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Teodor

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  1. I went to my cardiologist yesterday. The electro and the echo cardiograms came back normal so i was sent back home. I dont know what is wrong.
  2. What are the medicatications or lifestyle changes that gave you the most improvement?
  3. https://neurosciencenews.com/calf-muscles-dementia-19069/
  4. I am the same. My bpm always elevates more when i try to straighten my spine and my neck to a normal posture.
  5. It's been 2.5 years since I stopped benzos and I was put on an antipsychotic (chlorprothixen) to help me sleep. Ever since I started this medication I stopped getting shortness of breath when my heart races. It's like this drug disconnected some feedback part of the ANS that connects heart and the lungs. I also stopped feeling my heart into my chest when it races, it beats fast but like squished and weak, not that strong and full capacity noticeable beats like it was before. I noticed that in the first days of taking the drug when I had an event that I nearly died. I was walking outside when I suddenly begin to shake in cold sweat. No shortness of breath, no feeling of strong pounding in my chest like it used to be. So I immediately pressed my fingers on my neck and my pulse was like 200bpm. Fast forward 2.5 years after the event, I am off this drug 6 months and this problem persists, my brain didn't recover. I take magnesium but it doesn't help, I tried to raise my blood pressure, it only made it worse, still I don't feel my heart in my chest when it races and no shortness of breath so I have to constantly check my pulse in my neck. Does anyone had such reaction to drugs, or is this dysautonomia worsening with age?
  6. I am extremely weather sensitive too. I had no problems with the weather when I was young and healthy. I still can't understand how such a small change in barometric pressure can throw the ANS in such a messed state. Maybe it has become extremely sensitive and overreactive, but in my case I am wondering could this be a result of baroreceptor damage instead, because the doctors found I have hypoplasia of the arteries in the neck that is most probably caused by the EDS.
  7. Thank you very much for the thorough answer! I have EDS and dysautonomia and many other complications and I think what I am experiencing is flare episodes and not benzo waves because I stopped them two years ago and never really recovered. Is there any known cause, like what exactly is happening with the ANS when it stucks in a flare episode?
  8. I see a lot of people here use the word "flare", what do you mean by that?
  9. I was on 20mg propranolol (10mg morning, 10mg night) for two weeks. I wanted to try it because my old beta blocker doesn't do much. But instead of making things better the propranolol made my pots worse, so today I had to switch back again to my old beta blocker (Bisoprolol /Concor) 2.5 mg that I am on for two years. I'll call an endocrinologist tomorrow and make an appointment to check my blood hormonal levels, I hope they show something. I'll update my post with the results when they're done. Thanks again for the info and support!
  10. Thank you both very much for the replies! Yes I suspect it's more of a hormonal problem, and I suspect I am in adrenal crash from a long time. My doctor prescribed me propranolol for the dysautonomia and remeron for sleep, but I am getting worse, pots is worse, remeron stopped working. If I do get to sleep I always wake up after a few hours not only unrefreshed, but also in fight or flight mode every day. I don't have sleep apnea so I am still wondering what triggers the stress response while I sleep. I am also 100% sure this exhausted my adrenals, because I have all the symptoms and I have really bad crashes during the day. This is going on for 17 years, plus I am in benzo withdrawal the last two years, never recovered. Delta, can I ask what medications you're taking and what helps you for the blood flow?
  11. Hi there, I'm 36 yo and have vascular ehlers danlos syndrome. I have a question that is bothering me for many years: why most of my dysautonomia symptoms, including pots and the severe fatigue miraculously disappear at night time? Can anyone relate?
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