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mgr268

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Everything posted by mgr268

  1. I was told that I have low Carnitine levels and this could be causing fatigue. Have any of you been told that you are deficient in Carnitine? If so what do you use to supplement? The prescription Carnitine that was called in was huge and their is no way to swallow them. I am deficient in a lot of vitamins due to GI problems.
  2. yes, it makes since. They appear like a panic attack but all you are doing is sleeping. Thanks for all of your help
  3. Hi, I have had POTS for 8 years. I suffer from orthostasis, autonomic neuropathy including intestinal dysmotility (rapid small bowel and inertia of large intestine) this has resulted in malabsorption of multiple vitamins (B12,Vit D, calcium, folic acid, ferritin, and fat malabsorption). No one can figure this out and I am unable to get them back to normal through supplementation. I had rickets and multiple broken bones. I was just diagnosed with Ehrlos Danlos and am seeing a geneticist at the end of the month. Despite all this I am highly functioning and am able to lead a "relatively" normal life (at least it looks normal to others). My question is I have been having these "attacks". They were only happening at night but I had one during the day yesterday. I will start to feel bad and abruptly be awaken from my sleep. I will feel as if I am dying and having a massive heart attack. I will have chest pain and sweating and dizziness at the same time my stomach will be gurgling and feel as though it is moving. After about 20 minutes it will pass. I believe it is some kind of autonomic reaction to my bowels moving or spasming. It scares me to death and makes me scared of when the next one will occur. I have not determined a trigger. Does anyone else have this kind of "attack?" Everytime I go to the Dr. I always ask if they think its my "heart" etc. They blame everything on the POTS. I had a calcium score of "0" 6 years ago so they tell me it is highly unlikely to be any kind of heart issue I have not met anyone else with POTS but would love to know if this is something others also experience. Thanks
  4. I have had POTS for 7 1/2 years. I have gut involvement and malabsorption syndrome. For years now I have had chronically high C reactive protein levels. Does anyone else have this? If so, have you been able to lower it, and if so how? I have no diagnosed autoimmune illnesses but do have a high level of muscle pain that they label fibromyalgia Thanks
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