ME/CFS
Severe → somewhat betterIll 6 years before improving or writing
Bedridden with ME/CFS and suicidal, now somewhat better after triple therapy and stents
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 6 years
- Last post
- Apr 2026
In their words
- Condition: ME/CFS
I have NeuroCOVID, MECFS, MCAS, Dysautonomia, and recently tested positive for Lyme and reactivated EBV.
In context ↗ - At worst: Severe
I was basically bedridden, forcing myself to get up and move around.
In context ↗ - Now: Somewhat better
Am I cured NO have I improved yes.
In context ↗ - Began after: COVID
After two infections in 2020, I began experiencing lingering GI issues.
In context ↗
Read from 24 of their posts and comments; links to the 15 this page draws on
Summary
Long COVID after COVID infections in 2020 left a 47-year-old man with gut problems, then brain fog, constant adrenaline, severe insomnia and internal tremors. He was bedridden by early 2025 and suicidal, after a bad SSRI reaction and many failed sleep drugs. Nicotine patches gave some energy. A reinfection set him back, but by February 2026 triple therapy and three iliac stents had left him improved but not cured.
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What they tried
What they credit
Also tried
Xanax· Helped · wore offTemazepam· Helpednicotine patch· Helpedrigid pacing· Helpedquiviq· Helped · wore offativan· Helped · wore offdiet· Helpedice pack / migraine cap· HelpedAmbien· No changeMirtazapine· No changeTrazodone· No changeCBT-I· No changehydroxine· No changedepakote· No changevicodin· No changeSeroquel· WorseLunesta· Worseexercise· WorseSSRI· Much worsecannabis (delta 9 gummy)· Much worsevaltrex· Not saiddayvigo· Not saidgabapentin· Not saidclonidine· Not saidsupplements· Not saidMCAS regimine· Not saidmelatonin· Not saidritalin· Not saidCitalopram (Celexa)· Not said
Their words about each treatment
- SSRI · Much worse
The second night, I took it again — and that night, I woke up jerking, shivering, sweating, with a severe headache. My nervous system felt like it was on fire.
In context ↗ - Xanax · Helped
They gave me a Xanax, and for the first time in months, I felt normal.
In context ↗ - Seroquel · Worse
I slept six hours that night, but felt awful the next day and couldn’t work.
In context ↗ - Ambien · No change
he switched me to Ambien and Mirtazapine. Neither worked. I still jerked awake after two hours.
In context ↗ - Lunesta · Worse
At best, I got four hours, but woke up severely depressed and forgetful.
In context ↗ - Trazodone · No change
One night I took trazadone, vicodin, and quiviq and still woke up 4 hours later.
In context ↗ - Temazepam · Helped
They gave me Temazepam and I slept four hours.
In context ↗ - CBT-I · No change
he just recommended CBT-I — which I’d already done on my own with no improvement.
In context ↗ - exercise · Worse
I decided to push myself harder: exercise, keep busy, wear myself out until I could sleep. But I collapsed from exhaustion — and still didn’t sleep.
In context ↗ - valtrex · Not said
I was on valtrex for awhile.
In context ↗ - nicotine patch · Helped
I started with 3mg and went all the way up to the 21mg. They did help with energy but if I pushed to hard my tremors would come out.
In context ↗ - rigid pacing · Helped
If I try to go at full speed mentally or physically they come out so I do very rigid pacing even though I have energy from the patch.
In context ↗ - hydroxine · No change
So far have been on hydroxine, depakote, seroquel, dayvigo, mitrazipine, ambien, ambien xr, trazadone, quiviq, temazapam, lunesta, gabapentin and vicodoin.
In context ↗ - depakote · No change
They tried Seroquel (I would avoid), Depakote (they thought I was bipolar)
In context ↗ - dayvigo · Not said
I have used dayvigo 10mg and quiviq is similar and seems to give me what feels like some normal sleep.
In context ↗ - gabapentin · Not said
I take quiviq each night along with some gabapentin sometimes.
In context ↗ - quiviq · Helped
At first that 1 to 2 hours did feel like I slept but it faded.
In context ↗ - clonidine · Not said
I was on clonidine for a short stent.
In context ↗ - cannabis (delta 9 gummy) · Much worse
I tried cannabis once ended up in the ER as it was my first time and didnt know to take half or quarter of the gummy took the whole thing 32g of delta 9.
In context ↗ - ativan · Helped
Yeah ativan was the only thing for awhile thay worked but max was 2 to 4 hours.
In context ↗ - supplements · Not said
I have tried so many supplements I think I could open a shop with what I have. If they help its only for awhile just like every sleep drug.
In context ↗ - diet · Helped
it does depend on what I eat and when I try to eat early and as clean as I can
In context ↗ - MCAS regimine · Not said
Yeah on MCAS regimine right now to lower histamine.
In context ↗ - melatonin · Not said
I will try melatonin again.
In context ↗ - ritalin · Not said
mitrazapine, trazadone, ritalin, celexa (mild seratonin syndrome)
In context ↗ - ice pack / migraine cap · Helped
I put ice on my head or I have migraine cap I pull out of the freezer and it helps.
In context ↗ - triple therapy · Helped
I am on triple therapy and had 3 illiac stents. Am I cured NO have I improved yes.
In context ↗
Approaches: Anticoagulants · Surgery & structural
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 | After |
|---|---|---|---|
| 2020 | Long COVID after two COVID infections; lingering gut problemsAfter two infections in 2020, I began experiencing lingering GI issues.In context ↗ | Mild | |
| January 2024 | Brain fog began and worsened; pulled back at workIn January 2024, I started noticing brain fog and got another UTI.In context ↗ | Mild | |
| October 2024 | Constant adrenaline surges, barely able to workBy October, that restlessness (which I now understand was adrenaline) became constant and overwhelming.In context ↗ | Moderate | |
| November 2024 | Severe reaction to a first SSRI, taken to ERI woke up jerking, shivering, sweating, with a severe headache.In context ↗ | Moderate | |
| early 2025 | Bedridden with unrelenting insomnia and internal tremorsI was basically bedridden, forcing myself to get up and move around.In context ↗ | Severe | |
| October 2025 | Nicotine patches gave some energy; insomnia and tremors persistedThey did help with energy but if I pushed to hard my tremors would come out.In context ↗ | Severe | Nicotine patches |
| February 2026 | Triple therapy and three iliac stents with Dr Vaughn; improved but not curedAm I cured NO have I improved yes.In context ↗ | Moderate | Triple anticoagulant therapy |
| April 2026 | Came off Quviviq after it stopped helping; still waking with tremorsEven at the highest does I still woke up shaking after 1 to 2 hours.In context ↗ | Moderate |
Adverse events
- Nicotine patches“Only thing I got was a mild headache.” In context ↗ Side effects
- Citalopram (Celexa)“The second night, I took it again — and that night, I woke up jerking, shivering, sweating, with a severe headache. My nervous system felt like it was on fire.” In context ↗ Side effects
- Antidepressants (unspecified), Mirtazapine (Remeron), Trazodone (Desyrel)“I was home alone, so I called my brother-in-law to take me to the ER.” In context ↗ ER visit
- Alprazolam (Xanax)“But my sleep got worse — two hours a night if I was lucky.” In context ↗ Insomnia from treatment
- Quetiapine (Seroquel)“I slept six hours that night, but felt awful the next day and couldn’t work.” In context ↗ Side effects
- Eszopiclone (Lunesta)“At best, I got four hours, but woke up severely depressed and forgetful.” In context ↗ Mood or psychiatric effects
- “I tried cannabis once ended up in the ER as it was my first time and didnt know to take half or quarter of the gummy took the whole thing 32g of delta 9.” In context ↗ ER visit
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Gut problems
I began experiencing lingering GI issues
In context ↗ - Brain fog
In January 2024, I started noticing brain fog
In context ↗ - Sleep problems
my insomnia is severe some nights I wake up every hour or 30 min
In context ↗ - Anxiety & low mood
I’ve become so dehumanized that I’ve started thinking about ways to die that would impact my family the least.
In context ↗ - Vision problems
vision issues (especially in my left eye)
In context ↗ - Muscle weakness
weakness on my left side, difficulty lifting things
In context ↗ - Heart symptoms & palpitations
I could handle the vision issues, fatigue, brain fog, heart pain, and GI symptoms
In context ↗ - Neuropathy & tingling
I did have the tingling in the back of the neck and it did subside for me
In context ↗ - Headaches & migraine
Yes not everday. I put ice on my head or I have migraine cap I pull out of the freezer and it helps.
In context ↗ - Post-exertional malaise
If I try to go at full speed mentally or physically they come out so I do very rigid pacing
In context ↗ - POTS & dysautonomia
I have NeuroCOVID, MECFS, MCAS, Dysautonomia
In context ↗
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