Dizzysillyak

Did you get the buzzing, etc when you laid down ? I used to get a buzzing feeling regularly sitting, standing, etc but it went away when I eliminated gluten. I feel my hr in my head too when my bp is too high. I thought I read that was normal tho. I hadn't considered that I might be feeling vasoconstriction / vasodialation. Thanks .. I remember getting a similiar feeling when I first tried 5htp. I'd taken 100 mg. Reducing the dose helped. Whatever it is, it certainly feels weird. .. tc .. D

I used to get these all the time. My doctors prescribed klonopin, neurontin, etc ..Neronotin caused me to have hallucinations. I don't do this now that I've improved my diet. Gluten appears to have been causing this in me. I'm on the wahls diet now. And I'm drug free. If your doctor hasn't spoken to you about gluten, etc you may not want to wait for him/her to catch on. Our doctors are typically ten years behind. Googling thglutenfile will tell you what you need to know about gluten. Googling functional medicine will explain how the medical community of the future will look. Tc .. D

Do you all get this ? I'm sure it's just the blood rushing back in but it feels really weird. Kinda like little bubbles are popping in my brain ... I can't "recover" from my oi unless I lay down flat so I apparently need to do this. I'm one of those who can't be up very long without feeling weak, light headed and getting sob. Do "normal" people feel this way too ? What's with the popping feeling ?

I take it only if I need it. Some nites my body just can't make enough on it's own. I don't know if it affects my oi or not. I'm still identifying triggers. I take the minimum dose tho. Typically I take 1.25 mg with 50 mg 5htp but if I've been glutenned or am just wired, I use a combo of sun theanine (100 - 300) melatonin (1.25 - 9) and natural factors brand only 5htp (100 - 300). Works everytime. Tc .. D

Nsaids can damage our gut villi. My endoscopy report actually stated that the damage I had was either from celiac disease or nsaids. They can't tell the difference. I've never had a bad reaction to aspirin, but I use tylenol for pain. Tc .. D

I bump an older thread on this called "ltd idea works for me". In that thread somone said this condition, not constricting our thoraxes enough is a consequence of this illness. I hadn't heard that. It also looks like we can buy this device online. Or someone suggested breathing through a straw. I have to try this .. Tc .. D

Old thread on resqgard ..

Are they saying that increasing the pressure it takes to inhale oxygen will increase blood flow ? Also, why isn't this device attatched to an oxygen tank ? Wouldn't that make it more functional. I'd love to try this. Just out of curiosity I cupped my hands over my nose and mouth and took some deep breaths. Lol I don't know if it helped but I felt more awake ..

Oh . Good to know. I'm glad that we agree on this. I can only refer to dr hadjivassilou when it coes to gluten ataxia. Without a better understanding of the brain and how nuerons work, I'll just have to trust those who are studying this. I have to say tho that it is super cool not having ataxia anymore. : ) I'm with you on the flim flam doctors promoting their cures. We just need a better method of identifying these. Throwing all holistic doctors under the bus was counter productive. Tc .. D

Hi rama, I'm guessing the statement about cfs theories and psuedo science was aimed at me. Call me paranoid if you like .. Lol I have to refer to all integrative and functional DOCTORS on this. I wasn't trained in med school or any health field so I'll leave it to these doctors who've converted from the traditional approach they learned in med school to treating their patients, and themseles in many cases, to explain their functional medicine approach. Fwiw, As a programmer analyst, ex now, trained in resolving complex logical problems, i see more psuedo science from the traditional side than I do from the functional. (insert eye roll ; ) ) Just look at how many drugs are recalled or all the warnings on those still on the market .. Not that I consider all supplements as safe. Just by watching health forums we can see how many people are not satisfied with what our doctors are telling us. I waited for their "majical" solutions for 15 1/2 years only to find answers in holistic medicine. This is our lives and to them it's a career. Tc .. D

imho, Most of us here haven't discovered our root causes. In some cases and I'm not sure which ones yet, but i don't consider a root cause to be the name of a different diagnosis either. Take celiac disease as a root cause for dysautonomia. Yes, it's true that some celiacs will have dysautonomia and eliminating gluten will relieve this symptom / diagnosis but this isn't true for ALL celiacs with dysautonomia. Afterall, dysautonomia can be a co-existing symptom for celiacs but it's not a known result of eating gluten. We know that in most cases, intestinal villi will heal by eliminating gluten but without knowing what causes dysautonomia, it can't be linked to the damaged villi itself. I hope this makes sense. It does in my head. Lol .. Fwiw, at this point, my best guess is to see an integrative or functional doctor who can help look for root causes of chronic illness. From what I've read so far, these can be nutritional deficiencies, food intolerances, dysbiosis, bad bacteria, parasites, toxins, etc. My latest experience with h pylori and paradites has me wondering what else my gut may be harboring. I've been seeing one for a few years now and we've eliminated and identified several possibilities. One possibility is that I over produce gluten antibodies to even slight amounts of gluten. Another could be that due to my celiac disease my body is low on nutrients that can't be measured. For ex - I've responded to two bio available nutrients. Adb12 and p5p. And now juicing leafy greens appears to give me some energy too. : ) Fwiw tho, I've been totally disabled for 22 years now, so I'm not expecting to recover. This doesn't mean I'll stop trying whatever comes my way. Tc .. D

Ok, got it .. Thanks. Fwiw, I'm seeing too many benefits from diet to think any supplements could do what healthy foods do. Dr wahls explains this in her ted video. I need to change my sig to say wahls diet. I was eating too much meat and mistakedly took romain lettuce as equivalent to dark leafy greens. I'm trying not to get too excited, but my energy has improved via her diet and eating more fruit. Tc .. D

Ps. Rich v's info is JUST a theory. He's the first to point this out. I'm not sure if it has merit myself since our bodies need to detox in many other ways. It seems coming up with theories or protocals appeals to those in the medical field. As an ex computer programmer I have trouble relating to unproven theories. If my "theory" didn't work, I moved on until I found one that did. Tc .. D

Eliminating your body's need for klonopin first helps with the withdrawals. In my case, gluten appears to have been causing my myoclonus. It still took me 4 months to come off this, but after reading the horror stories, I decided the slower the better. Theanine works the same way and I'll use it if I'm glutenned. Tc .. D

Imho, a clean diet, like dr wahls, can help with most chronic illnesses. The only reason we eat the foods we do is because strong lobbyist keep our govt supporting these. imho, It's the medical profession insisting on different labels, aka diagnosises, for symptoms that makes it confusing. I suspect the drug companies are behind the confusion. Imho, Eliminating toxins, treating nutritional deficiencies and treating for parasites and bad bacteria are just as important tho. A healthy diet helps our bodies fight these tho. Tc ... D Ps. Fwiw, From what I've seen many parents of autistic kids missed the boat by feeding their kids "gf" junk foods instead of healthy foods. Most of these have trace amounts of gluten if not more. I cringe everytime I read that a DAN practitioner is recomending these.

I have a left bundle branch block confirmed by ekg but it was originally diagnosed as mvp. I have dysautonomia, oh and pots, and cold hands but I thought the cold hands were due to Raynauds or hashimoto's. My brain attacks are petite mals and happen everytime I'm upright for too long. Walking helps but it's not a practical solution. Recently, I changed to the wahls diet and am feeling a tiny bit better. Dark leafy greens and more fruit seem to be the key I was missing. Thanks for posting this tho. This is a good reminder for me that my lbb could be responsible for my dysautonomia. Tc .. D

Hi Jon, imho, you should take a look at your diet. Many of us have food intolerances and even tho my illness started post viral / bug, I responded well to an all natural diet. I didn't take this approach until after I'd been totally disabed for 15 1/2 years so I may not recover but my life is much better. Personally, I like dr terry wahls videos on how she recovered from ms via diet, supplements, etc. She was a traditional doctor but is now a functional / integrative doc. Just google her name. Tc .. D

Great idea. Tc .. D

Hi issie, I had no idea that you've had pots your whole life. Hugs .. I can't imagine how complicated your life has been. You've certainly made the most of it tho. I enjoy reading your posts and consider you an inspiration for others dealing with this. I'm sorry to hear that you're struggling but know that you'll come out of this. It seems that there are always new treatment options showing up on the web. Hopefully, one of these will pan out for you. Tc .. D

Mine started out of the blue with a bug that led to chronic uti's, uri's and too many neuro symptoms to list. I was diagnosed with me/cfs/fm/oi tho. I don't remember any gastric problems in the beginning but had periods of gastroparesis for weeks at a time off and on. And I was grey and yellow several times over the years .. I just drank ensure and ate bread for a week or so, then I went back to a reg sad (standard american diet) for 15 1/2 years until one day I couldn't eat gluten anymore without it going right thru me. I had ataxia so it didn't matter that I had oi cause I fell over all the time. I would never have figured out the symptoms of oi if I still had ataxia. The first pmttt I remember was 2 years post illness onset. I'm assuming some others started this way, post bug, too .. Tc .. D

It sounds cruel to me to put parents in a position of pushing their kids when they're sick. Unless, mayo has a clear cut way for these parents to determine if pushing is the right answer at the time. I definitely look at this board as a support group. No one understands us better than we do .. Thanks ..d

Hi jen, If everyone gets hypoperfusion from oi, then I would "assume" that there is going to be some organ damage. I get petite mals and sob upon standing and I'm sure that's not good for my body. Btw, I keep forgetting to mention to you that when I got h pylori and parasites back in sept, my oi was the worst it's ever been. I couldn't stand for more than a few seconds without being symptomatic. Also, my gi transit time slowed. I didn't notice stomach pain until I'd been sick for 4 months. I was just wondering if you've been thoroughly tested for either of these. Tc .. D

Thanks. I know some people are tired of me talking about dietary interventions but seeing as how I've made huge improvements and know others who've also improved via diet, I hate to see people struggling with their health. fwiw, if I'd continued to traditional medicine, I'm sure I'd be dead by now. They just don't know how important diet is. Imho it's very sad that this group of highly intelligent people have been taught to prescribe drugs, etc not how to help the patient heal their bodies. imho, dr terry wahls, traditional md now functional, has the best info out on this. If you google her name you'll find her videos. Her TED 51 minute video says it all .. she even discusses where traditional medicine went wrong...Tc .. D

Integrative / functional. These are mds who are also trained in holistic medicine so you get the best of both.

Thanks. That was hysterical .. D