Long COVID
Severe → somewhat betterIll 14 months before improving or writing
Long COVID with 24/7 migraines, insomnia and severe memory loss, somewhat better with time
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 14 months
- Last post
- Mar 2023
In their words
- At worst: Severe
I'm house bound, can barely work at all, and have trouble walking 5 minutes a day.
In context ↗ - Now: Somewhat better
I'm probably at 50% now ... I was doing much better but I had a relapse last week
- Began after: a vaccination
My symptoms started two weeks after my first vaccine dose of Moderna.
In context ↗
Read from 78 of their posts and comments; links to the 30 this page draws on
Summary
Tern 55406, a 49-year-old US woman, developed 24/7 migraines, insomnia and severe memory loss two weeks after her first Moderna dose in April 2021. Later COVID infections added heart and gut symptoms; migraine infusions gave only days of relief, while a three-drug migraine combination made migraines manageable. She credited time for slow gains, reaching about 50% of normal by March 2023, with relapses in February 2022 and March 2023. Care cost about $126K.
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What they tried
What they credit
Also tried
Amitriptyline (ampytriptaline)· HelpedAntibody treatment (monoclonal antibodies)· HelpedIV infusions for migraines (magnesium, Benadryl, Decadron, Norflex)· Helped · wore offMedical massage· HelpedEmgality· HelpedXeomin (Botox) injections· HelpedUbrelvy· HelpedCold stimulating gel· HelpedSleeping medications (Ambien and others)· No changeMelatonin· No changeSeveral migraine medications (incl. auto-injector)· No changeCBD· No changeLaser iridotomy surgery· No changeWalking program from long covid clinic· WorseModerna COVID vaccine (two doses)· Much worseMedical marijuana edibles (gummies)· Much worsePrescription vitamins and minerals· Not saidInterstim implant· Not saidChiropractor· Not saidDementia drug (off-label)· Not said
Their words about each treatment
- Moderna COVID vaccine (two doses) · Much worse
The 2nd vaccine made my symptoms worse. Like extremely worse.
In context ↗ - Amitriptyline (ampytriptaline) · Helped
It helped for my regular migraines but not since I've got the migraine that lasts 24/7.
In context ↗ - Sleeping medications (Ambien and others) · No change
I tried all the usual sleeping medications. None of them helped.
In context ↗ - Melatonin · No change
Melatonin doesn't help either.
In context ↗ - Prescription vitamins and minerals · Not said
I'm already taking prescription vitamin and minerals but still show deficiency.
In context ↗ - Several migraine medications (incl. auto-injector) · No change
I've tried several migraine medications from the 8 a month to the auto injector. No relief at all.
In context ↗ - Antibody treatment (monoclonal antibodies) · Helped
I think the antibody treatment probably kept me out of the hospital.
In context ↗ - Medical marijuana edibles (gummies) · Much worse
I tried edible MMJ and begged my husband for an antidote. I suffered until it wore off.
In context ↗ - CBD · No change
I also tried medical marijuana and CBD as well as Ambien and others. They don't seem to work with Long Covid sufferers.
In context ↗ - IV infusions for migraines (magnesium, Benadryl, Decadron, Norflex) · Helped
He ordered infusions for 3 days to treat the migraines. This is the only treatment that gave me relief.
In context ↗ - Interstim implant · Not said
I had interstim implanted in my back a couple months ago so I wouldn't pee on myself anymore. My issue was a nerve issue.
In context ↗ - Chiropractor · Not said
My Dr has sent me to an eye Dr, chiropractor, and neurologist.
In context ↗ - Medical massage · Helped
I'm getting a massage on Friday before my chiropractor appointment. It's like a medical massage and feels good.
In context ↗ - Emgality · Helped
I'm doing emgality injections monthly. The doctor said to give it a few more months to see if it helps.
In context ↗ - Walking program from long covid clinic · Worse
I tried to walk last night. I nearly fainted. I had to lay in the grass before I could proceed back. It was maybe 1000 steps.
In context ↗ - Laser iridotomy surgery · No change
The surgery didn't help with my blurry vision but it did help from a potential future problem.
In context ↗ - Xeomin (Botox) injections · Helped
My treatment for migraines is Emgality 1x monthly, Xeomin 1x every three months, and Ubrelvy for abortive.
In context ↗ - Ubrelvy · Helped
I take Ubrelvy for abortive when I get a bad migraine.
In context ↗ - Cold stimulating gel · Helped
I'm using a very cold stimulating gel. It helps. It doesn't help with my drive though.
In context ↗ - Dementia drug (off-label) · Not said
I'm starting a dementia drug for off label use to see if I helps with my severe short term memory issues.
In context ↗ - Time · Helped
The key to healing for me is time. It's not linear.
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 |
|---|---|---|---|
| late April 2021 | 24/7 migraines and insomnia began two weeks after first Moderna doseMy symptoms started two weeks after my first vaccine dose of Moderna.In context ↗ | Mild | |
| 2022-01-21 | housebound, barely working, could not walk five minutesI'm house bound, can barely work at all, and have trouble walking 5 minutes a day.In context ↗ | Severe | |
| 2022-02-02 | relapsed after cleaning the refrigerator and doing dishesI was feeling 25% better and then relapsed back to baseline shit feeling. I'm in bed, in the darkIn context ↗ | Severe | |
| 2022-05-28 | fatigue a little better, able to get out of bed and take short walksThe last month I feel like my fatigue is getting a little better. I'm able to get out of bed more, move my body a little bit more.In context ↗ | Moderate | Time and spontaneous remission |
| 2022-07-29 | able to work on the computer a few hours a dayI feel like I am improving. I can't point to anything specific, but I'm able to work on my computer a few hours each day.In context ↗ | Moderate | Time and spontaneous remission |
| 2022-09-09 | relapse with crippling fatigue, bed boundI am in a relapse right now. I describe it as being hit by a bus. My baseline is already house bound. Bed bound sucks.In context ↗ | Severe | |
| 2022-12-07 | migraines became manageable on a three-drug combinationI still get migraines, but they aren't nearly as bad and are manageable.In context ↗ | Moderate | |
| 2023-03-05 | memory and speech improved, about 50% of normalIt the last month my life has been improving. ... I'm probably at 50% now.In context ↗ | Mild | Time and spontaneous remission |
| 2023-03-30 | relapse with confusion and brain fog, had to leave work; starting to feel betterI was doing much better but I had a relapse last week. Confusion, speech issues, brain fog etc. I had to leave work and go home.In context ↗ | Mild |
Adverse events
- COVID vaccination as treatment“The 2nd vaccine made my symptoms worse. Like extremely worse.” In context ↗ Made symptoms worse
- “I tried edible MMJ and begged my husband for an antidote. I suffered until it wore off. I don't think that route was a good option for me.” In context ↗ Side effects
Symptoms mentioned
Anxiety & low moodBrain fogGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPost-exertional malaiseSleep problemsVision problems
Their words about their symptoms
- Sleep problems
I started with really bad insomnia. That is the only symptom I've had some improvement with.
In context ↗ - Brain fog
Profound short term memory loss
In context ↗ - Vision problems
I have extremely blurry vision and intermittent double vision.
In context ↗ - POTS & dysautonomia
I would get dizzy when standing.
In context ↗ - Heart symptoms & palpitations
My heart rate would swing wildly up and down all day even at rest.
In context ↗ - Gut problems
I'm currently longhauling with GI problems from Omnicron
In context ↗ - Neuropathy & tingling
numbness and tingling
In context ↗ - Light & noise sensitivity
I'm now very sensitive to light and sounds.
In context ↗ - Post-exertional malaise
I got about 2000 steps in and collapsed. :(
In context ↗ - Muscle weakness
I didn't have the strength to hold it.
In context ↗
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