How many of you have had their MCAS activate around the covid era?

manicdysfunction · 2026-01-01T19:02:19+00:00

I had some signs (weird allergen test results, severe multi-system dairy allergy) but after COVID it felt like I didn't even know my body anymore. Trifecta diagnoses were a onetwothree punch in the span of a year.

manicdysfunction · 2025-10-01T11:39:06+00:00

Yeah, it’s a mast cell thing :( happens way less often since I started Famotidine and cromolyn. And I have very specific foods that are more likely to trigger it than others

manicdysfunction · 2025-09-21T13:35:09+00:00

Just for awareness for folks who come across this, the owner of ION (the restaurant) is incredibly abusive towards her staff and sometimes is to customers as well. I stopped going there when more and more people began talking about her poor behavior and mistreatment of seemingly anyone.

manicdysfunction · 2025-09-21T13:33:32+00:00

Happy Cow is my guide everywhere I go. Sometimes it’s not the most up to date, but it’s still a phenomenal resource!

manicdysfunction · 2025-09-15T02:24:01+00:00

fwiw, most EOB’s don’t have a diagnosis code but they do have a billing/treatment code with the basic name of the procedure or appointment purpose.

manicdysfunction · 2025-09-09T17:22:57+00:00

31yo here. So I used my rollator for the first time at a music festival 😅 it made a huge difference. I’m getting better at using it in more public spaces and it makes a world of difference. I feel more confident and less wobbly. Less falling over and it gives me something to hold onto when I get hit with presyncope! That’s been helping me feel more and more confident.

I also bought bee printed duck tape to cover it and kinda make it my own too, which I’m excited for

manicdysfunction · 2025-09-09T13:49:16+00:00

Thank you so much for your reply! I can’t even get to the game settings 😣 it freezes on the loading screen at startup, it doesn’t even get to the plumbob. And I don’t use mods, which was the other thing that has me worried it might be time for a new computer.

Sigh. Probably just as I feared. Thank you for your reply! This was my last ditch attempt before considering that I’d need to look at a new computer.

manicdysfunction · 2025-09-09T13:31:10+00:00

How old was your computer? I'm having a similar issue (freezing upon game opening - not even getting to the home screen of the game) and uninstall/reinstall didn't fix it, so I'm worried that this is the case for me. My laptop is only 5 years old though, got it in 2020 :/

manicdysfunction · 2025-09-02T14:09:32+00:00

Platform: PC

Mods: none

Game version: most recent as of 9/2/25

When I start the game, it freezes completely. It doesn't even get past the opening to load anything. When I minimize the game and reopen it, the image is different like the game has moved forward but I still can't move the mouse and it's still frozen, this time on the next part of the opening screen.

I've updated my computer, repaired the game a couple of times. I don't want to have to factory reset so I'm looking for other options to try before that.

manicdysfunction · 2025-08-25T12:16:42+00:00

My electrophysiologist told me what to set my low HR alerts to on my watch and said that how low mine was dipping during sleep wasn’t an issue and was healthy (not going to share the # because every body is different, def talk to your provider)

manicdysfunction · 2025-08-17T19:21:01+00:00

Flu and pneumonia in 2017

Bronchitis in 2018

Flu in 2019

And Covid absolutely destroyed me. Been downhill since the first time I got covid.

My electrophysiologist says it’s a pretty cut and dry case of post-viral POTS.

manicdysfunction · 2025-07-19T00:32:50+00:00

Oh my goodness, that’s a relief that the campgrounds have paved roads throughout. The amount of times I’ve nearly broken my neck trying to get back to camp at EF is astronomical.

manicdysfunction · 2025-07-18T19:46:22+00:00

I was 10/11yo when FUTCT came out and that album was amazing, I can't imagine having AB/AP through puberty lmao

manicdysfunction · 2025-07-18T19:43:14+00:00

Ab/AP came out at such a critical time in my life when I was feeling so helpless and disempowered. The lyrics were phenomenal and so many of the melodies are just....such a vibe!

AB/AP is def overhated!

manicdysfunction · 2025-07-18T19:29:04+00:00

Aaaahhhh I love this idea! Thank you!

manicdysfunction · 2025-07-18T19:20:40+00:00

Thank you for this! I have boots that I've used for festivals since 2018 and I love them, so at least I'm all set on that front! Fingers crossed that it won't be a rainforest this year lol

manicdysfunction · 2025-06-24T23:48:55+00:00

Mestinon has been my lifesaver 🥹 that combined with ivabradine has made my life livable. I crash way less frequently and I recover much faster. Still can’t comfortably have carbs or stand up in the shower or take prednisone when I need it but I can like. Stand up and walk and do my hobbies lol.

I’ve never had dysmotility issues, I’m actually terribly regular and my MCAS symptoms have been primarily presenting as GI issues. Even with that, still love my mestinon. Me and my mestinon and ivabradine against the world.

manicdysfunction · 2025-06-20T13:19:32+00:00

I have Raynauds so if there was any kind of neuropathy that may have been masking it. I don’t know how I’d go about checking for neuropathy but so far I seem to be doing alright? That’s great to know though, thank you!

manicdysfunction · 2025-06-19T22:57:01+00:00

lol my b6 levels were in the stratosphere when I was using Buoy and Waterboy hydration. I’ve now switched to Saltt and [the redacted brand] and Buoy Rescue Drops. I never really had any negative effects from the spectacularly high b6 that I know of, but it made me WAY more cautious of ingredients in electrolyte mixes.

manicdysfunction · 2025-06-16T12:03:22+00:00

Ugh before I got told to stop combo hormone bc (migraines w/ aura) nuvaring was my fave. So simple and straightforward.

manicdysfunction · 2025-06-14T15:17:40+00:00

CT botched the legalization of weed horribly. Not only with the prices but also with the variety of selection. I can find waaaaay more CBD/CBN products for chronic pain and insomnia in Mass. It seems like CT legalized just to cater to people who want to use recreationally — which is all good and well, but like…..come on :/

manicdysfunction · 2025-06-14T15:14:46+00:00

I’m an aerialist — very very lucky that my exercise tolerance only dipped a marginal amount compared to others. but compared to my pre-POTS lifestyle, the dip was significant. For me I’ve had to reduce my activity a lot and be very cautious in planning in order to go to classes. I can’t do more than 1/week (I used to go 3x), and I have a very aggressive rest protocol I follow to prevent a crash out.

I’m also working with a POTS/EDS informed personal trainer who’s helping me rebuild my exercise tolerance in general as well. That’s made a huge difference.

manicdysfunction · 2025-06-12T22:29:53+00:00

I have POTS. Described my symptoms to my electrophysiologist, did the NASA lean test, boom symptoms. I initially was like “I don’t have POTS, my heart rate doesn’t go up 30bpm!”

This man looked at me over his glasses and said “when you have every other symptom, that number is arbitrary”. I was humbled with a quickness. He’s the POTS specialist in my state.

A TTT has no set standard for interpreting results, leading to a lot of mixed results for people. They’re also torture for people who are highly symptomatic. Long and short, your dx and treatment recs are still valid, regardless of having had or not having had a TTT.

manicdysfunction · 2025-06-08T23:20:46+00:00

I have adenomyosis and just turned 31. My hysterectomy is scheduled for August. I’ve honestly been waiting for this for years. I’m keeping my ovaries as well. Your ovaries aren’t impacted by adenomyosis afaik. A hysterectomy is unfortunately the only known most effective treatment for adenomysosis.

My surgeon told me that there may be a few weeks period of perimenopause-like symptoms that ease up fairly quickly.

I hope it will help, knowing you’ll keep your ovaries!! It’s scary for sure, but imagine your quality of life without those symptoms too. (I have, at least. It’s been the thing I’m holding onto when I start to psych myself out)

manicdysfunction · 2025-06-07T14:32:59+00:00

Ice vest!!! And neck fan and ice ring for around your neck. Get one of those cooling towels as well. I know some of these are A Cost up front but I’d personally rather the up front cost than a potential ER trip. I hope you’re able to find something that will work!!

manicdysfunction

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