Constant migraine for over a year and a half after long COVID, no relief from treatments
- Condition
- Long COVID
- At worst
- Not stated
- Ill for
- 21 months
- Last post
- Oct 2024
In their words
- Condition: Long COVID
Long Covid with chronic intractable migraine
In context ↗ - Now: No benefit
I’ve had a non-stop migraine since unresponsive to medication.
In context ↗ - Began after: COVID
I had Covid January 2023.
In context ↗
Read from 5 of their posts and comments; links to the 5 this page draws on
Summary
Plover 79638 developed a constant, intractable migraine after COVID-19 in January 2023, having previously had only episodic migraines. Over a year and a half later it had not broken, and preventatives, CGRP drugs, Botox, ketamine and lidocaine infusions gave no relief. An unrelated surgery brought a week of relief before they returned to baseline. They tested positive for COVID-19 again in October 2024.
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What they tried
Also tried
Their words about each treatment
- oral preventatives · No change
I’m currently receiving lidocaine, ketamine, and vyepti infusions, Botox, and oral preventatives. None seem to be working
In context ↗ - Botox · No change
Botox for 4 rounds
In context ↗ - tizanidine · No change
I’ve tried tizanidine, flexeril, and norflex no response.
In context ↗ - aimovig · No change
As far as CGRP I’ve tried aimovig ajovy qulipta ... as well as nurtec
In context ↗ - nurtec · No change
I don’t have an abortive that has helped either
In context ↗ - opioids · Not said
my head felt the best ever for a week and I wonder if it was because of my opioids. But I’m back to baseline now.
In context ↗ - headache hat · Not said
I wear a headache hat almost all of the time, the ice stays cold for awhile but I have three I rotate.
In context ↗ - medication for my depression and anxiety · Not said
I take medication for my depression and anxiety and go to therapy twice weekly which helps keep me somewhat sane.
In context ↗ - therapy · Helped
go to therapy twice weekly which helps keep me somewhat sane
In context ↗ - mouth guard · Not said
I wear a mouth guard but I still go through the motion.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. The chart starts 1 month after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|
| January 2023 | COVID-19 infection; previously only episodic migrainesI had Covid January 2023.In context ↗ | Not stated |
| February 2023 | constant intractable migraine began, no pain-free day sinceIn February 2023 I developed a migraine and it has gone on for over a year now, I haven’t had a pain free day yet.In context ↗ | Mild |
| March 2024 | head felt the best ever for a week after unrelated surgeryI actually had surgery (unrelated) a month ago and my head felt the best ever for a weekIn context ↗ | Mild |
| 2024-04-08 | back to baseline after the week of reliefBut I’m back to baseline now.In context ↗ | Mild |
| 2024-10-07 | COVID reinfection; migraine still daily, worse in the morning from teeth grindingSometimes it gets a little better in the am but by afternoon it’s terrible againIn context ↗ | Mild |
Symptoms mentioned
Their words about their symptoms
- Headaches & migraine
I’ve had a non-stop migraine since unresponsive to medication.
In context ↗ - Anxiety & low mood
I take medication for my depression and anxiety
In context ↗