ME/CFS
Moderate → no benefit
ME/CFS with dysautonomia, in bed and still needing a carer after beta-blocker titration
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- years
- Last post
- Jan 2024
In their words
- Condition: ME/CFS
I was diagnosed with ME/CFS with dysautonomia officially.
In context ↗ - At worst: Moderate
There was no way I could carry on working so I gave up the dream I’d held since I was a kid
In context ↗ - Now: No benefit
I have since been on a downward spiral of symptoms
In context ↗ - Began after: stress or burnout
I'm an ex-actress who got sick at 23, not with covid, but with what I suspect were vagus nerve issues related to trauma and/or addiction
In context ↗
Summary
Gull 32056 fell ill at 23 with intractable migraine, dysautonomia and fatigue, which she suspected were vagus nerve issues related to trauma and/or addiction, and gave up her acting career. Two COVID infections left her worse and she was diagnosed with ME/CFS with dysautonomia. After starting dexamphetamine in December 2022, she had her first PEM in January 2023, and a beta-blocker titration put her in bed, starting a downward spiral. By January 2024 she still needed a carer and home help.
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What they tried
Their words about each treatment
- meditation · Helped
45 min per day completely readjusted my nervous system. Mind-blowing!
In context ↗ - dexamphetamine · Worse
My instinct is the stimulants are a trigger but I’m soooo tired all the time
In context ↗ - propanolol · Worse
The fatigue from the propanolol titration put me in bed
In context ↗
Their path
What they say at each step doesn’t fit the worst point or outcome above on the severity scale, so the steps are listed as they describe them. Dates are when they posted.
| When | What happened | After |
|---|---|---|
| age 23 | fell ill with intractable migraine, dysautonomia and fatigue; gave up acting careerI'm an ex-actress who got sick at 23, not with covid, but with what I suspect were vagus nerve issues related to trauma and/or addictionIn context ↗ | |
| — | two COVID infections, went downhill againI got covid twice and shit went downhill again.In context ↗ | |
| January 2023 | first PEM after starting dexamphetamineIn Jan I started experiencing PEM for the first time.In context ↗ | Dexamfetamine (Dexedrine) |
| — | beta-blocker titration put her in bed, then a downward spiral of symptomsThe fatigue from the propanolol titration put me in bed (again, for the first time).In context ↗ | Propranolol (Inderal) |
| 2024-01-18 | still needs a carer, hired home help, positive about the futureI need a carer too but at what cost? ... I've recently employed some home help to support us both, despite having no earnings of my own, and I'm feeling positive about the future.In context ↗ |
Adverse events
- Propranolol (Inderal)“The fatigue from the propanolol titration put me in bed (again, for the first time).” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Post-exertional malaise
In Jan I started experiencing PEM for the first time.
In context ↗ - POTS & dysautonomia
I was diagnosed with ME/CFS with dysautonomia officially.
In context ↗ - Headaches & migraine
intractable chronic migraine, dysautonomia, fatigue
In context ↗