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p8d

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About p8d

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    Female
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    Wisconsin

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  1. I didn’t sleep more than a few hours a night for 2+ years until I was put on teeny tiny dose of mitrazipine. I still have a few nights a week where I wake up early or am awake for an hour or more but getting proper sleep really helps.
  2. Ok, for those of you that have more brain power than me, after reading the most recent article should we try Losartan? Anybody tried it recently? Experiences? I have read many of the old threads and like everything it seems like a mixed bag of experiences. I know I have the alpha a-1 antibodies. Thanks.
  3. My BP drops immediately, HR goes up then BP comes up around 2 -5 minutes standing still with HR decrease, then at 10 minutes BP starts dropping and HR goes back up. This is on lots of meds. I think it did something similar on the tilt (no meds) but that experience was so awful I think I have completely blocked it from my mind. Plus it was 5 years ago.
  4. It lowered and stabilized my BP back into normal ranges even in postural change. My HR was a bit higher but not too much. I felt less fatigue but it lead to insomnia (49% of people get it) and quite serious episodes of rage developing extremely quickly. Another unusual side effect.
  5. @Pistol thanks for the article explaining the actions of these drugs. I have a question that I hope that you or someone can answer. If those of us with hyper POTS have too much noradrenaline and “SNRIs... increase in circulating noradrenaline” how do they help? Do they balance the serotonin/noradrenaline? Or? Like you, I had very good results with Bupropion controlling my BP but had bad side effects. Thanks.
  6. @KaciCrochetsas you know I was diagnosed by the same neurologist as you but referred to a cardiologist in the same group when my hypertension got too bad. He and his NP now work on that aspect of things and the neurologist the rest of my considerable PITS issues. My PCP is playing a larger role because my neurologist is so busy. I agree that the way healthcare is organized by body part impacted is crazy. I have found that more holistically oriented PCPs look at the sum of everything rather than the parts.
  7. Dr Dotson is indeed wonderful but a couple of hours away from Madison and likely not in a network covered in that geographic area if someone has a PPO or similar health insurance. @Potsfighter374 most of us with hyper POTS take an alpha blocker in addition to a beta blacker like metoprolol. You can ask your Dr about them. Those typically used are clonidine, methyldopa and a few of us take guanfacine. Like most meds it’s trial and error for everyone.
  8. I hear you and understand your feelings @Pistol I have had better luck with neurologists I think because they do tend to look beyond just the cardiovascular symptoms as they are more common in other neurological diseases. Having said that, before I was diagnosed (by a neurologist) I thought I had CFS and at the first neuro appointment I asked if she diagnosed CFS and got a very curt no! So apparently they too have diseases they don’t believe in. I had initially asked my then current neurologist for a referral to an ANS specialist because I read a book indicating CFS was related to the HPA axis and he immediately referred me to my current neurologist for dysautonomia. So he knew about it 5 years ago. I have been referred to several EPs (when I was thinking of switching) at several different hospital groups in my area that treat it. I think part of it is because the dysautonomia clinic I attend (EP and neurologist along with several NPs) have done a LOT of outreach in the area for PCPs, cardiologists, neurologists, physical therapists etc. I know they held a sort of mini-conference, a one day affair, with Dr Raj, Dr Goodman and others, including the locals that was attended by 300+ people, Drs and patients but geared for Drs. That seemed to really spring board awareness in the area and I have met other patients and schedulers that know about it. Of course the downside is that now instead of every three month follow ups I have to wait a year because the neuro clinic is so busy! So, keep pushing and spreading the word. It does help.
  9. The times I took steroids for my autoimmune disease my HR went through the roof. While I have hyper POTS with hypertension frequently now it wasn’t that bad when I tried the steroids. I now am on Plaquenil and SCIG for autoimmune diseases, including autoimmune autonomic neuropathy, and both have helped lots of things but BP is still rather wildly unstable. Cardiologist just says it’s dysautonomia and chronic hypertension is bad as opposed to my daily fluctuations but to monitor it. I definitely wouldn’t try the steroids with my present hypertension.
  10. As far as I know there are no Drs in the Madison area. Milwaukee/Grafton have two neuros and a few cardiologists. Please PM me if you need the names.
  11. Hey, welcome back @ramakentesh You were very active and helpful when I was diagnosed in 2015. I, for one, have missed your wisdom. @Aaron_Arkinhave you discussed Corlanor with your cardiologist? It’s not a beta but lowers heart rate quite well.
  12. I agree with both @Pistol and @Sushi I have a neuro NP WITH 25+ years experience in dysautonomia who is simply wonderful. I also have a cardiology NP that I adore. The appointments are 45 minutes with the NP plus 15 minutes for ortho vitals. They are located at a nearby dysautonomia clinic which just happens to be 15 minutes from my house of 30 years. I had a hard time finding a PCP after my beloved one moved to urgent care. I joined the state Facebook dysautonomia community long enough to post the question seeking a new one and found a fantastic one near by who is well versed in dys. She’s associated with the local medical college. I got off Facebook right after because I can’t stand it but in this situation it was vital. Just another idea for you to try.
  13. Until you can get in to see a specialist I highly recommend @Pistol’s advice about fluids/compression hose (you can order them online, even prescription strength) and get the book The Dysautonomia Project. It has wonderful advice on how to deal with symptoms, sections for the patient, sections for a PCP and info for family/caregivers. When I was first very ill, on the advice of my specialist, I always drank a 16 ounce glass of water or Trioral rehydration salts 15-20 minutes before getting out of bed, it really helps. I also put on my compression hose immediately on sitting up. As to a cause that’s still a big unknown for many. Some of us develop autoimmune diseases that cause/contribute to it but not everyone and the only autoimmune tests that seem specific to dysautonomia are not commercially available in the US yet. Keep asking for an ANA test to determine if you have an autoimmune disease—they are notoriously difficult to detect. Treating the underlying autoimmune disease, if you have it, helps but there is no cure as of yet.
  14. I take 1/4 tablet of a 15mg pill so a super tiny dose. I have also had really bad fatigue from several beta blockers and other meds.
  15. My only comment as someone with hyperadregenic POTS is about the mitrazipine. I didn’t sleep more than 3-4 hours a night for close to two years when I first got seriously ill. I tried every sleep med, benzo, antihistamines etc and the only thing that helps me sleep is mitrazipine. I have gone on and off it couple of times since I started it and I, too, experienced serious drug hangovers for about a week or so but I will never give it up because nothing else works and I feel much better after a decent nights sleep. I still have lousy nights 2-3 times a week but I guess that comes with the territory. I take a quarter of a tablet nightly. I always have extreme reactions to meds but if I can at least try it for a week or two they sometimes decrease to tolerable levels.
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