ME/CFS
No benefitIll for 6 years
Brain fog and ADHD with ME/CFS, no improvement after drugs tried
- Condition
- ME/CFS
- At worst
- Not stated
- Ill for
- 6 years
- Last post
- Nov 2024
In their words
- Now: No benefit
My life is really messed up because of the brain fog.
In context ↗ - Says they never had: Headaches & migraine
I have almost never had a headache since I was born.
Summary
A 23-year-old whose brain fog began suddenly at about age 17, with insomnia, acne and POTS-like symptoms, said their life was a mess. Methylphenidate and dopamine-increasing drugs made their ADHD worse; clonazepam, Cymbalta and nortriptyline greatly improved brain fog and ADHD, though Cymbalta stopped working after two months. LDN worked only a few days. They suspected MCAS or a cerebrospinal fluid leak and still sought a diagnosis.
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What they tried
Also tried
Their words about each treatment
- methylphenidate · Worse
ADHD → significantly worsens with methylphenidate
In context ↗ - Clonazepam · Helped a lot
Brain fog → As with ADHD, it is greatly improved by Clonazepam, Cymbalta, and Nortriptyline.
In context ↗ - Cymbalta · Helped a lot
Cymbalta worked perfectly for the first month, but then it stopped working altogether.
In context ↗ - Nortriptyline · Helped
Nortriptyline cannot be used because it extends the QT too much even at the minimum dose (drug hypersensitivity)
In context ↗ - B vitamins · Worse
Taking B vitamins → Tinnitus and fatigue increase. Dry eyes also worsen
In context ↗ - Vitamin C · Worse
Vitamin C → Increased fatigue
In context ↗ - Zinc · Worse
Zinc → make me manic.
In context ↗ - LDN · Helped
LDN → Worked for the first few days, but the effect quickly disappeared
In context ↗ - H1 blockers · No change
However, H1 blockers and H2 blockers have had no effect at all.
In context ↗
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 | After |
|---|---|---|
| age 17 | brain fog began suddenlyBrain fog suddenly started when I was about 17 years oldIn context ↗ | |
| — | brain fog and ADHD greatly improved on clonazepam, Cymbalta and nortriptylineit is greatly improved by Clonazepam, Cymbalta, and NortriptylineIn context ↗ | Clonazepam (Klonopin) |
| 2024-11-13 | still seeking a diagnosis, brain fog continuesMy life is really messed up because of the brain fog.In context ↗ |
Adverse events
- Methylphenidate (Ritalin, Concerta)“ADHD → significantly worsens with methylphenidate.” In context ↗ Made symptoms worse
- Nortriptyline (Pamelor)“Nortriptyline cannot be used because it extends the QT too much even at the minimum dose (drug hypersensitivity)” In context ↗ Heart rhythm problems
- Vitamin B complex“Taking B vitamins → Tinnitus and fatigue increase. Dry eyes also worsen” In context ↗ Made symptoms worse
- Vitamin C“Vitamin C → Increased fatigue” In context ↗ Made symptoms worse
- Zinc“Zinc → make me manic.” In context ↗ Mood or psychiatric effects
Symptoms mentioned
Their words about their symptoms
- Brain fog
My life is really messed up because of the brain fog.
In context ↗ - Sleep problems
insomnia (waking up in the middle of the night)
In context ↗ - POTS & dysautonomia
POTS-like symptoms
In context ↗ - Tinnitus
Taking B vitamins → Tinnitus and fatigue increase.
In context ↗