Suthrngal

Rama, what kind did you take? Tea form? Supplement?

I have very high b12. Not sure why...

Totally gluten free. When I mess up and eat wheat my intestines are blocked for MONths so there is something to it.

Neurotransmitter testing (saliva) showed high glutamate and low serotonin. I do watch foods and my list of what I don't eat is higher than what I do eat. Always a good suggestion though. I'm thinking it is gut related........but not sure if serotonin, yeast, bacteria, etc..... Every doc I see claims something different. Natural doc like to treat what their speciality is.

my slow gastric emptying: tests show food goes thru the stomach quickly but stays in my intestines too long and gets painful. Just feels pressure and fullness. *****Once I was at ER with POTS symptoms.....due to a severe reaction to CORTEF (one dose), was treated with two bags of saline and my painful, full intestines cleared out (sorry TMI). That is when I realized the painful intestines is related to the tachycardia, and sodium and fluids.

Hi all, So I have POTS (dx MAYO and Autonomic Center in Alabama). Most of the time I can keep low bp, high heart rate, lightheadedness etc. at bay with sodium and fluids. I do get painful slow gastric emptying. And this seems to be related to my next comment..... Keep in mind the three symptoms listed below started at the exact same time.....last Feb. I get fasiculations in my legs and tiny spasms in my feet that seem to be related to intestines. IE. took a fiber, mix in water type supplement and the fasiculations were crazy. This often keeps me up at night. These come and go in severity. I also have burning or freezing feet and pin pricks in legs and feet. I can't discern what is causing this. One doctor said the reaction to the fiber and intestines being messed up and thus causing fasiculatiuons is related to low serotonin and prescribed Tryptaphan. I never took. I also have sudden onset shaking/tiny tremor that started when all of the above symptoms started! The pins and needles (neuropathy), fasiculations and shaking all started at the exact same time. Here's what I KNOW: I have POTS, I have high glutamate, am allergic to MSG suddenly started 6 years ago when POTS symptoms started, my only other symptom is that my muscles in neck and back seize up and are very tight and seems to be related to something I am ingesting or a level of something....this also started 6 years ago when POTS started. Also hetero MTHFR and hetero CBS. Can anyone help? I take coq10 (was VERY low), magnesium, Valerian Root, vit d at times, probiotics at times, sodium tabs and fluids I have seen every type of doc you can imagine. To include a handful of MTHFR type specialists. I have periods where I feel better but I do not know what I am doing to lesson the muscle pain, fasiculations and neuropothy and shaking. Thank you in advance.

Does anyone have a remedy for this? I, too, started have pin pricks in legs and feet and needle feeling and cold and burning feet...worse at times but can't discern cause. When my bp drops, my legs and hands go numb...and heavyish. I also get fasiculations in my legs and elsewhere that seems to be related to intestines (i.e. took fiber supplement and got pin pricks worse and spasms all over legs). Weird and bothersome. Keeps me up at night. One doc said low serotonin and suggested Tryptophan.

Keep it coming. Great info!

Klonapin vs Xanax? Who has benefitted from low dose Xanax (not for anxiety). Pots (low Bp, high pulse, nervous system symptoms, tight muscles etc.

Pain along spine. pOTS bulging disks in neck (like 5) mild spinal chord encroachment. neurologist said to help this fluid......stay hydrated. But that's the issue I don't stay hydrated.

Ok so for a colonoscopy...what are we supossed to use? What works?

Issie, great info. Thanks so much for your valuable time!

Issie, I also need the heat. What supps help your vessles to dialate?

I have read this whole post and need clarification please. Which test do you all recommend other than igenex? My CDC says no my igenex says yes. Other test? Docs at MAYO say noway. Also treatment? What actually worked for you. I have had candida in the past and don't want to antibiotic up (what if its not needed and compounds the real issue yeast?)

No the b comple made me wired, I think.

Chaos, I too have mthfr. Overwhelming. Can you share which antiviral you took and how you knew you needed them.

Issie. What type of doctor tested you and is treating you? I'm finding every doctor I see says I have a Different problem and I react to what they prescribe. I need to KNoW what is actually wrong. I'm so very happy for you.

Issie, so glad you're feeling better. So which tests exactly did Dr Fry do? Lyme confections? I'm having a hard time focusing on all the info. How are you treating? Is Dr Fry at MAYO? Thx.

Any updates on this b1 treatment to level glutamate and GABA? I need to level this GABA but am hesitant to take GABA itself. If I even take free glutamate items (msgtruth) I get nerve pain so I know its related. Over excited nerves.....

I never took the nortryptine. Still having the symptoms. One doc said gabapentin would be a good option but was prescribed the nortryptaline. I have POTS/dysautonomia (low Bp and high pulse) . Mayo clinic called these fasiculations and current feeling Central sensitization (overactive nerves etc). All sudden onset...Seem to be related to my gut. Ie took a probiotic and fire and faciculation a worsened. Trying to decide right now between nortryptaline and Klonapin. I need something to calm these nerves. I am anti medicine so I have tried magnesium and everything natural and nothing has worked. I hope you all have gotten relief!

Arizona Girl, what is CVID? And what causes of POTS did he initially test for? And why did he do a lip biopsy and what was it positive for? I was told I have POTS but noone ever discussed why. I'd like to know because we're missing something. :-). No good doctor stories but soon I pray!

Great thoughts. Thanks for sharing y'all.

I have extreme muscle tightness (and tachycardia and other typical pots symptoms) and I think my muscles feel much worse/tighter when I get cold. I just had a mini breakdown due to not getting any answers (from God). It's been a while since I've had any break thru and doctors are no help. I left the doctors office (very cold) and did my yelling at God thing and as I heated up due to the sun....my sudden onset tremor (constant since April) and tight muscles felt less tight. Could this all be related to the POTS? Circulation etc???/. Weird but always hopeful.

Let us know what you find. My neuropathy and muscle fasiculations seem to be related to intestine issues as well. I never Estes positive to E. coli but it is related.

Today I was prescribed nortryptaline for this "current like" feeling that leads to shaking. Doctor said it also is an adrenaline lowerer (good for pots) and is a sort of antihistamine (I need this). Can anyone please comment on any of these claims????? Thank you in advance!