ME/CFS
Moderate → no benefitIll for 10 yearsNeeds ongoing treatment
Years of ME/CFS exhaustion and 14 hours' sleep, still needing Adderall each morning
- Condition
- ME/CFS
- At worst
- Moderate (mostly housebound)
- Ill for
- 10 years
- Last post
- Sep 2015
In their words
- Condition: ME/CFS
How did you get diagnosed with CFS? ... i have been fighting this for the better part of a decade
In context ↗ - At worst: Moderate
it is a debilitating need 14 hours of sleep a day tired
In context ↗ - Now: No benefit
without that JumpStart at 5 am, I can't even think about rolling out of bed at 7
In context ↗
Read from 4 of their posts and comments; links to the 4 this page draws on
Summary
Kite 42469 had years of debilitating exhaustion, needing 14 hours of sleep a day, and was diagnosed with excessive daytime sleepiness in 2005-6. Modafinil helped for about three years until cost ended it; she switched to Adderall, which got her out of bed but made her grouchy and was easy to depend on. A later modafinil retry caused facial swelling, and she was allergic to nuvigil. By September 2015 she still needed Adderall each morning to get up.
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What they tried
Their words about each treatment
- provigil · Helped
I took it for a while about a decade ago and had an OK experience with it. Switched to adderal because of the cost difference.
In context ↗ - adderall · Helped
I take adderall. Unfortunately, it is easy to become dependent on, or for it to lose its effectiveness.
In context ↗ - nuvigil · Worse
I am allergic to nuvigil. Lol.I had one helluva crazy crazy VACATION weekend the day I started taking it.
In context ↗ - claratin · Not said
I doped up on a combo of claratin, sudafed, an my trusty adderall, and went to navy pier.
In context ↗
Their path
How ill they were on the ME/CFS severity scale, estimated from what they describe at each point, with time counted from when the illness began. Hover or tap a point. Dates are when they posted. What the levels mean.
Show as a table
| When | What happened | Where they were |
|---|---|---|
| 2005-6 | diagnosed with excessive daytime sleepiness after years of exhaustion; put on provigil then AdderallI am always exhausted, and am missing out on my son's early years because of it.In context ↗ | Moderate |
| about 2013 | allergic reaction after trying to switch back to modafinil; face swelled upmy face was so swollen I could barely see out of one eyeIn context ↗ | Moderate |
| 2015-09-16 | still dependent on Adderall each morning; exhausted, body defaults to sleepwithout that JumpStart at 5 am, I can't even think about rolling out of bed at 7In context ↗ | Moderate |
Adverse events
- Amphetamine salts (Adderall)“My hubby says it makes me grouchy, and i know it does” In context ↗ Mood or psychiatric effects
- Modafinil / armodafinil“I tried to switch back, and WOW did I have an allergic reaction to it. ... my face was so swollen I could barely see out of one eye” In context ↗ Allergic reaction / anaphylaxis
- Modafinil / armodafinil“I am allergic to nuvigil. ... I had one helluva crazy crazy VACATION weekend the day I started taking it” In context ↗ Allergic reaction / anaphylaxis
Symptoms mentioned
Their words about their symptoms
- Sleep problems
it is a debilitating need 14 hours of sleep a day tired
In context ↗