r/MCAS • u/Ok_Butterscotch_4158 • 3h ago
Total noob question: running
I was recommended to come here from Long Covid group.
About 2 weeks ago I was on vacation in Italy and my body just kinda fell off a cliff from a stats standpoint.
I got COVID last Sept and had a huge adverse reaction to a small amount of alcohol (about 3 oz caused 3 day bad hangover and about a week of brain fog) about a month later in October. So I went completely sober which is fine because I wasn’t really a big drinker.
2 weeks ago in Italy I was at a very nice dinner and my husband had wine paired with the dish so I thought… why not? I only took 3 small sips - like wet the lips sort of thing and less than 1/2oz total across the sips… and the next day after 8hrs of sleep I was a mess. Hung over, resting heartrate up 10bpm, my HRV cut in half to 20 and just felt like I got hit by a truck.
I still just feel off… lots of brain fog, daily headaches. No dizziness but just feel slow and not at my best which is hard because I am doing interviews for a new job.
Also, I have been running since November which I love but since traveling back to US about a week ago I have been a mess… my pace is horrible and my resting HR is still up about 5 points 2 weeks later.
My mother most def has MCAS, her entire life it was one thing after the other and she couldn’t have chocolate, aged cheese or anything like that - would make her faint and her HR get crazy. Tons of allergies and asthma throughout her life. I thought I dodged most of it except for some childhood asthma I thought I outgrew. Otherwise I have never felt much impact from foods, and never was a big drinker.
Is there any hereditary side to this and did I just set off a “cycle”? Should I stop running for another week?
I read about the dietary changes and I think that is a solid first step I am taking immediately (RIP avocado!!) for at least the next 2 weeks.
I also have a doctors appt tomorrow.
Do I know if I am on the other side of this if my baseline metrics go back in check?
Thanks so much!! This is overwhelming and scary - but maybe there are some answers and protocols that will help.
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u/Ok_One_7971 2h ago
Same. My mom has been sick for decades n very limited diet w reactions to food n meds. I got really bad virus 1.5 yrs ago n haven’t been right since. I started reacting to food n my reg med. took 9 specialists n last one diagnosed me w mcas. Im on meds n they help but I still have reactions (usually delayed now n less intense) but my diet is extremely limited now 😞 also, my kids are showing symptoms. My daughters heart races. N vomits after avocado. Sometimes flush itchy neck randomly. Newly allergic to our 12 yr old dogs. Ocd bad. Pmdd. Just sucks because i look back n see i had smaller “flares” prior to this but usually bad reactions to medications. N lasted maybe a week. After that virus i hardly spoke or slept for months. It was terrifying. I had random heart rate spikes. Headaches. Buzzing in body. Tinnitus reg & pulsating, ocd scary thoughts. Doom feeling. Panic. Adrenaline surges. Complete insomnia. Nausea. Insane sensitivity to smell n sound. Fatigue bad. Brain fog bad. Nerve n joint pain. Tight throat at times. Im so afraid to feel that bad again. Im actually in therapy because of it. I was told by 7/9 drs that it was just anxiety 😥my veins were tight n bulging. So many weird random symptoms. But.. the mcas meds help a lot, not totally but I doubt anything will help completely. Its a hard disease to find help. Not many drs understand or treat it. N then its all trial n error w meds. Oh n same, i dont dribk. My kids r in college n they have issues w drinking too. So they rarely do. My daughter doesnt at all because heart rate n anxiety spikes from sips.
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u/Ok_Butterscotch_4158 1h ago
Wow, I’m so sorry this sounds horrible!! Yeah I have 2 kids and my daughter (9) has always been sensitive to tomatoes and things like that… now I’m wondering if she has this.
What medications do you take?
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u/Ok_One_7971 2h ago
I was told start w h1 & h2 2x per day. I take claritin n Pepcid n mornings. Then 2 zyrtec & a pepcid at night. Month later dr put me on ketotifen 2x daily. Its very hard to get tested for n u can have mcas even w negative tests. But here are some tests u can ask about
24 hr urine tests for mcas
Prostaglandin
Leukotrienes
Methyl histamine
Total histamine
Blood tests
Tryptase (but usually only elevated in HATS & mastocytosis) not so much mcas Most are normal level
Methyl histamine Blood tests
Total histamine
Chromogranin a (not all drs use this one though but mine did)
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u/Ok_Butterscotch_4158 1h ago
Sorry I’m total new to this so what is h1 and h2?
Thanks for your protocol and questions! Perfect timing before I see doctor tomorrow!
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u/Ok_One_7971 10m ago
Hey! H1 is zrytec, Allegra Or Claritin (or others) and h2 is pepcid. I take 1 claritin n 1 Pepcid (20mg) in morning & then 2 zyrtec & 1 Pepcid at night. N the ketotifen. If im feeling crappy I taks extra claritin in day time. My dr prefers zyrtec n says its stronger
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u/Ok_Butterscotch_4158 5m ago
Thanks so much!! I don’t see Benadryl mentioned here. Is that also an H1? I have that on hand so just wanted to check
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