Ranga Posted October 5, 2022 Report Share Posted October 5, 2022 This last 10 days, I have had alternating nights of sleep - one night of great sleep, and one night of no sleep due to flares. It appears that my flares most often cause a spike in BP and a drop in HR at rest, and are sometimes accompanied by poor thermoregulation (hot head / cold extremities), slow gut that interrupts my sleep with burping/air rushing up throat/nose as I fall asleep), and brief spO2 dips. Warm showers, movement, breathing are my tools, but they don't help some nights. Interestingly, during the day, when I have a flare, caffiene seems to miraculously reset the body, atleast for a few hours. And to some extent - exercise and showers. It appears to me to be an issue with vasodilation vasoconstriction at different parts of the body that aren't working right in response to triggers. Anyone else going through a similar experience? I would really appreciate some tips to cope, as I am running out of ideas to try. Quote Link to comment Share on other sites More sharing options...
Ranga Posted October 6, 2022 Author Report Share Posted October 6, 2022 2 hours ago, DysautonmiaMatt said: What app/device are you using? Would not mind capturing my data like that I have been using a Fitbit for the past 4 years. RBC and H/H was ok the last time I checked. Most of my numbers are normal. It appears to be some combination of thermoregulation and gut-brain axis dysregulation, and maybe some elements of pots. Quote Link to comment Share on other sites More sharing options...
MikeO Posted October 6, 2022 Report Share Posted October 6, 2022 1 hour ago, Ranga said: I have been using a Fitbit for the past 4 years. RBC and H/H was ok the last time I checked. Most of my numbers are normal. It appears to be some combination of thermoregulation and gut-brain axis dysregulation, and maybe some elements of pots. Not seeing a POTS heart rate. I did look up the gut-brain dysregulation. Seems to be a neuro issue. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7589356/ Quote Link to comment Share on other sites More sharing options...
Ranga Posted October 6, 2022 Author Report Share Posted October 6, 2022 1 hour ago, MikeO said: Not seeing a POTS heart rate. I did look up the gut-brain dysregulation. Seems to be a neuro issue. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7589356/ Yeah. I have probably exhausted all there is to read on gut brain axis. Until 2017, only my gut was acting up - no gut-brain issue. In 2017, post nicotine cessation, and some auricular acupuncture (which hits the vagus nerve), I started experiencing gut-brain issues especially with gluten including sleep disruption. Post mirtazapine in 2019, is when I developed a whole slew of ANS issues in addition to my pre-existing ones. This includes thermoregulation, paresthesias, POTS like issues, mental issues. I have checked my gut microbiome health, my gut inflammation markers, bacterial overgrowth, food sensitivities and have resolved any issue. So that leaves the specific pathway - temp/pressure triggers -> C fibers/baroreceptors ->ANS (vagus) -> CNS (hypothalamus) -> HPA and gut-brain axis via vagus nerve. The fact that it happens at rest and when I fall asleep/wakeup, means something is wrong when the body activates the parasympathetic nervous system. Quote Link to comment Share on other sites More sharing options...
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