Largely bedridden with ME/CFS, now somewhat better with ivabradine and low-dose Abilify
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- 3 years
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
Fortunately I found a new neurologist- who diagnosed me with me/cfs and treats me accordingly.
In context ↗ - At worst: Severe
i am severe. can only leave my bed for going to the toilet.
In context ↗ - Now: Somewhat better
I also slowly but steadily crawling myself out of being bedridden - I can sit for up to 15 minutes!!
In context ↗ - Began after: COVID
Got Covid in January 2024 for the first time - never got well again.
In context ↗
Read from 27 of their posts and comments; links to the 17 this page draws on
Summary
Horizon 36926 developed ME/CFS after a mild COVID infection in January 2024, with fatigue that never went away and POTS. Told by a neurologist to push through, they fell from moderate to largely bedridden by early 2025 after a panic attack. Increased ivabradine controlled their POTS; low-dose Abilify, started very slowly, gave side effects and slight gains. By late 2026 they could sit up 15 minutes and shower again.
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What they tried
What they credit
Also tried
Their words about each treatment
- Ivabradine · Helped
she increased my Ivabradine and for the first time my POTS is under control. It is so great and makes everything easier.
In context ↗ - Pacing · No change
I have a hard time pacing, so I don’t see any improvement of my fatigue or baseline
In context ↗ - LDA · Helped
it gave me soooo much energy, my sensitivities got a lot less and my brainfog was also a lot less
In context ↗ - Quviviq · Helped
It worked good for me but I had a huge drug interaction with LDA. Had to stop Quviviq.
In context ↗ - xanax · Helped
normally it calms me - 0,5mg is usually enough
In context ↗ - Hydroxyzine · No change
also Hydroxyzine 25mg. it did nearly nothing.
In context ↗ - Diphenhydramine · Helped
medication that usually helps, does nearly nothing
In context ↗ - melatonin · Not said
i take diphenhydramine 100mg and melatonin
In context ↗ - Trazodone · Helped
Trazodone doesnt help me to fall asleep but 50mg before bedtime help to keep me asleep
In context ↗ - sertraline · Not said
i already take sertraline
In context ↗ - beta blockers · Worse
I didn‘t do well on beta blockers because I have a very low bp.
In context ↗ - meditation · No change
meditation also doesn’t work right now
In context ↗ - aggressive rest · Not said
I was able to aggressive rest for 40min straight!
In context ↗ - therapy · Not said
I had to stop therapy because I can’t talk more than 10 minutes
In context ↗ - notebook to track my symptoms · Helped
A week ago I bought a notebook to track my symptoms better. It helps me to ask myself how I‘m feeling
In context ↗ - abm blackout mask · Helped
Switching to only hearing something with abm blackout mask has helped a bit.
In context ↗ - fever-reducing painkillers · Not said
Mx heart rate goes crazy if I have a fever and so it is really important for me to take fever-reducing painkillers.
In context ↗
Approaches: Other drugs and medicines
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. The chart starts 9 months after onset: the story doesn’t say how ill they were before that. 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 |
|---|---|---|---|
| January 2024 | mild COVID infection, never recoveredGot Covid in January 2024 for the first time - never got well again.In context ↗ | Not stated | |
| first months after infection, 2024 | partial improvement during the first monthsit got better the first monthsIn context ↗ | Not stated | |
| 2024 | deteriorated after repeatedly overexerting on the neurologist's adviceI deteriorated over those months and when I got the diagnosis from my new doctor - it was kind of too late to learn pacingIn context ↗ | Moderate | |
| December 2024 | higher ivabradine brought POTS under control, fatigue unchangedshe increased my Ivabradine and for the first time my POTS is under control. It is so great and makes everything easier.In context ↗ | Moderate | |
| January 2025 | fell from moderate to severe after a bad panic attackI was moderate with day of severeness until beginning of January and after getting a bad panic attack I can’t watch tv anymoreIn context ↗ | Severe | |
| March 2025 | severe and slowly worseningI‘m severe and that I keep getting slightly worseIn context ↗ | Severe | |
| April 2025 | first slight improvement after very low-dose Abilifyi reached the steady state (15 days) of my new dosis 0,04mg on Wednesday and experience(d) slight side effects (a lot of hunger) and felt a little better for the first timeIn context ↗ | Severe | Low-dose Abilify / aripiprazole |
| September to October 2026 | slowly crawling out of being bedridden; showered for the first time since January 2025I also slowly but steadily crawling myself out of being bedridden - I can sit for up to 15 minutes!!In context ↗ | Severe |
Adverse events
- “I must go over my boundaries to get better ... Yeah, now I’m worse that at the beginning.” In context ↗ Made symptoms worse
- Low-dose Abilify / aripiprazole“I had really bad vertigo, felt like I was floating a bit outside my body ... nausea and a headache.” In context ↗ Side effects
- Low-dose Abilify / aripiprazole“had bad insomnia at 0,25mg lda. stopped after 3 days of taking it.” In context ↗ Insomnia from treatment
- Low-dose Abilify / aripiprazole“experience(d) slight side effects (a lot of hunger)” In context ↗ Side effects
- Daridorexant (Quviviq), Low-dose Abilify / aripiprazole“It worked good for me but I had a huge drug interaction with LDA. Had to stop Quviviq.” In context ↗ Side effects
- Trazodone (Desyrel)“Unfortunately I didn’t tolerate Trazodone when I tried it a few months ago.” In context ↗ Side effects
- Beta-blockers (unspecified)“I didn‘t do well on beta blockers because I have a very low bp.” In context ↗ Low blood pressure or fainting
- Radical rest“I can’t aggressively rest to get better because I get really anxious and if I don’t stop I get panic attacks.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
Got a little PEM from it but this is a huge accomplishment for me.
In context ↗ - POTS & dysautonomia
Have pots, (unfortunately) only found a neurologist who said that my fatigue was just a result of pots
In context ↗ - Brain fog
my sensitivities got a lot less and my brainfog was also a lot less
In context ↗ - Sleep problems
since then i cannot fall asleep for 5 hours even though i take diphenhydramine 100mg and melatonin
In context ↗ - Anxiety & low mood
I get panic attacks so often, after not having them in years.
In context ↗ - Light & noise sensitivity
my sensitivities got a lot less
In context ↗ - Heart symptoms & palpitations
now I can go to the toilet or get a snack without feeling like I‘m dying because my heart is jumping out of my chest
In context ↗ - Pain & fibromyalgia
I have a somatoforme pain disorder and in order to function (school, work etc) I had to go through the pain.
In context ↗
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