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p8d

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About p8d

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    Wisconsin

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  1. Get this book The Dysautonomia Project. https://www.amazon.com/Dysautonomia-Project-Understanding-Autonomic-Physicians/dp/1938842243?SubscriptionId=AKIAILSHYYTFIVPWUY6Q&tag=duckduckgo-d-20&linkCode=xm2&camp=2025&creative=165953&creativeASIN=1938842243 It’s written for patients, family and doctors that might not be familiar with dysautonomia. Lots of advice on how to live with this. Absolutely exercise, starting slowly is essential.
  2. I get that feeling too. It’s so hard to describe to medical providers. I think tremulous is their term. I had it horribly on my TTT and still get it if I am upright too long. I think it’s when my BP is too low and I have tachycardia. It’s just an awful feeling that sometimes goes along with shaking, sweating, lightheadedness, chest pain etc. I know I had no heart issues on my TTT so I don’t think it’s heart related. I do better if I plan to be upright by drinking some fluid 10-15 minutes beforehand but that sometimes overshoots my BP 😞
  3. Can’t say I understand this entirely but what I do understand is interesting. Very different from current thinking. Baroreceptors in the brain as well as aortic arch https://www.nature.com/articles/s41467-019-13956-y
  4. I am disabled and housebound, won my SSDI on first application which gives you an idea of how hard I was hit at 52 years old. Please appeal the ruling with your lawyer, just about everyone is refused the first time. I hope that you are seeing Dr B in Chicago, he’s excellent. If you aren’t please pm me and I will give you his name. A really great book that will help you and your family understand this illness is The Dysautonomia Project https://www.amazon.com/Dysautonomia-Project-Understanding-Autonomic-Physicians/dp/1938842243?SubscriptionId=AKIAILSHYYTFIVPWUY6Q&tag=duckduckgo-d-20&linkCode=xm2&camp=2025&creative=165953&creativeASIN=1938842243 It includes sections for family, Drs, patients and has good tips on how to manage symptoms.
  5. @Pistol check your BP after the cyclobenzaprine. You and I are quite similar and I have noticed that anything ending in “ine”, including Benadryl seriously raises my BP. The Benadryl really surprised me.
  6. Is anybody seen at Mayo in Arizona? I have some questions. Do they do ongoing care or only diagnostics? I believe they don’t take Medicare? Thanks.
  7. I agree with @KiminOrlando. I have a positive ANA, saw a good rheumatologist and started treatment which was the first thing that helped although not labile BP. Eventually he agreed with my neurologist and cardiologist that immunoglobulin therapy was warranted. I also had the Celltrend test (Germany) which came up positive. There’s a LOT of recent literature showing a link to autoimmune markers for many of us.
  8. Yep, blood pooling. I only take quick lukewarm showers anymore. I still get it but not as bad if I take a hotter shower, that would really make me ill.
  9. Oh @Pistol I am so sorry. I have been, and continue to be, in the same situation. I guess it depends on what type of pain it is. I have done fairly well with gabapentin for joint and nerve pain but everything except alprazolam for my neck muscle pain raises my BP. I have tried Skelaxin, orphenadrine, cyclobenzaprine and a couple of others in the muscle relaxant class. Tramadol also raises my BP. My Drs don’t like me taking benzos so I very, very rarely do. Massages and hot packs at PT once a week help for a day or two and I am considering a home massage therapist once a week too. Take care and I will be thinking of you.
  10. I think I read some medical article that 80% of people with POTS do not pass out. I never have in 5.5 years. My neurologist did my TTT and they don’t give the nitro but I failed spectacularly anyway. The test was truly the absolute worst experience of my life. They have occasionally wanted to repeat it but I will not submit to that again unless there’s a really, really good reason. My catecholamines are elevated so I am hyper POTS and take alpha blockers to help with the adrenaline surges. My neurologist, a dysautonomia specialist who used to work at Mayo told me to not take benzodiazepines so I never have since diagnosis. I know many people do take them. Before my hypertension got out of control the one thing that raised my BP and therefore lowered my HR in the morning was to drink 12 ounces of water 10-15 minutes before getting out of bed.
  11. I get them randomly too. Cardiologist isn’t worried. It lasts 15-20 minutes unpredictability but more so if I have been upright for longer than 10-15 minutes.
  12. Oh @Pistol I am so sorry that you were in ICU for a week. Yikes. That’s scary that the nurse withheld your meds! You are a nurse and know so much about your condition and treatments that I am surprised (but not surprised) that he did it. It’s so difficult dealing with medical personnel that think they know our bodies better than we do. I hope that you are doing better now.
  13. I have found that giving the meds a good 3-4 weeks and starting at tiny doses and increasing helps the fatigue. Clonidine really tanked my BP too.
  14. Can you try methyldopa or guanfacine for the adrenaline? I found that methyldopa in particular did not lower my BP but did help with the other symptoms.
  15. @Clueingforlooks I still have lots of trouble with hypertension from doing anything much, talking on the phone, being upright, getting stressed because of filling out forms, dealing with insurance/pharmacies etc but switched the alpha blocker from clonidine to guanfacine ER. The docs thought part of the trouble was rebound hypertension from the clonidine. We have increased the beta, carvedilol, and I take a small dose prior to activity but it’s still a lot of reacting, including fluid loading at times. I started limiting fluids and completely stopped salt which lowers BP but my latest kidney function tests showed probable dehydration so... I did a 24 hour blood pressure test that clearly showed the rise in BP while upright—161/93–but it went back down after sitting down and the overall balance of highs and lows was ok which is how they determine if it’s good control of BP or not for normal people. We are not normal and I doubt I ever will be again. Weather is a big influence on low BP so at the moment I am not dealing with that too much unless I have been upright too long or haven’t had enough fluid. I am sorry that you too are struggling with this, I hope that you can find a better balance than I can.
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