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  1. Nothing quite like it, in my experience. Take your pain seriously, give yourself all the time you need and can to grieve your beloved Callie and be gentle with yourself. I am so so sorry.
  2. I am totally fine (in terms of the jab and its side effects) and have been for a couple of months now. Really glad I had it/them, and also glad the post-vax misery is over too. Yup. Agreed. It is a tricky path to tread. How are you doing @Nin?
  3. @Heartbroken--glad you wrote that letter. It is a very responsible stance. It is so easy, especially when we feel overwhelmed with symptoms and exhaustion to just trust someone in authority. But you are taking care of yourself by asking the obvious questions and not acting until you feel like the recommendation is right for you and your body.
  4. I think this is excellent advice. Our 'cases' are often incredibly complex and while we pay enough and have reason to hope (even expect) that our doctors will have a handle on the details, my experience is that much more often than not, they fail to comprehend all the bits and pieces. Which it sounds most definitely like has happened in your case, @Heartbroken. In general, unless something makes sense to me in light of the specifics of my body, I am not going to take it. I ask for explanation--in your situation, how is a drug that raises BP and norepinephrine not dangerous to someone for whom both are high?--and unless I really understand why it isn't risky or why it should produce a desired result I decline.
  5. Oh my....how incredibly upsetting and frustrating. If you have to explain dysautonomic dysfunction, you are already in dangerous territory. This one sounds like worse than a bust. Walk, no run (you have loads of adrenaline, right) as fast as you can in the other direction! You have probably considered this (follows in a bit), but I happened on this thread because I am trying to make sense of a lot of adrenaline in my life. My illness started with exhaustion followed by an absolute inability to sleep. Or stay asleep. I'd be awakened at all hours if I was lucky enough to fall asleep by what felt distinctly like a surge of adrenaline. Over the years, some kinder doctors thought it was cortisol, and maybe sometime it was. Much was done to modulate the cortisol, but I have felt extremely wired but tired for years now. It never ends. I too take tons of stuff just to get the minimal amount of sleep I can. Recently I have seen a dysautonomia specialist who thinks I have both POTS and NMS, but most of my symptoms come from the latter. This has been surprising to me since I have never fainted. But I guess I come really close about 12-15 times a day. Yesterday I got results of a catecholamine test (what a trip with the tech, like everyone else who has done this!) and finally put together that I am on a grand see-saw multiple times each day: blood pressure dropping precipitously, coming really close to fainting (and of course I have developed a long list of countermeasures, mostly unconsciously) and then my body releases masses of adrenaline in a last ditch attempt to keep me from keeling over. My epinephrine is high supine (and I do have pre-syncope while lying down) and super high upright. So...I offer this as yet one more thread to consider if you have not already. Which is the greater likelihood. Glad no PCOS for you @CallieAndToby22. One small mercy.
  6. I got Pfizer and as far as I know do not have hyper-POTS (expecting confirmation of that today or tomorrow). The first jab left me bed bound for eight days. Really not good. But I consulted with three different doctors, including two dysautonomia specialists, who all urged me to get the second. I had very few side effects from the second---less, in fact, than I was led to believe the average person might have.
  7. I have used THC medically--for sleep--for about five years. I use edibles, in conjunction with melatonin, because their effects come on more slowly and last longer than any other form of ingestion (ie, smoking) and because I can be fairly precise about the dosage. I started off with tinctures, but found over time that edibles work better for me--again, I think they take longer to kick in and stick around a little longer. The one challenge (other than procuring them now that I no longer live in Marijuana Mecca --CA) is a very occasional accidental overdose. When I make that mistake, I get high, which I abhor. And have to suffer through a couple of hours of lying awake being stoned. But most nights it ratchets me down and then the melatonin puts me out and I stay out. Which is a big deal for me. I haven't used it for anything else, and would be wary about it, since I hate being high so much.
  8. Did it come down, @E pots? It is just so frustrating and scary to have the regulating mechanism for something so critical as the heart completely out of whack. Mine has been coming down fairly quickly of late, but I am feeling pretty good (relative to how I feel at other times, not relative to other people!). But when I am having a flare, it takes a while. I hope you are better this morning.
  9. I tried an Aspen too, @RecipeForDisasterand with similar results. It really seemed like a great idea since we were all pretty sure that at least some of my worst symptoms were a result of CCI. Turns out --upon more investigation--that I actually have rotational AAI and not CCI--so the collar makes even more sense because it prevents inadvertently rotating too far. Can't rotate much at all, can you, in a hard collar? But while it gave me a sense of security when I first put it on, after a while--maybe a half hour--I would always start to feel worse in a systemic way. My vision got blurry, more dizziness, etc. Someone --I think a chiropractor--suggested that it WAS the chin piece--that it forces more extension than my cervical situation could handle. Since then I have learned that I have a fair amount of stenosis, so I wonder if the angle the collar imposed created pressure on cervical nerves. It sure sounds like something that could be happening for you. Or similar. I just stopped using mine. I mean---what can we do but go with what works and discard that which does not? Your neurologist may know a lot but can't crack this mystery (or isn't sufficiently interested) and frankly, this is a familiar response to something a doctor cannot unpick: go away, you are imagining things, don't waste my time. It is unsettling to encounter, but we all know that there are vast realms that medicine does not yet understand and we have to honor what is clear evidence in our own bodies.
  10. Exactly! Like everyone else here, my heart rate goes over 95 when I sit up sometimes. Taking a shower or washing dishes can get me into the aerobic zone! But then if I try to get it higher, as the neurologist suggested, I end up coming very close to passing out. And if I do manage it for a few moments, it does, as you note, come with serious consequences. Just a little baffling... Thanks for your response!
  11. I wonder if anyone has encountered anything that might shed light on a current dilemma for me. I saw a cardiologist who sees a lot of dysautonomia patients and he told me (POTS and NMS) to do salt, water, compression garments and keep my heart rate under about 95 (I am 64 and the max should be around 155). I then saw a neurologist who specializes in dysautonomia --my original appointment but I wanted to be sure I did not have any organic cardiac problems--and he tole me to do salt, water, compression garments and to get my heart rate up to 155-160. This is not plaguing me: I can only do what I can do. But I was just curious if anyone had any thoughts or insight on this potentially rather wide variance in advice. Thanks
  12. I have used, with some success, something called "Cortisol Manager' -- a supplement by Integrative Therapeutics. I have the same experience and this has helped calm it down some. Not a panacea, but a tool. It is awful, and I so sorry that you are dealing with this, as well as any other symptoms since you had Covid, @Churt
  13. @RecipeForDisaster--how is the collar going today? (They ARE uncomfortable, to be sure!) Do you have any diagnosis of pathology in your cervical spine? Have you had imaging done? I am guessing not since you said the doctor is 'just throwing stuff out there.' I have tried a range of collars (in fact, I have this amusing notion that I should mount my collar collection on the wall like some avant art piece) and none of them have really done much for me. I have used the Aspen when in really dire shape and it does help a little--I think the stabilization is of some value. I also get better with traction (comfort trac or PT) and I thought a collar would be super helpful. In my case, I finally got the imaging that showed I do not have cranio-cervical instability (though I am near to that range) but I do have some atlanto-axial instability which is horizontal. I still haven't figured it all out, but it feels to me as if the collar holds my neck in a way that is NOT good for my particular instability. I know a lot of people get benefit out of wearing a collar during car rides, when the vibration and the bumps can exacerbate things. And I imagine you have also gotten the advice not to wear a collar for more than four hours a day? I think that is standard--doing so ultimately weakens the neck muscles which will make things worse in time. I guess that in addition to the immediate feeling of wearing the collar I would look carefully at overall symptoms and see if you have any improvement at all. I did have some, especially in a bad flare, and that was important diagnostic info--demonstrated that some of what I was dealing with originated in my neck. If you have not had it done already, that would seem to be a good next step if you can swing it--see if you can get some MRIs, particularly in flexion and extension.
  14. Sounds like something I call 'The Iron Maiden" @MTRJ75 ! It is always worst around the head neck and upper torso, but mine spreads too until I feel like I am literally inside a torture chamber.
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