Long COVID headaches, brain fog and dizziness; propranolol helped headaches, then relapsed

Condition: Long COVID
At worst: Severe (mostly bedbound)
Ill before improving or writing: 3.5 years
Last post: Oct 2026

In their words

Condition: Long COVIDI have had a lot of improvements since I got Covid back in May 2023. In context ↗
At worst: SevereI’ve been on the light side of severe twice now. Just barely getting out of bed, last time lasted for 3 weeks or so. Normally I’m just moderate and house bound. In context ↗
Now: RelapsedAt 1.5 years I thought I was 85% recovered as well. Then at 2 years I got Covid again and went back to 0%…might even be worse, just in a different way. In context ↗
Began after: COVIDI got Covid on May 24, high temp, headaches, lots of sweating, etc.

Read from 276 of their posts and comments; links to the 74 this page draws on

Summary

Mesa 12404 got Covid in May 2023 and developed neurological long Covid with daily headaches, brain fog, dizziness and a movement disorder diagnosed as FND. Propranolol helped his headaches and he reached roughly 70% recovery by ten months, but Topiramate left him bedbound; he later described ME/CFS/PEM, and by early 2025 was improved but still fragile, walking about a mile at most and having setbacks after colds.

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What they tried

What they credit

propranolol· Helped a lot · main LDN· Helped a lot · main radical rest· Helped time· Helped amitriptyline· Helped valerian root· Helped NAC· Helped CoQ10· Helped compression garments· Helped electrolytes and salt· Helped

Also tried

pacing / staying below 1500 steps· Helped melatonin· Helped nicotine gum· Helped · wore off antihistamines· Helped physical therapy· Helped vagus nerve stimulation· Helped meditation, yoga and breathwork· Helped iron supplements· Helped kombucha· Helpedgrape juice· HelpedMediterranean diet· No change low-histamine diet· No change lions mane· No change methylene blue· No change CBT· No change turmeric· No changeFocus Factor· No changenattokinase· No change aspirin· No change Paxlovid· No change COVID vaccination· No changeblood pressure medications· No changeoff-label gout/AIDS medications· No changeguanfacine· Worse topiramate· Much worse ibuprofen· Not said naproxen· Not said caffeine· Not said red wine· Not said Tamiflu· Not said sleepy time tea· Not said zinc· Not said vitamin D· Not saidvitamins B2, B12 and C· Not saidFluoxetine (Prozac)· Not said

Their words about each treatment

pacing / staying below 1500 steps · HelpedI keep myself below 1500 steps per day, that is about all I can handle. In context ↗
radical rest · HelpedBasically i had to adopt patterns of radical rest. In context ↗
time · Helpedthanks to time and new medications In context ↗
Mediterranean diet · No changeI went more Mediterranean, and started cutting out bread. In context ↗
low-histamine diet · No changeI tried eating low histamine but it didn’t do much for me. In context ↗
melatonin · HelpedThen I take 15 mg of melatonin at night. In context ↗
guanfacine · WorseI started gaunfacine two weeks ago. In context ↗
propranolol · Helped a lotPropranolol is the only thing so far that has helped me In context ↗
amitriptyline · HelpedI started taking propranolol, Amitripline, and valerian root at the same time In context ↗
valerian root · Helpedsometimes I will take Valerian root as well. In context ↗
topiramate · Much worseI was on Topiramate for a week and it left me bedbound and a fall risk. In context ↗
ibuprofen · Not saidwas taking an ibuprofen a day (just one 200 mg with food) In context ↗
NAC · HelpedI’ve been taking NAC, CoQ10, and using nicotine gum. In context ↗
CoQ10 · HelpedI take CoQ10 daily. In context ↗
lions mane · No changelions mane supplements In context ↗
nicotine gum · HelpedI tried gum instead of patches. At 3.5 mg I saw a very small improvement In context ↗
methylene blue · No changeI’ve also tried methylene blue, the only thing it did for me was change my pea color. In context ↗
LDN · Helped a lotLDN: increased my energy envelope, makes PEM not so bad. In context ↗
antihistamines · HelpedPropranolol and antihistamines. In context ↗
CBT · No changeWe tried Cognitive Behavioral Therapy In context ↗
physical therapy · HelpedI did find a really good Neuro physical therapist and she has helped a lot. In context ↗
vagus nerve stimulation · HelpedI did a combination of meditation, yoga, and vegus nerve stimulation In context ↗
meditation, yoga and breathwork · HelpedRest, meditation, deep breathing, Vegus Nerve stimulation In context ↗
compression garments · Helpedcompression garments and electrolytes In context ↗
electrolytes and salt · HelpedWater with electrolytes. Or just eating more salt in general. In context ↗
iron supplements · HelpedI’ve been taking iron supplements and they have been helping me a lot. In context ↗
turmeric · No changeI have tried COQ10, NAC, turmeric, Lions Mane, Magnesium Citrate, Focus Factor, Nattokinase In context ↗
aspirin · No changeAspirin does nothing for me. In context ↗
naproxen · Not saidI will also take Naproxen when I feel it coming on. In context ↗
caffeine · Not saidLiterally with caffeine and nicotine. One day they help, next day it supercharges the problems. In context ↗
kombucha · HelpedI will drink a kombucha at noon, it actually makes me feel better. In context ↗
grape juice · Helpedthe grape juice works better for me In context ↗
red wine · Not saidI will also drink a glass of red wine from time to time In context ↗
Paxlovid · No changeit did not help me much when I was reinfected last time In context ↗
Tamiflu · Not saidI did get tamaflu (sp?) for the flu. In context ↗
COVID vaccination · No changeI’ve had two vaccine shots since getting Covid, my reaction to the vaccines wasn’t any different and didn’t improve anything. In context ↗
blood pressure medications · No changeI’m on 3 different medications blood pressure, but I can’t say anything has changed because of them. In context ↗
off-label gout/AIDS medications · No changeOne is for gout, another for AIDS. They didn’t work for me In context ↗
sleepy time tea · Not said8:30 pm: drink sleepy time tea In context ↗
zinc · Not saidtake Magnesium and zinc at night. In context ↗
vitamin D · Not saidvit B, vit D, vit C, magnesium, NAC, CoQ10 In context ↗
vitamins B2, B12 and C · Not saidvitamins B2, B12, C, D, etc In context ↗
Fluoxetine (Prozac) · Not saidMentally, it made me much, much worse. In context ↗

Approaches: POTS medication · Beta-blockers · Radical rest · Supplements · Tricyclic antidepressants

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
May 2023	Covid infection, then neurological long Covid within a weekI got Covid on May 24, high temp, headaches, lots of sweating, etc. by May 30 I was “recovered”. In context ↗	Mild
June 2023	crashed after a gym session and a 1.5-mile walkI also remember feeling almost recovered, so I took a walk, made it about 1.5 miles, and just felt tired. That was my last walk for 6 or 7 months. In context ↗	Moderate
September 2023	guanfacine reduced brain fog and he could walk furtherbefore gaunfacine I could only walk about 50 ft before the head pressure got to be too much, now I can make it a good 100 yards In context ↗	Moderate	Guanfacine
December 2023	headaches largely controlled; could read and walk half a mileI feel like I am just starting to feel improvement’s happening now, thanks to time and new medications. Even compared to a month ago I am so much better. I can read books again, watch tv, even walk half a mile. In context ↗	Moderate	Propranolol (Inderal)
March 2024	70% recovered, walking two miles, light workoutsI’d say I’m 70% recovered at 10 months. I can walk 2 miles without too much issue, even do light workouts. In context ↗	Mild	Propranolol (Inderal)
April 2024	left bedbound by TopiramateActual lowest point was when I was on Topiramate for a week. My daily walking distance went from 1/2 mile to 15 feet. In context ↗	Severe
August 2024	walking more, out of the wheelchair since JuneI can walk more, stand for longer, but haven’t used my wheelchair since June, headaches are much weaker. In context ↗	Moderate
December 2024	cold caught at Thanksgiving set him backLast month I came home from thanksgiving with a cold. The cold was nominal, no big deal. But at the same time it moved me back a year. In context ↗	Moderate
April 2025	flu, then an ER visitI relapsed from a cold, and a flu sent me the ER a couple weeks ago In context ↗	Moderate
September 2025	Covid reinfectionI was also doing better until my reinfection in early September. First thing I noticed was increased exhaustion. In context ↗	Moderate
November 2025	crashed for three weeks after Halloween overexertionAfter Halloween I crashed for 3 weeks, barely getting out of bed. In context ↗	Severe
August 2026	crashed after a family reunionI just came back from a family reunion, and I’ve been crashing all week. In context ↗	Moderate
October 2026	improved to short walks, LDN helpingI’ve been severe and barely getting out of bed, and have improved to the point I can take short walks. LDN has helped me a lot. In context ↗	Moderate	Low-dose naltrexone

Adverse events

Topiramate (Topamax)“Within a few days I was completely bed-bound because of it.” In context ↗ Made symptoms worse
Topiramate (Topamax)“I found out I couldn’t just stop taking it, I had to take half doses for another 3 days.” In context ↗ Withdrawal problems
“This weekend I was bedridden by a med and I’m just barely recovered.” In context ↗ Made symptoms worse
Propranolol (Inderal)“The full dose makes my heart beat too slow.” In context ↗ Heart rhythm problems
Propranolol (Inderal)“I did get a little bit of tinnitus from the propranolol, but it went away.” In context ↗ Side effects
Guanfacine“I got super dizzy. I was already dizzy, so it made that worse.” In context ↗ Side effects
Amitriptyline (Elavil)“The side effects were enough to push me into actual depression, which was a first. I was also going thru periods of absolute rage while on them” In context ↗ Mood or psychiatric effects
Amitriptyline (Elavil)“they absolutely killed my ability to find any enjoyment out of sex.” In context ↗ Other
Fluoxetine (Prozac)“Mentally, it made me much, much worse.” In context ↗ Mood or psychiatric effects
Nicotine patches“6mg makes me dizzy as all heck ... At 7 mg (which some people say is the magic dose) I turned into a basket case.” Side effects
Nicotine patches“Literally with caffeine and nicotine. One day they help, next day it supercharges the problems.” In context ↗ Made symptoms worse
Nicotine patches, Caffeine and coffee“Literally with caffeine and nicotine. One day they help, next day it supercharges the problems.” In context ↗ Made symptoms worse
Methylene blue“Made my pee green, but that was it.” In context ↗ Side effects
Paxlovid / nirmatrelvir“everything smelled like a pill bottle while I was on it” In context ↗ Side effects
“I take medication to lower my blood pressure, which causes my brain to FREAK THE F OUT any time I go from laying down to standing” In context ↗ Made symptoms worse
Physical therapy / physiotherapy“every time I did my exercises I was EXHAUSTED afterwards. Sometimes for a day or two.” In context ↗ Made symptoms worse
COVID vaccination as treatment“It usually takes me a few days to recover from the vaccine” In context ↗ Side effects

Symptoms mentioned

Anxiety & low mood Brain fog Breathlessness Headaches & migraine Light & noise sensitivity Neuropathy & tingling POTS & dysautonomia Pain & fibromyalgia Post-exertional malaise Sleep problems Tinnitus Vision problems

Their words about their symptoms

Post-exertional malaiseIf I exercise too much I crash as well (CFS or PEM). In context ↗
Brain fogI have _less_ brain fog, but I am a long way from _no_ brain fog. In context ↗
POTS & dysautonomiaI’ve already been diagnosed with Orthostatic Intolerance, a form of dysautonomia, which means most of this happens when I’m standing In context ↗
Sleep problemsI also wake up 3-4 times a night, and just go back to sleep the best I can. In context ↗
Headaches & migraineSince then I’ve had brain fog, head pressure, dizziness, blurry vision, and various headaches every day. In context ↗
Light & noise sensitivityI have to limit and monitor how “stimulating” my environment is. In context ↗
BreathlessnessI was dealing with air hunger, dizziness, exhaustion, and collapsing In context ↗
Neuropathy & tinglingstill have head pressure, weird nerve pain (neuropathy) In context ↗
Anxiety & low moodYou can’t be this miserable for this long without sinking into some level of depression. In context ↗
Tinnitustinnitus: no change In context ↗
Pain & fibromyalgiaME/CFS, dysautonomia, fibromyalgia, etc. In context ↗

Long COVID headaches, brain fog and dizziness; propranolol helped headaches, then relapsed

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

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What they credit

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Symptoms mentioned

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