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About Amyschi

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  1. Thanks so much, Pistol. That is a logical explanation. Interesting too about not being able to sleep due to the same. I always thought of that as a trigger, but you are right, probably all a continuous cycle. It is amazing that you said you feel like you are ill with a flu afterward - I am exactly the same, and sometimes wonder if it is an illness, but it seemingly happens too often for that. You are always so helpful and knowledgeable (such a help to all of us!), Take care. .
  2. Pistol. if you see this! (couldn't get the quote to work, sorry), regarding your thoughts on adrenaline release. Do the doctors know whether the exertion/stimulation actually causes overstimulation of the ANS and subsequent increased adrenaline? I get this reaction only during sleep if I have done something I know is a trigger, for about a year and definitely getting worse. I also feel extreme chills and what seems to be paresthesias (ie chilling throughout the arms and legs, yet a burning sensation at the same time (Dx of neuropathy, but don't know if it is small fiber in addition). The
  3. Excellent thought, Swinkie. I have actually taken my blood sugar with my husband's machine to rule that out. Thanks for the suggestion.
  4. Thanks Chiaea. This is interesting that it may stem from migraine, but I'm glad the med helps you. I don't get migraine, but I do have chronic longstanding chronic dizziness.issues, and have often wondered if that could be vestibular migraine, so that is something to keep in mind. Good luck to you.
  5. Thanks and so sorry you get this too. I know the feeling, it makes you weak so that it is hard to get up to burn off the adrenaline, if that is what it is. Hang in there.
  6. Hi all. Just wondering if anyone, maybe especially those with hyperpots, has this constellation of symptoms? For the past several months I have been having episodes of waking suddenly from sleep, like a startle, then noticing a short burst of tachycardia, a severe "internal tremor," ongoing severe feeling of chills that are more like cold paresthesias running down the arms and legs, but oddly, feeling of body/skin burning all over. I do have evidence of large fiber polyneuropathy on EMG/NCS, but have not been tested for small fiber, which I strongly suspect. This is generally accompanied t
  7. Thanks Pistol! So sorry you experience this also, but glad to know it can be part of the picture. I totally agree that the trigger creates the storm of symptoms, but it seems that the more symptoms you are trying to juggle and the intensity of those symptoms, the worse the flare. Like you were saying with your seizures and/or fainting spells - so glad you are doing better with that aspect at least with the IV fluids. Take care.
  8. Can I ask when you get these POTS flares and probable associated presyncopal or hypoperfusion symptoms, are they accompanied by extreme weakness way over your baseline? Sometimes when this happens, I literally feel like it could be an emergency or I may be dying, that there must be something else happening . But I am 61 (did not develop dysautonomia symptoms that were more severe until my early 50s; had chronic dizziness following a virus for 35 plus years and CFS/fibromyalgia). I know that sounds dramatic, but it is to that intensity, almost unable to get out of bed and walk. However be
  9. Hi Lisa. Just wondering if you are using an elevated wedge or bed, or just using pillows to elevate? I have cervical arthritis/stenosis and note I have to be very careful in the positioning of my neck or will have the same symptoms. It actually is quite a trick because I also have severe acid rreflux and, for that reason, also have to be elevated. What I have found is to use a very low-profile pillow (like one inch) so that the neck isn't flexed at all. Do you have underlying neck issues? If unknown, maybe something you want to check , as if you just started to notice the headaches a
  10. Thanks so much. Interesting. So glad you are doing better with this. Can I ask why you are taking the prednisone?
  11. TY for your reply above, MTR. I didn't realize the lip biopsy could be dangerous, but with so many issues going on, I can certainly understand that. So sorry you have had so many obstacles along the way, but I admire your very good attitude and willingness to keep trying different things to improve over the years. I was interested in your comment just above about the move theater seats reclining, as I am confused on this aspect. I really have noticed the nocturia, which I never used to have, when I started sleeping on an incline due to acid reflux. I can't figure this out, as I thought
  12. Just wondering if you, or anyone, breathes through their mouth when they feel like this? Odd question, I know. I notice when I am more symptomatic HR wise and generally more weak, that I will be breathing with my mouth open and don't even realize it until it completely dries out, so I am doing it involuntarily. This is only while I am sitting or laying upright though. Maybe it has something to do with blood flow and oxygen levels? I have tested O2 sats during this, though, out of curiosity, and not generally low.
  13. So sorry, Ida. I agree that if you are unable to sit up, it sounds like you do certainly need and deserve some help. I have a husband fortunately, but he is gone 90% of the time, and I have often thought that I wish I had an extra bedroom where I could offer maybe the right person free room and board in exchange for just being around some of the time. In addition to your friend who is coming by and maybe more additional arranged help, as others have said, would that be something that is possible for you, if that is even something you would want to consider? Best wishes to you.
  14. Hi MTR, I just came across your posts to this point, as I just posted a similar question today and happened to see yours. Sorry for all you are going through, but it is amazing, as we could be twins. The only thing different is, instead of sweats, I get severe chills for hours down my arms and legs with an inability to get warm. I just wanted to mention, and all are probably aware of this, that I read you can often have negative antibodies to the Sjrogren's; that the only definitive way to diagnosis it is through a lip biopsy. I suspect you are younger than I (at 60), so it is a little s
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