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CJ65

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Posts posted by CJ65

  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. 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!

  4. @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. 

  5. On 9/16/2021 at 1:21 AM, Pistol said:

    @Scout - has your doc ever considered a calcium channel blocker? Or guanfacine ( Tenex? ). These meds have been helpful in controlling my labile BP's. 

    @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. 

  6. 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!**

  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. 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 

  9. 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!

  10. @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!

  11. 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!

  12. @MTRJ75 I’m so glad you brought this up. I started having glucose instability when I started propranolol last summer. If I eat carbs in morning like cereal I absolutely crash about an hour later with post prandial glucose in 50s and diarrhea (sorry TMI).  Needless to say I don’t do that anymore. My doctor said it is reactive hypoglycemia but it definitely came on with propranolol. It also feels like dumping syndrome but endocrinologist said no. My A1C is normal. Now I only eat protein first meal and i eat before i get hungry, it’s helping. That is interesting that eggs make you symptomatic too…

  13. @POTSie78 I second everything @Pistolsaid! I really thought that I would be able to go back to work and fought my body which made everything worse. SSDI and approval for LTD can take some time so I would go ahead and start the process. Do not be discouraged if you are denied, it sometimes takes a few denials before you are approved. I found a website dedicated to the process of getting on disability specifically for invisible illnesses: howtogeton.wordpress.com LOTS of good information. It really helped me organize myself.  I think that whether your LTD insurer still pays you if you get approved for SSDI is dependent on your policy. In my case I still get LTD and SSDI but the LTD if offset by what I get from SSDI. I hope that makes sense. Please reach out if you have any questions! Start getting your medical records together now, ALL of them so you know what is in there and breathe…you will get through this. 

  14. @Knellie thanks for the info! I see Dr Jaradeh at Stanford so I look forward to the video! In my experience assisting with spinal taps, csf is always clear and “straw” colored unless it’s bloody or infected. Does your leak look like that? Testing it is a great idea, thank you. Very interesting about IIH too. What would I do without the POTS community ??

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