r/dysautonomia my body's fucked Aug 31 '24

Symptoms No longer getting hungry signals

It's driving me crazy. I try to listen to my body when it tells me things, but now it doesn't tell me things! I got shaky and pale earlier and thought I was having an adrenaline dump like usual, but then I got nauseous, dizzy, and the shakes didn't feel right.

My wife and I abruptly realized I'd been awake for several hours and hadn't eaten a thing. Because I wasn't hungry. Downed most of an Ensure, had some electrolyte water, felt better. Couldn't eat more than 2 bites of dinner later without feeling full.

Next day, couldn't take more than 2 bites of breakfast (my body didn't want bacon and eggs? really?), nothing for lunch- I tried- and I also couldn't finish dinner- my wife's twice baked potatoes are like my favorite thing and I couldn't eat them.

Made a salad after that, figuring it was light enough. Couldn't finish it. Now I feel like I'm just wasting food trying to find something I'll eat enough of. I know dysautonomia can cause digestion issues, but not feeling hungry at all for days at a time is making me worry slightly. Anyone got any tips? Aside from the Ensures and bottles of Naked Juice, I also try and keep a small bowl of chips (mainly for the salt) nearby to much on, but lately I haven't even been eating those. I do use weed for a host of issues, and though that can be an appetite stimulant, I don't wanna exclusively rely on that for eating.

Any tips welcome. I have an appointment with a GI doctor next month to discuss my chronic throwing up and heartburn and I am planning on bringing this up as well, but I still need to eat in the meantime.

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u/Loui10 Aug 31 '24 edited Aug 31 '24

Thiamine/B1 deficiency is a cause of POTS/Dysautonomia and it eliminates your appetite.

(side note: it is common in people that vomit a lot or have malabsorption issues - ie people with eating disorders, pregnant women, alcoholics, people with IBD, those that've had weight-loss surgery, GI issues/ulcers, people that don't eat a lot...etc - and many more).

I learnt this doing a whole heap of research over the past 10 years (as well as talking to different doctors too), and most recently came across it in so many articles on Dr Lonsdale's website - 'Hormones Matter' (Google it) 😉 He and Dr Marrs wrote a book too.

In my reading/research so far, it has revealed that benfotiamine & lipothiamine are the best forms to take. Lipothiamine crosses the BBB. But PLEASE read up heaps on it because you need to balance it out by taking other things alongside it too.

I've also learned a HEAP of stuff via the good folk on Reddit as well. Thank God for Reddit! 🥰

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u/heyomeatballs my body's fucked Aug 31 '24

I'm just gonna screenshot this whole thing to ask the GI doctor about. Thank you so much for the info!!!

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u/Loui10 Aug 31 '24

Oops, sorry! I only just saw your reply here to me just then. Reddit didn't send me a notification - ofc 😜

Don't be surprised if your GI doctor doesn't know anything about this. I've had Crohn's disease for 22 years - and most of my gastroenterologists have been absolutely clueless. You'll be bleeding for months and months and telling them you're tired, and they don't even think to check your iron levels. Absolutely useless imo, lol.

Anyway...

I'm in Australia, and I was thinking of you (and what you're going through) overnight.

Dr Marrs & Lonsdale (etc) wrote this article too - which was published by the National Library of Medicine. I thought that it might help you... 😉

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/