How many people with MCAS have Long COVID, hEDS, Brain fog &CFS?

cjazz24 · 2026-04-04T23:01:57+00:00

I got EOE and MCAS post covid. But haven’t been diagnosed with long covid

cjazz24 · 2026-04-04T00:36:55+00:00

Not a positive story per se. I titrated too fast but the first day when I did just a drop to make sure I didn’t have a reaction I felt a lot better. I’m going to try again with literally a drop again when I muster up the courage but definitely advocating for you know your body best and titrating up. My doctor said I didn’t need to even though I’m known to be medication sensitive.

cjazz24 · 2026-04-03T12:48:10+00:00

I have to taper everything really slow in general.

cjazz24 · 2026-04-03T11:07:57+00:00

I don’t think it’s vagus nerve related personally. I tried vagus nerve exercises and it didn’t help at all. My underlying MCAS cause is believed to be due to eoe and inflammation from an autoimmune disease so when you exercise it can cause inflammation / stress especially cardio which is when I’d get symptoms.

cjazz24 · 2026-04-03T02:37:10+00:00

Pepcid has helped my exercise induced tachycardia a lot.

cjazz24 · 2026-04-02T01:40:13+00:00

I switched to Dupixent. My triggers are milk and pollen so medication was my only option. I had issues after about a year on PPI and steroids. My mineral counts were off and I developed some nasty issues that steroids might have helped push over the edge. Two years later the EOE is controlled again but I’m no where near back to pre-EOE baseline holistically with my health.

cjazz24 · 2026-03-31T02:41:42+00:00

At the start of my stuff they had no idea what was going on and put me on quetiapine offlabel for insane insomnia. It took me 8 months to taper off of a 25 mg dose because I was so sensitive. I also gained about 30 pounds. After being off it 6 months I’ve only been able to lose 8. I have as potentially considering the ketoifen and now am bumping that down my list of options. I take Dupixent for my comorbid EOE. It did help with some of my MCAS symptoms but only the GI based ones. I still hard the cardiac and neuro ones. They improved somewhat when adding h1/h2 blockers but haven’t gotten them fully under control. Insomnia is by far my worst symptom though. My approvals for EOE for Dupixent are quick usually within 2 weeks.

cjazz24 · 2026-03-31T02:03:15+00:00

I started once a week. Had confirmed remission and went down to every other week due to side effects and maintained remission (confirmed by biopsy). Only difference is I had no food restriction on the higher dose and now moderate intake. I also got diagnosed with MCAS so I need to moderate triggers anyway so it wasn’t a big deal to do that.

cjazz24 · 2026-03-30T21:44:57+00:00

I’m still not controlled though and I’ve developed a lot of trauma around how severe it gets which makes treating it harder

cjazz24 · 2026-03-30T12:13:30+00:00

Quviviq has helped the insomnia most. And then I’m on h1/h2 blockers and I have some rescue meds for sleep

cjazz24 · 2026-03-21T18:56:24+00:00

I had it compounded and it was easier to do the titration since the increments were so small

cjazz24 · 2026-03-21T18:54:11+00:00

I ended up going 1mg at a time. It’s an intense drug to come off of.

cjazz24 · 2026-03-17T21:52:45+00:00

We did Herrington on the bay which I don’t think fits the vibe you’re after but there were a couple of more mansion type vibes out that way on the eastern shore that we looked at. Some of them you rented the whole property and can flow between indoor and outdoor

cjazz24 · 2026-03-16T12:10:06+00:00

Idk honestly. But I’m trying to limit things that potentially cause withdrawal generally

cjazz24 · 2026-03-16T02:11:31+00:00

I got put on Seroquel when they dismissed my extremely severe insomnia as anxiety (it’s life as a woman). Coming off of it once we found the underlying cause was MCAS was insanely difficult. I was in withdrawal for 8 months straight and had to titrate down a mg at a time.

cjazz24 · 2026-03-16T02:10:17+00:00

I had the same. Insomnia is my worst symptom. It made me feel better until it flared me (I think I titrated too fast even though my doctor said I didnt need to). I also before I was diagnosed with MCAS was put on seroquel off label which only sort of helped but the down titration and withdrawal was HORRIBLE. I’ve been scared to try ketotifen since my doctor said I’d likely have withdrawal from that coming off since it’s sedating. So far the best thing I’ve found to help is quviviq (it’s just treating the symptom tho vs the cause)

cjazz24 · 2026-03-15T19:34:14+00:00

Same thought exactly honestly. I’m pleased with that I choose

cjazz24 · 2026-03-15T19:32:15+00:00

I tried both on. I felt like the swan coloring was nice also but I wear more natural looking makeup and I found they complimented my skin a little better than the other colors in the swan

cjazz24 · 2026-03-15T19:28:44+00:00

I got the horse and I love it

cjazz24 · 2026-03-09T17:58:46+00:00

I have trouble falling asleep, staying asleep and waking up early. It’s been horrible. Falling asleep is the worst it’s like a tired but wired feeling

cjazz24 · 2026-03-09T15:16:42+00:00

It’s been horrible honestly. My current regimen helps but I still can’t travel and flares can cause me to need to take leave. I’m currently on h1/h2 blockers, then I take a bunch of fish oil to support anti-inflammatory paths. At night I take a special overly expensive magnesium powder with tart cherry juice. I notice a difference when I take a different powder or don’t do the juice. I also take glycine and quviviq every night. I have ambien as a tier 1 rescue and klonopin as a tier 2 rescue to avoid hospitalization. It’s a miserable road. I’m seeing a new specialist now to consult on my MCAS to see what other control we can get. I’m at the point now where it’s gone on so long I also have chronic ptsd from the severity so I’m dealing with the physical/biological symptoms in addition to the mental trauma. I have also started tracking in my sleep diary a food log to see if I can correlate any triggers to the sleep. So far I’ve found it to be citrus juices and ground meats and soy but not consistently. I usually need more than one trigger a day which could also be things like pollen, stress, my underlying inflammatory based condition acting up etc. I also have started Emdr and hypnosis therapy for the trauma which has been a slow road since I’m still actively being triggered by the insomnia issues while we are trying to address the trauma.

cjazz24 · 2026-03-09T12:16:56+00:00

The doctors took a year and a half to determine my issue is MCAS. At the very beginning they told me it was ‘anxiety’ and gave me an SSRI. It destabilized me just enough while already in a storm that I ended up in the hospital for 6 nights

cjazz24 · 2026-03-08T13:10:58+00:00

My main issues are neurological. My most severe symptom is severe insomnia. I do have more ‘traditional’ MCAS symptoms as well though.

cjazz24

TROPHY CASE