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The Pizotifen Diaries


#1

Hi

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…!


#2

best of luck with your journey! keeping a journal thread on here is a good idea :slight_smile: +1 for great title :wink:


#3

Good luck, I see you went back to work, that’s great. My only goal in life right now is to keep my job and somehow move forward with this pain-in-the-ass sickness. Overtime time you will come to see this shit won’t kill you but it is a nuisance which sucks up your attention span. A great day once in a while make the shitty days worth it. Wish you a steady progress !


#4

Update:

I’ve been on 2mg Pizotifen for 3 weeks + now. the weirdy tiredness has worn off and I’m reasonably functional.

the good news is i can do lots of ordinary things quite easily most days now - driving, supermarkets, working at computer etc - all of which were close to impossible pre-pizotifen.

i’m also swimming most days and walking a decent distance most days. walking is harder than swimming though - i do seem to hit a certain level where the trees start to look odd. but all is much better than before, when it was like alice in wonderland. i do have some degrees of headaches which vary from hour to hour - nothing awful, but never quite clear. interesting that swimming has felt entirely natural - maybe because the senses are used so differently, but still interesting i can swim front crawl, with lots of head turns, in and out of the water, and it feels quite normal.

the bad news i i am not getting on with my commute to work - an hour on the train, then a tube or cab journey. i’m only doing this 1-2 times weekly, but it rally seems to trigger my symptoms and i get all wobbly. so i am working from home as tolerated, and trying to avoid going into the office for now.

still sleeping pretty well, and the pizotifen seems to help to keep me calm despite some pretty intense things going on in my life.

the other thing that seems to help is being more accepting that i am unwell and need time to get better. trying to force myself to feel better wasn’t helping. this will take as long as it takes…

hope this is helpful for somebody!

I’ll do another update in a few weeks, or if anything changes…


#5

Hi
Another update. I hope this is useful for anybody trying or thinking about trying pizotifen.

it seems to be working for me.

about 6 weeks ago i increased my does to 2mg pd. I have been told it takes a month or two to take effect each time you change the dose. Over the last couple of weeks I have notched up from about 50% functionality (where i have been for about 2 months) to about 70% - which is great. really great. i have had large chunks of the day when i feel pretty normal and i forget i have this condition for a few hours. i’m doing most everyday activities without worrying about them now and without worrying whether i’ll be able to do them.

i haven’t yet put myself in any high pressure situations and i am not working 100% yet - I’m doing some work from home and going into the office when i can. not ideal, but i’m surviving on that for now.

i also otice more now that this is episodic, rather than 24/7, and i notice that pushing myself (either too much work, or too much screen time, or late nights, or physically going too hard) does tend to peg me back to a few bad days. so i’m trying to keep on an even keel and keep a steady routine as much as possible.

touch wood, fingers crossed, i seem to be going in the right direction for now.

:heart_eyes:


#6

Another quick update.

a few ups and downs recently, but nothing too horrible, and I’ve been getting back into exercise. swimming 3 x a week. cycling 3 x a week. even some semi-challenging mountain biking (although i think that did set me off a bit). i also have played my first game of golf today since this all started. didn’t feel 100% but most of the time i just forgot about it and enjoyed myself. sometimes, especially when standing still doing nothing, the symptoms seem more present. i have to say i feel a hell of a lot better generally now that i have started exercising again, even if it does poke the symptoms a bit.

i also found that driving into work is much easier for me than going by train - the driving makes me tired but the train makes my head go weird and wobbly. so - not there yet on transport! still some way to go.

I’m still on 2mg pizotifen pd (0.5mg in morning, 1.5mg in the evening). planning to go up to 2.5mg as suggested by Dr S - but not sure when yet. i know it will make me sleepy and woozy for a few weeks if i start taking a lunchtime dose. but i want to try to get rid of the symptoms as much as i possibly can - so I’ll have to bite the bullet some time.

i’ll keep posting in the hope that people find this helpful if they are wondering whether meds work, what to take, or are trying pizotifen.


#7

Good to hear that exercise helps. Did you happen to find any dietary triggers ?


#8

No definitive dietary triggers. But ‘overdoing it’ whether it be work, travel, physical exertion, long drives, etc, does seem to give me 2-3 worse days afterwards.


#9

Hello again

Pre-Christmas update:

this week I upped my dose to 2.5mg, adding in a lunchtime dose, as instructed by Dr S:
0.5mg 8am
0.5mg 1pm
1.5mg 7pm

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!


#10

I forgot to mention I’ve also been seeing an osteopath, who does stuff to my neck and cranium. don’t know what it does, but i feel a lot better for a few days afterwards…

there is some medical data out there to back this up:


#11

I can’t stand that!!! I don’t even really have “good” days, but if I talk to anyone about feeling a little more comfortable moving around the apartment or being able to go out on my daily walk or go anywhere else, they automatically think the condition is improving for good. No one gets that it’s going to keep coming back, especially until I can find a medicine to help. I’ve gotten to the point where I don’t share the news of my “better” days with anyone anymore because it’s not worth hearing that crap from others.


#12

Hi. Me again.

Update - saw Dr Surenthiran yesterday. he thinks i’m moving in the right direction, which i do too. but progress has slowed down. i’m still on 2.5mg pizotifen daily, and i’m still having 4-5 bad days a week, but the bad days are less severe. Dr S said it’s like taking an exam - getting to 50% is relatively easy. getting to 90% or 100% is really hard!
he’s prescribed gabapentin for me to add on top of my pizotifen, which i’m going to try out from tomorrow. 100mg for 7 days, then 200mg for 7 days, then 300mg daily… bit nervous about this one, but i’ll just bung it down my throat and see what happens. if the reviews are anything to go by, i’ll be a zombie for a few weeks until my body gets used to it.
he thinks i’ll be on meds for at least another 12 months. we have a review scheduled for 7-8 months from now. i wonder if i’ll be feeling much better, the same, or (really i hope not) much worse then…?
i’ll update the post when i’m on the gabapentin…

wish me luck!


#13

good luck with gabapentin…it is more tolerable than other meds out there. I took this for help with anxiety for a brief period.


#14

I’m also on Piz, for 5 months now. It made me about 80% better on 1 mg. A few weeks ago I noticed it didn’t work as well anymore as in the beginning, more frequent attacks again… so I upped to 1.5 mg. I’m planning to stay on that for another 3-4 weeks, then if I’m not satisfied, ask if I can go up to 2.0 mg.

Along with the Piz, I’m also going to try magnesium, ubiquinol, riboflavin and taurine now… and follow the 6c diet… along with making sure I sleep 8 hours every night and have a regular schedule.

I hope all these things will finally get me to 90-100% fingers crossed. The one trigger that I cannot control and I still react to is fluorescent lights. If I avoid those I have almost no migraines (except around menses). Problem is… I cannot avoid them :frowning_face:. I have special filter glasses but they also don’t protect 100%.

I have thought about switching meds, but I find that Pizotifen is one of the safest meds to take, and the side effects are very mild to me… and it IS helping (though not 100%), so I don’t feel like switching (yet).

I also considered Gabapentin, as my reaction to fluorescent lighting resembles fotosensitive epilepsy somewhat (though I don’t think I have that)… but I’m VERY afraid of this med and its side effects… Especially after hearing it often causes hair loss (which might be permanent), and after reading this article (posted on this site somewhere else): http://www.dailymail.co.uk/health/article-5102355/Crippling-toll-new-valium-ruining-lives-MILLIONS.html

My next med trail would be amitriptyline/nortriptyline or metoprolol I guess. (I dare not touch the anticonvulsant meds.)

  • Lisa

#15

May I ask why? Do they have bad side effects?


#16

Hi Lisa! What were the filtered lenses you purchased / have?
I just recently bought TheraSpecs yesterday (waiting to be shipped) since I visited IKEA yesterday and went through migraine hell with migraine after effects spilling into hours later at night with some issues I haven’t felt in months.
With that said, how would I know if I have the epilepsy and also I’m hoping these glasses work. Even very bright LEDs in a room bother me sometimes.


#17

When I look up the side effects/risks of these meds + the likelihood of being affected by those… there are quite a few of them (like weight loss, hair loss, deafness, kidney problems, organ failure, addiction, and more) that make these meds a no-no for me. The list of possible side effects is also MANY times longer than for e.g. pizotifen or metoprolol.

But everyone has to decide for him/herself what risks he/she is willing to take to possibly get better. Reading through the complete information on a med (which can be found online with a little search) can help you make an informed decision.

I personally would never just take a med, or only read through the information leaflet that comes with the med (which only contains the most common side effects and leaves lots of others out).

I also experienced a few side effects of Pizotifen which were stated as “rare”, and some which were not even in the leaflet that came with it, but WERE in the full info on the med that I found online.
So for me “rare” means nothing. I can still get those side effects. That’s why I’m scared to use meds like Topamax… because the “rare” side effects of Piz are just bothersome, but the “rare” side effects of some anticonvulsants can actually be dangerous.

Just my two cents.

  • Lisa

#18

I have Vista Mesh lenses (google it). You can order them via an optician/optometrist. They can be made with or without prescription and can be put into almost any frame you like… but I would choose a frame that allows in as little light from above/the sides as possible.

I know what you mean. If I go to a garden centre or other stores with (old) fluorescent tubes, within a few minutes I get a growing pressure in my head, slight balance problems… and dizziness and a headache if I stay long enough. Sometimes I get a full blown migraine attack with vertigo…often the migraine attack only happens a few hours later, or like you said, at night in bed.
An half hour visit to a store with bright fluorescent lights can make me feel bad for hours afterwards.

The Vista Mesh lenses help me tremendously when I experience photophobia, and I have less symptoms with them on (in fluorescent light), so I believe they reduce the risk of getting a migraine. I feel like I can be in fluorescent lit stores longer, without ill effects. But they do not protect 100%.
I’m very happy with them though. I never go shopping without them, and they really reduce eye strain, so they’re great for working on the computer as well.

I sometimes feel like I should ask my GP to be checked for photosensitive epilepsy, but then I realise I don’t have true epilepsy symptoms like absence etc. I always stay completely conscious when I have attacks due to bright lights, even during the bad ones… so that makes me believe it must just be the migraine. Then again, I’ve had severe dizziness, loss of balance and head pressure attacks only a second or two after a very bright light shone into my eyes… which is kind of weird. Also strobe lights do me in completely. No problems with video games though.

Any one else with similar experiences?


#19

I just looked up Topamax and one of the side effects is osteoporosis. I already have that and am being treated for it so there’s no way I’d want to take a drug that might worsen my already-brittle bones!


#20

Docs just started me on pizotifen but reading up on it im scared to start it . Sure i smoke weed and take diazepam 3x a day 5mg have been taken off doxepin and put on this . I had a recent episode ended up in hospital and out of work for a month ,becauae i stopped my meds . It threw me way out ,my sweat stunk ,0 balance , dizzy , like hard to drive focus stay warm . If i start this and do the same it will happen again . I dont want these meds .i wish i could wear a mask and no 1 see my face then i could be free