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Everything posted by Rose11

  1. Did they ever mention taking a beta blocker? Those should not cause cognitive impairment. Also for many people, just walking might help overall. I sure hope you can get answers or see and improvement, since you hopefully will start a new job soon. I wish you the best of luck!!!!
  2. Of course, everyone reacts differently to any kind of medication, but I have heard many people can have trouble with Topomax with cognitive impairment. Since you mentioned you are going on an interview, you may want to try it over a weekend OR after the upcoming interview. Can you see another doctor about your health issues to see what they say? Good Luck on your upcoming interview and overall in general...
  3. Has anyone tried digestive enzymes to help with this? Just wondered if it would take less blood (pooling) in the gut if the enzymes do some if the work.
  4. Call whichever doctor prescribed your beta blocker in the past and see if they could call it in for you tomorrow. I would leave a message for your PCP and just tell them it is personal and ask that doctor for the beta blocker if you feel that is the best doctor to prescribe it for you. How frustrating that you have been going for 20 years to this office to be treated this way. You definitely should share with your PCP about your experience. Good Luck
  5. I thought I saw some examples of exercises on Dysautonomia international website under patient tab then under exercise. They were YouTube videos. I wonder if you do a search directly on YouTube for Dysautonomia or POTs yoga, you might find something. It's good to start very slowly with any exercise, including yoga?
  6. Thanks for the input. The insomnia was not new, just worse than usual. Hard to say if the Florinef was the only factor involved in the change. Melatonin is no longer working. Will look over sleep hygiene sites
  7. Thanks for all the suggestions. This has been going on since about 2 weeks after starting Florinef. It's taken in the morning, could it be related to the medication?
  8. It is getting more and more difficult to fall asleep at night even though I am exhausted. Any ideas? Thanks!
  9. There may be other good doctors on the list that know about Dysautonomia in your area. If not, Are you able to get into Mayo or Cleveland Clinic if your neurologist does not help? It takes a lot of planning to go there but some people have had good luck there. I hope your upcoming neurologist appt goes well
  10. Did you have low saturation levels? We were told even if saturation levels were good, that the oxygen would be helpful. Any insight? Thanks
  11. I did not know there was a blood test for neurotransmitters...what was the test called? Thanks
  12. I read on someone's post that they use cell salt for POTs. I can't seem to find that post again to see who it is to ask about it. What is cell salt? Which brand is best? What does it do? I would appreciate any input on this subject. Thank you.
  13. I have the dialated pupils all the time. Just saw an ophthalmologist and right away he said it was probably due to an autonomic disorder. He also said I have dry eye, so he gave me eye drops. It helped just very slightly with the dialated pupils
  14. I bet it was frustrating and upsetting. It was good that you did go for a little while. There may be other gatherings where they just play video games or hang out and talk that you can participate in. Unfortunately, many people don't understand and it is hard, but people on this site, do understand the limitations and frustrations. My saying is tomorrow is a new day and there's a chance it can be better.
  15. Sorry you are having so many problems right now. Never feel guilty when needing extra rest, just do it. That will give you the energy to do other things you enjoy. I'm sure your parents are frustrated, since they probably did not get training on Dysautonomia when they were in medical school. Perhaps they would be willing to take a little time to find research on the subject through medical journals. Many parents who are not physicians do research to better understand what their children are going through. They don't need to have all the answers. Maybe they can help you come up with questions for your upcoming doctor appointments. Good Luck and keep sharing on here. Hope you have a wonderful weekend!
  16. Robin, I would like to know how your appointment with Dr. Gilden went this week. Hope it went well.
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