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CJ65

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  1. Hi Muon I came across this article from last year by Dr Miglis at Stanford. Is Postural Orthostatic Tachycardia Syndrome an Autoimmune Disorder? And Other Updates on Recent Autonomic Research https://link.springer.com/article/10.1007/s10286-019-00661-5#citeas Not exactly summer reading but very interesting. There is some discussion about specific andrenergic receptors and clinical significance/expression.
  2. I get it if I really push myself physically. Thanks for bringing it up, I thought I was the only one!
  3. Hi @CDNPortGrl I should have clarified that the post spinal pain is all headache, caused by leaking csf from the puncture site. When the normal pressure bathing the brain in csf drops = wicked headache. It’s not supposed to happen with epidurals but sometimes it does.
  4. That’s great to know @Pistol. I do allude to long haulers when I explain what POTS is to family and friends. Even my closest people’s eyes glaze over when I try to explain my illness but now that most of them have read about long haul Covid they seem to understand now that healthy people can turn into chronically ill people in a flash.
  5. @CDNPortGrl when you had the blood patch was it because you had terrible headache after spinal anesthesia? In my limited experience being around post partum women with blood patches (I’m NICU nurse), it seems like that type of leak reoccurrence would cause pain. Is that correct?
  6. @Pistolthis is very interesting. In addition to my regular POTS dizziness I get waves of vertigo lasting a few days at a time. When I mentioned it to my autonomic neurologist on Zoom he said “vestibular migraine” and just like that it was in my chart in my list of diagnoses. I’m so glad you brought this up because I want to know more about migraines with POTS, too
  7. @dancer65 it’s so good to hear some good news! What a windfall to have a practitioner who understands POTS and to get some relief from the adjustable bed. Thank you for sharing
  8. Ok got it. The catecholamine tests are very hard to get right at lab. The first time I had them drawn I talked a very nervous nurse through how to do it and thought we were golden…until I found out she put it in the wrong tube! Waiting to see an autonomic specialist feels like an eternity and IS with the backlog, hoping you get some answers and relief soon. I’m guessing by your low BP that an alpha agonist may not be what you need so I apologize for suggesting that. The good news is there are so many things still to try.
  9. @CallieAndToby22 gosh that sounds so awful! Forgive me if you already said this but have you had catecholamine levels tested? I can’t remember if you said you have hyperandrenergic POTS but those surges you mention are common with HPOTS. And have you ever been on one of the alpha 2 agonists like Clonidine or Guanfacine? They are so integral to controlling adrenaline/noradrenaline surges for me personally. Other adrenal work up might involve a urine VMA test, imaging your adrenals to rule out pheochromocytoma etc but maybe you’ve already done all that when you were first diagnosed?
  10. @toomanyproblems and @Pistol Wellbutrin is neither SNRI nor SSRI. It’s in a drug class called: aminoketones. Maybe that’s why we can tolerate it better than straight SNRIs?
  11. I can’t live without Guanfacine for my HPOTS. I tried Clonidine first but it knocked me out. Guanfacine is less sedating but still adds to my tiredness. At one point I took 2 mg at night and 1 mg during the day which helped with daytime sleepiness, but I’m back to 1.5mg twice/day. It didn’t help get my heart rate down so I take propranolol for that. There is a hyperandrenergic POTS group on Facebook that I found very helpful, lots of posts about Guanfacine. @Elizaangelica good luck!
  12. @Elizaangelica we see you, we hear you! I ask myself the same questions every day. Is this really as good as it gets symptom-wise? I remember my autonomic specialist telling me that I would improve. In my mind that meant a return to my previous level of health but that is far from where I am today. I’ve learned to honor the small “wins” like having a day with my BP and HR in relative check, or having enough energy to play with my grandson or run an errand outside the house. Some days getting dressed is a win. And some days I’m just mad at my limitations. I was reminded this week that I can’t push my body or I will pay. I was feeling ok and got cocky-I had one activity every day (dr appt, friend visiting, etc) I pushed through and didn’t rest enough and now I have an infection. One step forward, two steps back. I do/did get improvement in some symptoms with the right med regimen, when I took an early disability retirement and when I listen to my body. Counseling,meds and mindfulness help my mental health and sometimes only a good cry will do. And communities like this to remind us that we are not alone ❤️
  13. @Bobannon @Pistol @p8d wow this a lot of great information. I was also just diagnosed with NAFLD which seemed to come out of the blue and I have chronic joint pain made worse by activity. I don’t mean to go off topic I just want to thank you all for mentioning this. It seems like I spend all my time getting HR and BP in check and the other symptoms take a back seat. This info will help me to initiate a discussion with my medical team.
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