Long COVID with fatigue and brain fog, somewhat better on nortriptyline and Botox
- Condition
- Long COVID
- At worst
- Not stated
- Ill before improving or writing
- 22 months
- Last post
- Apr 2023
In their words
- Now: Somewhat better
Overall I'd say I've had around 50% improvement, or more, especially with pressure in my head and pulling/ rocking sensations.
In context ↗ - Began after: COVID
Long hauling since: March 2021 ... 1 infection (Feb 2021)
Read from 26 of their posts and comments; links to the 11 this page draws on
Summary
A person developed long COVID in March 2021 after a February infection, with fatigue, brain fog, migraine, dizziness, head pressure, insomnia and anxiety. By July 2022 they had quit work and were walking about 2,000–3,000 steps a day. TMS reduced anxiety; ivermectin produced their best week and at least 50% better function, and nortriptyline plus Botox later gave around 50% overall improvement, though they remained symptomatic.
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What they tried
What they credit
Also tried
Their words about each treatment
- Benadryl (diphenhydramine) · Not said
For me Benadryl knocks me out cold lol. I wouldn’t have a day if I took it in the morning
In context ↗ - Effexor (venlafaxine) · Worse
It may have slightly helped ... I feel like it made my brain fog worse
In context ↗ - steroids · No change
I have taken a boatload of migraine drugs including an ER infusion and steroids. Non have helped.
In context ↗ - DHE · No change
all of the typical migraine drugs (aimovig, depakote, DHE, magnesium, effexor, verapamil...etc) have failed for me
In context ↗ - meclizine · No change
Sadly meclizine doesn't help me :(.
In context ↗ - vestibular therapy · Not said
I've been in vestibular therapy for a few months now. It's hard to say if it's really helped.
In context ↗ - TMS (transcranial magnetic stimulation) · Helped
TMS (transcranial magnetic stimulation)- reduced anxiety
In context ↗ - Magnesium Glycinate · Not said
Magnesium Glycinate ... have failed for me
- B2 · Not said
Magnesium Glycinate, B2, B12, Omega-3's, D3, NAC, Verapamil (240 mg)
In context ↗ - Verapamil · No change
I've tried depakote, verapamil, aimovig, botox and effexor with so far no relief :(.
In context ↗ - Botox · Helped
I've had 2 rounds of injections. No negative side effects at all but it definitely improved my pain.
In context ↗ - elyxyb · Not said
elyxyb (prescription NSAID for migraine)
In context ↗ - CoQ10 · No change
CoQ 10, depakote, effexor (Venlafaxine), naratriptan, aimovig
In context ↗ - Ivermectin (IVM) · Helped a lot
I've been on it for 4 weeks and have had by far the best week out of my 15+ months of LH.
In context ↗ - LDN · Helped
I have absolutely had some of my best days in over a year over the past 2-3 weeks
In context ↗ - nortriptyline · Helped
I've been on nortriptyline for a few months now and think it's helped a bit with the pressure.
In context ↗ - gabapentin · Not said
gabapentin as needed for bad dizzy days
In context ↗ - rizatriptan · Not said
rizatriptan for bad migraine pain
In context ↗ - timolol eye drops · Not said
Lastly I take timolol eye drops.
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, with time counted from when the illness began. Hover or tap a point. The chart starts 20 months 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 | After |
|---|---|---|---|
| March 2021 | Long COVID onsetLong hauling since: March 2021In context ↗ | Not stated | |
| 2022-11-22 | TMS reduced anxietyTMS (transcranial magnetic stimulation)- reduced anxietyIn context ↗ | Moderate | rTMS (transcranial magnetic stimulation) |
| 2023-01-16 | ivermectin; best week and 50% better functionMy functionality has improved by at least 50% in the few weeks I've taken it.In context ↗ | Mild | Ivermectin |
| 2023-04-24 | about 50% overall improvement on nortriptyline and BotoxOverall I'd say I've had around 50% improvement, or moreIn context ↗ | Mild |
Adverse events
- Diphenhydramine (Benadryl)“For me Benadryl knocks me out cold lol. I wouldn’t have a day if I took it in the morning” In context ↗ Side effects
- Venlafaxine (Effexor)“It certainly didn't help enough for it to be worth it and I feel like it made my brain fog worse.” In context ↗ Made symptoms worse
- Low-dose naltrexone“it made me super tired, so I switched it to the evening. ... the first 2-3 days each time I upped the dose I felt sort of "out of it" and spacey” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Headaches & migraine
migraine, vestibular migraine
In context ↗ - POTS & dysautonomia
dizziness ... vertigo
In context ↗ - Anxiety & low mood
anxiety, panic attacks
In context ↗
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