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ME/CFS Mild → somewhat better

24/7 migraines, brain fog and fatigue, now somewhat better with low-dose guanfacine

Condition
ME/CFS
At worst
Mild (working or studying, with limits)
Ill before improving or writing
Not stated
Last post
Jul 2023
In their words
  • Condition: ME/CFSthat I believe causes my chronic fatigue In context ↗
  • At worst: MildI can concentrate better, I’m more able to do things, such as yard work, without being a zombie In context ↗
  • Now: Somewhat betterI’ve only been on guanfacine for a few weeks, but the it’s going absolutely splendidly. In context ↗
Read from 2 of their posts and comments; links to the 2 this page draws on

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Summary

An r/cfs user described a CFS-like illness with 24/7 migraines, brain fog and fatigue, and thought raised intracranial pressure caused their chronic fatigue. Prednisone eased the head pressure for a few days. Stimulants worsened brain fog, atomoxetine caused near-fainting, bupropion helped fatigue but gave them tinnitus, and low-dose guanfacine, started a few weeks before their last post, improved concentration and let them do yard work.

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What they tried

What they credit

Their words about each treatment
  • prednisone · HelpedI could feel the reaction of the prednisone decreasing inflammation of something in my brain, which caused the headaches to stop for the most part for a few days In context ↗
  • bupropion · HelpedBupropion worked well for my fatigue. I wish I could still take it, but it gives me tinnitus In context ↗
  • atomoxetine · WorseAtomoxetine causes extreme lightheadedness, so I’d almost faint every time I’d stand up or even move In context ↗
  • adderall, vyvanse · WorseThe stimulants made my brain fog worse. They helped with my fatigue for the first two hours after I took them, but they would then cause me to crash very hard In context ↗
  • guanfacine · HelpedI’ve only been on guanfacine for a few weeks, but the it’s going absolutely splendidly. I can concentrate better, I’m more able to do things, such as yard work, without being a zombie In context ↗
  • ibuprofen · WorseSince I have high brain pressure, ibuprofen exacerbates this condition and makes my headaches and other symptoms worse In context ↗
  • triptans · WorseThis is true for other medications for me, such as triptans In context ↗

Approaches: Other drugs and medicines

Their path

Very severeSevereModerateMildNear normalRecovered

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
WhenWhat happenedWhere they wereAfter
—24/7 migraines with tight head pressure, brain fog and chronic fatigueI have 24/7 migraines that give me a very tight pressure feeling in my head that oscillates in intensity throughout the day In context ↗Mild
—prednisone cycle from an emergency room visit eased head pressure and stopped headaches for a few dayswhich caused the headaches to stop for the most part for a few days In context ↗Not statedCorticosteroid pulses
2023-07-06low-dose guanfacine improved concentration and ability to do yard workI can concentrate better, I’m more able to do things, such as yard work, without being a zombie In context ↗MildGuanfacine

Adverse events

Symptoms mentioned

Their words about their symptoms
  • Headaches & migraineI have 24/7 migraines that give me a very tight pressure feeling in my head that oscillates in intensity throughout the day In context ↗
  • Brain fogThe stimulants made my brain fog worse. In context ↗
  • TinnitusI wish I could still take it, but it gives me tinnitus In context ↗

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