this week I upped my dose to 2.5mg, adding in a lunchtime dose, as instructed by Dr S:
side effects: lethargy, sleepiness, feels like a metal ball in my head starts about an hour after taking the lunchtime dose, but not as strong as the side effects when starting the meds or previous increases. some mild palpitations (i have had these for 2-3 weeks every time i have increased the dose). also putting on a bit more weight. and it's not even christmas yet.
i expect it to take 2-4 weeks to get the full effects of this larger dose.
where am i at currently:
i have been averaging about 65%: 80% on great days, 50% on not so great days.
stress, travel, generally doing too much (i.e. trying to do a normal full day for a healthy person, like getting up early, commuting to work, working all day, commuting home), and alcohol intake/sleep change all seem to provoke episodes of 2-3 bad days.
calmness, sleep, and moderate exercise all seem to help get towards good days.
i have been able to do some full-on things, like some pretty hardcore mountain biking on a good day (2 hours in the red zone) or going to board meetings at work, or going out for dinner/dancing and doing shots in a nightclub. all these things seem to lead to moderate bad days 1-2 days afterwards.
but on bad days i can barely hold a decent conversation, and end up staring at the floor and feeling like only half my brain is working. i have also had a few episodes of imbalance and some weird head sensations.
overall, i am still improving, but not massively quickly.
i've been on pizotifen about 4.5 months, and i am so much better than i was. but still quite a long way off leading a normal life and doing difficult or demanding things. i still can't work full time properly, i just don't have the stamina to go at it relentlessly like you can when you are healthy. on good days, people think i'm better, and i feel pretty good. but a couple of days later i'm just not that functional.
i'm hopeful that i'll keep getting a little bit better every month, and eventually be well enough that this condition is not a major limiting factor on my life.
in the meantime, i'm trying to count more good days than bad days.
hope this is useful, and good luck everybody!