Very severe ME/CFS, now slightly better with nortriptyline
- Condition
- ME/CFS
- At worst
- Very severe (bedbound, unable to do basic care)
- Ill before improving or writing
- Not stated
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
This one makes the most sense even though there is no real treatment for CFS
In context ↗ - At worst: Very severe
Very minimal phone usage, not being able to socialize. Always in the dark, the smallest of stimuli being able to make me crash.
In context ↗ - Now: Somewhat better
it seems to be helping my cfs aswell it helped my baseline a lil bit
In context ↗
Read from 20 of their posts and comments; links to the 15 this page draws on
Summary
A Reddit user in their early twenties with ME/CFS, POTS, gut problems, PEM and brain fog tried pills one at a time. Propranolol eased POTS crashes and omeprazole helped the stomach; amitriptyline helped until it stopped working. CoQ10, Allegra, famotidine, LDN and buspirone gave no benefit or made them worse, and in July 2026 they were back in a very severe state. Nortriptyline then lifted their baseline slightly by September 2026.
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What they tried
What they credit
Also tried
Their words about each treatment
- extreme pacing · Not said
I’d do 2 or 3 days extreme pacing (insanely boring) and then I’d start using my phone again
In context ↗ - Zelokeen(propanolol) · Helped
it reduces my heart rate when walking because i also have POTS. Though the benefit i get from it isnt that big in terms of HR reduction.
In context ↗ - omeprazole · Helped
Well it helps a little bit and on some days it doesn’t work at all.
In context ↗ - Amitriptyline · Helped
Amitryptiline helped a good amount at making my stomach less sensitive and it made me be able to eat way more foods without problems
In context ↗ - LDN · Worse
ldn, 1 week on 0.1mg, a super low dose yet i felt Like a lot of my symptoms were becoming worse
In context ↗ - COQ-10 · Worse
I tried out CoQ10 for three days, but I decided I’m not gonna continue because it was making me dizzy and I was feeling extra fatigued on it + waking up more tired
In context ↗ - Allegra · Worse
Allegra, I just felt more tired and my sleep felt very unreflecting and wake up feeling like I hadn’t slept
In context ↗ - famotidine · Worse
famotidine gave me so much fatigue, holy and i was only taking 20mg instead of 40
In context ↗ - magnesium · Helped
magnesium(helps anxiety)
In context ↗ - Ketotifen · No change
Of the ones that help, those would be omeprazole and propanolol
In context ↗ - Diets · No change
I’ve also tried ppis, sucralfate and many diets but no luck
In context ↗ - buspirone · Worse
As for the last pill i tried (buspirone) that one made me feel worse. It gave me insomnia and made my cfs worse.
In context ↗ - Nortrilen · Helped
Nortrilen is helping. I mainly started taking it for my functional dyspepsia but it seems to be helping my cfs aswell it helped my baseline a lil bit.
In context ↗
Approaches: Proton pump inhibitors · Beta-blockers · Supplements · Tricyclic antidepressants
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | ongoing illness with fatigue, gut problems, PEM, brain fog and POTSfatigue, stomach problems, PEM, a bit of brainfogIn context ↗ | Not stated | |
| 2025 | POTS medication stopped POTS crashesTaking pots medication helpt a lot I don’t get pots crashes from that anymore.In context ↗ | Not stated | Propranolol (Inderal) |
| 2026-07-04 | back in very severe stateVery minimal phone usage, not being able to socialize. Always in the dark, the smallest of stimuli being able to make me crash.In context ↗ | Very severe | |
| 2026-09-25 | nortriptyline lifted baseline a littleNortrilen is helping. ... it seems to be helping my cfs aswell it helped my baseline a lil bit.In context ↗ | Severe |
Adverse events
- CoQ10 / ubiquinol“it was making me dizzy and I was feeling extra fatigued on it + waking up more tired” In context ↗ Side effects
- Fexofenadine (Allegra)“Allegra, I just felt more tired and my sleep felt very unreflecting and wake up feeling like I hadn’t slept” In context ↗ Side effects
- Famotidine (Pepcid)“famotidine gave me so much fatigue, holy and i was only taking 20mg instead of 40…” In context ↗ Side effects
- Amitriptyline (Elavil)“The time I took antidepressants even on the lowest dose the amount of physical and mental fatigue i got from it was insane.” In context ↗ Side effects
- Amitriptyline (Elavil)“The only side effect I got from it was intense sleepiness, to the point where I’d be sleeping 16 hours a day.” In context ↗ Side effects
- Amitriptyline (Elavil)“it had a ton of side effects (sleepiness for me) and was difficult to come off of i was on 10 mg dose” In context ↗ Withdrawal problems
- Low-dose naltrexone“1 week on 0.1mg, a super low dose yet i felt Like a lot of my symptoms were becoming worse” In context ↗ Made symptoms worse
- Buspirone (Buspar)“As for the last pill i tried (buspirone) that one made me feel worse. It gave me insomnia and made my cfs worse.” In context ↗ Insomnia from treatment
- Buspirone (Buspar)“that one made me feel worse. It gave me insomnia and made my cfs worse.” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I can even get PEM from eating certain foods that used to be completely safe for me to eat in the past.
In context ↗ - Brain fog
a bit of brainfog
In context ↗ - POTS & dysautonomia
my pots is already very bad even whilst I’m taking propanolol for my pots my heart rate is still quite bad
In context ↗ - Gut problems
For the past four years, I've just been struggling to find the correct food.
In context ↗ - Sleep problems
I am unable to sleep properly/get restorative sleep
In context ↗ - Mast cell (MCAS) & allergies
I react to almost every food
In context ↗ - Light & noise sensitivity
Always in the dark, the smallest of stimuli being able to make me crash
In context ↗ - Anxiety & low mood
magnesium(helps anxiety)
In context ↗ - Headaches & migraine
it giving symptoms of extreme fatigue headaches or making me fall asleep
In context ↗
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