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Richelle Sepulveda
@Really_Richelle
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Former Psych instructor. Like a magpie, in that I gather weird facts, though, not shiny bits. She/her, I think? Allergic to garlic ðŸ˜.
Idaho
Joined May 2012
@zagreusrevival Oh, another thing that you could do to test the PEM improvement after eating to see if it was due to mechanical movement would be to get some of the flavorless thickening stuff for a drink that they use for people with dysphagia. If that helps, you know it is mechanical.
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@zagreusrevival @KatBoniface I've actually had to back off on H1 blockers because I was getting cataplexy. It's almost as if my MCAS is trying to be in remission or something. Most likely I have eliminated most of my triggers, not the MCAS itself.
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@zagreusrevival @KatBoniface I kinda keep track of it with my finger pricks for glucose tracking. It's not perfect, but if I keep bleeding, that's not good.
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@zagreusrevival @KatBoniface But if you can, see if there is a difference between the carb/sugar content of food versus fat content, and if that changes the benefit post eating. If there is no difference, but still a benefit, I would lean towards assuming something mechanical.
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@zagreusrevival @KatBoniface @KatBoniface has a lot more info on it, but I know it has something to do with activating GLAST? I keep forgetting what Kat has explained to me. But her foray into exploring Rutin to support glutamate has been fascinating:
I have never been so glad to be cranky, forgetful, or have muscle weakness. Correlating my experience testing high doses (followed by blood tests) with other experimenters & the known mechanisms of Rutin may have led to finding a PEM switch. More to come.
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@zagreusrevival @KatBoniface I didn't, but that does sound like connection to the glutamate system. Too much glutamate in the wrong places at the wrong times can trigger some definitely unpleasant emotional issues, like feeling misophonia very intensely compared to typical.
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@zagreusrevival hmm. I know that some of the muscles that stabilize the atlas might have some connection with some of the swallowing muscles, too. They are kind of behind the trachea.
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@Gmwetz @zagreusrevival That could be heart rate increase, too, depending. But it is hard to say for sure which it might be the primary, and what is along for the ride.
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@zagreusrevival @KatBoniface Sudden PEM improvement for me is often tied to calcium channels and acetylcholine, which has had quite a bit of benefit from nicotine patches for me. (I've managed to completely switch PEM off a few times with nicotine!)
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@zagreusrevival But then I wonder how much it is the mechanical action of chewing and/or swallowing that is also helping? For me, jaw position and chewing do help my tinnitus, which is assumed to be part of some aspect of stenosis.
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@Gmwetz @zagreusrevival If you do have improvement when laying down, I would guess BP and resting heart rate are pretty low, and doctors always remark that you must be really healthy because those are similar to athletes. However, HRV might be VERY low, implying there is definitely an issue.
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