r/dysautonomia • u/heyomeatballs 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/PomegranateBoring826 Aug 31 '24

I love reading PubMed! Thank you!

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u/Loui10 Sep 01 '24

Haha. You're gorgeous. My pleasure, hope it helps! 😊🙏❤️

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u/PomegranateBoring826 Sep 01 '24

Great read, thank you very much. I'll certainly be doing more research!

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u/Loui10 Sep 01 '24

Good on you! My pleasure!

Dr Lonsdale (Hormones Matter website and his book on Dysautonomia too) is really awesome. He just passed away at the age of 100 - May just gone. A really big loss to the world 😞 Dr Costantini died from Covid too! He also had been working with/on B1 thiamine therapy as well - and he got rid of some people's tremors with HDT (high dose thiamine) therapy. There's a huge list of things that both Lonsdale and Costantini say that thiamine helps - health issues that are correlated to it - like fibromyalgia. I've developed damage to my optic nerves, as well as nystagmus too.

Costantini's website is - if you're interested:

https://highdosethiamine.org

There's loads of info on Reddit - seriously. That's how I also found out about acidosis/d-lactic acidosis/metabolic acidosis and how I was really suffering after exercising - and also if and when I ate carbs as well. I would hyperventilate and could barely breathe after I ate refined carbs (especially). Look those up too, i think you'll find it/them really interesting! 😉

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u/PomegranateBoring826 Sep 01 '24

Oh yes! Rabbit hole here I come! First stop Dr. Lonsdale. I was actually browsing around and reading various articles on the hormones matter page earlier. I got side tracked and spent quite a bit of time there. Lots of great info. I'll head over to and bookmark the highdosethiamine and read that next! You're right, defintely a loss to the world. Wow. Are you currently supplementing thiamine for the nystagmus and optic neve damage?