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About Rainy

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  1. Thank you for your response. I went to the urgent care but they told me I needed to follow up with the neurologist which I am doing today. I have had multiple EEGs for symptoms that were thought to perhaps be partial seizures but none have been detected yet. I also have a Chiari and ventral brainstem compression so what you said makes sense.
  2. This is a new symptom for me and worrisome since it’s a holiday weekend and I can’t reach my doctor. For a few days I’ve been having this symptom where it feels like everything “stops” for a second or two and then “restarts.” It’s more than my heart. It’s more like there’s a low grade hum that represents my life support systems and it goes offline for a second. It’s a physical sensation similar to airplane travel when the pilot lets off the accelerator. You feel a physical change. This symptom seems to center around my diaphragm or sternum, which is why I mentioned my heart (no pain or pressur
  3. Katybug, do you know if your N-methylhistamine and prostaglandins fluctuate greatly in accordance with exposure to triggering substances? My immunologist did say that we can restest me in a month. I will be sure to expose myself to known triggers next time I'm tested. Thank you again for the information.
  4. Thank you for this info. I'll share it with my doctors. So do you use a daily regimen of histamine blockers and if so, is it monitored by your doctor or did you just institute it based on the literature and your responses to the treatment?
  5. I'm getting bizarre "allergic type" reactions to some foods and chemicals but tested negative for allergies as well as N-methyl-histamine and D2 prostaglandin. What happens is that within minutes of consuming something that triggers the response (substances seem to vary), the roof of my mouth, soft palate and the glands under my jaw on both sides of my throat feel like they're swelling and contracting, my throat feels constricted as if my airway will become closed off (but it doesn't really), my nasal sinuses will pinch closed shutting off the airway and then release a few times (kind of like
  6. Hi Percy, i started the beta blocker at a very low dose (Metropolol ER 12.5mg morning and evening) and I don't think it's lowered my blood pressure or heart rate, but it does seem to help my adrenaline over-response and deep sleep. You might want to read the book The Dysautonomia Project. I found it very helpful and it explains the adrenaline response. Hugs to you!
  7. Hi, thanks for your response. I just recently saw another doctor that specializes in dysautonomia. He told me that these symptoms are a parasympathetic response to the overactive sympathetic response. He thinks I produce too much compensatory adrenaline because I'm so fatigued but since I don't sleep well it has been a vicious cycle perpetuating and exacerbating the dysfunction for a very long time, getting me more and more run down. He also just prescribed a beta blocker which I will start tonight. I also have RA, anemia, and reactivated Epstein-Barr which don't help.
  8. Thanks for your response, Katybug! I've had the neck vessel constriction feeling too. I've often said that I feel like my neck is filled with cotton. There's a sense of swelling/stuffiness that can't be seen. My cardiologist did mention the possibility of trying me on mestinon, depending on the outcome of my additional neurological testing. Interesting that you mention feeling like you've been given general anesthesia. That sounds very much like what I mean about feeling half-conscious/drifting into a coma. One neurologist suggested that I have narcolepsy and cataplexy, and wanted to prescribe
  9. I'm new and this is just my second post. I'm still waiting on some test results and discussion of them with my doctors. I get an EMG Tuesday. I wanted to ask if anyone else has had this symptom: For the past few days, I have tremendous head and chest pressure (not pain), extreme fatigue (seriously feel like I'm going to lose consciousness or drift into a coma at times), and shortness of breath. It's pretty frightening because I feel there is something very wrong but I cannot figure out what it is. All these symptoms get far worse when I'm upright. My blood pressure and heart rate, however,
  10. Thanks Kris. It's helpful to know that test results can be inconsistent. I wish someone would do my upright NE and dopamine. An integrative MD did a Pharmasan Neuroscreen test on me that showed elevated dopamine in my urine (normal NE). I've also had 24-hr urine catecholamines that were within normal range, but I've never had upright serum levels checked.
  11. Thank you for your responses, Corina and Kaitlyn. It's good to know that it's common for symptoms to vary and wax and wane. I had stopped taking all the medicines on the list for the amounts of time I was supposed to stop taking them before I had the autonomic testing done, so they should not have interfered with the results. My QSART response at the foot was "borderline" but I've been diagnosed with heat exhaustion on three occasions so I know my body isn't regulating temperature correctly either. Hopefully my skin biopsy results will provide more answers. I also just received the results of
  12. Hi All, I want to introduce myself and share some of my story. It's rather lengthy. I became debilitated with a cascade of symptoms following a bicycle riding accident in spring 2015 that broke my elbow and required surgery and a metal implant. My symptoms have included chronic pain (spine, bones, nerves), body and face vibrations, other parasthesias, gastrointestinal issues (reactive hypoglycemia, constipation, motility issues - too fast, too slow, reflux, abdominal pains, what I think is splenic fixture syndrome), postprandial hypotension, orthostatic intolerance (feeling like I have hy
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