Headaches and fatigue with ME/CFS, somewhat better with modafinil and N-acetyl cysteine
- Condition
- ME/CFS
- At worst
- Severe (mostly bedbound)
- Ill before improving or writing
- Not stated
- Last post
- Feb 2022
In their words
- Condition: ME/CFS
heard of anyone with cfs ... When I did GET
In context ↗ - At worst: Severe
I sat at the table, never eat, having to hold my head in my hands or rest it on the table because i couldn't support it otherwise. Then sleep until supper and eat.
In context ↗ - Now: Somewhat better
make me a normal person for most of a day ... the pem builds up to the point it nearly cripples me
Read from 10 of their posts and comments; links to the 6 this page draws on
Summary
A Reddit user with CFS had headaches and fatigue. Modafinil, taken for about five years, removed most headaches and fatigue for five to six hours but left them more tired for a day or two afterwards. Graded exercise therapy left them severely unwell for at least nine months, costing a year to 18 months. N-acetyl cysteine slightly reduced fatigue and brain fog; a medication reduced body pain and improved cognitive fatigue until its benefit faded.
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What they tried
What they credit
Their words about each treatment
- modafinil · Helped a lot
its a near miracle drug that removes most of my headaches ... and mostly removes fatigue for 5-6 hours
In context ↗ - N-acetyl cysteine · Helped
i have found N-acetyl cysteine to be somewhat helpful in that is slightly reduces fatigue and mind fog.
In context ↗ - GET · Much worse
after a few weeks I became so unwell ... All told I probably lost a year to 18 months because of GET
In context ↗ - gabapentin · Helped
for me it reduced body pain and improved my cognitive fatigue
In context ↗
Approaches: Stimulants
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. 1 step says too little to place on the scale and is only in the table. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were | After |
|---|---|---|---|
| 2018-08-20 | chronic headaches and fatigue; taking modafinili have the exact same headache as youIn context ↗ | Not stated | |
| — | severely unwell for months after graded exercise therapyafter a few weeks I became so unwell that I would wake up middle to late morning and eat if I could and then sleep until lunchIn context ↗ | Severe | Graded exercise therapy (GET) |
| 2020-07-18 | modafinil removes most headaches and fatigue for most of a dayits a near miracle drug that removes most of my headaches (for some it gives them) and mostly removes fatigue for 5-6 hoursIn context ↗ | Mild | Modafinil / armodafinil |
| 2022-02-09 | still taking modafinil; stopped gabapentin after its benefit fadedI am no longer taking it mainly because the benefits significantly reduced overtime and if I missed a dose it crippled meIn context ↗ | Mild |
Adverse events
- Modafinil / armodafinil“the next 1-2 days though it will increase make me more fatigued than i would have been” In context ↗ Made symptoms worse
- Graded exercise therapy (GET)“When I did GET, after a few weeks I became so unwell that I would wake up middle to late morning and eat if I could and then sleep until lunch.” In context ↗ Made symptoms worse
- Modafinil / armodafinil“after a while the pem builds up to the point it nearly cripples me” In context ↗ Made symptoms worse
Symptoms mentioned
Their words about their symptoms
- Headaches & migraine
i have the exact same headache as you
In context ↗ - Post-exertional malaise
after a while the pem builds up to the point it nearly cripples me
In context ↗ - Brain fog
slightly reduces fatigue and mind fog
In context ↗ - Pain & fibromyalgia
for me it reduced body pain
In context ↗ - Muscle weakness
having to hold my head in my hands or rest it on the table because i couldn't support it otherwise
In context ↗
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