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CJ65

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  1. Oh no @Pistol ! I’m so sorry to hear this and also happy to hear that you are all on the mend.
  2. Hi @Scout Baroreflexes buffer our blood pressure preventing wide variations in BP. Baroreflex failure can occur after neck surgery like carotid endarterectomy, radical neck dissection or radiation. Certain genetic conditions and brain stem stroke can also cause it. It is characterized by severe range blood pressures and lability, tachycardia. They can tell definitively if you have it during autonomic testing. David Robertson and Italo Biaggioni from Vanderbilt are experts. They wrote a great article called “The Four Faces of Baroreflex Failure” which is available free on the American Heart Assn website. Baroreflex impairment is common in autonomic disorders but true failure is rare. I have baroreflex impairment from damage to my right glossopharyngeal nerve (CNIX) during cervical spine surgery. This nerve ennervates the baroreceptors in the carotid sinus and and the aortic arch. The vagus nerve as you mentioned also plays a role. The message in my case, from baroreceptors to brain is interrupted (afferent pathway) so my brain sends me into sympathetic overdrive, BP extremes etc. I don’t have full blown failure because my left side works but it’s still a bear to control and i can have pressures in 240s/120s but fortunately with alpha blockers, beta blockers and calcium channel blockers (ALL the blockers haha) I have better control. Another article worth checking out is Baroreflex Dysfunction by Kaufmann et al in The New England Journal of Medicine January 2020. I hope that you don’t have true failure and I hope that you find some relief soon. **oy my brain, I just realized I replied to an old thread!**
  3. Thanks for the tip @dancer65! I will definitely check that out
  4. Guanfacine has been better fatigue-wise than Clonidine but still makes me tired. I can’t live without my alpha blocker! My BP is still labile but not in 240s/120s anymore thank goodness as long as I can control stress, rest etc
  5. Guanfacine and Propranolol keep HR and BP 150s/90s and hr 70s-100 unless I have any stressors or I’m late with meds
  6. Carotid endarterectomy and radiation are both risk factors for baroreflex impairment. Do you have labile/high BP too?
  7. My dysautonomia started after neck surgery where my glossopharyngeal nerve (cranial nerve IX) was damaged, specifically the sensory/afferent pathway. Branches of this nerve ennervate the baroreceptors in the carotid sinuses and aortic arch. So when I stand, the message from baroreceptors to brain is interrupted and my brain thinks I’m bleeding out = hello sympathetic overdrive! I mention this @MikeOand @Teodorbecause surgical trauma to the neck or radiation can cause baroreflex impairment/failure which you probably know. There are case reports in the literature if you search baroreflex failure. Theoretically the un damaged side should override the aberrent messages leading to homeostasis. All that being said I am not sensitive to barometric changes but postural changes for sure.
  8. Thank you @Chiara. Yes I’m aware of the dangers and I won’t do that again 😬
  9. Thanks @Pistol. Yes not ideal, I did wean a bit. Interestingly this is the 3rd major POTS center that had me hold meds for testing. Now I need to know your secret to getting off Guanfacine!
  10. Hello Im enrolled in a POTS exercise study and had to be off meds (Guanfacine and Propranolol) for the assessment. It has been a while since I’ve done that and I felt so sick. My BP was up to 220/126 and HR in 150s, couldn’t sleep, the “buzzing” and pain were rough. How do you all get through situations like that? Ill have to repeat it again and would love some tips. Thank you
  11. I’m so sorry you are going through this! I ended up hiring 2 attorneys, one for SSDI and one for my long term disability insurance company because I was denied multiple times. Regarding SSDI almost everyone gets denied the first time so keep at it. It is worth having a discussion to see what your options are. I am not sure what the rules are in Ohio so check before proceeding but in California if you hire an SSDI attorney you won’t have to pay them unless you win and then it is a max amount of $6000.00 which comes out of your retroactive pay. Private disability insurers will challenge your case and deny so if you can do it hire an attorney. I finally hired one after 2 years of trying to do it on my own and it was the best thing I did. At the very least they can advise on the best course of action. They also take over communication with insurer so you can focus on your health and not increase your stress level which makes you sicker! There are resources on DINET about disability that are helpful. Feel free to message me if you have questions. Good luck!
  12. @Bobannonif it makes you feel better I was also sent to cardiologist when I first got sick who was an EP and she told me I couldn’t have POTS because my BP rose when I stood. To her credit she called me that day to take back that statement. Then she referred me to autonomic specialist (9 month wait), prescribed clonidine and sent me the Levine exercise protocol and told me to do it with absolutely no instruction. Fortunately my primary manned the ship while I waited to go to Stanford and she and the cardiologist communicated directly with Stanford for guidance while I waited to be seen. Fortunately appointments opened up and I got in in 6 weeks with a different clinician. Call the office and ask if they use a waitlist for cancellations. Ask your family doc if she can communicate with EP and like @Pistol said give your primary a list of exactly how you feel. Use concrete terms and data like your HR and BP readings, changes from your baseline etc. You described it beautifully in your post. Doctors are constantly under time pressures so clear cut info helps them. If you are feeling worse don’t worry about being a squeaky wheel. Good luck!
  13. Hi @Bobannon I don’t have answers for your excellent questions but I do want to say that the diagnostic process is absolutely anxiety provoking, and I think everyone here has felt it at one time or another. It’s so hard to get thoughts organized when your body is working hard to stay upright. AND trying to get your questions answered during a time-limited face to face with your provider! Can you email a list of questions to the different docs? I imagine your heart rate decreasing is because of the beta blocker doing what it’s supposed to do. You didn’t mention blood pressure-do you know what is happening with that? Can you monitor it at home? Some POTS patients respond well to beta blockers and some don’t at all. It does take some time to adjust so you may need to see if your symptoms improve. Feedback to the prescribing MD is important so they can adjust dosage or medication if needed. It’s a lot of trial and error to find the right medication and treatment regimen. I think your visit with autonomic specialist will be very helpful. Hang in there and keep reaching out to your medical team and to your POTS community!
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