ME/CFS with brain fog and insomnia, somewhat better with LDN; suvorexant helped sleep
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 9 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
therapy is helpful but it’s done zilch for my ME/CFS
In context ↗ - At worst: Moderate
I’m moderate/mild, more severe than I was when I was diagnosed, but better than my nadir about 5 years ago.
In context ↗ - Now: Somewhat better
I’m moderate/mild, more severe than I was when I was diagnosed, but better than my nadir about 5 years ago.
In context ↗
Read from 14 of their posts and comments; links to the 11 this page draws on
Summary
Horizon 15456 became ill with ME/CFS at 14 and was 22 by May 2025, living in Australia. She described PEM, brain fog, insomnia, photosensitivity, headaches, numbness, depression and anxiety; supplements improved a B12 deficiency. Low-dose naltrexone helped noticeably at 4 mg and suvorexant helped her get to sleep. She called herself moderate/mild, worse than at diagnosis but better than her nadir five years earlier.
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What they tried
What they credit
Also tried
Their words about each treatment
- B12 supplements · Helped
I found out I had a minor deficiency ... taking supplements has majorly reduced all of the above!
In context ↗ - Mirtazapine · Worse
Mirtazapine reacted really badly with me for some reason, I was always moody, irritable, and hungry
In context ↗ - SSRIs · No change
I also had no luck with SSRIs—no bad side effects, but no real improvement either
In context ↗ - venlafaxine · Helped
my current meds (venlafaxine for depression & reboxetine for anxiety) have been very helpful
In context ↗ - doing everything incrementally · Helped
doing everything incrementally (e.g. unloading the dishwasher in multiple “goes” rather than all at once)
In context ↗ - therapy · No change
therapy is helpful but it’s done zilch for my ME/CFS
In context ↗ - suvorexant/belsomra · Helped
I just started taking suvorexant/belsomra. Early days but I think it’s helpful in getting to sleep in the first place
In context ↗ - LDN · Helped
It helps me quite a bit (I’m at 4mg)
In context ↗
Approaches: Pacing
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened |
|---|---|
| 2017 | became ill with ME/CFS at age 14I’m 22f, I got sick at 14In context ↗ |
| about 2020 | lowest point (nadir) about five years before mid-2025better than my nadir about 5 years agoIn context ↗ |
| 2025-06-12 | improved from nadir to moderate/mildI’m moderate/mild, more severe than I was when I was diagnosed, but better than my nadir about 5 years ago.In context ↗ |
| 2026-10-09 | still ill, living with parents who care for heralso got sick at 14 and live with my parents who care for meIn context ↗ |
Adverse events
- Mirtazapine (Remeron)“Mirtazapine reacted really badly with me for some reason, I was always moody, irritable, and hungry…” In context ↗ Mood or psychiatric effects
- “I definitely have that “hangover” although it’s too early for me to know if that’s permanent or even related.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I often feel better with friends and then get hit with PEM after
In context ↗ - Brain fog
initial warning signs- (for me, flushing, brain fog)
In context ↗ - Sleep problems
Insomnia- I cannot get to sleep or calm down my nervous system
In context ↗ - Light & noise sensitivity
Both definitely. I think part of it might be a physical problem where my pupil doesn’t contract enough or something
In context ↗ - Anxiety & low mood
venlafaxine for depression & reboxetine for anxiety
In context ↗ - Headaches & migraine
I found out I had a minor deficiency after complaining about headaches, numbness, and muscle spasms, and taking supplements has majorly reduced all of the above!
In context ↗
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