Dizzy, unsteady, PEM crashes in ME/CFS, somewhat better on LDN and balance exercises
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
My understanding is MECFS is such a complex disorder that has neurological roots
In context ↗ - At worst: Moderate
He referred me to a neuro physio to specifically work on my dizziness and balance as I tried to return to work.
In context ↗ - Now: Somewhat better
My treatment pathways has taken me from feeling screwed to a much better place.
In context ↗ - Began after: COVID
my long COVID specialist is treating me for that
Read from 8 of their posts and comments; links to the 7 this page draws on
Summary
Australian user Dew 28784 with long COVID had dizziness and unsteadiness triggered by busy places and heat, near a POTS diagnosis, with PEM crashes. Low-dose naltrexone, started at 1 mg twice daily and raised to 12.5 mg daily, made crashes softer and less frequent; vestibular balance exercises helped for a time. Stopping LDN brought a serious crash, so they restarted. Treatment took them from feeling screwed to a much better place.
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What they tried
What they credit
Also tried
Their words about each treatment
- oral antibiotics (and CiproxinHC drops) · Helped
I needed drops (CiproxinHC) and 2 rounds of oral antibiotics to clear it up.
In context ↗ - LDN · Helped
LDN has made my crashes softer and not as prolonged.
In context ↗ - balance exercises at home · Helped
I did lots of balance exercises at home ... I improved for some time.
In context ↗
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. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | long COVID with dizziness and unsteadinessIt has taken me over 18 months to realise the weak feeling I describe to others is like dizziness but not quite vertigo.In context ↗ | Not stated | |
| 2024-12-01 | dizziness and unsteadiness worse in busy places, on light changes and with standing or activity; referred to a vestibular neuro physioWorse for me in busy places or going from light to dark.In context ↗ | Moderate | |
| 2024-12-17 | started LDN at 1 mg morning and evening, built to 4 mg daily, symptoms improvingI started with 1 in the morning and 1 in the evening. Now on 4 daily and noticing good improvements with symptoms.In context ↗ | Moderate | Low-dose naltrexone |
| 2025-03-20 | crashes became softer and shorter on 4 mg LDNLDN has made my crashes softer and not as prolonged.In context ↗ | Moderate | Low-dose naltrexone |
| 2025-12-04 | vestibular balance exercises at home reduced dizziness for a whileThe goal was to induce dizziness and gradually get more comfortable with it/delay it. I improved for some time.In context ↗ | Mild | |
| 2026 | stopped LDN and had a serious crashI soon got right back on it after a serious crash.In context ↗ | Moderate | |
| 2026-10-01 | on 12.5 mg LDN daily, less severe and frequent PEM crashes, much better placeMy treatment pathways has taken me from feeling screwed to a much better place.In context ↗ | Mild | Low-dose naltrexone |
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I believe it reduces the severity and frequency of PEM/crash episodes
In context ↗ - POTS & dysautonomia
I am a couple of heartbeats per minute away from a formal POTS diagnosis
In context ↗
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