Long COVID with PEM, daily headache and POTS, now somewhat better with pacing

Condition: Long COVID
At worst: Moderate (mostly housebound)
Ill before improving or writing: 2 years
Last post: Oct 2026

In their words

At worst: ModerateI am somewhere between mild and moderate, mostly housebound In context ↗
Now: Somewhat betterExcept for a second Covid infection that set me back worse than before, I’ve been having steady improvement over time. In context ↗
Began after: COVIDMy first infection in 2022/07 gave me all sorts of symptoms from tinnitus, GI issues, pots to mcas and mecfs with migraines from hell.

Read from 139 of their posts and comments; links to the 43 this page draws on

Summary

Hawk 17019 developed long COVID in July 2022 after a COVID infection, with PEM, daily headache, POTS, suspected MCAS, gut and sleep problems. Low-dose naltrexone, ketotifen, antihistamines and a low-histamine diet brought them to 60-80% by spring 2024. A summer heat crash set them back, and an autumn reinfection dropped them from mild to moderate. More recently, low-dose aripiprazole, dextromethorphan and pacing have brought slow, steady improvement.

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What they tried

What they credit

low dose naltrexone (LDN)· Helped a lot · main · wore off low histamine diet (SIGHI list)· Helped a lot pacing / staying within the energy envelope· Helped a lot · main LDA (low dose aripiprazole)· Helped a lot progesterone only mini pill (drospirenone)· Helped a lot ketotifen· Helped famotidine· Helped aggressive rest· Helped lactoferrin· Helped nattokinase· Helped bromelain· Helped probiotics for histamine intolerance· Helped dextromethorphan (DXM)· Helped omega3-VitaminD-K-E supplement· Helped

Also tried

ginkgo extract· Helped isotonic salt drink· Helped acupressure mat· Helpedcortisone nose spray (mometasonfuronat)· Helpednose spray for allergies· No changestatins· No change ice baths· Worse psychotherapy· Worse vagus nerve stimulation device (ear electrode)· Worse paxlovid· Not said nicotine patches· Not saidpsilocybin tea· Not saidCOVID vaccination as treatment· Not said

Their words about each treatment

low dose naltrexone (LDN) · Helped a lotwith LDN low dose naltrexone starting very low helped me immensely In context ↗
ketotifen · HelpedI am taking ketotifen as my h1 twice daily and also famotidine. This and following dietary restrictions immensely helped my brainfog In context ↗
famotidine · HelpedI am taking ketotifen as my h1 twice daily and also famotidine In context ↗
low histamine diet (SIGHI list) · Helped a lotthe game changer regarding mcas was my dietary restrictions In context ↗
pacing / staying within the energy envelope · Helped a lotmost of all staying within the energy envelope In context ↗
aggressive rest · HelpedI get out by aggressively resting as long as it needs. In context ↗
ginkgo extract · HelpedGinkgo extract, I am taking 80mg in the morning In context ↗
isotonic salt drink · Helped40/60 Sweet juice with water and half a tbsp of salt per litre helps me a lot In context ↗
ice baths · WorseI can not do ice baths - my nervous system reacts very badly to those. In context ↗
acupressure mat · HelpedAlso sleeping masks and some times my acupressure mat In context ↗
psychotherapy · Worsethe same therapist and same sessions from before my me cfs onset now cause PEM and crashes In context ↗
paxlovid · Not saidI took paxlovid too for the first time and my infection this time was more mild without fever. In context ↗
nose spray for allergies · No changeI had a nose spray for allergies but it did not help a lot In context ↗
cortisone nose spray (mometasonfuronat) · Helpedshe prescribed me a cortisone nose spray with the ingredient mometasonfuronat, which does clear my nose up for a few hours In context ↗
lactoferrin · HelpedFor me lactoferrin, bromelain, nattokinase and the right probiotics have been very helpful. In context ↗
nattokinase · HelpedI feel like Nattokinase and Bromelain are helping but too early to tell In context ↗
probiotics for histamine intolerance · HelpedI am taking probiotics for people with histamine intolerance, which is very helpful. In context ↗
nicotine patches · Not saidinitially I felt it gave me more energy, but of course I did crash later on, was not possible to tell if it was contributing positively or not In context ↗
LDA (low dose aripiprazole) · Helped a lotLDA I started about 1.5 years later and it did have a very significant effect on my PEM duration and severity. In context ↗
progesterone only mini pill (drospirenone) · Helped a lotI take a progesterone only mini pill and it has made a huge difference in quality of life. No more menstrual pem In context ↗
psilocybin tea · Not saiddrank a psilocybin tea and it was not causing issues mcas/digestion wise In context ↗
statins · No changeI know someone who got rid of pem with statins. Unfortunately did nothing notable for me In context ↗
dextromethorphan (DXM) · HelpedDextromethorphan does wonders for me In context ↗
omega3-VitaminD-K-E supplement · HelpedWhat seems to help is my onega3-VitaminD-K-E supplement In context ↗
vagus nerve stimulation device (ear electrode) · Worseusing it lead to heart palpitations and a horrible depressive episode In context ↗
COVID vaccination as treatment · Not saidI did have three Pfizer vaccines myself and I’ve had some reaction to them (excessive sleepiness after for a few days) In context ↗

Approaches: H2 blockers · Anticoagulants · Antihistamines & MCAS · Diet · Other drugs and medicines · Pacing · Radical rest · Sex hormones · Supplements

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 12 months after onset: the story doesn’t say how ill they were before that. Dates are when they posted. What the levels mean.

Show as a table

When	What happened	Where they were	After
2023	first year of decline, pushed through while studyingfirst year I was declining (from which the first half year I did not know what is going on and pushed through) In context ↗	Mild
spring 2024	clear improvement on medication and dietSlowly with the help of medication (LDN ketotifen and antihistamine diet) i felt a bit better in 2024, id say somewhere between 60-80% In context ↗	Mild	Low-dose naltrexone
summer 2024	crash through the summer heatUnfortunately summer heat did set me into a crash for the whole summer month In context ↗	Moderate
autumn 2024	COVID reinfection destroyed the gainsback to square one or actually even worse than before, where my ongoing medication and supplements do not help any more In context ↗	Moderate
late 2025	low-dose aripiprazole reduced PEM duration and severityLDA I started about 1.5 years later and it did have a very significant effect on my PEM duration and severity. In context ↗	Mild	Low-dose Abilify / aripiprazole
October 2026	steady slow improvement, still mild-moderateExcept for a second Covid infection that set me back worse than before, I’ve been having steady improvement over time. In context ↗	Mild

Adverse events

Cryotherapy and cold exposure“I can not do ice baths - my nervous system reacts very badly to those.” In context ↗ Made symptoms worse
CBT and psychotherapy“the same therapist and same sessions from before my me cfs onset now cause PEM and crashes from the emotional and cognitive exhaustion” In context ↗ Made symptoms worse
Low-dose naltrexone“With LDN I had some trouble sleeping well as it induced very vivid dreams and nightmares with every dose increase.” In context ↗ Insomnia from treatment
Paxlovid / nirmatrelvir“Paxlovid only gave me a bit of a bad taste in my mouth, otherwise I tolerated it very well.” In context ↗ Side effects
COVID vaccination as treatment“I did have three Pfizer vaccines myself and I’ve had some reaction to them (excessive sleepiness after for a few days)” In context ↗ Side effects
Nicotine patches“I only tried to go up to 7mg once but felt nauseous” In context ↗ Side effects
Low-dose Abilify / aripiprazole“Also I take it after breakfast and my sleep was a bit delayed for a few days but it got back to normal :)” In context ↗ Insomnia from treatment
Low-dose Abilify / aripiprazole“it is reactivating old addictions that I’ve overcome which is really weird” In context ↗ Mood or psychiatric effects
Low-dose Abilify / aripiprazole“I think it’s masking my baseline and I’m more prone to pem now that I don’t „feel“ the overexertion right away.” In context ↗ Made symptoms worse
Progestin-only birth control (mini pill, implant or shot)“can not have that unfortunately as it drives my mcas and gives me horrible mental side effects” In context ↗ Mood or psychiatric effects
Progestin-only birth control (mini pill, implant or shot)“it only started after I got on the mini progesterone only pill and stopped any bleeding, only to have spotting occur during pem” In context ↗ Side effects
Vagus nerve stimulation“I have a cheap device with an ear electrode but using it lead to heart palpitations” In context ↗ Heart rhythm problems
Vagus nerve stimulation“and a horrible depressive episode (which I don’t have otherwise and stopped after a while)” In context ↗ Mood or psychiatric effects

Symptoms mentioned

Anxiety & low mood Brain fog Gut problems Hair loss Headaches & migraine Heart symptoms & palpitations Light & noise sensitivity Muscle weakness Neuropathy & tingling POTS & dysautonomia Sleep problems Tinnitus Vision problems

Their words about their symptoms

Brain fogMy PEM is now mostly fatigue and brain fog, but way less severe than before LDA In context ↗
POTS & dysautonomiaMy POTS is mostly ok now, only triggered by heat In context ↗
Sleep problemsmy sleeping needs (from 15+hours to now 8-10) In context ↗
Headaches & migrainestill the general area hurts as a part of PEM for me In context ↗
Gut problemspotato gives me orange stool and explosive diarrhea In context ↗
Light & noise sensitivityLight and sound sensitivity aswell as worsened pain when standing up In context ↗
Heart symptoms & palpitationsI would wake up without an alarm around 7am and have a racing heart In context ↗
Muscle weaknessthe small hand muscles that get very tired and cause pem In context ↗
Neuropathy & tinglingLDN really helps me immensely with my nerve pain In context ↗
Anxiety & low moodmy anxiety is almost gone since I’m keeping my mast cells at bay In context ↗
Tinnitusmy tinnitus ... is back as well as the headache In context ↗
Vision problemsthey always go together with migraines with optical issues In context ↗
Hair lossmy hair loss was insane for half a year, these got ok again without intervention In context ↗

Long COVID with PEM, daily headache and POTS, now somewhat better with pacing

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

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What they tried

What they credit

Also tried

Their path

Adverse events

Symptoms mentioned

Ask Miruvor AI

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