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CJ65

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Everything posted by CJ65

  1. @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.
  2. Oh no @Pistol ! I’m so sorry to hear this and also happy to hear that you are all on the mend.
  3. 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!**
  4. Thanks for the tip @dancer65! I will definitely check that out
  5. 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
  6. Guanfacine and Propranolol keep HR and BP 150s/90s and hr 70s-100 unless I have any stressors or I’m late with meds
  7. Carotid endarterectomy and radiation are both risk factors for baroreflex impairment. Do you have labile/high BP too?
  8. 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.
  9. Thank you @Chiara. Yes I’m aware of the dangers and I won’t do that again 😬
  10. 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!
  11. 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
  12. 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!
  13. @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!
  14. 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!
  15. @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…
  16. @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.
  17. @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 ??
  18. Hi @Knellie yes elevation is a bear for me, you are not alone. Its also hard for some people with no other health issues. I get some of the symptoms you describe when I go to Tahoe (6000 ft) from Bay Area. 10,000 feet is way up there! People who live at higher elevations adapt to that environment over time and develop higher levels of hemoglobin and number of red blood cells (hematocrit). The body also gets better at hanging onto oxygen in low oxygen environments (oxygen dissociation). At sea level we breathe 21% oxygen and at 10,000 ft it is equivalent to about 14%. It is no wonder that your saturation was lower. The bottom line is you need time to adapt and work your tolerance up slowly. The good news is once your body adapts and you have changes to your red blood cells those effects last and your RBCs have “memory” as long as those cells live which is about 120 days. This info is available in many reputable places online. I have used research from The University of Colorado when I taught about oxygen carrying capacity for the fetus and newborn. Lots of good research there. I’d love to know more about your nose issue because in the last few months mine also runs uncontrollably on right side when I’m upright and active, it isn’t allergies. What the heck is that??
  19. Fantastic letter. I saw Dr Biaggioni and send him questions from time to time which he or his NP answer. Have you asked them about Northera? I’m sure they could give great input. Best of luck
  20. @racingheart77Are you talking about Takosubo syndrome? I teach/taught about this in regard to grief. It is a documented form of cardiomyopathy. I have not heard about this for POTS patients in general. This may be a trigger for anyone experiencing loss but I will provide an example. My friend lost her newborn son. She knew he had a lethal condition before he was born. After his death she had chest pain and her arms hurt for months. She had Takosubo syndrome. One day they were planting a tree for him and her dad handed her the pot with the tree. It weighed about 8 lbs. Suddenly her arm and chest pain went away. She was literally aching for him. She created a program called the Comfort Cub which are weighted bears that moms could hold and take home so their arms aren’t empty when they leave the hospital. They are now used for all kinds of grief and trauma. So Takosubo is a very real manifestation of grief.
  21. @CallieAndToby22 I’m so glad you are feeling better (at least from the vaccine standpoint)!
  22. @MTRJ75 I love your questions and the way you group the possible mechanisms of action. I am an example of actual physical damage leading to POTS. During my cervical spine surgery my 9th cranial nerve -the glossopharyngeal nerve was damaged. This nerve ennervates parts of the throat, posterior tongue and carotid baroreceptors among other things. My efferent (motor) pathway coming from the brain works so I can swallow etc. It took 2 years for me to realize that I had no gag or feeling in my right throat. A scope showed my afferent pathway was damaged. The same pathway that comes from baroreceptors back to the brain. My brain thinks I’m bleeding out so it throws sympathetic NS into overdrive. It’s not baroreflex failure but definitely impairment. So when people tell me I can rewire my brain I want to know: if the nerve is cut and hasn’t started working in the last 5 years how the heck can that be rewired? I don’t believe it can. And so I slip into the acceptance that this is as good as my health is going to be: limited, chronic and I try to find joy and hope where I can.
  23. Yes. My pain is more inflammatory in nature to joints and pretty bad myofaschial pain to upper back. Definitely worse after sitting and when I do too much. POTS and all of my issues started after cervical spine surgery. Unfortunately I still had pain in my neck and arm post op plus the new added hyperPOTS bonus. I have tried all the pain modalities with some relief that makes it bearable for the most part. That includes: mindfulness, ice, heat, acupuncture, massage, trigger point injections, epidural, TENS unit, foam roller, Qi Gong, yoga, PT, cymbalta (I had very bad serotonin syndrome reaction and horrific withdrawal before I knew I had hyperPOTS), NSAIDS (can’t take anymore because of my BP), Gabapentin etc etc. What helps me most daily is gentle movement (my PT says “motion is lotion for the joints), resting as needed throughout the day (if I push through fatigue and don’t rest all of my body hurts-listen to your cues), and when it gets worse later in day I often take Tylenol or Tylenol with codeine. I’m not advocating for opioids in general but I've been taking the same low dose for a few years now without a problem. Probably the most helpful thing was early retirement/disability. I fought doing that for 3 years because I loved my career but in the end it was the best thing to do for all of my symptoms.
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