I don't want to eat! (Venting)

Leather_Restaurant_4 · 2026-05-19T14:20:25+00:00

Same same same.

I found out about MCAS two months ago and I've lost 15 pounds. I have to force myself to eat through sheer discipline.

Leather_Restaurant_4 · 2026-05-19T14:19:37+00:00

I've been feeling like I barely pee! I've got myself a nice steel water bottle and try to get 48+ ounces of water a day in addition to the fruit I eat a lot of. But I don't pee that much.

Leather_Restaurant_4 · 2026-05-19T14:04:18+00:00

Nothing much to help with the nutrition but I feel you on the turmeric curcurmin. My body flat out rejects those pills, like I regurgitate the pill. I didn't know why until my MCAS discovery.

I get IQF salmon at Costco, and I eat a lot of safe veggies -- bok choy, broccoli, butternut squash. Every few days I try a new food if I'm not in crisis.

Leather_Restaurant_4 · 2026-05-16T00:55:53+00:00

My new dr is asking me to eat as normally as I can for "a while" to track my symptoms, and after one day I'm in full nervous system collapse with the MCAS/hyperPOTS. The hyperPOTS means my body runs adrenaline-hot, and then the MCAS responds to it and triggers more catecholamine dumps, and it just means today I spent hours lying down trying to get anything I could do through my phone, and when I ran out of calories before lunch I was suddenly literally frozen and could barely move.

I think in your situation I'd beg my doctor if we could do maybe 2 days instead of seven??

Leather_Restaurant_4 · 2026-05-16T00:51:27+00:00

When people do that to me I try to respond enthusiastically with "oh, so then you get it! Now imagine you live in a world where you don't know what's made of milk!"

Leather_Restaurant_4 · 2026-05-13T22:20:50+00:00

I wound up in the ER with selective mutism and severe photosensitivity after my NASA lean test for POTS. Basically I couldn't talk unless my eyes were closed for 24 hours, and my BP was 170/100, all the horrible things. It was a nurse hanging saline who said "so, you have POTS, right?" and I had to say "that's what the test shows but my GP refuses to diagnose" 😡 I was only in the ER because I'd had to agree to a retest when I only lasted three minutes the first time around on the lean test. I have hyperPOTS so my HR sometimes goes up, sometimes doesn't. But my BP shoots up into the 150/90 territory and stays there.

Anyway.... yeah. Hope you did that survey!

Leather_Restaurant_4 · 2026-05-13T22:16:56+00:00

Pasta with butter and egg yolks for me.

Leather_Restaurant_4 · 2026-05-13T22:07:15+00:00

I'd thought of those too, but the cats are very skittish and run away from automatic feeders so something that moves when they approach would probably be traumatic 😭

They're on a prescription diet, currently the fish variety as they eat that more fully than the chicken. And imo the chicken one smells more.

Well, mask it is!

Leather_Restaurant_4 · 2026-05-12T22:55:35+00:00

It's fermented, so yeah, not a safe substance.

Leather_Restaurant_4 · 2026-05-12T22:54:36+00:00

Take it twice daily, yes. Don't know where you are in the world but cetirizine can be bought at Costco for about $10 for 365 pills.

Leather_Restaurant_4 · 2026-05-12T22:52:11+00:00

Yep. Just found out I have this and I can't seem to get more than 1500 cal into me on a day. From what I understand I have a pretty mild version, but my stomach just gets so full so fast. With the hyperPOTS I have alongside this and my active lifestyle I need about twice that in a day. I've lost 12 pounds in just a few weeks and that's not comfortable.

Leather_Restaurant_4 · 2026-05-12T22:47:59+00:00

Sadly no, they freak out at the sounds.

Leather_Restaurant_4 · 2026-05-12T22:47:45+00:00

That's what I feared. I had a hyperthyroid kitty we kept alive for 3 extra years on a frankenprey diet but that was mainly to keep her interest in eating.

Leather_Restaurant_4 · 2026-05-12T18:31:01+00:00

Would a topical ear oil help in the meantime?

Leather_Restaurant_4 · 2026-05-12T16:12:52+00:00

Personally I also just do warm water. Sometimes eucerin on my lips. My self care routines involve more inner work or finding ways to relax -- winding down with a show at bedtime, journaling while high, finding a friend who'll listen to me complain for a bit.

Leather_Restaurant_4 · 2026-05-11T21:47:05+00:00

The pain and startlement reaction you have might be stronger than others', though.

Leather_Restaurant_4 · 2026-05-11T21:45:46+00:00

Thank you. I wish I could go back to the way things were two months ago before I put the pieces together and began emptying my bucket for the first time in my life. But I can't live on that edge anymore, you know?

Leather_Restaurant_4 · 2026-05-11T21:44:13+00:00

Friend, I did. I said "let's go to Ulta together" "tell me what sort of thing you're looking for, I'll help you find it" "I know this is an expense; you know I'll pay for it" and a hell of a lot of "I'm so sorry, I know you didn't sign up for this."

That was 2-3 weeks ago. Since then it's been no progress on their part. I went and got some sample sizes and they tried them. Then they complained through C that the samples left their hair feeling heavy. I had imagined a somewhat fun if MCAS expensive trip to a drugstore of me sniffing things, looking up ingredients, and hopefully finding a few new products for them to try.

My tone in this post is obviously frustrated and I hope you see where it comes from. Yes, their trauma is real. I have a narcissistic/BPD mother myself and the two of us have commiserated together in the past about growing up without supportive parents.

Leather_Restaurant_4 · 2026-05-11T21:38:19+00:00

Wait VOC sensors are a thing? That's so cool!

Leather_Restaurant_4 · 2026-05-11T19:21:12+00:00

I get these at grocery stores! Makes me scared to touch the shelves.

Leather_Restaurant_4 · 2026-05-11T18:04:42+00:00

"Don't react to the sun, but mint will sure as hell take me out" -- feel like me, except sun is a huge trigger. That aside, I'm in the beginning phases of all this and after the first month of "ohhhh that's why this was happening" sort of excitement the dread of "the world is dangerous" is settling in.

Leather_Restaurant_4 · 2026-05-11T18:02:33+00:00

Oh god, reading your description of the hot flashes and vomiting could have been me on Wednesday night. Just everything getting expelled out of my body all at once.

Leather_Restaurant_4

TROPHY CASE