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About Sarah4444

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    Ontario, Canada

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  1. I have lots of trouble with this too. I talked to my neurologist about it and she says it's probably and indication of the severity of cerebral hypoperfusion. If we aren't getting enough blood/oxygen to our brain even things like concentrating can be difficult and tiring. I went to friends' last night, and actually did better socially than I have done for years, which was really hopeful for me.
  2. It has a lot of attachments and is mainly mast cell related, so I posted in on Mastocytosis Society Canada. I'm also tired, but if anyone wants to check it out there, I'd be happy to answer any questions. And I'd still be wondering what in the world was even going on if you hadn't pointed me in this direction, Julie.
  3. My new motto in life is now: Just ask Julie
  4. I have that exact same feeling, and also wonder about it. Just to complicate matters, Dr. Francomano tells me that many EDS patients also have swallowing issues due (they think) to brain stem compression or occult tethered cord. As sugartwin says, I think we have lots of doctors out there looking at the same elephant from different angles. It does get worse when I have distinct anaphylactic episodes, but I think when that happens I may actually be layering one throat constiction feeling over the other. The ongoing annoying one may be due to chronic low-grade anaphylaxis, a rubbery thyroid,
  5. Detrick7, the neutorologist I saw said that with so much cerebral oxygen deprivation it isn't surprising that strange things like this happen. She wanted me to try domperidone (for dizziness apparently, although I think it's usually for GI motility) and then maybe Mestinon. I am still fiddling around with MCAD meds trying to get those symptoms settled so I haven't tried the others yet. I wanted to see the autonomic doctor first - I sort of feel like each doctor I see has a different drug they want me to try and I don't know how to proceed. I have improved though, on the meds listed below.
  6. Lance, my blood pressure is almost always normal when I check it, but it often falls briefly but signifcantly when I stand up or after I have been standing for a while. Whenever I catch a very low reading I take it again and it has recovered.
  7. I have had some bad falls, and now try to be more careful (not that I was careless before) but I still stumble around quite a bit. Frustrating.
  8. Just to add to what Julie wrote, domperidone is available in Canada by prescription - it might be available from Canadian online pharmacies? My neurologist actually prescribed some for me last month, apparently it also helps some people with dizziness. I haven't tried it yet.
  9. Hi Robin - This will probably sound strange, but I have trouble drinking plain water. I don't know why, but it seems to make me feel nauseous. When trying to increase fluids I have had more luck with G2, both in terms of tolerating it and how it makes me feel. I am worried about consuming that much artificial sweetener, but am just trying to make basic improvements and will try to iron out those details in the future. I remember that some members have mentioned making home-made electrolyte drinks - those might be more palatable for your daughter. Good luck with all this.
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