Lying down most of the day with ME/CFS, now much better after hydroxychloroquine
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Jul 2026
In their words
- Condition: ME/CFS
with enough doctors visits behind me and ME/CFS + POTS diagnosis triple-confirmed
In context ↗ - At worst: Severe
I am attempting to stay as much as possible below my exertion HR of 101, even though any standing shoots up my HR above it. I.e., I am reclining or horizontal most of the day.
In context ↗ - Now: Much better
Plaquenil allowed me to return to work part-time. ... But I am kind of “stuck” now, I.e., no further improvement in the baseline.
- Began after: COVID
I developed chronic vestibular migraine post-COVID, in addition to ME/CFS and POTS.
In context ↗
Read from 35 of their posts and comments; links to the 23 this page draws on
Summary
After COVID they developed ME/CFS, POTS and chronic vestibular migraine; by late 2024 they were lying down most of the day and on disability. Mestinon eased the POTS heart-rate jump and Botox with triptans reduced migraine burden, but hydroxychloroquine gave the biggest gain, ending two years of daily low-grade fevers and allowing a return to part-time work. By early 2026 they had improved but felt stuck at a new baseline.
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What they tried
What they credit
Also tried
Their words about each treatment
- LDN · Helped
Plaquenil and LDN.
In context ↗ - plaquenil · Helped a lot
a few weeks ago, I FINALLY got a meaningful improvement in my overall well-being: PEM, fatigue, brain fog
In context ↗ - pacing · Helped
no meds I’ve tried making any meaningful difference, and pacing being the most helpful
In context ↗ - mestinon · Helped
Mestinon has been the best drug for it after trying half a dozen of others.
In context ↗ - midodrine · No change
most medications I tried (clonidine, midodrine, fludrocortizone, propranolol) lowered my resting hr as well as the standing hr, i.e., didn’t fix the problem of the 50+ bpm increase when standing
In context ↗ - fludrocortizone · Worse
Blurred vision on day 2. Had to stop.
In context ↗ - ketotifen · Helped
It’s helped me a lot with nausea.
In context ↗ - famotidine · No change
I am also taking ketotifen and famotidine for suspected MCAS, but I don’t think they’ve made a huge overall difference.
In context ↗ - droxidopa · Helped
Also diagnosing and treating POTS (mestinon+droxidopa)
In context ↗ - Botox · Helped
only Botox helped to reduce spinning (and light/sound sensitivity)
In context ↗ - vestibular rehab · Helped
Taking care of the migraine (Botox, vestibular rehab, triptans, nurtec) resulted in a meaningful improvement in QOL and PEM severity.
In context ↗ - triptan · Helped
when my PEM coincides with a migraine attack, taking a triptan lessens symptom burden
In context ↗ - Acupuncture · Helped
Acupuncture helped quite a bit (my jaw got locked up and wouldn’t even open).
In context ↗ - Ferrous Gluconate Tablets · Helped
Ferritin levels returned to normal in subsequent tests.
In context ↗ - Visible app with Polar HR monitor · Not said
I am using the Visible app with Polar HR monitor.
In context ↗ - dozens of supplements · No change
I tried dozens of supplements, and none gave any meaningful lift.
In context ↗ - D · Not said
I’ve been on K2, D, B12 for years prior (and continue taking those now) w/o dream issues.
In context ↗ - How To Be Sick book · Helped
I found Toni Bernhard’s “How To Be Sick” book very helpful.
In context ↗ - Zepbound · No change
I’ve titrated to 12.5mg with no weight loss or fatigue improvement.
In context ↗ - LDA · Worse
I couldn’t take LDA because my jaw locked up on day two of the smallest dose.
In context ↗
Approaches: POTS medication · Mind-body practices · Other drugs and medicines · Pacing
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. 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 |
|---|---|---|---|
| — | became ill with ME/CFS and POTS after COVIDI developed chronic vestibular migraine post-COVID, in addition to ME/CFS and POTS.In context ↗ | Not stated | |
| 2024-11 | reclining most of the day, standing spikes heart rate, later went on disabilityI am reclining or horizontal most of the day.In context ↗ | Severe | |
| 2025-01-19 | norovirus then PEMYes. A nightmarish 24 hours, but came out of the subsequent PEM a few days later.In context ↗ | Severe | |
| 2025-09-26 | treating vestibular migraine and POTS lessened symptom burdenTaking care of the migraine (Botox, vestibular rehab, triptans, nurtec) resulted in a meaningful improvement in QOL and PEM severity.In context ↗ | Moderate | |
| 2025-10-22 | meaningful improvement in PEM, fatigue and brain fog on plaquenila few weeks ago, I FINALLY got a meaningful improvement in my overall well-being: PEM, fatigue, brain fogIn context ↗ | Moderate | Hydroxychloroquine / Plaquenil |
| 2026-05-21 | returned to work part-timePlaquenil allowed me to return to work part-time.In context ↗ | Mild | Hydroxychloroquine / Plaquenil |
| 2026-07-31 | still on plaquenil, stuck at a new baselineI’ve been on plaquenil for a year, and it’s been the best drug for my ME/CFS specifically.In context ↗ | Mild | Hydroxychloroquine / Plaquenil |
Adverse events
- Fludrocortisone / Florinef“Blurred vision on day 2. Had to stop.” In context ↗ Side effects
- Mestinon / pyridostigmine“The only medication that lowered the standing hr while not impacting the resting hr was mestinon. But mestinon caused persistent severe eyelid twitch.” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“I couldn’t take LDA because my jaw locked up on day two of the smallest dose.” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
any standing shoots up my HR above it
In context ↗ - Post-exertional malaise
when I get into the ME/CFS PEM, it feels like other meds simply stop working
In context ↗ - Sleep problems
Vivid switching dreams that wake me up 5+ times a night.
In context ↗ - Gut problems
Nausea is a near-constant background symptom
In context ↗ - Headaches & migraine
I developed chronic vestibular migraine post-COVID
In context ↗ - Light & noise sensitivity
Botox helped to reduce spinning (and light/sound sensitivity)
In context ↗ - Temperature regulation
I had a low grade fevers daily for two years. These resolved after a few months on plaquenil.
In context ↗ - Brain fog
meaningful improvement in my overall well-being: PEM, fatigue, brain fog
In context ↗ - Heart symptoms & palpitations
nausea, palpitations, lightheadedness
In context ↗ - Flu-like symptoms
besides the PEM symptoms of flu (fever, aches, sore throat, and fatigue)
In context ↗ - Pain & fibromyalgia
my jaw got locked up and wouldn’t even open
In context ↗
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