Long COVID
Moderate → no benefitIll for 15 months
Long COVID with dysautonomia, migraines and vomiting, still ill
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill for
- 15 months
- Last post
- Nov 2025
In their words
- At worst: Moderate
These headaches are often accompanied by light sensitivity and jaw pain so it makes it hard to do daily activities outside of my dark room without increasing my pain.
In context ↗ - Now: No benefit
I’ve been unmedicated for 2 ish months now and I feel horrendous.
In context ↗
Read from 52 of their posts and comments; links to the 31 this page draws on
Summary
A person in their early twenties in the southern US developed long COVID after an August 2024 infection, with dysautonomia, frequent migraines, joint pain, vomiting, insomnia and pins and needles. They were diagnosed with Covid-induced dysautonomia in February 2025, developed severe hypothyroidism by June 2025, and after a July 2025 reinfection were later found to have early Graves' disease. By November 2025 they were still ill and off thyroid medication, feeling horrendous; salt and electrolytes gave slight relief.
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What they tried
Also tried
Biotene toothpaste and mouthwash· HelpedZyrtec· HelpedFamotidine· HelpedSinus surgery· Helped · wore offElectrolytes, salt, water and compression socks· HelpedElectrolytes, salt, water and compression socks· HelpedZofran· HelpedTiger balm· HelpedCaffeine· HelpedHeating pad / heat· HelpedSteroids / prednisone· HelpedWeed (cannabis, smoked)· HelpedAllegra· HelpedSalt water gargles and numbing mouth wash· HelpedTylenol (acetaminophen)· No changeAspirin· No changeIcy hot· No changeLidocaine patches· No changeArnicare gel· No changeVitamin D3· No changeMultiple different diets· No changeAbilify· WorseAllergy shots· WorseLexapro· WorseMethylene blue· WorseSupine exercise and mild stretching· WorseIbuprofen· Much worseNicotine patches· Not saidFlonase, later Nasacort· Not saidLithium· Not saidExcedrin migraine· Not saidWeekly B12 supplements· Not saidMedications to control GI symptoms· Not saidLevothyroxine (Levo)· Not saidSitting for activities (chair in bathroom, shower stool)· Not saidCannabis (THC, marijuana)· Not said
Their words about each treatment
- Abilify · Worse
I have used it for its intended use and just made me more agitated tbh.
In context ↗ - Nicotine patches · Not said
I’ve had the most success with quitting nicotine with patches but I still tend to relapse a lot.
In context ↗ - Biotene toothpaste and mouthwash · Helped
Biotene toothpaste and mouthwash definitely helps make it more comfortable.
In context ↗ - Zyrtec · Helped
I take famotodine and Zyrtec daily to calm my allergy rhinitis and chronic sinusitis but still sometimes that doesn’t even help.
In context ↗ - Flonase, later Nasacort · Not said
I used Flonase for years but eventually switched to nasacort bc it would always go in the back of my throat and have this chemically taste.
In context ↗ - Allergy shots · Worse
I always felt horrible afterwards with a giant hive (larger than a quarter) at the injection site and increased symptoms
In context ↗ - Sinus surgery · Helped
Surgery helped so I could actually have a clear airway to breathe through ... I just went into remission for about 6 months after surgery then got long covid and my infections started to reoccur again.
- Electrolytes, salt, water and compression socks · Helped
It lowers bpm spikes, decreases lightheadedness, and helps with my joint/muscle pain. ... I’ve been wearing compression socks and that seems to help the cramps
- Zofran · Helped
If I don’t take my daily Zofran I’m pretty much guaranteed to vomit also.
In context ↗ - Lithium · Not said
a psychiatric medication (coincidentally also a type of salt) I’m on
In context ↗ - Ibuprofen · Much worse
I am allergic to ibuprofen it induces an asthma attack so I can’t take it unless I feel like going to the ER.
In context ↗ - Tylenol (acetaminophen) · No change
I have been taking Tylenol or excedrine migraine but many times these don’t give me much luck.
In context ↗ - Excedrin migraine · Not said
Excedrine migraine (hit or miss)
In context ↗ - Tiger balm · Helped
So far I’ve tried tiger balm (probably helps the most), Tylenol, asprin, extra caffeine, icy hot, lidocaine patches, and arnicare gel. All pretty minimal when it comes to relief if anything.
In context ↗ - Caffeine · Helped
It helps with migraines so I didn’t want to completely cut it out but on bad symptom days I may have more palpitations if I drink more coffee.
In context ↗ - Heating pad / heat · Helped
Heat helps temporarily like if I lay on a heating pad I won’t feel the back pain as much.
In context ↗ - Vitamin D3 · No change
I take vitamin D3 5000IU recommended by my neuro. No side effects, but i haven’t noticed a difference either.
In context ↗ - Weekly B12 supplements · Not said
Might have been my B12 levels for that one bc mine were on the lower side, I was recommended for weekly supplements by my neurologist.
In context ↗ - Multiple different diets · No change
I’ve tried multiple different diets without luck.
In context ↗ - Medications to control GI symptoms · Not said
I’ve tried all kinds of medications to control the GI symptoms but nothing fully does it
In context ↗ - Steroids / prednisone · Helped
Usually the only thing that has helped me is some kind of steroids to reduce inflammation.
In context ↗ - Levothyroxine (Levo) · Not said
I didn’t respond appropriately to Levo, even with decreasing dosages my TSH plummeted.
In context ↗ - Lexapro · Worse
I wasn’t on lexapro very long but all I have to say is DO NOT take lexapro with any drugs containing methylene blue. ... I woke up in the middle of the night with my heart pounding out of my chest over 160bpm.
In context ↗ - Methylene blue · Worse
DO NOT take lexapro with any drugs containing methylene blue ... I woke up in the middle of the night with my heart pounding out of my chest over 160bpm.
In context ↗ - Weed (cannabis, smoked) · Helped
I’ve used it a lot for chronic nausea/vomiting issues because prescribed medication does fail many times.
In context ↗ - Allegra · Helped
upon switching to Allegra a month ago I’ve only gotten hives once.
In context ↗ - Salt water gargles and numbing mouth wash · Helped
I’ve tried salt water gargles and numbing mouth wash but it’s like 20 min of relief at best.
In context ↗ - Supine exercise and mild stretching · Worse
I do this periodically but the increase of symptoms by doing so sometimes will make me stop as it can get very uncomfortable.
In context ↗ - Sitting for activities (chair in bathroom, shower stool) · Not said
I put a chair in my bathroom so I can brush my teeth/wash face sitting down and a stool in my shower.
In context ↗ - Cannabis (THC, marijuana) · Not said
last time I think I just took too much for my empty stomach and it made me get the spins real bad.
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. The chart starts 2 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 |
|---|---|---|
| October 2024 | Daily migraines confining her to a dark roomit makes it hard to do daily activities outside of my dark room without increasing my painIn context ↗ | Moderate |
| January 2025 | Worse for days around an inconclusive tilt table testI was so much worse before and after the test continuing to feel worse than usual days afterIn context ↗ | Moderate |
| July 2025 | Covid reinfection a month after starting levothyroxine, with thyroid labs going abnormalI was reinfected with Covid 1 month after starting levothyroxineIn context ↗ | Moderate |
| November 2025 | Still ill and off thyroid medication, feeling horrendousI’ve been unmedicated for 2 ish months now and I feel horrendousIn context ↗ | Moderate |
Adverse events
- Ibuprofen (Advil, Nurofen, Motrin)“I cannot take ibuprofen or anything with its active ingredient because it induces asthma attacks.” In context ↗ Allergic reaction / anaphylaxis
- Low-dose Abilify / aripiprazole“I have used it for its intended use and just made me more agitated tbh.” In context ↗ Mood or psychiatric effects
- “I get severe nicotine withdrawal symptoms and going cold turkey or using oral methods never worked for me just made me feel sicker tbh.” In context ↗ Side effects
- Allergy shots (immunotherapy)“I always felt horrible afterwards with a giant hive (larger than a quarter) at the injection site and increased symptoms.” In context ↗ Allergic reaction / anaphylaxis
- Cannabis (THC, marijuana)“last time I think I just took too much for my empty stomach and it made me get the spins real bad.” In context ↗ Side effects
- Methylene blue“I woke up in the middle of the night with my heart pounding out of my chest over 160bpm.” In context ↗ Heart rhythm problems
- Cetirizine (Zyrtec)“I took Zyrtec for 5+ years and my hives started to worsen (getting them daily)” In context ↗ Side effects
Symptoms mentioned
Brain fogBreathlessnessHeadaches & migraineHeart symptoms & palpitationsLight & noise sensitivityMast cell (MCAS) & allergiesMuscle weaknessNeuropathy & tinglingPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTinnitus
Their words about their symptoms
- Post-exertional malaise
This flare was probably a combo of arguing with my mother and Christmas exertion
In context ↗ - Brain fog
chest pain, brain fog, upper back pain
In context ↗ - POTS & dysautonomia
my heart rate definitely raises 30-60bpm upon standing
In context ↗ - Mast cell (MCAS) & allergies
I take famotodine and Zyrtec daily to calm my allergy rhinitis and chronic sinusitis
In context ↗ - Sleep problems
worsened insomnia
In context ↗ - Pain & fibromyalgia
My pain is primarily in my joints such as hips, elbows, shoulders, and knees
In context ↗ - Headaches & migraine
every morning i wake up with a migraine or some level of headache
In context ↗ - Light & noise sensitivity
These headaches are often accompanied by light sensitivity and jaw pain
In context ↗ - Breathlessness
symptoms of lightheadedness, dyspnea, heart palpitations
In context ↗ - Heart symptoms & palpitations
my heart will shoot up to 120-160bpm
In context ↗ - Muscle weakness
I have constant muscle pain and weakness in my legs
In context ↗ - Neuropathy & tingling
I get pins and needles in my feet a lot if I don’t wear compression socks when I’m upright
In context ↗ - Tinnitus
I still hear it time to time but now it’s more so feeling a bounding pulse in my head
In context ↗