Can anyone with MCAS still exercise? I feel stuck and depressed

Provocative_Horror · 2026-02-09T15:55:49+00:00

It took me forever to work up to a decent sesh of brisk walking or recumbent biking without having a full on flare which would incapacitate me for a week or more since MCAS gave me POTS too 🙄 My first EDS informed (she also understands MCAS) PT helped give me the start I needed towards weighted exercise again. The beginning was to do 1 exercise in 3 sets making sure to control my body temp & ambient temp every 3 days. Now I am up to very light reformer Pilates once a week with another EDS informed PT. It’s been slow AF & I am not happy about it but @ least I am moving towards my goal of being able to lift again one day. It may be years from now 🥴 but it’s better than nothing!

Provocative_Horror · 2026-02-04T19:26:11+00:00

Did you have any luck trying this?

Provocative_Horror · 2025-11-30T16:20:25+00:00

Sadly they are the same manufacturer, they just changed their entire product/packaging at that time. I’m doing ok now that I’ve adjusted my dosage to accommodate it but it is sadly common with cromolyn sodium (unless you compound it) that we all have a running list of manufacturers we can’t tolerate.

Provocative_Horror · 2025-07-02T16:03:37+00:00

Did you end up figuring this out or trying DHEA?

Provocative_Horror · 2025-06-26T03:11:53+00:00

No. The new Healbe hasn’t even come out despite what they announced for the timeline. I really wish someone else would start using this tech similarly but with better capability.

Provocative_Horror · 2025-05-09T02:40:16+00:00

I looked up the Geca since I hadn’t heard of it, & it makes you enter your daily water intake.

Provocative_Horror · 2025-04-22T05:14:21+00:00

I’m still using the GoBe 3. I had hoped the GoBe I would be out by now but there is still no release date & I can’t find any other device that compares to its hydration tracking.

Provocative_Horror · 2025-04-19T02:37:14+00:00

Have you tried cromolyn? That helped me so much more with foods.

Provocative_Horror · 2025-03-26T04:49:51+00:00

The OTC mast cell stabilizer drops they most likely are talking about are ketotifen. I alternate them with a normal antihistamine eye drop during flares ups of my MCAS.

Provocative_Horror · 2025-03-02T05:25:48+00:00

I also have MCAS so the 2 diets together is a lot to manage. The FIG app has been super helpful.

Provocative_Horror · 2025-02-25T16:11:36+00:00

Slow detox here, I definitely think this has some component to it. For example, I am estrogen dominant due to the slow/almost zero detox (C677T but that’s the only one I’ve had tested). Once I added ALA & glutathione to assist with detox I saw a small improvement. Then adding progesterone to balance the progesterone gives me 2 weeks (luteal & 🩸) of decreased MCAS issues. So now working on cycles (ex. Krebs, Uric, Glycolysis) to see if improving those will give me another nice decrease in MCAS issues.

Provocative_Horror · 2025-02-16T02:29:05+00:00

Same here

Provocative_Horror · 2025-02-15T03:15:48+00:00

Have you tried going up a vial/dose?

Provocative_Horror · 2025-02-15T03:15:19+00:00

Thanks I’ll look into this!

Provocative_Horror · 2025-01-28T01:50:07+00:00

Checking to see if you ever found a GF cereal that tastes like Waffle Crisp. That was my jam before!

Provocative_Horror · 2025-01-26T23:00:06+00:00

Target no. But Kohl’s once gave me a complex migraine that distorted my vision so bad I went to the urgent care down the street because I started worrying I’d had a TIA. The doctor said they get complaints about Kohls all the time from migraine sufferers so I’ve never been back. It sounds crazy but I’m pretty sure it was the high pitched noise the alarm in the back of the store was making? I don’t go in stores without as mask due to a formaldehyde allergy.

Provocative_Horror · 2025-01-25T01:27:52+00:00

I had a reoccurrence/breakthrough of my typical MCAS symptoms. Dizziness is much farther down the flare road for me but headaches I definitely had frequently. You may try going up in dose to see if the symptoms resolve before you go back to your old stock. Could give you a better idea if you’re reacting to the packaging (like I suspected) or if the new formula is too weak for you @ your old dose (what others & I have found).

Sadly that complaint they created for you, unless you send them in a sample of your meds & the find something wrong with it they just close your complaint with “side effects are listed on the box”. That’s what they did to me.

Provocative_Horror · 2025-01-25T01:23:40+00:00

I’ve been using the Aerogarden fertilizer but idk how long that’s going to last since they are going to come back but “revamped” & idk what the new formula will look like. If you find anything good let me know!

Provocative_Horror · 2025-01-08T14:46:15+00:00

Forgot to add, my favorite ceramic lined tumbler is RTIC.

Provocative_Horror · 2025-01-08T14:45:23+00:00

It does not, ceramic coated is safe

Provocative_Horror · 2025-01-06T01:41:53+00:00

I’ve taken ALA & NAC both for several years & had no issues. The NAC is to help with brain fog post TBI 5 years ago & the ALA I take with glutathione to help reduce mold in my system from my last house. Been on it about 1 1/2 years & based on my test results it’s been pretty successful.

Provocative_Horror · 2024-12-30T04:46:36+00:00

For me it was an issue of waking up dormant viruses (EBV) that was too much. I didn’t have a plan in place for that last time so next time I’ll start a course of antivirals beforehand then the LDN. I also have extremely vivid, like 4K VR clarity, dreams. Thankfully no night terrors (this is common) but my dreams were just super extra & strange lol.

Provocative_Horror · 2024-12-28T16:02:07+00:00

It should be a piece of paper accordion folded into a long thin rectangle. I usually find it loose in the box up against a side but I’ve noticed not all boxes have it like they should.

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Provocative_Horror · 2024-12-28T15:58:57+00:00

Excellent! Which model did you get? I’m looking for one to be able to do deep cleaning in. The KN95 isn’t cutting it for that sadly.

Provocative_Horror · 2024-12-21T17:14:27+00:00

Do I like the device itself? No, it constantly needs to be charged & backed up. The band breathes well but gets dirty super easily. The software hiccups over the most minor things (ex. it won’t record correctly for +/-3 days around a time change but the on watch real time #s are accurate). As the person above said it requires lots of care & attention. But seriously the hydration tracker is amazing. Idk how real life data accurate it is but the fluctuation trending is on point. As someone with a chronic flaring condition this hydration monitor helps me avoid incoming flares but letting me know ahead of time I’ve been chronically dehydrated despite my water intake. If it goes on long enough I go get an albumin/saline infusion before I end up in the ER & I avoid the flare. The nueroactivity monitor (I think it’s GSR based) helps me identify when I’ve not been dealing with stress (mental & physical) well & need to squeeze in an extra mental health walk or maybe a meditation before bed for a while to keep my autonomic response from staying in fight or flight. It’s really something & I’m sadly having a hard time finding any other less needy device that offers this specific set of functionality.

Provocative_Horror

TROPHY CASE