Long COVID, once bed-bound, somewhat better with lamotrigine and mirtazapine
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2024
In their words
- Condition: Long COVID
As an update ...off Doxycycline and didn't seem to affect my LC as far as I can tell.
In context ↗ - At worst: Severe
I'm no longer bed bound but I have to lay down frequently
In context ↗ - Now: Somewhat better
I'm no longer bed bound but I have to lay down frequently
In context ↗ - Began after: COVID
Exact same journey as you.
In context ↗
Read from 7 of their posts and comments; links to the 7 this page draws on
Summary
This Reddit user has long COVID; their third infection came nearly two years after the second, and by October 2024 they were no longer bed-bound but still had to lie down frequently. Lamotrigine cut attacks from several a week to one every few months and mirtazapine restored their sleep, while one medication left them feeling drunk for two weeks.
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What they tried
What they credit
Also tried
Their words about each treatment
- Doxycycline · No change
off Doxycycline and didn't seem to affect my LC as far as I can tell.
In context ↗ - Lamotrogine · Helped a lot
Lamotrogine was the game changer for me. ... From sometimes multiple a week to one every few months.
In context ↗ - orthopaedic pillow · Not said
Got an orthopaedic pillow with neck support too.
In context ↗ - gabapentin · Worse
I felt drunk almost consistently for 2 weeks when starting on it. Couldn't drive or do much.
In context ↗ - mirtazapine · Helped
mirtazapine saved my sleep. About 40 mins after taking my 45mg I was out like a light.
In context ↗ - therapy and journalling · Helped
Still valued weekly video sessions with my therapist and journalling to challenge unhelpful thoughts.
In context ↗ - natural treatments · Not said
I tried all sorts of natural treatments
In context ↗ - pacing · Helped
pacing (still important!)
In context ↗ - zomig nasal inhaler · Helped
If they do hit, zomig nasal inhaler and ondansetron soluble oral strips means they often disappear before they fully start.
In context ↗ - ondansetron soluble oral strips · Helped
zomig nasal inhaler and ondansetron soluble oral strips means they often disappear before they fully start.
In context ↗
Approaches: Other drugs and medicines · Pacing
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| onset | long COVID after first COVID infection, mild at firstExact same journey as you.In context ↗ | Mild |
| — | bed-bound after third COVID infection3rd infection was nearly 2 years after 2nd.In context ↗ | Severe |
| 2024-10-13 | no longer bed-bound but has to lie down frequentlyI'm no longer bed bound but I have to lay down frequentlyIn context ↗ | Moderate |
Adverse events
- Gabapentin (Neurontin)“I felt drunk almost consistently for 2 weeks when starting on it. Couldn't drive or do much.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Tip for phone use when experiencing PEM
In context ↗ - Headaches & migraine
From sometimes multiple a week to one every few months.
In context ↗ - Sleep problems
mirtazapine saved my sleep. About 40 mins after taking my 45mg I was out like a light.
In context ↗ - Light & noise sensitivity
Sometimes I just need darkness unknown stimulation
In context ↗
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