Barely able to get out of bed with long COVID, now semi-normal on propranolol, midodrine
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 15 months
- Last post
- Mar 2025
In their words
- Condition: Long COVID
I've had every LH symptom you can think of
In context ↗ - At worst: Severe
In the beginning I could barely get out of bed, couldnt sleep or eat, feeling like I was going to pass out whenever I stood up.
In context ↗ - Now: Much better
I’ve definitely gotten “better” but it has ups and downs. ... Since I started taking medication for POTS (propranolol + midodrine) I’m able to have at least a semi normal life, even if I dont feel great.
In context ↗ - Began after: COVID
I had covid in january 21
Read from 26 of their posts and comments; links to the 15 this page draws on
Summary
Fjord 64962 got COVID in January 2021 with only loss of taste and smell, and later developed long COVID with being barely able to get out of bed, unable to sleep or eat, and near-fainting when upright. POTS diagnosed in March 2022 resolved by that Easter; vestibular therapy and self-directed exercise helped, and propranolol with midodrine later allowed a semi-normal life. Brain fog, visual and balance symptoms persisted, and a vaccine made things much worse.
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What they tried
What they credit
Also tried
Their words about each treatment
- vestibular physical therapy · Helped
I have been doing vestibular physical therapy for about 12 weeks with huge improvement, though definitely not 100%
In context ↗ - blue light glasses · Helped
For a few months I was wearing blue light glasses which were helpful but I felt like my eyes were becoming dependent on them.
In context ↗ - forcing myself to exercise · Helped
Oddly enough I believe forcing myself to exercise was the thing that helped the most.
In context ↗ - edible marijuana · Helped
I found edible marijuana was really helpful with my symptoms but then I couldnt tell if it was because I was getting wasted every night. I had to back off.
In context ↗ - compression gear · Not said
The last 3 days, with no medication and no compression gear I have been able to stand for greater than 20 minutes without my heart rate elevating at all.
In context ↗ - amitriptyline · Helped a lot
10mg of amitriptyline did wonders for my nerve pain
In context ↗ - propranolol · Helped
Since I started taking medication for POTS (propranolol + midodrine) I’m able to have at least a semi normal life, even if I dont feel great.
In context ↗ - sleep mask · Helped
Sleep mask, weighted blanket, white noise machine, reishi tea, magnesium bath, eliminating blue light two hours before bed.
In context ↗ - green tea · Helped
I switched to green tea. If you double up the bags its still decently caffeinated but doesnt wreck me like coffee does
In context ↗ - the vaccine · Much worse
then got the vaccine bc I had read on here that it might help. It made things much worse.
In context ↗
Approaches: POTS medication · Beta-blockers · Exercise and activity
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 |
|---|---|---|---|
| January 2021 | COVID-19 infectionI had covid in january 21, had loss of taste and smell with no other symptomsIn context ↗ | Mild | |
| early 2021 | bedbound, not sleeping or eating, near-fainting on standingIn the beginning I could barely get out of bed, couldnt sleep or eat, feeling like I was going to pass out whenever I stood upIn context ↗ | Severe | |
| August 2021 | visual symptoms beganStretching back to August of last year I've been dealing with light sensitivity, visual snow, floatersIn context ↗ | Severe | |
| January 2022 | POTS symptoms beganI also started having PoTS symptoms in january, officially diagnosed in marchIn context ↗ | Moderate | |
| April 2022 | POTS easing, vestibular therapy helpingwith no medication and no compression gear I have been able to stand for greater than 20 minutes without my heart rate elevating at allIn context ↗ | Moderate | |
| May 2022 | back to lifting and cardio 3-4x a weekI’m back to lifting and doing cardio 3-4x a weekIn context ↗ | Mild | Everyday exercise and activity |
| June 2022 | pre-syncope returnedfor several weeks I was completely rid of this, but last friday it started back up again randomlyIn context ↗ | Mild | |
| June 2024 | POTS medication gave a semi-normal lifeSince I started taking medication for POTS (propranolol + midodrine) I’m able to have at least a semi normal life, even if I dont feel greatIn context ↗ | Mild | Propranolol (Inderal) |
Adverse events
- COVID vaccination as treatment“then got the vaccine bc I had read on here that it might help. It made things much worse.” In context ↗ Made symptoms worse
- Midodrine“It does make me cold and give me the skin tingle but its not flulike.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
when it came to the fatigue that was definitely true in the beginning
In context ↗ - Brain fog
I still deal with pretty severe brain fog/ depersonalization but it hasnt stopped me from exercising
In context ↗ - POTS & dysautonomia
POTS (now resolved)
In context ↗ - Vision problems
light sensitivity, visual snow, floaters
In context ↗ - Light & noise sensitivity
I've been dealing with light sensitivity
In context ↗ - Sleep problems
couldnt sleep or eat
In context ↗ - Breathlessness
I also dealt with chest pain and sob. Both of which have pretty much resolved
In context ↗ - Heart symptoms & palpitations
when I stand my heart rate does not jump into the 120s/130s like it did a few months ago
In context ↗ - Muscle weakness
lower extremity weakness (not as bad as it was earlier this year but comes and goes)
In context ↗ - Neuropathy & tingling
10mg of amitriptyline did wonders for my nerve pain
In context ↗ - Loss of smell or taste
had loss of taste and smell with no other symptoms
In context ↗
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