Long COVID
Moderate → somewhat betterIll 5 months before improving or writingNeeds ongoing treatment
Long COVID with severe head pain and vertigo, somewhat better with oxygen
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 5 months
- Last post
- Jul 2026
In their words
- Condition: Long COVID
Developed long covid, with many different issues
In context ↗ - At worst: Moderate
I could not walk without stopping every 15 feet to rest and I could only make it up two streets
In context ↗ - Now: Somewhat better
I can walk slowly for a few blocks in cool weather. In warm weather I have to use oxygen to walk.
In context ↗ - Began after: COVID
I got COVID on Christmas day last year
In context ↗ - Says they never had: Loss of smell or taste
I never lost my sense of smell or taste.
Read from 169 of their posts and comments; links to the 65 this page draws on
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Summary
After COVID at Christmas 2021, the user developed long COVID with severe head pain, vertigo, gut problems and weight loss, becoming too weak to walk unaided. Nerve blocks, a low-histamine diet, yoga nidra, Buteyko breathing and oxygen gave partial improvement, but a bivalent booster in October 2022 caused lasting edema and foot neuropathy. By spring 2023 they could walk a few blocks again, with oxygen helping, still had to rest frequently and remained significantly limited.
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What they tried
What they credit
Also tried
occipital nerve blocks· Helped a lot · wore offcervical plexus block with dextrose· Helped a lot · wore offL-Methylfolate· Helped a lotl-glutamine· Helpedleucine· HelpedUbrelvy· Helpedvocal cord exercises· Helpedphysical therapy manual release· Helpedmedical marijuana tea· Helpedcompression socks· HelpedEpsom salt soaks· HelpedEpsom-It lotion· Helpedgrapefruit essential oil lotion· Helpedprisms in glasses· HelpedBoost Oxygen cans· Helpedmanual lymphatic drainage· Helped · wore offgoat whey protein powder· HelpedLexapro and antianxiety meds· Helpedcromolyn sodium swish· HelpedQulipta· Helpedheated clothing and rechargeable hand warmers· HelpedSolemender ice device· HelpedMiralax· Helpedtime· Helpedtai chi· WorsePT breathing exercise· WorseNAC· Worsefish oil· Worseflax· WorseCOVID vaccination as treatment· WorseDiuretics· WorseTopiramate· Not saidacupuncture· Not saidPepcid· Not saidchia seed oil· Not saidAnthony's collagen protein· Not saidB12 supplement· Not saidPulmicort inhaler· Not saidAtrovent inhaler· Not saidfennel tea· Not saidparsley tea· Not saidcastor oil packs· Not saidmagnesium malate· Not saidCBD (cannabidiol)· Not said
Their words about each treatment
- low histamine diet · Helped a lot
I don't see myself going off the low histamine diet as it's made such big changes for me.
In context ↗ - probiotics · Helped
Had to be absolutely strict about low histamine foods and take the probiotics and digestive enzymes my doc recommended.
In context ↗ - digestive enzymes · Helped
take the probiotics and digestive enzymes my doc recommended
In context ↗ - l-glutamine · Helped
I also took l-glutamine for several months until the terrible burning in my stomach stopped.
In context ↗ - leucine · Helped
I feel like the leucine has helped me build some biceps and triceps.
In context ↗ - Topiramate · Not said
FYI, Topiramate can cause brain fog, it's a trade off for me.
In context ↗ - Ubrelvy · Helped
The Ubrelvy has helped with the migraines.
In context ↗ - occipital nerve blocks · Helped a lot
The nerve blocks were a life saver.
In context ↗ - tai chi · Worse
now when I try to do some light tai chi indoors it's just as exhausting
In context ↗ - Yoga Nidra · Helped a lot
I really believe it saved my sanity and helped my body and mind and I continue to rely on it.
In context ↗ - Buteyko breathing · Helped
I believe this and yoga nidre helped me "relearn" how to breathe
In context ↗ - vocal cord exercises · Helped
I got some relief by doing my vocal cord warm up stretches and vocal exercises
In context ↗ - PT breathing exercise · Worse
I did the exercise with her seated in a chair and after three breathes, the burning in my lungs came on in a fury.
In context ↗ - physical therapy manual release · Helped
after I was evaluated and worked on I was able to breathe more deeply and easily
In context ↗ - NAC · Worse
it makes me very dizzy at higher doses. Has anyone else experienced this? It happens once I get up to 1200.
In context ↗ - cervical plexus block with dextrose · Helped a lot
I had immediate sweet sweet relief for about 8 days and I felt like a new person.
In context ↗ - medical marijuana tea · Helped
My current strain for pain is PB Souffle and for Neuropathy I use Mimosa.
In context ↗ - spironolactone · Helped
Spironolactone. I had to be very careful with this as I have dysautonomia and it caused my blood pressure to drop. However, it definitely helped.
In context ↗ - compression socks · Helped
The compression on the feet helps the pain.
In context ↗ - Epsom salt soaks · Helped
The Epsom salt soaks are the only thing that truly helps with the pain in my feet.
In context ↗ - Epsom-It lotion · Helped
it does provide some temporary relief and now it's part of my daily routine
In context ↗ - grapefruit essential oil lotion · Helped
I make a lotion with the grapefruit essential oil and it feels cooling on my neuropathy
In context ↗ - prisms in glasses · Helped
my eye doctor redid my glasses with prisms to cut glare and that helped some
In context ↗ - oxygen supplementation · Helped
I've tried walking with oxygen supplementation three times now and it makes a difference!
In context ↗ - Boost Oxygen cans · Helped
It's NOT medical supplementation, but it helps a bit.
In context ↗ - Gammacore device · Helped
It really helps the pain. Bad news? An horrible increase in Raynaud's as painful as the head pain.
In context ↗ - manual lymphatic drainage · Helped
after she did the first drainage, I had two really good days where I felt like my energy was up
In context ↗ - acupuncture · Not said
I've resumed getting acupuncture again and now I'm bruising in more places
In context ↗ - Pepcid · Not said
I also take pepcid, but my gut was a wreck for six months.
In context ↗ - fish oil · Worse
I had to stop fish oil for that reason and started using chia seeds oil instead.
In context ↗ - flax · Worse
Flax has omega 3 too, I just can't tolerate it.
In context ↗ - chia seed oil · Not said
My nutritionist has me using 2 teaspoons a day
In context ↗ - goat whey protein powder · Helped
The goat milk protein powder helped me regain the weight and muscle I lost.
In context ↗ - Anthony's collagen protein · Not said
I also can tolerate Anthony's collagen protein when my mast cell is not at its worst.
In context ↗ - L-Methylfolate · Helped a lot
It made a HUGE difference for me with my depression.
In context ↗ - B12 supplement · Not said
My B12 was extremely deficient at month 2 ... I supplement daily.
In context ↗ - Lexapro and antianxiety meds · Helped
Anger was one of my depression related issues and the meds really help.
In context ↗ - cromolyn sodium swish · Helped
It's been better since my doc put me on a routine of cromyoln sodium swish 3x per day.
In context ↗ - Qulipta · Helped
Nerve blocks and Quilpta
In context ↗ - Pulmicort inhaler · Not said
I'm on pulmacort, a steroid inhaler, for my asthma
In context ↗ - Atrovent inhaler · Not said
I also have an atrovent inhaler for vocal cord dysfunction
In context ↗ - heated clothing and rechargeable hand warmers · Helped
I do so much better using it around the house.
In context ↗ - Solemender ice device · Helped
It feels good while I'm using it.
In context ↗ - fennel tea · Not said
I drink fennel tea every morning.
In context ↗ - parsley tea · Not said
I've also started drinking parsley tea.
In context ↗ - castor oil packs · Not said
I have also done castor oil packs, but they are messy.
In context ↗ - Miralax · Helped
Miralax is the only thing that has ever worked for me.
In context ↗ - magnesium malate · Not said
I also take magnesium malate.
In context ↗ - vagal nerve ear massages and eye movements · Helped
I do better with the ear massage, eye movement, yoga nidre and buteyko breathing.
In context ↗ - time · Helped
The passage of time helped with the tearyness
In context ↗ - CBD (cannabidiol) · Not said
it can make my heart flutter as a result and cause dizziness
In context ↗ - COVID vaccination as treatment · Worse
I had a major respiratory reaction.
In context ↗ - Diuretics · Worse
it makes my dysautonomia and sleep issues worse so I've been going on and off
In context ↗
Approaches: Hyperbaric & oxygen · Diet · Hormones & thyroid · Mind-body practices · Supplements · Vagus nerve stimulation
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. 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 |
|---|---|---|---|
| 25 December 2021 | COVID-19 infectionI got COVID on Christmas day last yearIn context ↗ | Not stated | |
| early 2022 | severe head pain and vertigo; ER visit; too weak to walk unaidedthe headache from hell and vertigo started about five days inIn context ↗ | Moderate | |
| May 2022 | occipital nerve blocks relieved pain and vertigoI got significant relief and my migraine meds started working again after a dose adjustment and my vertigo went away.In context ↗ | Moderate | |
| August 2022 | built walking tolerance and light gym workI'm back up to walking around 20-25 minutes around three to times a weekIn context ↗ | Moderate | |
| August 2022 | walking in cooler evening caused exhaustion and chest burningI started walking again but I felt so exhausted I wanted to lie down in the road every time.In context ↗ | Moderate | |
| September 2022 | gut pain, GERD, gas and bloating resolved; weight regainedthe horrible pain, gerd, gas and bloating are resolved and I'm not emaciated anymore.In context ↗ | Moderate | Low-histamine diet |
| 20 October 2022 | bivalent booster caused whole-body fluid retention and foot neuropathyfour days later, I developed fluid retention all over my body with the worst part in my legs and feetIn context ↗ | Severe | |
| January 2023 | bivalent cleared breathlessness and improved walkingThree days after the bivalent after I got past the fatigue, I went outside and suddenly I could make it slowly through the neighborhood without stopping.In context ↗ | Moderate | |
| November 2023 | could walk a few blocks in cool weather; oxygen needed in heatI can walk slowly for a few blocks in cool weather. In warm weather I have to use oxygen to walk.In context ↗ | Moderate | |
| June 2024 | edema and neuropathy improved but compression socks still neededBoth the edema and neuropathy improved, but I didn't return to normal and have to wear compression socks.In context ↗ | Moderate | |
| August 2024 | frequent nerve blocks made vertigo and light/sound sensitivity more bearableIt doesn't make it go away, just makes it more bearable.In context ↗ | Moderate | |
| September 2024 | neck and hamstring improved; fall damaged hipI ended up having an accident (I fall a lot from long covid related issues) and damaged my hipIn context ↗ | Moderate |
Adverse events
- CBD (cannabidiol)“it can make my heart flutter as a result and cause dizziness” In context ↗ Heart rhythm problems
- CBD (cannabidiol)“CBD can make your blood pressure drop when you first ingest it.” In context ↗ Low blood pressure or fainting
- Topiramate (Topamax)“Topiramate can cause brain fog, it's a trade off for me.” In context ↗ Side effects
- Meditation, yoga, breathwork“after three breathes, the burning in my lungs came on in a fury” In context ↗ Made symptoms worse
- NAC (N-acetylcysteine)“I desperately want to take more NAC but it makes me very dizzy at higher doses.” In context ↗ Side effects
- “It also is putting pressure on my lymphedema this time.” In context ↗ Made symptoms worse
- “I use a small amount at a time because it makes my blood pressure drop if I drink too much at once.” In context ↗ Low blood pressure or fainting
- Omega-3 and fish oil“I had to stop fish oil for that reason and started using chia seeds oil instead.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“I had the same reaction. 2 hours after the shot, lasted three days.” In context ↗ Gut side effects
- Diuretics“it makes my dysautonomia and sleep issues worse so I've been going on and off” In context ↗ Made symptoms worse
- Escitalopram (Lexapro)“During that period I experienced uncontrollable crying, a feeling like my brain was short circuiting, increased memory and ADD issues, nausea, and dizziness.” In context ↗ Withdrawal problems
- Voice therapy and vocal exercises“I saw some vocal exercises for the vagus nerve online but they were not from an SLP and they made my throat worse.” In context ↗ Made symptoms worse
- Vagus nerve stimulation“An horrible increase in Raynaud's as painful as the head pain.” In context ↗ Other
- Compression garments“I wear compression socks but they damaged the nerves around my calves so I now wear them with the sides cut at the calves.” In context ↗ Nerve pain
- Atogepant (Qulipta)“my neurologist put me on Quilpta, and it killed my appetite, which is a known side effect.” In context ↗ Side effects
- COVID vaccination as treatment“I had a major respiratory reaction.” In context ↗ Made symptoms worse
- COVID vaccination as treatment“Had bivalent booster in October 2022 and four days later developed edema and neuropathy in my lower legs and feet.” In context ↗ Nerve pain
- Spironolactone“I had to be very careful with this as I have dysautonomia and it caused my blood pressure to drop.” In context ↗ Low blood pressure or fainting
Symptoms mentioned
Anxiety & low moodBrain fogBreathlessnessGut problemsHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaSleep problemsTemperature regulation
Their words about their symptoms
- Brain fog
Over a year in and I function better but my recall is still shot.
In context ↗ - POTS & dysautonomia
I had dysautonomia before long covid, it just got worse.
In context ↗ - Mast cell (MCAS) & allergies
I'm still having difficult mast cell issues
In context ↗ - Sleep problems
it makes my dysautonomia and sleep issues worse
In context ↗ - Pain & fibromyalgia
LC related hip and leg pain
In context ↗ - Headaches & migraine
my migraines are still out of control even with the blocks
In context ↗ - Gut problems
the horrible pain, gerd, gas and bloating are resolved
In context ↗ - Light & noise sensitivity
I still have extreme light and sound sensitivity
In context ↗ - Breathlessness
It got rid of my shortness of breath and most of my chest pain
In context ↗ - Heart symptoms & palpitations
my heart symptoms felt like dysautonomia
In context ↗ - Muscle weakness
I was so weak I couldn't walk without assistance
In context ↗ - Neuropathy & tingling
The neuropathy has never gone away.
In context ↗ - Anxiety & low mood
my depression now is still significant
In context ↗ - Temperature regulation
temperature dysregulation is one of my primary issues
In context ↗
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