ME/CFS with a racing heart and days in bed, somewhat better on ivabradine
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill before improving or writing
- Not stated
- Last post
- Oct 2026
In their words
- Condition: ME/CFS
I was diagnosed in December 2021 with either POTs or IST or possibly both, plus ME.
In context ↗ - At worst: Moderate
Sometimes my partner would come home and I'll I'd managed to do was make it downstairs and sit on the sofa
In context ↗ - Now: Somewhat better
But yeah definitely an improvement in my quality of life!
In context ↗
Read from 10 of their posts and comments; links to the 8 this page draws on
Summary
The user, in the UK, posted in 2020 and was diagnosed in December 2021 with POTS or IST as well as ME. Ivabradine lowered a resting heart rate that had stayed above 100 and they felt less tired. They still woke at 4-5am, had days in bed or on the sofa, and later took duloxetine, which helped at first until only side effects remained.
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What they tried
What they credit
Also tried
Their words about each treatment
- D3 / vitamin D · Helped
Mine were quite low and supplementing helped a lot. I took D3, K2, magnesium and boron. I stopped for a while and noticed I felt worse again.
In context ↗ - K2 · Helped
I took D3, K2, magnesium and boron. I stopped for a while and noticed I felt worse again.
In context ↗ - ivabradine · Helped
I have been put on ivabradine 2.5mg 4 times a day. I have already noticed I'm not as tired
In context ↗ - therapy for cptsd · Not said
When I was having therapy for cptsd my therapist helped me to realise gaming was my down time and a form of self care
In context ↗ - amitriptyline · Helped
I used to be on amitriptyline which did help me sleep better, I'd still wake up but would go back to sleep but I had to keep increasing my dose until I was at the highest and then come off it
In context ↗ - mindfulness / breathing exercises · Not said
I try mindfulness, focusing on my breathing sometimes counting sometimes just telling myself in and out but I'm hopeless at it.
In context ↗ - Visible · Not said
Personally I mostly ignore the morning stability now
In context ↗ - duloxetine · Helped
It helped me to start with but I kept having to go on a higher dosage until all that was left was side effects.
In context ↗
Approaches: POTS medication · Supplements
Their path
They say too little about how ill they were at each step to draw it on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | Where they were | After |
|---|---|---|---|
| — | ME/CFS, later diagnosed alongside POTS or ISTI was diagnosed in December 2021 with either POTs or IST or possibly both, plus ME.In context ↗ | Not stated | |
| February 2022 | ivabradine started, less tiredI have already noticed I'm not as tired although I'm trying not to push myself too much too soon.In context ↗ | Not stated | Ivabradine |
| June 2023 | some days stuck in bed, other days only made it to the sofaSometimes my partner would come home and I'll I'd managed to do was make it downstairs and sit on the sofaIn context ↗ | Severe | |
| October 2026 | duloxetine helped at first, then only side effects as dose roseIt helped me to start with but I kept having to go on a higher dosage until all that was left was side effects.In context ↗ | Not stated |
Adverse events
- Duloxetine (Cymbalta)“It helped me to start with but I kept having to go on a higher dosage until all that was left was side effects” In context ↗ Side effects
- Duloxetine (Cymbalta)“Yeah the withdrawal can happen so quickly it's scary. If I slept too long and was say even 2 hours late it messed me up.” In context ↗ Withdrawal problems
Symptoms mentioned
Their words about their symptoms
- Sleep problems
I'm waking at between 4am and 5am and then unable to get back to sleep
In context ↗ - POTS & dysautonomia
diagnosed in December 2021 with either POTs or IST or possibly both, plus ME
In context ↗ - Heart symptoms & palpitations
my resting hr never went below 100bpm unless I was laid totally flat
In context ↗ - Brain fog
some days I can concentrate better than others
In context ↗ - Anxiety & low mood
So I understand the anxiety around it.
In context ↗
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