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Everything posted by MTRJ75

  1. Yes, the neurologist even mentioned barometric pressure, although saying that the allergies aren't the reason for the POTS flare. I've since noticed that the severity of the "flooding" in my head on any given morning, doesn't necessarily determine how I'm going to feel that whole day. The other side to it though, is that I'm often nauseous for large chunks of the day this time of year, but then I'm starving for about an hour or two when it finally passes. So that's when all the eating happens. It's also difficult for me to eat smaller throughout the day while I'm working. I know th
  2. As horrible as COVID has been (and I feel terribly for those now experiencing the same thing we do because of it), a potential bright spot is that dysautonomia may start getting more recognition and attention. https://www.cnn.com/2020/09/13/health/long-haul-covid-fatigue-breathing-wellness/index.html Well put Mr Greenspan.
  3. I'm sure many of you already know this, but reading about an actual study was informing none the less: https://www.healthrising.org/blog/2020/09/12/saline-chronic-fatigue-syndrome-cardiovascular-functioning/ The two parts that really caught my attention: And Ok, I'm hooked (okay, I read just about everything on this site anyway). Now I can't wait for the second part.
  4. I feel terrible. Every part of the day is some kind of physical/mental struggle and I can't do anything physically exerting without severe consequences, but it's now been a week since my last crash at least. I've been having quite frequent total nervous system crashes/flare ups over the last month. As many of you unfortunately know, when the body goes super fight or flight, it feels like you might die, so even though I'm sitting here drenched in sweat as I write this, I'm incredibly to have gone a full week without one of those episodes. While I can't point out a definitive pattern
  5. Thank you. Posts like this are very important to read when things are going badly. It's easier to persevere if we believe better days may lie ahead.
  6. Thanks Kim. I hadn't heard of that treatment before, but it's apparently been around quite a long time. Seems to be very similar to IVIG, but differs mainly in method of delivery. Doesn't sound like it's necessarily more cost effective though.
  7. What testing had to be done for SFN? Is that a biopsy? And what is SCIG? I have sero-negative AI issues (Sjogren's), so it's more difficult for me to get treatment when doctors/ins company are skeptical due to lacking positive bloodwork.
  8. On the one hand, I'm sorry you've been dealing with this for so long, but on the other, I'm so happy it's improved over tiime. I love reading encouraging posts like this. I'm only a couple of years (two or three) into my own dysautonomia journey, so do you mind if I ask how long it was before these "attacks" became less severe and perhaps you started to become more functional again?
  9. With the following two postings on facebook by Dysautonomia International, this is now the 2nd and 3rd time I've read about SFN or SFPN in dysautonomia (POTS/CFS/ME/FIBRO): https://www.medscape.com/viewarticle/936745?fbclid=IwAR3PETPUVVZ0Hjkv4q_suABAxTLnJ_nBIsVGuKdBbe_YORUkIhOZ7af2s5o https://onlinelibrary.wiley.com/doi/10.1111/joim.12895?fbclid=IwAR082UW6HJ3Lyx-yy75jg61-Pmv_9AFaSuYPNsWmYABTdpZfiGWZBfiJVB4 Along with this one from HealthRising last month: https://www.healthrising.org/blog/2020/07/08/fibromyalgia-chronic-fatigue-syndrome-small-fiber-polyneurop
  10. The aftermath was that when the heating pad sensations receded a bit and I tried to sleep, the muscle cramping was some of the worst pain I've ever felt, intensifying with any attempt at relaxation. It was only the second time I'd ever attempted to take a Xanax to sleep (0.25 mg) and it didn't work. Subsequently, I've missed the last two days of work attempting to recover. The result of the phone consult with the neuro yesterday is that he believes weather/barometric changes could be responsible for this new round of flair ups. We are coming up upon the roughest part of the year for me t
  11. This certainly isn’t the first time I’ve felt these attacks but it may be the most reoccurrences I’ve had in one day/night. The body heat usually starts or gets to a point where it feels like hot liquid is being poured across my chest and/or torso and arms, becoming increasingly hotter until it feels like I’m wearing a shirt shaped heating pad. Does anyone know what this sensation is or what causes it? Is it actually blood moving around that I’m feeling or some other sort of chemical reaction? It’s generally followed by lots of sweating, nausea, digestive distress and sometimes palpitati
  12. You don't know how many times I've started and stopped to respond to this post over the last few days. Every time I read some new article or research, I think "Oh, that's me." Then the next one..."No, maybe that's me." Obviously, we can't trial all these things in one lifetime. My worst time of year has been Fall (October - December), but that seems to be starting a bit early this year. I've had several flares or nervous system crashes over the last week with the difference being with these from the ones I had in June is that I'm not doing anything physically to incite them t
  13. It could be a little of both. These symptoms can certainly cause some anxiety, which makes the symptoms worse. I've actually been dealing with nervous system "crashing" as I write this. The same symptoms you describe have been going on all night...body heating up, nausea, heart racing, digestive issues. It's all quite scary even when you've been through it time and time again. Some believe anxiety medications help. I've been on 5 and then 10 mg Lexapro for a few months now and it's still happening. Like I say, I'm not sure more anti-anxiety medication is the best long term answer, but I
  14. https://www.healthrising.org/blog/2020/08/30/chronic-fatigue-syndrome-orthostatic-tolerance-dizziness/ I don’t know how many here are frequent readers, but I feel like I learn something important nearly every time Cort posts something new. This is really interesting about brain blood flow issues and how they can tie into when we feel labored breathing. Also a little snippet about automotive neuropathy potentially being autoimmune that I found personally relevant and am going to push the neurologist on next month. So many symptoms keep coming back to vasoconstriction/dilation issues.
  15. I work from home. I can sit on my couch and type and work at my own pace, even doing half my work the night before. Very flexible thankfully, but I still struggle to do it. I can’t ask for or accept or even suggest assignments I’d really like to take on because I know I’m unreliable at this point. I’ll often miss a day or two every other week and feel terrible frequently after getting through a work day. If I had to leave the house on a daily basis to do any of It, it wouldn’t happen. Unfortunately my disability hearing is still probably a year away and I like to eat so I have to push throug
  16. Yup. I’d even add watching exciting sporting events and playing poker for me now and these are things I’ve been doing for a good chunk of my life without issue. Heck, after watching the big battle episode of Game of Thrones last year, I actually felt like I was in it.
  17. I take several supplements and I'm frequently changing them. The doctors who suggest them ask what's helping what and I usually have no idea. Even the medications usually cause more side effects than beneficial ones. Is it the CBD oil, the magnesium, the turmeric, the beta blocker, the SSRI? Then when I think something is helping some symptom, but it returns after a few weeks or when the doctor tells me certain meds take weeks to months to take effect... It's generally like: Well, I'm gaining weight, I'm exhausted all the time, I still feel like I've been set on fire and beat with a baseb
  18. I absolutely believe you're onto something. The nervous system remembers reactions to certain things and will enact those responses automatically and incorrectly when your nervous system goes haywire (as it does in us). Not everybody will be able to fix everything, but I do have hope that neuroplasticity can help benefit our conditions. I've done one of these programs and it's a LOT of work. And it doesn't always come quickly. It hasn't cured me by any means, but I haven't always had the time and patience to fully commit. I do believe understanding these concepts and attempting to practice the
  19. This is the kind of post I love to read. Congratulations and hope for continued recovery! B-12 shots were one of the first things the doctor offered me about five years ago when my initial dysautonomia symptoms started showing up (though I didn't know what it was for another couple of years). I stopped them because I didn't feel any difference. Maybe I should request them again since my symptoms are different now. How do you know specifically which meds are helping what if you're on a bunch of them? I'm hardly ever able to tell what's helping what.
  20. Strange thing is, my eyes dilate by themselves often and the way I found this out is after the ophthalmologist dilated them once, I realized it was a similar feeling, just more pronounced. I hate having it done because I can't read for hours afterward, but have never had additional problems due to it.
  21. I asked this question last week. I know it's not supposed to be the same for us, but wondered how long before it became a problem. I'm generally around an hour or more too now.
  22. Thanks @Pistol I saw that article and several more as a matter of fact, which all seemed to differ in their opinions. I was really surprised and encouraged that I wasn't knocked out completely or sent back into a massive flare, especially after just seeming to come out of one. In fact, I'm pleasantly stunned. Reason for asking about this is that if I am able to start doing more activity again eventually, I don't want to have to sit there and worry about how quickly my heart rate is dropping (or not) if it shouldn't be expected to drop back down under 100 for someone like me f
  23. About an hour ago, the dog darted out the front door and I had to chase after him two houses down, pick his nearly 60 pound butt up and carry him back to the house. An amount of activity that, of course, had me breathing heavily and sweating afterward even on a good day. About a half hour later, reclined on the couch, my heart rate was still around 100 (10mg beta blocker taken a a few minutes before the incident) Now, an hour later, I'm low to mid 80's in the same position. I actually consider this fairly decent for me and better than I was expecting, though that first half h
  24. That all sounds like h***. Glad you've pulled out of it. I feel similarly about steroids and have refused to take them unless absolutely necessary (really bad rash two years ago was the last time) due to the ridiculous reactions I've had before I even knew what dysautonomia was.
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