Long COVID
Mild → no benefitIll for 5 years
Long COVID with daily migraines, still ill five years on and nothing improved it
- Condition
- Long COVID
- At worst
- Mild (working or studying, with limits)
- Ill for
- 5 years
- Last post
- May 2025
In their words
- Condition: Long COVID
I’m already living with LC so why add more shit to the top of the pile?
In context ↗ - At worst: Mild
I only take it when I go to work and I know it’s going to be a long day
In context ↗ - Now: No benefit
and honestly nothing has “improved” my LC, only changed my symptoms
In context ↗ - Began after: COVID
I had this all in the beginning after Covid in March 2020
In context ↗
Read from 23 of their posts and comments; links to the 20 this page draws on
Summary
A US woman who developed long COVID after a COVID infection in March 2020, still ill five years on. She had daily headaches and migraines from 2020, plus insomnia, anxiety, tachycardia and visual symptoms. Migraine medications and hydroxychloroquine gave little relief, and nothing had improved her long COVID. Low-dose adderall helped her concentrate at work.
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What they tried
Also tried
adderall· Helpedpataday .7% drops· Helpedtalk therapy· Helpedtopamax· HelpedBotox· Helped · wore offdry needling· Helpedlidocaine injection into my masseter muscles· Helpedwriting down when I feel the worst and what I did· Helpedtaking a break / taking it easy· Helpedplaquenil· No changecutting back on caffeine· No changeCoQ10 with AHA· No changemagnesium· No changeB6· No changeSSRI and other anti depression and anti anxiety pills· Worsesumatriptan (Imitrex)· WorseBenadryl· WorseB complex· Worsedietary changes· Not saidCOVID vaccination as treatment· Not said
Their words about each treatment
- adderall · Helped
my GP wrote me a small dose of adderall and that seemed to help me a lot
In context ↗ - SSRI and other anti depression and anti anxiety pills · Worse
we’ve tried SSRI and other anti depression and anti anxiety pills with no luck and I can’t stand the side effects
In context ↗ - pataday .7% drops · Helped
allergist recommended pataday .7% drops and it helped me a lot
In context ↗ - plaquenil · No change
I’ve been on a smaller dose (200mg) for about 6 weeks ... I’ve noticed zero improvement as with most of the pills they’ve thrown down my gullet
In context ↗ - cutting back on caffeine · No change
Gave up caffeine, didn’t help
In context ↗ - talk therapy · Helped
I’m in talk therapy and it seems to help
In context ↗ - CoQ10 with AHA · No change
I’ve been taking the CoQ10 with AHA for a little bit but honestly haven’t noticed a difference
In context ↗ - topamax · Helped
I’m also taking the topamax, I was riding high on 100mg then I got hit with neuropathy so they backed me down to 50mg
In context ↗ - sumatriptan (Imitrex) · Worse
I’m taking sumatriptan (Imitrex) as an abortive but I hate it bc it makes me tense and I almost always have rebounds
In context ↗ - dietary changes · Not said
3 migraine meds, MRI, blood works, dietary changes “all looks normal”
In context ↗ - Botox · Helped
Prior to all of this I had it for occasional migraines and it did help ... it didn’t last too long, give or take 3 months
In context ↗ - dry needling · Helped
I also had some dry needling done in my trap muscles, and lidocaine injection into my masseter muscles, that was helpful as well
In context ↗ - writing down when I feel the worst and what I did · Helped
Write down when you feel the worst and what you did ... That’s the only thing I’ve found that works
In context ↗ - taking a break / taking it easy · Helped
my best relief I’ve found is to try to gauge when I need to relax aka take a break from what’s happening around me
In context ↗ - magnesium · No change
I tried the magnesium, didn’t help
In context ↗ - B6 · No change
Tried the B6, didn’t help
In context ↗ - Benadryl · Worse
Benadryl are in the same class so maybe stay away from that. They both give me this same side effect
In context ↗ - B complex · Worse
it happened to me in work when I took a B complex, so embarrassing
In context ↗ - COVID vaccination as treatment · Not said
I got vaxxed and it significantly altered my period
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| March 2020 | COVID infection followed by long COVID; daily headaches beganI had this all in the beginning after Covid in March 2020In context ↗ | Mild | |
| April 2021 | visual symptoms became much more bothersomearound April 2021 it really started to bother meIn context ↗ | Mild | |
| 2025-01-31 | low-dose adderall helped her focus on work tasksmy GP wrote me a small dose of adderall and that seemed to help me a lotIn context ↗ | Mild | Amphetamine salts (Adderall) |
| 2025-04-16 | neuropathy on 100 mg topamax, dose cut to 50 mgI was riding high on 100mg then I got hit with neuropathy so they backed me down to 50mgIn context ↗ | Mild | |
| 2025-05-29 | still daily headaches, migraine, insomnia and anxiety; working with adderallI’m on my fourth med and they’re still uncontrolled.In context ↗ | Mild |
Adverse events
- Antidepressants (unspecified)“we’ve tried SSRI and other anti depression and anti anxiety pills with no luck and I can’t stand the side effects” In context ↗ Side effects
- Antidepressants (unspecified)“tried multiple anti depressants, one almost made me off myself” In context ↗ Suicidal thoughts or attempt
- COVID vaccination as treatment“I got vaxxed and it significantly altered my period” In context ↗ Other
- Hydroxychloroquine / Plaquenil“So far all I’ve achieved is diarrhea and a cold” In context ↗ Gut side effects
- Topiramate (Topamax)“I’m also taking the topamax, I was riding high on 100mg then I got hit with neuropathy so they backed me down to 50mg” In context ↗ Nerve pain
- Sumatriptan (Imitrex)“I’m taking sumatriptan (Imitrex) as an abortive but I hate it bc it makes me tense and I almost always have rebounds” In context ↗ Side effects
- Topiramate (Topamax)“It was great for me until they upped it to the 100mg now it makes me wish I was dead” In context ↗ Suicidal thoughts or attempt
- Diphenhydramine (Benadryl)“They both give me this same side effect” In context ↗ Side effects
- Vitamin B complex“it happened to me in work when I took a B complex, so embarrassing, I also cannot use niacinamide on my skin. It feels like someone lit me on fire!” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesPOTS & dysautonomiaPain & fibromyalgiaSleep problemsTinnitusVision problems
Their words about their symptoms
- Headaches & migraine
All day every day, since 2020, dull aches to rip roaring.
In context ↗ - Tinnitus
the tinnitus is a low roar
In context ↗ - Vision problems
at the time I had tunnel vision and my peripherals were shimmery, that has since resolved thank god
In context ↗ - Sleep problems
I also have the insomnia variety of LC amongst other lovely symptoms
In context ↗ - Anxiety & low mood
impending doom, fear, feeling like a trapped rat
In context ↗ - Heart symptoms & palpitations
extreme tachycardia
In context ↗ - POTS & dysautonomia
It’s dysautonomia (amongst other symptoms) for me
In context ↗ - Mast cell (MCAS) & allergies
I also have itchiness from allergies
In context ↗ - Brain fog
if my covid brain can remember
In context ↗ - Light & noise sensitivity
my hair hurts my head
In context ↗ - Pain & fibromyalgia
I have positive ANA and all other negative but joint pain and fatigue
In context ↗ - Breathlessness
I feel like I’m suffocating walking up the steps
In context ↗