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CJ65

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  1. I had a good experience at Vanderbilt with Dr Biaggioni and his NP Megane. I went to rule out baroreflex failure and Dr Biaggioni is one of the experts. Vanderbilt is one of the top places to go for dysautonomia so I would keep the visit. Since my appointment they have been great about answering questions. The only hiccup was I didn’t get clear instructions on holding meds for the autonomic testing. I did know from previous testing that I needed to hold but clearer instructions would have been beneficial. I’d jot down some questions beforehand and bring with you since it’s tough to think clearly when you’re off meds/stressed. I was also able to get visit notes soon after to bring back to my team in CA. Testing is tough but it can help us get clarity if you can power though.
  2. Hi @Bailee you should definitely give that feedback to your PT and MD. In some ways this is similar to a program i am doing except the schedule is in intervals. So my first week I did 5-10 mins on recumbent bike warm-up followed by 4” cycling with some effort (as tolerated) then 3” active recovery at easier pace. This is repeated 4 times then another 5-10” recovery. It increases gradually weekly so the active intervals get longer. I feel worse and that is expected but it is getting better. I don’t think I could go full tilt for 25” to start off. It’s so hard to get going but it should make us feel better eventually, that’s what I keep telling myself when I want to get off the darn bike and lay down!
  3. @Pistoli knew you’d have great advice, thank you!
  4. Thanks @CallieAndToby22 great advice! I’m going to try 1.5mg tonight instead of 2mg and will watch for several days. Fingers crossed!
  5. Hello All I’ve been on Guanfacine for several years. It’s the most helpful drug in my arsenal but still makes me extra fatigued. I’m on 1mg am and 2 mg pm. Have any of you weaned Guanfacine? If you have how did you go about it? Cut pills? I put in a message to my NP at Vanderbilt and of course I’m asking you all since you’re the ones experiencing the wean! thank you and happiest stress free holidays!
  6. @Pistolthat is so encouraging to hear how you’ve improved! Infusions don’t help me unfortunately. Did you wean Guanfacine after starting Diltiazem? I’m so dang tired on 1mg Guanfacine am and 2 mg pm, it’s hard to function. Now that Diltiazem is helping, I would LOVE to wean Guanfacine but I’m afraid when I remember the sympathetic overdrive insanity before I started taking it.
  7. @Scout I think many of us have some degree of baroreflex impairment so you don’t need to have the neck or genetic component, but for true failure, those are likely culprits. Labile pressures are so hard to get a handle on, I totally agree with @Pistol about trying a CCB I just started Diltiazem in addition to Guanfacine and propranolol and the CCB is making a big difference for both HR and BP.
  8. Oh no @Pistol ! I’m so sorry to hear this and also happy to hear that you are all on the mend.
  9. 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!**
  10. Thanks for the tip @dancer65! I will definitely check that out
  11. 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
  12. Guanfacine and Propranolol keep HR and BP 150s/90s and hr 70s-100 unless I have any stressors or I’m late with meds
  13. Carotid endarterectomy and radiation are both risk factors for baroreflex impairment. Do you have labile/high BP too?
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