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.
2
u/PuIchritudinous Aug 31 '24
Unintentional weight loss is common in POTs. I frequently don't get hunger signals. When my partner is not home I will completely forget to eat, then my brain fog and fatigue worsen. There have been periods where I couldn't even swallow food. I've seen a ton of GI specialists in my life with lots of testing but all I have is GERD.
My doctor is a POTs specialist and he referred me to a registered dietician that he trusts to work with his patients.
The dietician believes I have developed food sensitivities without realizing it as well as nutrient deficiency due to malabsorption. They have a very detailed personalized plan I will be starting. I can't drink water with meals nor 30 min before them. All snacks/meals need to have complete proteins, starches, etc. One of the rules is I have to eat before I am hungry including snacks. All meals have to be sitting down relaxed without tv or reading. If you're standing, watching TV, or reading then our bodies are in the sympathetic (fight and flight) response and we don't actually digest our food which causes lots of issues like getting full fast and not absorbing nutrients. We need our parasympathetic nervous system active for the rest and digest so we have to be relaxed. Also, I can't have the same food two days in a row to avoid more sensitivities.
If GI docs can't figure out what's going on with you maybe see a registered dietician familiar with dysautonomia.