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Everything posted by corina

  1. I think it would be best to ask your doctor re a test for hypoxia gossamer4448
  2. Not sure if you are on meds but I think it would be best to discuss these problems with your doctor Outaker! Hope you will find some relief soon
  3. Personally I never go to the ER, when I go out I always bring a bottle of salted water, a salty bite, an apple or whatever I think I might need once I get in trouble. When I feel I might get in trouble before I leave the door, I decide to stay inside. It may need some time to figure out what you need to stay safe but for me this works really well!
  4. Caty, have you noticed this page: it can be found at our home page under Information Resources!
  5. I didn't try this med but it's on our DINET/What helps list also. I know from the past that (former) members have tried it. Here's a link to our What helps list:
  6. Welcome everyone, glad you found us!
  7. Unfortunately I can't remember for sure but I think I had delayed reaction. I do remember that I had electrodes all over my head, bp measurement and had to bike for a certain amount of time (can't remember for how long). If interested in this test you could call them, they are on our Physician's list (Prof J.G. van Dijk LUMC Leiden The Netherlands)
  8. Hi Terry, I'm sorrry you're doctor doesn't seem to be of much help. I agree with Pistol that it might be best to ask for your results and find a new doctor who wants to work with you. Take care!
  9. Bombsh3ll, that was one of the tests my doctor located at the Leiden University Medical Center in the Netherlands did at their autonomic unit. I think the London Clinic (Mathias) may do this too? Hope this helps!
  10. Every time I come here now my password is rejected so I have to reset it? @Peter Charlton, I have asked one of the admins to try help fix this problem
  11. Edited to add: sorry this is a 2014 article on SFN in POTS, I think not the article you mentioned? Here's the abstract, you can read the full-text of this article per request from the authors on ResearchGate using a link. https://www.researchgate.net/publication/260947728_Small-fiber_neuropathy_with_cardiac_denervation_in_postural_tachycardia_syndrome
  12. Welcome everyone, glad you found us! Feel free to ask the questions you need answers to, I hope knowing that you're not alone may be a comfort to you all!
  13. Could you ask your family doc to help guide you? I so understand you need help with this!
  14. I'm sorry I didn't notice this one earlier. I will move it to the Dysautonomia Discussion forum as it will apply to many more members (who may not read this chit-chat forum)!
  15. Though not in the US, we use it quite often. Fresh vegetables can be a problem (they often deliver them with just one day to go) but all in all quite worthwhile. We have several free delivery possibilities, ie when ordering 6 bottles of water or when delivering on a specific day. I can't do grocerie shopping myself so when my husband doesn't have time or when he's ill we use an online service. Makes my/our life much easier! edited to add: oh and they deliver into our kitchen which is great!
  16. Very sorry your husband is struggling. I don't know if there's some kind of equipment he could use, perhaps anybody else?
  17. I have one too and use it if needed. It does a great job! I put it on as soon as I get out of bed and use compression hose together with it. Hope this helps!
  18. Hi bleon, wanted to let you know that I have moved your topic on IVIG from chit-chat to Dysautonomia Discussion forum! Chit chat in general is meant for off topic conversation with friends and isn't read by everyone. Hope you will get some answers!
  19. I think you may need a dysautonomia specialist to answer your question. Perhaps try Mayo Clinic or Cleveland or one of the other Dysautonomia Centers?
  20. I hope they're not to bad. Do they outweigh the benefits?
  21. I'm not familiar with it but am glad it's helping you. Hope the fatigue will lessen (perhaps your doctor could inform you on that?)
  22. Hi everyone, welcome to DINET!
  23. I use an abdominal binder when needed, which is very helpful. I don't have any experience with chest binders. Hope this helps!
  24. Wim Hof (the Iceman) is Dutch, as I am. I'm interested in his method though at the same time don't think it will cure my dysautonomia. The breathing exercises create an effect that can be compared to hyperventilation which can lead to short periods of loss of consciousness, people have died trying them (probably while exercizing in the wrong place like while driving, swimming, diving etc). If you are into trying please make sure you are well instructed and def not alone!
  25. No worries Pearlie, I removed the post you mentioned
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