Bedridden at times with long COVID and POTS, somewhat better on a 4 mg medication
- Condition
- Long COVID
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Mar 2025
In their words
- Condition: Long COVID
long covid, migraines, hEDS, ME/CFS to name a few
In context ↗ - At worst: Severe
at the lowest dose i had some relief, but only enough that it made being bedridden a bit less miserable
In context ↗ - Now: Somewhat better
i’m doing well on it now at 4mg
In context ↗
Read from 9 of their posts and comments; links to the 9 this page draws on
Summary
With long COVID and ME/CFS, Fjord 23951 had POTS and migraines; they were bedridden at times and, during a medication reaction, needed a rollator. One medication gave slight relief but caused four months of muscle spasms, weakness and lingering migraine aura. Mirtazapine briefly eased gut symptoms but caused 35 lb weight gain and then worsened GI symptoms. By March 2025 they were doing well on a medication at 4 mg.
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What they tried
What they credit
Also tried
Their words about each treatment
- vision therapy / rehab exercises · Helped a lot
vision therapy gave me my life back after repeated TBIs
In context ↗ - mirtazapine · Worse
i found small improvements with my abdominal pain & constipation at first, but i was so hungry all the time that it flared my gastroparesis and ended up making things worse again
In context ↗ - controlled diet · Not said
which made it difficult to stick with my controlled diet
In context ↗ - mestinon · Much worse
i did and it made me much worse, but i’m on ten other meds and had rare reactions to it
In context ↗ - surgery · Helped
my surgery prompted me to actually take my ME seriously ... i benefited from the bed rest
In context ↗ - trauma therapy · Helped
trauma therapy did help indirectly with CFS
In context ↗ - sertraline and duloxetine · Worse
i’ve had the same problem with sertraline and duloxetine - it’s excruciating
In context ↗ - LDN · Helped
i’m doing well on it now at 4mg
In context ↗ - CBT and psychotherapy · Worse
even biweekly virtual appointments make me too sick
In context ↗
Approaches: Trauma & somatic work
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. The line stops at their last step that can be placed; how they are now is in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| onset | long COVID after COVID infectioni’ve had to deal with this first from brain injuries and now again from LCIn context ↗ | Not stated | |
| 2024-06-05 | bedridden, could not walk without a rollatorin that time i couldn’t walk without a rollator to catch me if i fellIn context ↗ | Severe | |
| 2024-07-24 | trauma therapy for C-PTSD let them slow down and control some symptomstreating my C-PTSD allowed me to acknowledge my suffering and slow down, which in turn helps control some of my symptomsIn context ↗ | Severe | |
| 2025-03-03 | doing well on low-dose naltrexone at 4 mgi’m doing well on it now at 4mgIn context ↗ | Not stated | Low-dose naltrexone |
Adverse events
- Mestinon / pyridostigmine“i did and it made me much worse” In context ↗ Made symptoms worse
- Mestinon / pyridostigmine“starting on the lowest dose i had muscle spasms and weakness in my arms and legs, along with blurred vision and migraine aura” In context ↗ Side effects
- Mestinon / pyridostigmine“intermittent abdominal convulsions/jerks too, which interrupted my sleep” In context ↗ Insomnia from treatment
- Mestinon / pyridostigmine“i couldn’t walk without a rollator to catch me if i fell” In context ↗ Made symptoms worse
- Mirtazapine (Remeron)“made me hungry all of the time ... i gained 35lbs in the first two months at 7.5mg/day” In context ↗ Side effects
- Mirtazapine (Remeron)“i was so hungry all the time that it flared my gastroparesis and ended up making things worse again” In context ↗ Gut side effects
- CBT and psychotherapy“even biweekly virtual appointments make me too sick” In context ↗ Made symptoms worse
- Sertraline (Zoloft), Duloxetine (Cymbalta)“i’ve had the same problem with sertraline and duloxetine - it’s excruciating” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- POTS & dysautonomia
it did not make a significant enough difference in my POTS symptoms either
In context ↗ - Vision problems
along with blurred vision and migraine aura (which i hadn’t had before with my migraines, and has lingered since)
In context ↗ - Gut problems
i found small improvements with my abdominal pain & constipation at first
In context ↗ - Post-exertional malaise
i’m currently on pause from trauma therapy because even biweekly virtual appointments make me too sick
In context ↗
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