My daughter handwrote her symptoms when she tried to go up to 1/2 of the .1 mg Florinef pill:
"Took pill Wed 2 weeks ago (in morning)
Afternoon - got very depressed
Early eve - drugged tired
Early eve - BP higher than normal
Thurs morn - drugged tired. After that, no more drugged tired, unlike B12 (shot) which lasted 1 wk
Main things I noticed that were SO different from my usual after that:
Seemed to, once stopped cognitive overexertion on Saturday, get kicked out of the wired state that has dominated the CFS experience since FCE (Functional Capacity Testing), and more and more as have gotten more sick. For at least the last several months, I have been wired all day every day almost. BUT suddenly didn't experience wired state. Was like going back in time in illness to before FCE - instead of wired I was exhausted, strong flu-like symptoms, strange allergy symptoms. Normally don't sleep during day at all + struggle to sleep at night - suddenly was sleeping for hours during the day in addition to at night. Not depression style sleeping, CFS sleep where each sleep like falling unconscious, hard to describe this effect because less + less as more time passed since the pill (and all weird effects lessened). By this past Fri starting during stressful pre-dinner thing, started for first time to feel slightly wired. Went back into full blown wiredness this Monday night. During time period post-pill body was more like "you CANNOT do this. STOP IMMEDIATELY" w/all cognitive/physical/etc. overexertion compared to when in wired state it feels horrible when you overexert. So so horrible but can keep going and pay later.
My interpretation: Something about my body's response to the pill (not pill's intended effect) knocked me out of wired state and the over-exertions of past few months started catching up to me! Vastly more limited physically & cognitively & emotionally & sensorily, which I believe is the true state of where I'm at I just can't feel it b/c I'm so wired usually. Although felt bad, I loved being in this state b/c didn't have the emotional haywire effect that accompanies wired state and I was able to take care of myself much better than usual b/c felt how my body actually feels. In that state of not being wired I think I have a chance of healing. Devastated to go back into wired state this Monday.
Another interpretation: Pill was very bad overexertion to body and got tired b/c body trying really hard to recover from the pill and actually felt worse and had less capacity b/c pill hurt me (or body's response to pill) and not b/c past over-exertions catching up to me
There are many other interpretations. I don't understand it! I expect I will have similar thing happen w/other meds. Could this be MCA and the MCA has an unintended good effect of taking me out of wired state (not to minimize the accompanying depression, which was VERY bad I'm blocking it out). If not MCA, what is happening?
I'm very eager (although always frightened of course too) to move forward w/ trying things. Florinef 1/4 (of .1 mg) not helping, want to get off if not planning to increase in near future."
Any thoughts or advice about whether she should try to increase again (will the bad parts of the side effects go away?) or just abandon the endeavor and try something else?
