Long COVID
Moderate → somewhat betterIll 7 months before improving or writing
Long COVID with insomnia, tremors, POTS and gut problems, now a little better
- Condition
- Long COVID
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- 7 months
- Last post
- Dec 2023
In their words
- Condition: Long COVID
I've had LC for 6 months.
In context ↗ - At worst: Moderate
I went from yesterday being able to drive myself to the lab for a blood draw and to the pharmacy, took a few work calls, sent some emails, etc. ... Then today, where I feel like trash
In context ↗ - Now: Somewhat better
I’ve noticed more blood pooling and enlarged veins recently in my arms and legs. ... This also coincides with improving GI stuff (more regular bowel movements), less internal tremors, and a bit more energy at times.
In context ↗ - Began after: COVID
I caught Covid four times in 1.5 years. The first 3, I recovered just fine. The fourth and most mild one did me in big.
Read from 56 of their posts and comments; links to the 24 this page draws on
Summary
Oak 33447 got long COVID after a fourth COVID infection in May 2023, having recovered fully from three earlier ones. They pushed through that mild infection and within weeks had insomnia, internal tremors and later POTS, MCAS and gut problems, relying on Xanax to sleep though there were periods of natural sleep. By late December they reported more regular bowels, fewer tremors and a bit more energy, though sleep and crashes persisted.
Ask Miruvor AI
What they tried
Also tried
Xanax (alprazolam)· HelpedPropranolol· HelpedUnisom· Helpedlow histamine diet· HelpedCulturelle probiotics· HelpedTylenol PM· No changeBenadryl capsules· No changeCalm magnesium· No changeSleepytime Extra tea· No changevagus nerve stimulation with a TENS unit· Worsecardiac rehab· Much worsevitamins· Not saidmelatonin· Not saidsalt, water and compression· Not saidsalt, water and compression· Not saidveggie only cleanse / all plants· Not saidfasting· Not said
Their words about each treatment
- Tylenol PM · No change
Didn’t sleep at all last night even with Tylenol PM.
In context ↗ - Benadryl capsules · No change
I’ve tried Benadryl, Unisom, teas, magnesium, etc. Only thing that usually works well is Xanax.
In context ↗ - Xanax (alprazolam) · Helped
Only thing that usually works well is Xanax.
In context ↗ - Calm magnesium · No change
I tried Calm magnesium last night and it didn’t work.
In context ↗ - Propranolol · Helped
I have Propranolol but heard it can be hard to come off them. So I don’t take it every day, but do notice the difference.
In context ↗ - vagus nerve stimulation with a TENS unit · Worse
now they are back after trying to do vagus nerve stimulation with a Tens unit
In context ↗ - Unisom · Helped
Xanax and Unisom was the most effective combo for me.
In context ↗ - Sleepytime Extra tea · No change
I tried it it Sleepytime Extra tea and didn't do the trick.
In context ↗ - low histamine diet · Helped
only chicken, salmon, brown rice pasta, veggies, some fruit, eggs. I felt like it has helped
In context ↗ - vitamins · Not said
took no pills at all other than vitamins
In context ↗ - melatonin · Not said
Sometimes melatonin, but not sure it helps.
In context ↗ - salt, water and compression · Not said
just use salt, water and compression
In context ↗ - cardiac rehab · Much worse
Then went to cardiac rehab and crashed for several weeks.
In context ↗ - veggie only cleanse / all plants · Not said
I tried a veggie only cleanse for the weekend and could only get through one full day.
In context ↗ - fasting · Not said
started to toy around with fasting and cutting down on chicken
In context ↗ - Culturelle probiotics · Helped
daily Culturelle probiotics. ... For the past few weeks, I’ve had almost daily regular bowel movements.
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2023-05-25 | fourth COVID infection, pushed through it while still illThis was my fourth bout with Covid in 1.5 years.In context ↗ | Mild | |
| 2023-07 | worst stretch: fatigue, insomnia, internal tremors, needing Xanax to get through daysI have to take Xanax just to get through the day.In context ↗ | Moderate | |
| 2023-09 | best sleep yet and family and therapist noticed a positive changeSept: Took .25mg Xanax + Unisom for 2 weeks and had the best sleep and started improving.In context ↗ | Moderate | Alprazolam (Xanax) |
| 2023-11 | crashed after daily errands and cardiac rehabThen went to cardiac rehab and crashed for several weeks.In context ↗ | Moderate | |
| 2023-12-02 | internal vibrations and insomnia returned after a good five-week stretchNow, I'm back to more internal vibrations and insomnia unless I take Xanax and sometimes mixed with Propranolol.In context ↗ | Moderate | |
| 2023-12-30 | gut more regular, fewer tremors, a bit more energy; still insomnia and blood poolingThis also coincides with improving GI stuff (more regular bowel movements), less internal tremors, and a bit more energy at times.In context ↗ | Moderate |
Adverse events
- Propranolol (Inderal)“It makes sleeping harder though because beta blockers lower melatonin.” In context ↗ Insomnia from treatment
- Vagus nerve stimulation“then the calmed down, but now they are back after trying to do vagus nerve stimulation with a Tens unit” In context ↗ Made symptoms worse
- Graded rehab and self-made programmes“Then went to cardiac rehab and crashed for several weeks.” In context ↗ Made symptoms worse
- Low-histamine diet“I went to a low histamine diet and lost too much weight and all my muscle.” In context ↗ Refeeding or deficiency problems
- Low-histamine diet“I’ve lost a ton of weight and muscle mass because of it. Probably caused some GI issues too.” In context ↗ Gut side effects
Symptoms mentioned
Anxiety & low moodBrain fogFlu-like symptomsGut problemsHeart symptoms & palpitationsMast cell (MCAS) & allergiesMuscle weaknessPOTS & dysautonomiaPain & fibromyalgiaPost-exertional malaiseSleep problemsTemperature regulation
Their words about their symptoms
- Sleep problems
For several months, I couldn't sleep without taking Xanax.
In context ↗ - POTS & dysautonomia
My HR is back up over 130 whenever I get up
In context ↗ - Heart symptoms & palpitations
I was up till 4am with internal tremors and racing heart
In context ↗ - Anxiety & low mood
It helps so much to calm the anxiety and rest.
In context ↗ - Post-exertional malaise
I had a few days of good rest where things were looking up and then went to run errands and it got worse.
In context ↗ - Gut problems
Oddly, GI issues started several months in and after the first night of endless diarrhea
In context ↗ - Mast cell (MCAS) & allergies
the vibrations, POTS, MCAS, and everything else made me turn to Xanax
In context ↗ - Muscle weakness
turned into fatigue, muscle soreness, very weak knees
In context ↗ - Brain fog
feeling overwhelmed when I’m trying to concentrate on work tasks
In context ↗ - Flu-like symptoms
A small sore throat, temp of 99.1 for a day, congestion, and soreness.
In context ↗ - Temperature regulation
temp of 99.1 for a day
In context ↗