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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. One of two things that helped me in similar circumstances was bringing family to Dr appointments and having the Dr explain it. My husband came with me for the first several years and my neuro NP always asked him as well as me if we have questions. The other thing that has helped a lot is getting people to read The Dysautonomia Project book. It has sections specifically for family/friends and another for Drs. It helped me understand what is happening and has definitely helped my family understand. This illness is so difficult day to day that having people doubting is just unconscionable. I am so sorry that all of you have experienced this. At least we have each other.
  2. I do subcutaneous IG weekly at home. No sitting for hours in an infusion center, no bad side effects. I have autoimmune disease and my Celltrend results show one positive. My neuro and cardiologist both are positive my dys is autoimmune. It helps lots of things but not yet my BP or HR very much. I credit it with my improving condition overall but I am still very limited. Having said that I would be loathe to stop it.
  3. @DizzyGirlsI did very well on Bystolic, a selective BB, for tachycardia. I went off of it very reluctantly because we needed better control of my hypertension so I was switched to Coreg and ivabradine. The Bystolic did not lower my BP so it might also be an option for your daughters. The Coreg is great for BP but didn’t quite deal with the tachycardia so we added the ivabradine. The ivabradine is very effective for me.
  4. I went through the exact same thing when I was awarded SSDI. First relief then depression because it’s official that I am permanently disabled. I just had to renew my parking permit and the Dr ticked permanent and after 4 years on SSDI that still was difficult to see. I don’t think about it much anymore but it is still hard when you do.
  5. I am housebound and live in the states. Hubby is going to see his mum in England in the autumn and will buy me one. They aren’t available here. It’s expensive so I was hoping someone might have tried it. I know vagus nerve stimulation was effective with MS. This specifically mentions the ANS.
  6. I am considering having my husband pick up this https://www.parasym.co/ on his next trip to the UK. Has anyone tried it? Thanks.
  7. Thanks for the response. I am thinking of having my husband get one of these units specifically for tvns https://www.parasym.co/ when he is in the UK. We shall see. The research devices have good success with autoimmune diseases.
  8. Mine jumps all over if I don’t stay still and rest it on something.
  9. I don’t remember, it was checked when I was diagnosed 4 years ago. I think 1600-ish upright at that time. I don’t remember the reference range for the lab. I think it’s higher now but don’t want to stop the meds to be retested. Sorry.
  10. A few things I experienced but a question for @Sushifirst: what symptoms do you get because of “too high vagal tone”? I have been on clonidine twice. The first time when I was more classic POTS and less hyper POTS it was ok. I don’t recall exactly why I went off. I think because it was wearing off fairly quickly and the dose of the patch was too high and really dropped my BP in the mornings. The second time was last year and that was a total disaster. I kept needing higher doses to bring down my BP and then suffered extreme rebound hypertension when it wore off. I am talking crisis territory every day. The patch was the same, I needed higher and higher doses and had to supplement with pills at times. I swear it was like my body was addicted to it. The rebound hypertension was very scary. I couldn’t lay down to sleep because I had supine hypertension. I had to wean off my beta blocker before I could wean off the clonidine so the two plus weeks I had to do this were terrible. I started guanfacine ER which is pretty good at controlling the surges but doesn’t do anything for my BP which is what methyldopa did too. I now take Coreg for BP control. It’s a BB. It works pretty well but I still get hypertension sometimes so am currently increasing the dose. I really want to try IV fluids and will be asking my Dr soon if I cannot stabilize soon.
  11. This isn’t related to POTS specifically but is still relevant as it discusses sympathetic and parasympathetic nervous systems. I think Vanderbilt is/was doing a study on this technology in pots. https://www.aging-us.com/article/102074/text. Anybody tried it?
  12. I am hyper pots and the higher my BP goes the lower my HR gets. It only occasionally gets in the 40s, I only have caught it laying down but it gets down to the lower 50s when BP is >145 sys. I just figured it was normal for non-normal me.
  13. @HangingByAThreadI would love to hear of your experience. I am not able to travel very far. @Valymight I ask where you are located? My electrophysiologist has two NPs named Amy and Nicole. I don’t think that can be coincidence. I am in the Milwaukee area.
  14. Hi everyone. Does anyone else get headaches from the sunshine? It seems every time I go out in the sunshine even with sunglasses and no matter the temperature I get headaches. Any one know why? Thanks.
  15. I have been using my Concept2 that hubby bought me for Christmas 2.5 years ago and love it. No valsalva reactions at all.
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