Long COVID with ME/CFS, still deteriorating six years in, no benefit from stimulants

Condition: ME/CFS
At worst: Moderate (mostly housebound)
Ill for: 6 years
Last post: Oct 2026

In their words

Condition: ME/CFSit wasn’t until my last crash with Adderall I realized that yeah, I do have CFS In context ↗
At worst: ModerateI went from mild to moderate as a result In context ↗
Now: No benefitNo, I’m continuing to deteriorate each year - six years in, gradually moving from mild to moderate. In context ↗
Began after: COVIDCOVID, then stimulants like Sunosi, Adderall.

Read from 119 of their posts and comments; links to the 56 this page draws on

Summary

Creek 75558 caught COVID in 2020 and developed long COVID with ME/CFS, hEDS, MCAS and hyperadrenergic POTS, plus severe medication intolerance. Trials of ADHD stimulants (Adderall, Vyvanse, Concerta, Sunosi) each caused baseline-lowering crashes, taking them from mild to moderate. Six years in they were still deteriorating, with almost no tolerated medication; Ativan was the only thing that helped, while cannabis and NADH gave brief relief.

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What they tried

Also tried

CDP choline (Cognizin powder)· HelpedRadical acceptance· Helped Zyrtec and Claritin· Helped · wore off Zyrtec and Claritin· Helped · wore off Light therapy· Helped Mulungu· Helped Cold weather and cold showers· Helped Sleep deprivation· Helped · wore offSugar· Helped · wore offNADH (ENADA)· Helped Acupressure mat· HelpedCannabis (THC/weed)· Helped · wore offCervical collar· Helped Ativan (lorazepam)· Helped CPAP· Helped Alcohol· Helped Phosphatidylserine· Helped Hops extract· Helped Emoxypine succinate· Helped Stellate ganglion block· Helped · wore off Intranasal oxytocin· Helped Tributyrin-X· No change Palmitoylethanolamide· No change Xelstrym (transdermal Vyvanse)· No change Gabapentin· No changeB and C vitamins· No changeZinc L-Carnosine· No change Low histamine diet· No change Pacing· No change Physiotherapy· No change Guanfacine· No change Strattera (atomoxetine)· No change Clonidine· No change Lexapro (escitalopram)· No change TMS· No change DAO· No change Vitamin C· No change Cromolyn sodium· Worse Quercetin· Worse Luteolin· Worse Pepcid (famotidine)· Worse Atrantil· Worse Rifaximin· Worse Vyvanse· Worse Concerta· Worse LDN· Worse Ketotifen· Worse Ritalin· Worse Qelbree· Worse Vagus nerve stimulation· Worse Hydroxyzine, Allegra, Xyzal, Doxepin· Worse Hydroxyzine, Allegra, Xyzal, Doxepin· Worse Hydroxyzine, Allegra, Xyzal, Doxepin· Worse Hydroxyzine, Allegra, Xyzal, Doxepin· Worse LDA (low-dose Abilify)· Worse Vitamin D· Worse Ketamine infusion· Worse Amantadine· Worse Tirzepatide· Worse Sunosi (solriamfetol)· Much worse Adderall· Much worse Wellbutrin (bupropion)· Much worse

Their words about each treatment

CDP choline (Cognizin powder) · HelpedI’ve been taking 250mg of CDP choline (Cognizin powder from Nootropics Depot) and notice an improvement in memory and processing speed. In context ↗
Radical acceptance · Helpedradical acceptance can be a useful behavioral tool that at least helps prevent you from making things even mentally worse In context ↗
Cromolyn sodium · WorseCromolyn sodium (severe reflux and depression) In context ↗
Quercetin · WorseQuercetin and luteolin (slow COMT and awful anxiety, heart palpitations a few days after taking it) In context ↗
Pepcid (famotidine) · WorsePepcid (severe derealization, blurry vision) In context ↗
Atrantil · WorseAtrantil (microcrystalline cellulose allergy) In context ↗
Tributyrin-X · No changeTributyn-X (no reaction, but no effect after consistent use over the last couple of months) In context ↗
Palmitoylethanolamide · No changePalmitoylethanolamide (supposed to help with MCAS and pain but no effect) In context ↗
Zyrtec and Claritin · HelpedH1 antihistamines like Zyrtec and Claritin help a little, but not enough to justify their chronic use in part because it causes fairly bad constipation In context ↗
Light therapy · HelpedI’m trying light therapy and Sunosi as prescribed by my sleep doctor, and they help some with my wakefulness In context ↗
Sunosi (solriamfetol) · Much worseI took Sunosi for 2 weeks and it left me in a severe crash. I went from mild to moderate as a result. In context ↗
Mulungu · HelpedI found r/Mulungu to work wonderfully well. It helps with both sleep onset and duration. In context ↗
Rifaximin · WorseTried Rifaximin antibiotics for SIBO ... all which worsened my MCAS and CCI specifically In context ↗
Adderall · Much worseI had a 2 week crash after taking Adderall In context ↗
Vyvanse · Worsestimulants (Vyvanse, Concerta) definitely made mine worse In context ↗
Concerta · WorseConcerta (severe anxiety and derealization) In context ↗
Xelstrym (transdermal Vyvanse) · No changeXelstrym (a transdermal patch version of Vyvanse, filler/dye free, but does not control my ADHD or excessive daytime sleepiness) In context ↗
LDN · WorseI had tried 0.5mg a few months ago for 5 days, and while it helped my sleep some, I felt a strong sense of anhedonia that took a couple of weeks to clear. In context ↗
Gabapentin · No changeWhat hasn’t helped: ... Gabapentin In context ↗
Ketotifen · WorseEven Ketotifen microdosed in distilled water causes an immediate reaction for me. In context ↗
B and C vitamins · No changeB, C, D vitamins In context ↗
Zinc L-Carnosine · No changeZinc L-Carnosine In context ↗
Low histamine diet · No changeLow histamine diet (in fact, a “low” histamine food could trigger it while a “high” one wouldn’t In context ↗
Cold weather and cold showers · HelpedNon-pharmaceutically, cold temperatures help reduce the itching and burning sensation. In context ↗
Sleep deprivation · Helpedso much better - to the point of remission for a day - when I get <4 hours In context ↗
Sugar · HelpedSugar helps my energy levels both mentally and physically for about an hour. In context ↗
NADH (ENADA) · HelpedI’ve been taking 20mg of ENADA a couple of times per day. I definitely notice a reduction of fatigue, but only for about 2-3 hours. In context ↗
Ritalin · WorseI don’t tolerate other stimulants (Vyvanse, concerta, Ritalin, Focalin, Wellbutrin, Subosi etc.) In context ↗
Wellbutrin (bupropion) · Much worseIt also made my hyperPOTS and BP much worse. I think I took the 150mg XR dose once and my symptoms were bad enough to not try it again. In context ↗
Qelbree · Worsenon-stims like guanfacine, strattera, and qelbree either In context ↗
Pacing · No changePacing is just a means to not make things worse for me, but it hasn’t improved my symptoms. In context ↗
Vagus nerve stimulation · WorseI have the exact same problem with vagus nerve stimulation and quit as a result. think it actually deregulated my nervous system further. In context ↗
Acupressure mat · HelpedSomething that appears to help activate my parasympathetic nervous system without swinging back to sympathetic activation is lying my back on an acupressure mat for about 20 minutes. In context ↗
Cannabis (THC/weed) · HelpedAbsolutely helps me. Best thing for my long COVID/EDS/CFS/MCAS so far. In context ↗
Physiotherapy · No changephysical therapy hasn’t helped so far In context ↗
Cervical collar · HelpedWhen I wear a cervical collar, I notice my heavy eye symptoms improve some In context ↗
Guanfacine · No changeStrattera, clonidine, and guanfacine don’t work for me either In context ↗
Ativan (lorazepam) · HelpedAtivan is the only thing that helps me In context ↗
Hydroxyzine, Allegra, Xyzal, Doxepin · WorseI react with itching, burning, fatigue, and brain fog to all antihistamines (Ketotifen, Hydroxyzine, Zyrtec, Claritin, Allegra, Xyzal, Doxepin, etc.) In context ↗
LDA (low-dose Abilify) · WorseI had tried it earlier but had an MCAS reaction to it In context ↗
CPAP · HelpedI’m using a CPAP and it makes a difference but the poisoned feeling remains. In context ↗
Alcohol · HelpedAlcohol and sleep deprivation are two potent ways that temporarily reduce my CFS symptoms In context ↗
Vitamin D · WorseEven with K2 and at low doses, bone/joint pain increases dramatically. In context ↗
Lexapro (escitalopram) · No changeit certainly hasn’t been helping my depression and anxiety any longer In context ↗
Phosphatidylserine · HelpedPhosphatidylserine has helped my brain fog a bit. In context ↗
Ketamine infusion · WorseWorsened my depression, anxiety, hyperPOTS, MCAS, caused PEM. Definitely not for me. In context ↗
Amantadine · WorseUnfortunately amantadine caused PEM for me because it still increases norepinephrine a bit In context ↗
Hops extract · HelpedI’ve been using hops extract recently and find it quite relaxing. Haven’t had any side effects either, which is rare for me. In context ↗
Emoxypine succinate · HelpedI tried it once. It felt really relaxing to me, like a mid-strength benzo. My fatigue improved for a while. In context ↗
TMS · No changeDid nothing for my depression or ME, unfortunately. In context ↗
DAO · No changeI’ve exhausted all H1s, H2s, cromolyn, ketotifen, quercetin, vitamin c, DAO, etc. In context ↗
Vitamin C · No changevitamin c doesn’t seem to help In context ↗
Stellate ganglion block · HelpedI felt a mild improvement in anxiety for about a week for each side. No negatives, but no lasting improvement or in my CFS symptoms either. In context ↗
Intranasal oxytocin · HelpedI take intranasal oxytocin when I wake up and lie back down for a bit so I can calm down. In context ↗
Tirzepatide · WorseI had to stop. All of the side effects got worse and I’m in a crash now. In context ↗

Their path

How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.

Show as a table

When	What happened	Where they were
2020	COVID-19; first symptoms tingling, pain and numbness in arms, shoulders and neckmy first long COVID symptom was tingling, pain and numbness in my arms, shoulders, traps, pecs, collarbone, and neck In context ↗	Mild
2021	worsening fatigue and POTS symptomsWorsening fatigue and POTS symptoms in 2021 In context ↗	Mild
2023	MCAS, POTS, SIBO and neural compression conditions worsenedMCAS, POTS, SIBO delayed sleep phase disorder, and all of my neural compression conditions worsened in 2023- first half of 2024, but with enough peaks in quality of life that I could get by In context ↗	Mild
late 2024	severe crash on Sunosi; baseline fell from mild to moderateI took Sunosi for 2 weeks and it left me in a severe crash. I went from mild to moderate as a result. In context ↗	Moderate
2024-12-27	PEM crash after pushing his sleep schedule with Sunosi and light therapyI pushed myself too far, and now I am in what I believe to be a PEM crash: crushing fatigue like I haven’t experienced before In context ↗	Moderate
2025-04-17	back to self-rated mild, but PEM getting more frequentCurrently mild, but my PEM is getting more frequent, so I’m taking a step back In context ↗	Mild
2026-06-25	continuing to deteriorate from mild toward moderate; still working full time remotelyNo, I’m continuing to deteriorate each year - six years in, gradually moving from mild to moderate. In context ↗	Moderate

Adverse events

Cromolyn (Gastrocrom, Nalcrom)“Cromolyn sodium (severe reflux and depression)” In context ↗ Side effects
Baicalein and quercetin“Quercetin and luteolin (slow COMT and awful anxiety, heart palpitations a few days after taking it)” In context ↗ Mood or psychiatric effects
Luteolin and flavonoid blends“Quercetin and luteolin (slow COMT and awful anxiety, heart palpitations a few days after taking it)” In context ↗ Heart rhythm problems
Famotidine (Pepcid)“Pepcid (severe derealization, blurry vision)” In context ↗ Mood or psychiatric effects
Atrantil“Atrantil (microcrystalline cellulose allergy)” In context ↗ Allergic reaction / anaphylaxis
Cetirizine (Zyrtec), Loratadine (Claritin)“H1 antihistamines like Zyrtec and Claritin help a little, but not enough to justify their chronic use in part because it causes fairly bad constipation” In context ↗ Gut side effects
Rifaximin / Xifaxan“Tried Rifaximin antibiotics for SIBO ... all which worsened my MCAS and CCI specifically.” In context ↗ Made symptoms worse
Amphetamine salts (Adderall), Lisdexamfetamine (Vyvanse, Elvanse), Methylphenidate (Ritalin, Concerta)“various stimulant medication for untreated ADHD ... all which worsened my MCAS and CCI specifically.” In context ↗ Made symptoms worse
Solriamfetol (Sunosi)“one of the side effects was cold hands. This symptom has persisted after stopping” In context ↗ Side effects
Solriamfetol (Sunosi)“I believe Sunosi is what tipped my pre-existing EDS fatigue into a full-blown CFS crash” In context ↗ Made symptoms worse
Methylphenidate (Ritalin, Concerta)“Concerta (severe anxiety and derealization)” In context ↗ Mood or psychiatric effects
Amphetamine salts (Adderall)“because of the blue dye and fillers, I begin to itch and have a rash” In context ↗ Allergic reaction / anaphylaxis
Low-dose naltrexone“I felt a strong sense of anhedonia that took a couple of weeks to clear” In context ↗ Mood or psychiatric effects
Amphetamine salts (Adderall)“I unfortunately crashed using it because it caused MCAS flares and oversympathetic activation (hyperPOTS) that caused PEM” In context ↗ Made symptoms worse
Vagus nerve stimulation“I have the exact same problem with vagus nerve stimulation and quit as a result. think it actually deregulated my nervous system further.” In context ↗ Made symptoms worse
Amphetamine salts (Adderall), Lisdexamfetamine (Vyvanse, Elvanse), Methylphenidate (Ritalin, Concerta)“multiple ADHD/excessive daytime sleepiness stimulant medications last year that caused a crash 6 months ago” In context ↗ Made symptoms worse
Amphetamine salts (Adderall)“I had a 2 week crash after taking Adderall, then another 3 week crash after taking Sunosi” In context ↗ Made symptoms worse
Amphetamine salts (Adderall), Lisdexamfetamine (Vyvanse, Elvanse), Methylphenidate (Ritalin, Concerta)“Stimulants unfortunately made me crash and permanently worsened my baseline, POTS, and MCAS.” In context ↗ Made symptoms worse
Ketamine“ketamine worsened my hyperPOTS (it increases adrenaline and BP a lot), and it seemed to worsen my MCAS.” In context ↗ Made symptoms worse
Ketamine“I also felt extremely depressed and overstimulated for ~4 days afterwards.” In context ↗ Mood or psychiatric effects
Amantadine“Unfortunately amantadine caused PEM for me because it still increases norepinephrine a bit” In context ↗ Made symptoms worse
Bupropion (Wellbutrin)“It also made my hyperPOTS and BP much worse. I think I took the 150mg XR dose once and my symptoms were bad enough to not try it again.” In context ↗ Made symptoms worse
Lorazepam (Ativan)“Ativan (used to be my rescue med but caused PEM, paresthesia, itching)” In context ↗ Side effects
Cromolyn (Gastrocrom, Nalcrom)“even one drop of Cromolyn across different brands causes significant itching and burning” In context ↗ Side effects
Cetirizine (Zyrtec), Loratadine (Claritin), Hydroxyzine (Atarax, Vistaril), Fexofenadine (Allegra), Levocetirizine (Xyzal), Doxepin (Sinequan, Silenor)“I react with itching, burning, fatigue, and brain fog to all antihistamines (Ketotifen, Hydroxyzine, Zyrtec, Claritin, Allegra, Xyzal, Doxepin, etc.)” In context ↗ Side effects
Low-dose Abilify / aripiprazole“I had tried it earlier but had an MCAS reaction to it” In context ↗ Autoimmune or inflammatory flare
Solriamfetol (Sunosi)“I took Sunosi for 2 weeks and it left me in a severe crash. I went from mild to moderate as a result.” In context ↗ Made symptoms worse
Emoxypine (Mexidol)“I can’t take it more than a few days in a row without more brain fog.” In context ↗ Side effects
Tirzepatide (Mounjaro, Zepbound)“Increased skin sunburn/sandpaper sensation ... Increased fatigue and need to sleep ... Increased sensation of weakness” In context ↗ Side effects
Tirzepatide (Mounjaro, Zepbound)“I had to stop. All of the side effects got worse and I’m in a crash now.” In context ↗ Made symptoms worse
“continuous use of THC worsens my vascular issues (I get rebound vasoconstriction after it wears off), motility, and sleep quality significantly.” In context ↗ Made symptoms worse
Lisdexamfetamine (Vyvanse, Elvanse)“Vyvanse and other stimulants contributed to my baseline decreasing.” In context ↗ Made symptoms worse

Symptoms mentioned

Anxiety & low mood Brain fog Gut problems Headaches & migraine Heart symptoms & palpitations Light & noise sensitivity Mast cell (MCAS) & allergies Muscle weakness Neuropathy & tingling POTS & dysautonomia Pain & fibromyalgia Post-exertional malaise Sleep problems

Their words about their symptoms

Post-exertional malaiseI pushed myself too far, and now I am in what I believe to be a PEM crash In context ↗
Brain fogworsening brain fog, fatigue, dizziness, pain, that worsens with each subsequent dose In context ↗
POTS & dysautonomiabecause i have hyperadrengenic POTS In context ↗
Mast cell (MCAS) & allergiesMy primary med hypersensitivity symptoms are body-wide itching, burning, hot flash sensations that occur within seconds to minutes of administration In context ↗
Sleep problemsSleep feels particularly bad, almost damaging.. In context ↗
Pain & fibromyalgiaI have a lot of chronic pain (EDS) In context ↗
Headaches & migraineI frequently feel intense pressure behind my nasal cavity along with my upper head. In context ↗
Gut problemsI believe that I have dysbiosis from my symptoms alone: bloating, brain fog, head pressure, and itching after eating In context ↗
Light & noise sensitivityhead pressure from CCI and POTS, light and sound sensitivity, extreme anxiety, and derealization In context ↗
Heart symptoms & palpitationsawful anxiety, heart palpitations a few days after taking it In context ↗
Muscle weaknessBilateral leg, back pain, heaviness, paresthesia) in 2020 In context ↗
Neuropathy & tinglingI frequently feel burning and prickling sensations all over my body In context ↗
Anxiety & low moodit certainly hasn’t been helping my depression and anxiety any longer In context ↗

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What they tried

Also tried

Their path

Adverse events

Symptoms mentioned

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