ME/CFS with stimulants no longer working by their 30s, now somewhat better on midodrine
- Condition
- ME/CFS
- At worst
- Mild (working or studying, with limits)
- Ill before improving or writing
- Not stated
- Last post
- Dec 2022
In their words
- Condition: ME/CFS
Like most treatments for CFS it would requre trial and error
In context ↗ - At worst: Mild
Dexedrine (different amphetamine) worked for me in college, it got me the degree.
In context ↗ - Now: Somewhat better
I'm maybe at 70-75% function?
In context ↗
Read from 8 of their posts and comments; links to the 6 this page draws on
Summary
Crane 62856 had CFS; stimulants helped them in high school and college, including earning a degree, but stopped working by their 30s. Midodrine made the biggest difference, alongside MigRelief for migraines, mitochondrial supplements, neck physiotherapy and a diet avoiding dairy, coffee and oats. In September 2022 they rated themselves at 70-75% of normal function, still working in research but limited to gentle activity.
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What they tried
What they credit
Also tried
Their words about each treatment
- MigRelief supplement · Helped a lot
Have you tried the MigRelief supplement? It was a gamr changer for me. I still sometimes get a migraine but they are waaaaaaaay less intense and much less frequent.
In context ↗ - Dexedrine · Helped a lot
Dexedrine (different amphetamine) worked for me in college, it got me the degree.
In context ↗ - midodrine · Helped a lot
What made the biggest difference now is a med to raise my blood pressure (midodrine)
In context ↗ - PT for my neck · Not said
including PT for my neck
In context ↗ - zero dairy and coffee, very limited oats · Not said
zero dairy and coffee (caffeine isn't an issue, turns out I an intolerant of coffee itself), very limited oats
In context ↗ - Niagen · Not said
I also recently started a supplement called Niagen, which increases production of NADH+, which boosts mitochondrial efficiency and thus gives you more energy.
In context ↗ - focus on resting while being up and dressed · Helped
it helps me to focus on resting while being up and dressed
In context ↗
Approaches: POTS medication
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. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| — | CFS during school and college years; a stimulant helped them through a degreeDexedrine (different amphetamine) worked for me in college, it got me the degree.In context ↗ | Mild | |
| 2022-09-21 | Midodrine plus supplements, neck PT and diet changes; about 70-75% of normal functionWhat made the biggest difference now is a med to raise my blood pressure (midodrine)In context ↗ | Mild | Midodrine |
| 2022-12-12 | Still scraping by, limited to restorative yoga and chores; recently started Niagenthis is the level of activity I tolerateIn context ↗ | Mild |
Adverse events
- Dexamfetamine (Dexedrine)“I had to go strictly caffeine free while on it or the anxiety was killer.” In context ↗ Mood or psychiatric effects
- “it turns your pee BRIGHT yellow-green, looks like Gatorade” In context ↗ Side effects
- “I gained 20 pounds in a month due to a prescription” In context ↗ Side effects
Symptoms mentioned
Their words about their symptoms
- Headaches & migraine
I still sometimes get a migraine but they are waaaaaaaay less intense and much less frequent.
In context ↗ - Anxiety & low mood
I had to go strictly caffeine free while on it or the anxiety was killer.
In context ↗
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