Suthrngal Posted January 14, 2014 Report Share Posted January 14, 2014 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. Quote Link to comment Share on other sites More sharing options...
Suthrngal Posted January 14, 2014 Author Report Share Posted January 14, 2014 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. Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 14, 2014 Report Share Posted January 14, 2014 You say you have periods when you don't have any of these symptoms. Have you kept a food diary? I would start keeping a diary of what you are doing, eating, or drinking. Maybe this would give you a clue.My son has the tremors and did have some days without a very long time ago. They happen everyday since he had the flu over a year ago. More than likely its immune related.Have you had hormones checked? My son's serotinon and dopamine levels are way off. So maybe it has something to do with serotinon? Virus can cause strange symptoms. Did any of it start after a virus?Like you, I wish I could figure out what would stop my son's tremors. Quote Link to comment Share on other sites More sharing options...
Suthrngal Posted January 14, 2014 Author Report Share Posted January 14, 2014 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. Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 14, 2014 Report Share Posted January 14, 2014 Have you tried gluten free diet? I have not done this with my son yet. But many on the forum have and are having success with this diet. Do a search for gluten free and you should find several old post.Rachel Quote Link to comment Share on other sites More sharing options...
Suthrngal Posted January 14, 2014 Author Report Share Posted January 14, 2014 Totally gluten free. When I mess up and eat wheat my intestines are blocked for MONths so there is something to it. Quote Link to comment Share on other sites More sharing options...
badhbt Posted January 15, 2014 Report Share Posted January 15, 2014 I get those fasiculations and nerve issues. One thing that has helped with it is B12 shots. I have to take one about every 4-5 days, I was taking them daily. Quote Link to comment Share on other sites More sharing options...
Suthrngal Posted January 15, 2014 Author Report Share Posted January 15, 2014 I have very high b12. Not sure why... Quote Link to comment Share on other sites More sharing options...
looneymom Posted January 15, 2014 Report Share Posted January 15, 2014 Is your B-12 being absorbed? My son has high levels also but was started on B-12 shots called Methycobalmin. These have to be made by a compounding pharmacy. They seem to be helping with my son's fatigue. He can have them every 3-4 days.Rachel Quote Link to comment Share on other sites More sharing options...
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