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  1. @KiminOrlando Those are all good questions and I wish I knew the answers. I always disclose it and almost never get any kind of response from my doctors. But I don't have SS or other disability to worry about. Your post made me think to share a couple of things that have helped me, because of course--most of us do need a benzo, at least from time to time and getting them can be difficult. I was told by a functional doctor (and I have no certitude about this so someone who knows more can counter it) that Valium and Valerian are very closely related. Probably one the inspiration for the other. In any case, I have found Valerian to be somewhat helpful. I also take on most evenings something called 'Serious Relaxer" by Wishgarden Herbs. Not sure if I am allowed to name brand here, so mods--if it needs to go, please accept my apologies--but this stuff really helps me with some of the things a valium might.
  2. So sorry to hear of your diagnosis, Elaine. And welcome to the forum. Hopefully someone with experiences aligning with yours will be able to offer you some specific advice, but all I can say is: YES! FRUSTRATING! I know I just 'pushed past' the symptoms for years and continued running and weight lifting. It was ghastly honestly, but I had this habit of using my mind to corral a failing body. With a diagnosis, I have had to cut back on much of what I was doing because I better understand what I was doing to myself, how I was exacerbating problems that were already there and asking WAY too much of my body. I have had ups and downs but lots of times where my capacity to exercise increases and I am stronger than I had thought. Not as strong as I once was, but I think these issues require that we take the long view. Or rather, it helps if we do that. And speaking of long views, it is too bad that you have to wait six months to be seen by a specialist, but....six months is a pretty short wait time for someone good in this field. Sadly. I hope you get some clarity and guidance for how best to keep and enjoy the things in your life that give you the most vitality and happiness!
  3. I just had a TST (thermoregulatory sweat test) that showed nearly global anhidrosis. My face and neck sweat rather profusely and my hands enough to turn the powder purple. The rest of me---not a thing after almost 40 minutes at 120 F. I was pretty shocked by this, as was my doctor. Just wondering if anyone else has had similarly dysfunctional results from this test and what they led you (and your doctors) to conclude. I will of course be consulting with mine to see what he thinks, but in the meantime, I am trying to understand the implications more clearly. Further, and perhaps irrelevantly, I have had multiple neck issues and am wondering if the sweat patterns are related to ganglionic lesions somewhere in my neck.... Oh...and I have currently been diagnosed with POTS and NMS. Thanks to anyone who has anything to contribute to my understanding.
  4. @MikeO--I have no idea what is going on in your body--obviously--but about mine, I know a bit and it might be relevant to yours... I have pain in my glutes a lot of the time which I have traced to a pattern of unconscious countermeasures. In order not to faint throughout the day, I squeeze those muscles excessively while standing and over time, it has resulted in pain. I can potentially see the same kind of protective reaction happening in the calves. I too have coat hanger pain but I believe that is a blood flow issue, whereas pain in my glutei seems in my case to more connected to relentless clenching. It does recede when I am supine.
  5. I think I am the one who wrote about the Apollo Neuro at the beginning of this year @JennKMac. I still love it. Just got a new band as the old one was getting kind of worn. Like I said back in January, I had hoped it might be THE ANSWER, which (of course) it is not. But I use it every night for sleep and it makes a big difference. Once in a while I forget it and with the help of my bedside herbal apothecary manage to fall asleep. Almost inevitably I will wake up at 2 and have no luck getting back to sleep. But then I remember---ahhh, my Apollo! and put it on and am back asleep in a few moments. In addition, I use it after I have overdone things and it helps bring my hyper-arousal down more quickly. It supposedly does a bunch of other things for you, but those are the main ones that I have found helpful. It falls in the middle of the three devices you mentioned, I think. It was a lot to fork over, but for me --well, well worth it.
  6. 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.
  7. 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?
  8. @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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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!
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