What happened around the time it stopped working? Did you notice any crash, did you have a particular exertion, etc.?
I did not crash, it just fizzled out. Within the span of a week i started to regress to baseline.
How quickly did you get to your peak dosage, what dosages did you go with (eg 2 weeks 0.25 mg, 2 weeks 0.5, etc).
I just started at 1mg. No ramp up. I took two breaks from it after it stopped working to see if i can get it to work again. First break was three months and the next one was six months. The next two times I tried different doses. The last one I ramped up very slowly (used the liquid format and started at 0.1mg). But it just never worked again.
How quickly did you increase your exertion when you noticed benefits?
Slowly.
Are you back to the exactly same baseline (ie housebound/mostly bedbound?)? I'm not exactly sure what your level of function was as you said housebound but then you said unable to shower, which makes me think more on the bedbound level. Do you maybe have an estimate number based on the CFIDS Scale? Eg 10? 20?
I am back to baseline. I can shower with a shower chair once in two weeks. I really dont know where I stand in terms of moderate-severe. I'm not as bad as Whitney Dafoe but im worse than most moderates. But after quitting abilify and my subsequent unsuccessful attempts at getting it to work again I am back to the hell I was before.
Sorry I dont have an estimate of my CFID.
I highly recommend the facebook group on low dose abilify for ME/CFS. There is a ton of information there.
My feeling (completely subjective) is that you can break down the people and the response to abilify to the following groups:
Group 1: respond well but it stops working after a few months (most of the patients, lets say 50% of the population)
Group 2: respond and keep getting better (10%)
Group 3: dont respond (maybe 30%)
Group 4: get actually worse (maybe 10%)
Of course getting these numbers right requires a proper study a monitoring patients over the long run which nobody is interested in doing. I have spend significant time on that FB group and the CFS subreddit and this is just my feeling.
Also, people who stop responding can also be broken down into two groups. Those who can never recreate the initial benefits (like me) regardless of playing with the dose or taking a long break, and those who can.
In addition, the termination of benefits isnt really a crash. I know that seems like a simple hypothesis : you got better and you pushed yourself and you crashed. That is not it. It's something else (somewhat like antidepressants and how they stop working sometimes). Some sort of regression to baseline.