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Chiara

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    Germany
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    music, spirituality, to meet my friends

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  1. I think the person you are looking for was pistol in this post. She wrote about her expiriences with covid and hydroxychloroquine. Hope your pd will support you, as best as he/she can. All the best for you.
  2. In my case infusions helped me so much too. When I had a flair, than I took the iv, lay down, but after an hour I could walk, talk, work, blurred vision was over, headache and all symptoms have been much better. In bad times it supported me for 5 days, than the effect slows down. So I've gotten it weekly. It helped me so much, better than every drug. In the moment I feel better, because we changed my medicine and I need the ivs only as prevention. . I think, there are some patients with POTS they cannot resorbe enough fluid orally, so they ivs could support them in daily life ...
  3. I have dysautonomic disorder, SFN and hypermobility, but not EDS. Often my chiropractioner tells me the same. My orthopadic explained me, in the elder age, hypermobility develops often back into much more normal states. So it's difficult to get a diagnosis about 50. I make a lot of physiotherapy, osteopathy and chiropractic. It's important to reduce the side effects of hypermibility like pain...
  4. @DebbieDysautonomia I don´t know if it could be helpful for you: I have a friend, she has a hyperthyroidism. She couldn´t take the medicine for this, so she went to a natural doctor. He set her on lycopus H 170, no additional iodine, no iodized salt, no seafood, fish, no soy,... Enough selenium, zinc, and Vit. D3+K2. It needed time, but in the end - after some month - she was able to manage her hyperthyroidism only with this medicine and diet-plans. Maybe there is a possibility for you too, to find a natural doctor, who can support in your case?
  5. MTRJ75 I think all things we do to improve our condition or healthproblems makes our habit more stabil, so our ANS can stay better in balance. To develop a good feeling for our body and soul and the feeling of health, seems to be "the loophole in the eye of the needle" for every form of dysautonomia. I can't change my underlying dysautonomic condition, but I can learn to balance all my other issues, and my dysautonomic symptoms have the chance to improve. That a strong way and just I am a student, but I think that´s it in my case!
  6. I use a small electric fan everytime, when I am symptomatic. He cools my heat down very fast. When I use it just in the beginning of a heat wave, my symptoms don't grow up so fast and so bad. I use it often in the night too, so I sleep much better since I got it.
  7. I get it. The correct name is heterophoria ventricularis and I take a prism foil for it. I have small fibre neuropathy, so I have blurred vision everytime when I read more than 20 min. or have to concentrate for longer than 20 min. So I take dark glasses when I have to work at the pc. We have in Germany special glasses against migraine too. To spend much time outside in the nature, in the forrest is the best medicine in my case against blurred vision.I put special water drops 3x daily in my eyes, because they are very dry and make a lot of resttimes, all 20 min. when I have to work at the pc...
  8. Yes it names heterophoria and I have a foil on my glasses. It helps me when I have to concentrate me. It's supports me well in handling my symptoms. Now I take it 4 month. When I was the first time by thjs special ophthalmologist, she told me my brain was so exhausted, she couldn't make the nessecay examinations. But after 3 month my brain was better. So I am hopeful!
  9. Dear cmep37, I understand you sooo good. And I am so sorry all what you are experience for so much years! I live in Germany and for long years I was sick and lost in the German healthcare. All doctors told me: You have no dysautonomic disorder, you are to old (50) but I felt so. But than I flew to Prof. Grubb in Toledo, I waited 1 year to this appointment. He saw me and gave me the hope and trust with the diagnosis: autonomic disorder closely related to POTS and autonomic neuropathy. And he took care of me from across the ocean, now for 4 years. And my PSD works with him together. I've gotten infusions weekly for 2 1/2 year and we made a lot of drug experiments in this time. Most of them ended up horrible. But Prof. Grubb and my PCD never gave me up! And now I need not longer weekly infusions, I am very stabile, can stay and walk by myself. But my PCD did everything what Prof. Grubb considered... off-label medications too! So be hopeful, it could be a great challenge but a great chance for you and your PCD too. I have now in Corona tele-health with Dr. Grubb or his Assistent Beverly Karabin together with my PCD. So he can ask them all questions he need to know. I hope you will find a very good specialist soon! With a big hug! 🙌🌺🙋🏽‍♀️
  10. Is there any possibility that your PCP can give you the infusion in his / her praxis? I've gotten 1000ml weekly about 6-8h, so after my PCP connected me with the infusion, I went home with the infusion. It's very easy to pull the infusions out, so I did it by myself everytime... Maybe it could be a possibility for you too? Sometimes I drove 2h in the car with the infusion, when I was far away and needed one.
  11. Be careful with reducing Guanfacin. I take only 1mg in the morning and tried to reduce it two times and every time I've gotten very serious BP-crisis with cerebral symptoms (non-stop vomiting, heavy headache, tremors and intestinal cramps,...) So in my case I can only stop Guanfacin for 24h. Now I will try to change extended release to regular and reduce it weekly very moderate. The regular form apparently works for 4 hours (3x1mg), so maybe it's a chance to change Guanfacin some weeks before you will have this examinations? Please be careful and let your doctors know the danger of cerebral BP-Crisis!!!
  12. I took an abdominal compression for some years. It helped me a lot for some hours to go, to sit and to stand. But for our back muscles it's better to reduce the time, we need it.
  13. When I stopped gluten,lactose and sugar, I felt much better.
  14. I have this always when I am symptomatic. I have SFN and my doctors told me that's paraesthesias, that's normal for SFN. When I get it, it's a sign for to much adrenalin in my body and I have to rest or to be very careful with me. When I eat chocolate or drink red wine I have this symptoms too, so I think it could be a kind of MACActivations too....
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