thought it might be helpful to others to see how this patient (me) gets on with pizotifen. i’ll update this as things progress or change.
Diagnosed with Migraine Variant Balance Disorder by Dr Surenthiran on 31st August 2017 having fallen under the MAV bus in May 2017 (following knee surgery + gut infection, which seem to have precipitated the whole thing).
Prescribed Pizotifen 1.5mg
started at 0.5mg and struggled at first (tiredness and general weirdness) but persevered as i could see results within a few days, albeit small gains, it was positive nevertheless.
Titrated up to 1.5mg within about 3 weeks.
i went from being very dysfunctional before Pz (weird bobbly head, constant sense of motion, inability to drive or use screens, insomnia, dark glasses in a dark room etc) to sleeping like a log, being able to go shopping and take the kids to the beach on a sunny day (1.5 hrs drive), zoo etc, use London transport (the tube at rush hour), even go for a couple of drinks with friends - all within a few weeks.
i then started returning to work and seemed to stall in my recovery. i was able to have a good day and work ok-ish, but would be followed by bad days, before being well enough to work reasonably again. however, even the good days were miles below my previous “normal”, and i don’t have anything like the stamina i need to do my job properly.
on 1.5mg Pz i would say i was half way back from where i had been at my housebound, horrendous worst, but still miles away from being normal. good progress, but not all the way.
last week i moved up to 2mg Pz.
some good days, some bad. i managed to attend a company board meeting OK, but ran out of energy after half a day, and had a couple of bad days afterwards.
Yesterday i managed to go cycling with the kids - cycling for the first time since this disaster struck. actually i felt fine-ish while cycling (on easy, flat tracks - not my previous competitive mountain biking!), but felt a bit like everything was still moving when i stopped riding. anyway- a good day. progress. i was cycling on a sunny day without sunglasses on. a few months ago that would have seemed impossible.
Today - mildly horrible all day. able to work from home on the computer, but feeling migrainy/headachy/a bit wobbly/tingly legs and weak.
so - to date - progress, but not cure yet! bad days now are better than good days pre Pz. good days are quite tolerable although not normal and carefree. bad days are unpleasant but i still have some reasonable functionality - i just feel like i’m only 50% here on bad days.
i hope to progress further and i’m keeping my fingers crossed.
Anyway, i hope this is helpful to somebody…!