Long COVID with dizziness and poor sleep, now nearly normal with time and physical therapy
- Condition
- Long COVID
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- 2 years
- Last post
- Aug 2026
In their words
- Condition: Long COVID
COVID really fucked up my ability to sleep for like 2 full years.
In context ↗ - At worst: Mild
I was severely restless and just felt like I was laying down to fight with my bedding for 6 or 7 hours and then getting up horribly exhausted.
In context ↗ - Now: Near normal
I still get dizzy if I'm in the dark and my eyes can't compensate, and I still get attacks if I don't sleep enough, but otherwise mostly back to a normal life.
In context ↗ - Began after: COVID
I lost my sense of smell completely with the first round of Covid
Read from 9 of their posts and comments; links to the 8 this page draws on
Summary
A woman who developed long COVID after an early infection that cost her her sense of smell, then reinfected, lost sleep for about two years with severe restlessness and physical anxiety. She needed gabapentin, hydroxyzine and cyclobenzaprine to sleep, and H2 blockers gave her tinnitus. She also developed many new allergies. By mid-2026 her BPPV dizziness had mostly eased with physical therapy, though poor sleep could still trigger it, and her sleep was better from time alone.
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What they tried
What they credit
Also tried
Their words about each treatment
- gabapentin · Helped
It works great if you use it only intermittently ... Then for a while I was taking gabapentin every night, which was fairly helpful
- Hydroxyzine · Helped
Hydroxyzine also helps me with anxiety and that restless feeling ... I also had some luck with combining H1 and H2 histamine blockers
- H2 histamine blockers · Helped
I also had some luck with combining H1 and H2 histamine blockers ... the H2 histamine blockers gave me tinnitus as well
In context ↗ - cyclobenzaprine · Not said
At my worst with COVID I'd take hydroxyzine, gabapentin and cyclobenzaprine to get some sleep.
In context ↗ - supplemental estrogen · Worse
going on supplemental estrogen for vulvodynia made all my allergies drastically (and unfortunately it looks like permanently) worse
In context ↗ - COVID vaccine · Helped
I lost my sense of smell completely with the first round of Covid and I actually got some of it back after my first vaccine.
In context ↗ - Singular · Worse
I did get vivid dreams when I was on Singular for asthma though ... It also made me hostile.
In context ↗ - physical therapy · Helped
I did some physical therapy for it, which helped, and it slowly went away.
In context ↗ - medication from a compounding pharmacy (name not given) · Not said
I ended up having to get the equivalent of 60% of a tablet from a compounding pharmacy to get something that wouldn't make my blood pressure dangerously low but was also enough to work.
In context ↗ - time · Helped
COVID really fucked up my ability to sleep for like 2 full years. Now it's better. All that happened was time.
In context ↗
Approaches: Physiotherapy and rehab
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, in the order they describe; they don’t give enough times to place each step. Hover or tap a point. 2 steps say too little to place on the scale and are only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | First COVID infection; lost her sense of smellI lost my sense of smell completely with the first round of Covid and I actually got some of it back after my first vaccine.In context ↗ | Not stated | |
| — | Severe restlessness and sleeplessness at the worst of COVIDAt my worst with COVID I'd take hydroxyzine, gabapentin and cyclobenzaprine to get some sleep.In context ↗ | Mild | |
| — | Reinfected with COVID; restlessness and physical anxiety returnedBut then I got covid again some years later, and the brain bees kicked in again and continued for about 2 years.In context ↗ | Not stated | |
| 2026-06-21 | Vertigo (BPPV) treated with physical therapy; mostly back to a normal lifeI did some physical therapy for it, which helped, and it slowly went away ... but otherwise mostly back to a normal life.In context ↗ | Near normal | |
| 2026-08-06 | Sleep better after about two years, with time aloneCOVID really fucked up my ability to sleep for like 2 full years. Now it's better. All that happened was time.In context ↗ | Near normal | Time and spontaneous remission |
Adverse events
- Estrogen (estradiol)“going on supplemental estrogen for vulvodynia made all my allergies drastically (and unfortunately it looks like permanently) worse” In context ↗ Allergic reaction / anaphylaxis
- Estrogen (estradiol)“it exacerbates my hypermobility and I got a persistent injury” In context ↗ Other
- “I ended up having to get the equivalent of 60% of a tablet from a compounding pharmacy to get something that wouldn't make my blood pressure dangerously low but was also enough to work.” In context ↗ Low blood pressure or fainting
- H2 blockers (unspecified)“anything that affects my stomach acid also affects my hearing, so the H2 histamine blockers gave me tinnitus as well.” In context ↗ Side effects
- Gabapentin (Neurontin)“Then for a while I was taking gabapentin every night, which was fairly helpful ... but it's giving me pretty serious short-term memory problems.” In context ↗ Side effects
- Montelukast / Singulair“I did get vivid dreams when I was on Singular for asthma though, and it was a sign of severely disrupted sleep.” In context ↗ Insomnia from treatment
- Montelukast / Singulair“It also made me hostile.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Loss of smell or taste
I lost my sense of smell completely with the first round of Covid and I actually got some of it back after my first vaccine.
In context ↗ - Mast cell (MCAS) & allergies
COVID has given me an allergy to guar gum, clams, sardines, nickel, tree nuts, all hair conditioner, worse reactions to fragrances.
In context ↗ - Sleep problems
COVID really fucked up my ability to sleep for like 2 full years. Now it's better.
In context ↗ - Anxiety & low mood
my physical anxiety switch was stuck on all the time
In context ↗ - POTS & dysautonomia
I still get dizzy if I'm in the dark and my eyes can't compensate
In context ↗ - Tinnitus
anything that affects my stomach acid also affects my hearing, so the H2 histamine blockers gave me tinnitus as well
In context ↗ - Brain fog
it's giving me pretty serious short-term memory problems
In context ↗ - Gut problems
make me feel bloated or make my mouth itchy or give me stomach cramps or fatigue
In context ↗
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