ME/CFS
No benefitIll for 6 years
In bed most of the day with ME/CFS, no improvement from treatments tried
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- 6 years
- Last post
- Sep 2026
In their words
- Condition: ME/CFS
two years later i got in with a neurologist and was diagnosed with MECFS and POTS
In context ↗ - Now: No benefit
i've been looking since 2021 and ive found nothing helpful as my CFS gets worse :(
In context ↗ - Began after: a bacterial or tick-borne infection
then i got very severe aspiration pneumonia , which was misdiagnosed as just the flu due to the covid panic and went untreated for over a month
In context ↗
Read from 24 of their posts and comments; links to the 17 this page draws on
Summary
Nightjar 67178 fell ill around 2020 after severe aspiration pneumonia went untreated for a month, and was diagnosed with ME/CFS and POTS two years later. Pushing through work and exercise took them from mild to moderate; by 2026 they were in bed most of the day, upright for about two hours, and moving onto worse. An anti-inflammatory diet reduced flares, but no other treatment or years of therapy helped, and ivabradine caused three weeks of severe symptoms.
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What they tried
Also tried
anti inflammatory diet· Helpedamitriptyline· Helpedweed· Helpedvyvanse· Helpedmedication for my mental health· No changeguanfacine· Worsetherapy· Worsepropranolol· Worsemidodrine· Worseexercise / pushing through· Much worseivabradine· Much worseklonopin· Not saidnausea meds· Not said
Their words about each treatment
- anti inflammatory diet · Helped
an anti inflammatory diet has been helping me a lot , i miss a lot of foods but if i eat something inflammatory i immediately flare up badly
In context ↗ - guanfacine · Worse
my dr gave me guanfacine ( he said it was like adhd med for kids ) and it does absolutely nothing to help me
In context ↗ - klonopin · Not said
i also take klonopin at night 5mg but ive never noticed that id gotten worse on it
In context ↗ - therapy · Worse
i tried to stay in therapy for my MECFS but it only made it worse because talking and radical acceptance doesn’t help
In context ↗ - medication for my mental health · No change
i’m on medication for my mental health and it’s made no difference
In context ↗ - exercise / pushing through · Much worse
i did push through , only to get PEM every time and feel even worse
In context ↗ - amitriptyline · Helped
i’m on 200mg for severe insomnia but i still barely get any sleep
In context ↗ - weed · Helped
surprisingly weed ( mixed with my current meds , i know it’s bad to do that but all that happens is i get deep unbroken sleep ) does work
In context ↗ - ivabradine · Much worse
they put me on ivabradine and it was the worst three weeks of my life
In context ↗ - propranolol · Worse
ugh propranolol made me feel awful too i’m sorry it didn’t work for you
In context ↗ - midodrine · Worse
i went into the 40s on midodrine and i thought i was dying
In context ↗ - vyvanse · Helped
if anything the vyvanse helps lower my heart rate and blood pressure because it helps stop my racing anxious thoughts
In context ↗ - nausea meds · Not said
im prescribed three heavy nausea meds and a medicine to keep my stomach from going nuts
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 | ME/CFS after aspiration pneumonia left untreated for over a monththen i got very severe aspiration pneumonia , which was misdiagnosed as just the flu due to the covid panic and went untreated for over a monthIn context ↗ | Mild |
| 6 mo | pushed through work and exercise on doctors' advice, ruining baselinei did push through , only to get PEM every time and feel even worse ... i had moved myself from mild to moderate and significantly ruined my baselineIn context ↗ | Moderate |
| 2026-05 | three weeks of severe reaction to ivabradine, which cleared after stoppingthey put me on ivabradine and it was the worst three weeks of my lifeIn context ↗ | Severe |
| 2026-09 | still severely ill and mostly in bed; no treatment has helpedi absolutely hate ivabradine , it made me so insanely sick and my blood pressure was in hypertension just laying downIn context ↗ | Moderate |
Adverse events
- Guanfacine“the guanfacine makes me way worse at a higher dose , lots of fainting and head rushes and going deaf / blind for a while after standing or sitting up .” In context ↗ Low blood pressure or fainting
- CBT and psychotherapy“i tried to stay in therapy for my MECFS but it only made it worse because talking and radical acceptance doesn’t help” In context ↗ Made symptoms worse
- Everyday exercise and activity“i did push through , only to get PEM every time and feel even worse ... i had moved myself from mild to moderate and significantly ruined my baseline” In context ↗ Made symptoms worse
- Ivabradine“it was the worst three weeks of my life ... it made me so insanely sick and my blood pressure was in hypertension just laying down . felt like i was going to die” Made symptoms worse
- Ivabradine“end of the first day i had a hard pounding in my chest , much harder than my usual pounding and i couldn’t breathe well or catch my breath because my chest was so tight” In context ↗ Heart rhythm problems
- Ivabradine“i felt nauseous , sick , dizzy , scared / anxious , overheating very badly , unable to breath , horrible headaches that don’t go away , just awful” In context ↗ Side effects
- Ivabradine“i stopped being able to fall asleep because the pounding heart and my shortness / inability to catch my breath made it so i couldn’t fall asleep . ive been getting 3 hours if im lucky” In context ↗ Insomnia from treatment
- Propranolol (Inderal)“ugh propranolol made me feel awful too” In context ↗ Made symptoms worse
- Midodrine“i went into the 40s on midodrine and i thought i was dying” In context ↗ Heart rhythm problems
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitus
Their words about their symptoms
- Post-exertional malaise
i did push through , only to get PEM every time and feel even worse
In context ↗ - Brain fog
brain fog that makes me cry in anger because i can’t understand what people are saying to me
In context ↗ - POTS & dysautonomia
two years later i got in with a neurologist and was diagnosed with MECFS and POTS
In context ↗ - Mast cell (MCAS) & allergies
i get a massive hive / rash thing all up my neck and chest and face and ears
In context ↗ - Sleep problems
i’m on 200mg for severe insomnia but i still barely get any sleep
In context ↗ - Pain & fibromyalgia
i genuinely just lay down dissociated , in pain , exhausted
In context ↗ - Headaches & migraine
horrible headaches that don’t go away
In context ↗ - Breathlessness
i still cant breathe or think or move or anything
In context ↗ - Heart symptoms & palpitations
heart rate is chronically 130s / 120s unless i don’t move at all ever
In context ↗ - Muscle weakness
i couldn’t even stand
In context ↗ - Anxiety & low mood
i do have severe depression , i also have severe cptsd from abuse
In context ↗ - Tinnitus
my vision kept blacking out with tinnitus deafening me
In context ↗ - Gut problems
i throw up foam and need the er bc of severe dehydration
In context ↗