I'm going to try supine exercises once again to see if it helps. I stopped the last time because I went to pt for assistance and ended up doing too much and in a chronic pem (post exertional malaise) state .. Tc .. D

Lol .. would walking on our hands work for now ?

Wouldn't someone who had cancer or any other active disease process react the same way ? Or anyone who's recently lost a loved one or undergone extreme stress ? Did they test these people too ? Since our bodies are chronically and constantly in a state of repair aka healing crisis because we can't stay supine 24/7, doesn't it make sense that we'd have anxiety / adrenal symptoms ? I was diagnosed with adrenal fatigue but imho this can be due to my oh and pots. My adrenals are always struggling when I'm upright. Tc .. D Eta .. I totally agree with sue on this ..

I used to do this all the time before giving up gluten. That felt like narcolepsy because my body would get limp, my brain would check out and I had no choice but to sleep. Then I figured out, via a gtt + insulin that I also did this when my glucose levels were changing. Not sure if it was the drop in glucose or increase in insulin. I was very nauseas during this test and notice that happens whenever I overdue sugar or high carb or high glycemic foods. But, I also discovered that eating chicken or turkey will make me a little sleepy the first time, And wipe me out all day if I have it more than once. I usually eat this for dinner only now. Fwiw .. I have a freind who's glucose level drops to 40 if she eats dairy. My reactions seem mild next to her's. It's just so weird how different foods affect us so differently .. Tc .. D

Here's more from that thread ... I'm a celiac so this is interesting ... I hope you dont mind ... In the body mass thread, I added that I've been gf for over 6 years now but still have to lay down after eating in order for my food to digest. If I don't lay down it feels like I have rocks in my gut and I get horrible brain fog. And that eating too much meat at one sitting makes this 10 x times worse ... also, my go to food was gluten up until it started causing constant diarhea and gut pain. I wonder why it calmed my digestive tract at one point and then literally tore it up later ... I'm a DQ2 (celiac gene) so I never should've eaten gluten. FYI ... my internet is a pain so I'm not sure how long I'll have the patience to deal with typing this today ...

This caught my attention today and I didn't want to lose it. It was in the body mass index poll thread ... Mack's Mom wrote ... ( I hope you don't mind me copying this). I'm going to google this in a second ... owie ... http://www.childrens...geS2002P39.html

Sorry but I should've included this on my last post. Imho, tho this info coud use a sticky. Thanks mack's mom .. Btw. I was finally diagnosed as a celiac in 2007, 17 years after becoming disabled and 17 months post gf. And despite being gf, I still have to lay down after I eat for my food to digest. I get horrible brain fog if I wait too long to lay down after eating. And I need to be totally supine. I can hear and feel all kinds of gurgling when I first lay down after eating. If I don't lay down after eating, it feels like I have rocks in my gut. I just discovered that the less meat I eat at one meal the better I feel tho. My bmi has always been low. I'm currently 5'5" and 120. I work at keeping my weight up by eating avocados, seeds and nuts.

Hi Sue- No, but great minds think alike , he's been tested for celiac many times. Through a careful history,Dr. Rowe at Hopkins discovered the milk protein hypersensitivity despite the fact that all testing & even biopsies show no true allergy. Could be the same with gluten???? I must say bread I'd be surprised if there was a problem as bread is Mack's "go-to" safe food. Even when he was very sick, a piece of baguette was sometimes all he would eat. Still wouldn't hurt to try a trial period without. Thanks for the thought. Julie Great info. I didn't realize they had correlated this gut damage to dysautonomia. I wonder if this explains mine. On the gluten as a go to food, that was my go to food too until I developed full blown celiac disease and it started causing diarhea and gut pain every time I ate it. I was 50 when that happened. My biopsy 17 months post gf still showed significant damage. I really think they need to find a better way of diagnosing gluten intolerance so they can catch it sooner. Meanwhile tho, imho, strict avoidance is the only way to tell. Tc .. D

I was married, had a 2 year old and 17 year old, working full time, did aerobics 3 times a week and any athletic activity I wanted to over the weekend. I won the president's physical fitness awards every year as a kid too. Looking back, I do remember getting winded and fuzzy thinking sometimes, but not normally, when I played tennis or ran too much. I stopped being able to exercise / run in jan 1990 when I got sick. My body gets confused after about 20 feet. I was able to simulate running whlie laying on my Back at pt last year. I used a machine but can't describe it. My pem became chronic so I had to stop pt.

Lieze, I'm a pretty strong person and I fell apart while this was happening to me too. Blood loss, esp if you can't seem to stop it is very scarey. Resting, drinking plenty of fluids, eating healthy and replenishing my iron worked but it took 6 weeks for me to feel human again. I couldn't go upstairs in my townhouse without sitting down every couple of stairs. Are you still drinking ensure or boost ? Fwiw, I never understood my ex gynos attitude while I was going thru this. I actually heard that I was probably wrong and that it only looked like a lot of blood in the toilet. Thankfully the er doc proved her wrong .. Sorry to rant .. My point was to try to comisserate with you .. I hope your doctor isn't like mine was and you're getting the emotional support you need now too. This is a big deal .. Tc .. D

Hi lieze .. Hugs . Sorry you've got it so rough right now. Try not to worry about your family now. You'll be out of this slump soon as your period is ending. I used to get sooooo weary during my menses so I think I understand this. Fwiw tho, I used to make up for my guilty feelings by doing something special for my dd. We had little impromtu parties, yard picnics, movie + popcorn, played games, etc. She really seemed to appreciate it. And it was cheap .. I recommended the buffalo meat because it's higher in iron than reg beef. But have you tried iron supplements ? I'm taking Country life easy iron now and I'm ok with it. It doesn't say it's corn free tho. You may want to call your doc about the meds. Did you look up lupron ? Since your goal is to stop the bleeding, if this worked, you may be able to skip the ablation .. Tc .. D

When i flared in sept my integrative doctor ordered several labs. Serum, urine and stool. I tried to convince her that it was just celiac disease again, but lucky for me she didn't buy it. Have you seen this type of doctor yet ? They run some traditional tests but they're looking for root causes. Fuzzy thinking can be a symptom of candida overgrowth. You may still be eating something you're intolerant of too. Chicken makes me fuzzy headed as does too much fruit. Imho, The stool test I had turned out to be the most telling. I had h pylori, parasites and gluten antibodies. So far I've treated once for h pylori, stopped all possible food sources of gluten cross contamination and will do the parasite treatment tomorrow. So far, my oh and pots haven't improved yet but I'm still hopeful. But then again with my history of brain damage, this may not help .. Come to think of it, I am feeling well enough to go to the beach now. : ) .. I'm sitting mostly, but I was definitely too weak to go before treating for h pylori. I'm in the process of rebuilding my gut ecology which will take a couple more weeks. I'd been going 3 - 10 times a week before getting h pylori. Hope you feel better soon .. D

Could damaged solute transporters as seen in celiac disease explain this ? Interesting idea on us having a set point for low blood volume .. most times when I've gotten a saline iv, my bladder filled quickly and i had to run to the ladies room. Did anyone else notice that ? Of course since I'm laying down my kidneys work better too tho. Btw, I was thinking that letting salt dissolve in the mouth is the equivalent of using a sublingual. I'm assuming that's why it works for me whereas eating or drinking salt doesn't. I've never had a headache from eating too much salt, but I get one from this if I go too fast. I don't know if the pressure I feel is from increased blood volume or constricted blood vessells. btw. This is great news .. I hope it leads to further improvements for you. Tc .. D

Sounds like your appt was productive. I'd recommend asking your doc or a pharmacist too about these meds. I've never had to avoid sulfites but I always ask my doc or the pharmacist if my meds are gf. I can look up some meds online to see if they're gf, but I don't know if sulfites can be researched that way. Is there a sulfite forum ? They might know this .. fwiw, i think the shot I got was lupron. Being peri menopausal, it worked great for me. Good luck with this .. D

Just out of curiosity, have you tried letting table salt slowly dissolve in your mouth. I've noticed a few times, but not always, that eating table salt, 500 to 1000 mg at one time can give me an energy boost. It normally takes me about ten minutes to eat it all. And a word of caution.. The first time I tried this, I got a headache from going too fast. I carry packets of salt for this purpose. Table salt seems to be more effective than sea salt. Could be the iodine or chloride in table salt.

That's great that you don't have tpo. I haven't seen an endo yet. My doc is an integrative doc so she handles most of my health issues. It's not that she didn't tell me not to worry about this, we just have too many other issues to address at each visit. I don't handle meds well and I'm a bit of a mess .. Lol .. D Eta .. Have you had a gtt + insulin yet ? Sue and I both have hyperinsulinemia.

I just looked. It's tpo. She says it's due to my leaky gut and gluten. So far when this is up so are my eosinophils (i just looked and these were ok in dec) and my gluten antibodies. I.m on a mostly paleo diet but every once in awhile I cheat and eat a gf goodie. I finally learned that I can't do that even. My gluten antibodies were really high on my last stool test. If the gluten cc is coming from supplements it's going to be harder for me to find and stop it. My tpo was 2600 once and 400 on the last test in dec. Also, in dec, my thyroxine was 7.8, thyroxine free was 1.10, t3 free was 2.3, and tsh was 2.35. I didn't do well when I tried synthroid or armour years ago. Have you had your antibodis tested yet ?

I'm confused. My reaction to too many carbs is the same sick feeling I've always gotten from eating too much sugar even as a kid. Post hallowen comes to mind .. A little shakey with a slight urge to barf. An adrenaline overdose makes me feel shakey, hyper, riled up and ready to pounce. It's not the same except for the shakey part. I would feel the adrenaline surge if I ate too many gf goodies tho. Sugar and gluten are a bad combo for me. I noticed amylase was mentioned. Is that a pancreatic enzyme ? I have thyroid antibodies too. I'm not sure if it's hashimotos tho. Congrats on figuring this out. : ) .. Tc .. D