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Long COVID Moderate → somewhat betterIll 5 years before improving or writingNeeds ongoing treatment

Severe MCAS and POTS after COVID vaccination, partly better with Adderall and midodrine

Sequoia 45416 on RedditLast post Apr 2026

Condition
Long COVID
At worst
Moderate (mostly housebound)
Ill before improving or writing
5 years
Last post
Apr 2026
In their words
  • Condition: Long COVIDPost-vax long haul here In context ↗
  • At worst: Moderatenear-total food intolerance ... had to sell my car (which I can no longer drive anyway)
  • Now: Somewhat betterI still feel sick all day, every day, but thankfully at least I can think. In context ↗
  • Began after: a vaccinationI'm here due to post-vaccine Longhaul and just got my first actual infection about two weeks ago.
Read from 61 of their posts and comments; links to the 45 this page draws on

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Summary

Sequoia 45416 became ill after COVID vaccination in 2021 with severe MCAS and POTS. In early 2022 she was hospitalised with severe hyponatraemia, delirium and fainting. Adderall, verapamil, midodrine and rapamycin eased brain fog and helped her be upright and work, but cardiac symptoms and fatigue worsened and she remained sick all day. Constant colds from her child destabilised her, and rapamycin's benefit faded.

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What they tried

What they credit

midodrine· Helped a lotGLP-1 med· Helped a lotAdderall· Helped a lot · main · wore offnystatin· Helped a lotnicotinamide riboside· Helped a lotBerberine· Helpedblack seed oil· Helpedrapamycin· Helped · wore offintermittent fasting / 1-2 day fasts· Helpedlumbrokinase· Helpedverapamil· HelpedL-serine· Helpedbilastine· Helped

Also tried

oxygen cannula· Helped a lotl-citrulline· Helped a lot · wore offBenadryl (diphenhydramine)· HelpedCoQ10· HelpedPQQ· Helpedaspirin· Helpedacyclovir· HelpedIV saline· Helpednitazoxanide· HelpedSudafed (pseudoephedrine)· Helpedambroxol· Helpedriboflavin (B2)· Helpedpantethine· Helpedcholine bitartrate· Helpedcarnosine· HelpedTM5614· Helped · wore offantibiotics· Helped20% hydroxyapatite toothpaste· Helpedmigraine treatments· Helpedhydroxyzine· Helpedrat tapeworm cysticerci· No changeelectrolytes· No changedrinking saltwater· No changecimetidine· No changeNAC· WorsetVNS· Worseketo· Worseprednisone / steroids· Worsenicotine gum· WorseLDN· WorseSingulair· Worse10-day water fast· WorseFMT· WorseMestinon· WorseVitamin D· Worsegalantamine· Worsetaurine· Worsethiamine· Worseclopidogrel· Worsedigestive enzymes· Worsecetirizine / Zyrtec· WorseKetotifen· Much worseSSRIs· Much worsethymalfasin· Not saidchlorpheniramine· Not said
Their words about each treatment
  • NAC · WorseI bought these at Sprouts this summer before they discontinued them but I reacted badly In context ↗
  • tVNS · WorseIt seemed to help a bit with brain fog at first but once I worked my way up to a 20 minute session I crashed HARD In context ↗
  • Ketotifen · Much worseKetotifen, an antihistamine and mast cell stabilizer, gave me an allergic reaction so bad I ended up hospitalized. In context ↗
  • keto · WorseI gave myself the first GI issues of my life by doing keto for a couple months just before I got Long Haul. In context ↗
  • Benadryl (diphenhydramine) · HelpedI take Benadryl as it's the only antihistamine that doesn't give me big rebound issues. In context ↗
  • CoQ10 · HelpedCoQ10 has helped my brain fog a lot. In context ↗
  • PQQ · HelpedPQQ but not every day also helps brain fog and food reactions. In context ↗
  • Berberine · HelpedBerberine and black seed oil both seem a little helpful. In context ↗
  • prednisone / steroids · WorseI get this from steroids, LDN, Singulair, or eating food that my mast cells don't think I should. In context ↗
  • aspirin · HelpedHeck yeah, I used to tolerate aspirin and it legit reduced fog by 50%. In context ↗
  • nicotine gum · Worsenicotine makes me foggier. In context ↗
  • LDN · WorseLDN (helped but made me extremely depressed so I stopped) In context ↗
  • acyclovir · HelpedSeemed to help brain fog while on it for ten days. In context ↗
  • IV saline · HelpedI can get saline and IV Benadryl at urgent care ... avert a crisis and go home. In context ↗
  • rapamycin · Helpedyes, I’ve been on rapamycin for a month, dosing once per week, titrating up (1mg-2-3-4-5mg) and it’s been very helpful. In context ↗
  • 10-day water fast · WorseAfterwards I flared really badly for a month and then returned to my baseline In context ↗
  • oxygen cannula · Helped a lotin the ten minutes before an endoscopy I felt completely normal as soon as I got the oxygen cannula In context ↗
  • FMT · WorseIt helped for a week and then worsened things for me (lost even more food tolerance). In context ↗
  • rat tapeworm cysticerci · No changeAlso didn't work, but no harm done In context ↗
  • nitazoxanide · Helpedit has definitely helped brain fog while taking it In context ↗
  • intermittent fasting / 1-2 day fasts · HelpedOne- or two-day fasts are still helpful for me In context ↗
  • midodrine · Helped a lotThis is what I was started on and it really helped a lot. In context ↗
  • Sudafed (pseudoephedrine) · HelpedEven Sudafed helped me be upright and tolerate more foods. In context ↗
  • GLP-1 med · Helped a lota very low dose of a GLP-1 med is actually extremely helpful for brain fog, malaise, and food tolerance and has cleared up skin rashes In context ↗
  • Adderall · Helped a lotAdderall has significantly helped both POTS and MCAS for me. Definitely among the most helpful treatments I've tried. In context ↗
  • ambroxol · Helpedwhich I also have found quite helpful at 30mg/day In context ↗
  • lumbrokinase · HelpedI ended up tolerating a low dose of lumbrokinase and that has also helped with cognition, muscle burning, breathing. In context ↗
  • verapamil · Helpedwhich I am also prescribed for POTS, is also a bigger help than antihistamines for most MCAS issues. In context ↗
  • riboflavin (B2) · HelpedThe supplements riboflavin (that's B2, and the dose that's quite helpful is high, like 300-400mg), CoQ10, and PQQ are also helpful for my brain fog. In context ↗
  • Mestinon · Worsenicotine and mestinon made me worse In context ↗
  • SSRIs · Much worseI can't tolerate them now that I have LC, they make me way worse. In context ↗
  • pantethine · HelpedPantethine seems to help a bit with the feeling of having an elephant sitting on my brain In context ↗
  • l-citrulline · Helped a lotIt would make me feel normal for a few hours after dosing so I was taking it round the clock. In context ↗
  • Vitamin D · WorseRecently I started taking Vitamin D (5,000 iu per day) and it actually seemed helpful at first. Over the next 3-5 weeks, I started flaring. In context ↗
  • choline bitartrate · HelpedI've had a bit of benefit from choline (bitartrate was the best form for me, the others actually made brain fog worse, as did galantamine). In context ↗
  • galantamine · Worsethe others actually made brain fog worse, as did galantamine In context ↗
  • carnosine · HelpedNow that I am on an antihistamine/anti-inflammatory/anti-platelet polypharmacy I seem to tolerate low doses and it has some benefit overall. In context ↗
  • nystatin · Helped a lotI have been on nystatin for a month--I started taking it for oral thrush but I feel so much better overall. In context ↗
  • taurine · WorseNAC, taurine, thiamine) really made things worse In context ↗
  • nicotinamide riboside · Helped a lotit has made a very noticeable difference for me. Really unexpectedly noticeable for both MCAS symptoms and energy. In context ↗
  • L-serine · HelpedL-serine (not phosphatidylserine) has also been the best find for me this year re: cognitive function. I just feel sharper, more normal. In context ↗
  • TM5614 · HelpedUnexpectedly, my hair completely stopped falling out. In context ↗
  • clopidogrel · WorseI don't really tolerate Clopidogrel In context ↗
  • thymalfasin · Not saidprescribing myself bilastine, ambroxol, acyclovir, thymalfasin, what have you In context ↗
  • antibiotics · HelpedI have never had any improvement as regards the GI symptoms except when actively taking antibiotics. In context ↗
  • 20% hydroxyapatite toothpaste · HelpedI am using a 20% hydroxyapatite toothpaste and I think it has stabilized the enamel situation? In context ↗
  • migraine treatments · Helpedmigraine treatments help that symptom In context ↗
  • electrolytes · No changeElectrolytes don't help like IV does. In context ↗
  • drinking saltwater · No changeI spent about a week drinking saltwater, but it didn't improve. In context ↗
  • digestive enzymes · WorseI've had a lot of trouble with dugestive enzymes in the past In context ↗
  • bilastine · HelpedBilastine is by far the most effective antihistamine for me In context ↗
  • chlorpheniramine · Not saidalso take cimetidine and clorpheniramine In context ↗
  • cimetidine · No changeI failed all H2 blockers In context ↗
  • hydroxyzine · Helpedhydroxyzine is my rescue med In context ↗
  • cetirizine / Zyrtec · WorseZyrtec gave me a lot of anticholinergic side effects In context ↗

Approaches: Calcium channel blockers · GLP-1 drugs · H1 antihistamines · POTS medication · Amino acids and carnitine · Anticoagulants · Antifungals · Diet · Other drugs and medicines · Stimulants · Supplements

Their path

What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.

WhenWhat happenedAfter
2021became ill after COVID vaccinationPost-vax long haul here, dx w/Systemic Mastocytosis and unspecified dysautonomia now. In context ↗
early 2022hospitalised with severe hyponatraemia, passing out and deliriumI kept passing out if I sat or stood. In context ↗
January 2024rapamycin gave about 15% overall improvementit was the three week mark that made me go, wait, yeah, this is better than I’ve been in years. In context ↗Rapamycin / sirolimus
July 2024stimulant eased POTS brain fog and let her be uprighta low dose of Adderall has helped the POTS-induced brain fog more than anything. In context ↗
November 2024rapamycin benefit faded and she stopped itThe benefits seemed less and less over time while the side effects remained, and I decided it wasn't worth continuing. In context ↗
September 2025nicotinamide riboside gave noticeable energy and MCAS benefitI recently added nicotinamide riboside, an NAD+ recursor, and it has made a very noticeable difference for me. In context ↗NAD+ boosters (NMN, nicotinamide riboside, NADH, ATP)
2025-11overall better baseline but still sick every dayIt has allowed me to tolerate other medications and more foods, leading to an overall better baseline. In context ↗

Adverse events

Symptoms mentioned

Anxiety & low moodBrain fogFlu-like symptomsGut problemsHair lossHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
  • Brain fogCognitive dysfunction, exacerbated by eating or chemical/pollution/smoke/fragrance exposure, was the main symptom I cared about because it ruined my life In context ↗
  • Post-exertional malaisemy only PEM event ever In context ↗
  • POTS & dysautonomiaI have severe MCAS/POTS. In context ↗
  • Mast cell (MCAS) & allergiesdx w/Systemic Mastocytosis and unspecified dysautonomia now In context ↗
  • Sleep problemsIn particular I have very early awakening, like I'm up at 2am on a good night. In context ↗
  • Pain & fibromyalgiasleep problems, weakness and neuropathy, total GI discombobulation, muscle pain In context ↗
  • Headaches & migraineI also developed a headache that was worst at the base of my skull In context ↗
  • Gut problemstotal GI discombobulation In context ↗
  • Heart symptoms & palpitationsThe cardiac symptoms and fatigue have actually only gotten worse. In context ↗
  • Muscle weaknesssleep problems, weakness and neuropathy In context ↗
  • Vision problemswhich I experience as feeling intoxicated, blurry/double vision In context ↗
  • Flu-like symptomsnormally I have flu-like malaise most days In context ↗
  • Hair lossMy hair started falling out in ropes In context ↗
  • Anxiety & low moodI DID have anxiety before I got sick--it started post-partum In context ↗

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