ME/CFS
Severe → no benefit
Two months in a crash with ME/CFS, still mostly lying down; tapering lamotrigine no help
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill for
- Not stated
- Last post
- Dec 2025
In their words
- Condition: ME/CFS
I'm desperate to try some new approaches to help my CFS symptoms
In context ↗ - At worst: Severe
I've been in a crash for 2 months now at the same level as yours ... in between I've only been able to mostly lie down and watch stuff too
In context ↗ - Now: No benefit
I've been in a crash for 2 months now ... Once this crash is over I can't wait to get out and be extra grateful for it.
Summary
Cedar 87189 has CFS and takes lamotrogine for mental health, and wants to taper it to try other approaches to their CFS symptoms. Two attempts to cut the dose by 12.5 mg a night each triggered a bad flare-up. By late December 2025 they had been in a crash for two months, mostly lying down and only managing a Christmas dinner with family; they were drawing, reading, journalling and meditating while waiting for it to pass.
Ask Miruvor AI
What they tried
Also tried
Their words about each treatment
- lamotrogine · Not said
I take lamotrogine for my mental health and I'm desperate to try some new approaches to help my CFS symptoms.
In context ↗ - drawing · Helped
It's helped me switch off getting into the creative flow.
In context ↗ - meditating · Not said
And meditating. In the hopes it will help me rest and recover
In context ↗ - journalling · Helped
I also forgot to mention journalling. This has helped me recently.
In context ↗ - visualisations of being out walking in nature · Not said
I was skeptical at first, but I read the brain doesn't know the difference of what's real and imagined, and visualising being out walking can reset and encourage the body to be able to again
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. 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 |
|---|---|---|
| — | Living with CFS symptoms, taking lamotrigine for mental healthI take lamotrogine for my mental health and I'm desperate to try some new approaches to help my CFS symptoms.In context ↗ | Not stated |
| 2025-11-25 | flare-ups after cutting lamotrigine by 12.5 mg a nightthe last two times I have tried to reduce my dose, by just 12.5mg a night, this has triggered two horrible flare upsIn context ↗ | Not stated |
| 2025-12-30 | two-month crash, mostly lying downI've been in a crash for 2 months now at the same level as yours. I managed Christmas dinner with family which I'm grateful for too, but in between I've only been able to mostly lie down and watch stuff too.In context ↗ | Severe |
| 2025-12-31 | still crashed, waiting to get outside againOnce this crash is over I can't wait to get out and be extra grateful for it.In context ↗ | Severe |
Adverse events
- Lamotrigine (Lamictal)“the last two times I have tried to reduce my dose, by just 12.5mg a night, this has triggered two horrible flare ups” In context ↗ Withdrawal problems
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
I've been in a crash for 2 months now at the same level as yours.
In context ↗ - Anxiety & low mood
I take lamotrogine for my mental health
In context ↗