Long COVID migraines left them on the couch, now more functional with Emgality and Botox
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Feb 2026
In their words
- Condition: Long COVID
I am a long hauler as well.
In context ↗ - At worst: Severe
I still have days where I am on the couch, but they aren't as soul crushing when it isn't my whole life.
In context ↗ - Now: Somewhat better
Now that I'm on a cocktail of things that let me be functional at some points, I can consider triggers.
In context ↗ - Began after: COVID
I am a long hauler as well
Read from 7 of their posts and comments; links to the 7 this page draws on
Summary
A long COVID patient who was slowly recovering from fatigue and minor breathing difficulties when constant daily migraines began, leaving them on the couch, and who later mentioned being fired. Ten months of failed migraine medications ended when Emgality plus Botox gave them full functioning days, and they later described being functional most days on a ten-med cocktail. By 2026 they still felt issues a day later (thinking it might be PEM) and used a Visible band to pace.
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What they tried
What they credit
Also tried
Their words about each treatment
- Pfizer vaccine · No change
I got the Pfizer and beyond some muscle soreness, I had no issues ... my debilitating migraines didn't care and stayed firmly in place.
In context ↗ - dozens of medications · Not said
After no response to a few meds, my doctor apologized and sent me to a neurologist. It took me 10 months of constant daily migraines and dozens of medications
In context ↗ - Emgality · No change
Emgality by itself does nothing for me, but the botox is what finally helped.
In context ↗ - botox · Helped
the botox is what finally helped. I take both and now I finally have full functioning days when they can agree.
In context ↗ - pacing · Not said
I got a Visible band to help with my pacing. Listening to my body doesn't work because I only feel issues a day later
In context ↗ - Visible band · Helped
Visible has really given me a heads up on when to relax and what activities to avoid.
In context ↗
Approaches: Other drugs and medicines
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 | After |
|---|---|---|---|
| — | Long COVID after COVID-19; fatigue and breathing difficultiesI was slowly recovering from the fatigue and minor breathing difficultiesIn context ↗ | Mild | |
| — | Constant daily migraines for 10 months; days on the couchIt took me 10 months of constant daily migraines and dozens of medicationsIn context ↗ | Severe | |
| 2021-09-18 | Botox on top of Emgality gave full functioning daysEmgality by itself does nothing for me, but the botox is what finally helpedIn context ↗ | Mild | |
| 2021-12-13 | Functional most days on a ten-med cocktailI am finally functional most days on my ten med cocktailIn context ↗ | Mild | |
| 2026-02-22 | Still limited by post-exertional issues; uses Visible band to paceI only feel issues a day later (I think I have PEM)In context ↗ | Mild | Symptom-tracking apps and wearables (Visible) |
Adverse events
- COVID vaccination as treatment“I got the Pfizer and beyond some muscle soreness, I had no issues.” In context ↗ Side effects
- COVID vaccination as treatment“I have been extra tired, but I don't know if that's from the booster or my medication.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Headaches & migraine
my debilitating migraines didn't care and stayed firmly in place
In context ↗ - Vision problems
my vision blurring and having rainbow zigzags in my vision
In context ↗ - Breathlessness
minor breathing difficulties
In context ↗ - Post-exertional malaise
I only feel issues a day later (I think I have PEM)
In context ↗
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