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About Foggy01

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  1. Hey guys, I don't know where else to turn to. I have this very troubling symptom the last few days. I was wondering if anyone else with dysautonomia has had it. Essentially when I'm focused on my breathing, such as when I'm relaxing or just about to go to sleep, I don't feel the full impulse to inhale fully, and I end up with really shallow breathing. I'll check the oximeter and the spO2 is indeed dropping, and I can feel that I'm not getting enough air, but nothing is telling me to breathe deeper in my chest. I think my breathing is working when it's involuntary, like when
  2. Hi everyone. It's been a few years since I've been online regularly. Also my display name seems to have changed. It used to be Foggy01. I see a lot of new members. I also notice many of the regulars I talked to before haven't been online in years. Rama and Jangle come to mind. I was wondering if anyone knows what they're up to? Last I heard Jangle was entering medical school. I was also wondering about AllAboutPeace (Lori). I hope she's ok. There's several others as well I miss. I've had a big flare recently and was wondering how everyone else was doing.
  3. I only heard the results of the holter on the phone today from a doctor in the same practice as my gp. I haven't even got to talk to my gp about it let alone a cardiologist yet. That'll be a few weeks away unfortunately. I was hoping in the meantime to reassure myself that it's something benign with pots but I think it's looking like something else is going on.
  4. Has anyone with POTS also been diagnosed with episodes of MAT (Multifocal Atrial Tachycardia)? I was surprised to be diagnosed with this recently since they ruled out heart issues when they gave a POTS diagnosis and said my tachycardia was benign. Anyone else have such a change in their situation? It was only an episode of it caught on Holter. I'm not sure how often it's happening.
  5. Here are the threads I could find. Hope it helps.
  6. Hi rje11, You should get this checked out by a doctor. It could be a central apnea of course. But it sounds an awful lot like what many have reported on this board before. I collected many stories from people on this forum with similar experiences with "forgetting to breathe". A quick search for that term might bring up the old thread from many years ago. We know how scary this symptom in particular can be and many of us say it's the worst one. And also we know how scary it is when you're lying there trying to sleep and you feel terrified and alone with this crazy symptom. At least y
  7. Yeah there's all these strange and seemingly unrelated perceptual changes that seem to go along with POTS and other similar syndromes. Many people seem to have these things.
  8. RichGotsPots heads a support group on Facebook for people with Sjogrens-caused autonomic Small Fibre Neuropathy and POTS. I don't think he hangs around these forums much anymore, but you could try sending him a message here or maybe one of his friends will pm you the FB page. I don't have a link. Good Luck.
  9. Hey, Thanks for your story and your contribution. Yeah I think POTS can come and go but the underlying low-blood-volume remains and other CFS/ME issues remain despite it. It is just one symptom that can come and go in these type of people I think. If I may ask your thoughts: Wouldn't this neuroinflammation theory mesh with what others like Nancy Klimas have found in an indirect way? A heavily TH2-Shifted chronic state of immune activation could cause both overactive microglia in the brain, due to one of the cytokines involved in humoral immunity activation, and also deplete the intracellular i
  10. http://www.cortjohnson.org/blog/2014/05/06/blood-volume-will-ischemia-key-pots-chronic-fatigue-syndrome/ Interesting how Low Blood Volume may be the cause of so many symptoms in both CFS/ME and POTS. Perhaps the mitochrondrial issues and the resulting cognitive and muscle issues are all causes by low blood volume. Stewart thinks that many POTS cases are because of the carotid body reading blood gas levels wrong and triggering reduced blood flows to the brain which seems to cause reduced blood volume that causes many other symptoms. Low blood volume even without POTS is a consistent finding in
  11. Hey, Has anyone read this? It seems that this doctor has put together an explanation for what causes CFS and she mentions what she thinks are the two most frequent causes of POTS. One is primary and involves autoantibodies against receptors and another is secondary and involves the neuroinflammation seen in CFS/ME/FM causing POTS as a secondary condition. What does anyone think about this classification scheme for etiology? Could she be right and this is finally a comprehensive way of explaining CFS/ME/FM/POTS for most? Have a read and let me know what you think. http://www.cortjohnson.org/blo
  12. Yup youre not alone. Whatever happens it feels worse than if i was exercising. Youre the first I've heard say it though.
  13. These breathing issues we get in POTS (I've also heard some people with Sjogrens and other neuropathies/dysautonomias mention it) seem to be a difficult to pin down thing. Many people report a breathlessness that is not helped by rest or report a "forgetting to breathe" loss of sensation. These appear to be nervous system issues to be honest. Sadly I've never found anything to help them. It's not arterial O2 that seems to be the issue. I don't think it's something as simple as O2 or blood not getting to the brain. Some sort of neural dysfunction is occurring. Me and Rich discussed it a few yea
  14. Had a very similar experience in Ireland. Psychiatrists are very keen to spout woo-woo like "Anxiety" and "Depression" and "Psychosomatic" whenever they need to fill the Gaps. (God of the Gaps/argument from ignorance) Doctors aren't much better. That's why your specialists won't use proper terms in their correspondence. There is no regulation here in Ireland (except a guideline by the Medical council in 2011 but it's just a guideline) that doctors continue to educate themselves. These terms will never be on their radar, and any nuanced meaning behind them will certainly never be developed in t
  15. Were you diagnosed with a sensory small fibre neuropathy or something? What is causing this pain do you think?
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