Pizotifen takes charge!

So i’m finally making the move to my third med trial - pizotifen. I’ve heard weight gain and crippling tiredness banded around, surely this can’t be worse than amitriptyline or propranolol? I’m hopeful! Third time’s a charm. Starting next week… anyone out there on pizotifen?

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Good luck!!! I’ve heard good things! Xxxx

You may have seen blondie post that she is now at 95% on a combo of ami and pizotifen! Also waspcharmer has seen significant improvement on pizo and gabapentin! I have read of many successes on it. Good luck! x

I’m currently on 3 tablets of pizotifen, I did go up to 5 tablets but came back down after a few months. Also on 50mg Dothep, and I’m coming off that and going to try another, as I think it’s giving me hives. Pizotifen was what got me out of bed initially, but has done nothing for my headaches. The only side effects I’ve got from it, dried mouth, constipation, dreams for a few nights after each increase, belly cramps that hung around for a while, but eventually went and I found i took a little longer to wake up in the morning but that wore off too. Sorry also on day 4 after each increase I felt a little down, but that only lasted a day.

I started on 1/2 a tablet and after 2 weeks went to the 1 tablet and then after every 8 days I went to 2 tablets and then 3.

Good luck.

I’m currently on one tablet daily. Tried to go up to two but couldn’t get off the toilet (lets say). Weight gain has been an issue and increased visual issues. Works pretty well on the headache pain.
Brookie

Thanks all!

Hi there,

Just wondering how you are managing now on the Pizotifen? I’ve been taking it for 4 weeks now (1.5mg each evening). There is maybe some slight improvement but nothing to sing or dance about!

Hoping it will start to improve the longer I take it…

Angela

Hiya - i actually haven’t started yet due to some family problems i didn’t want to rock the boat just yet. Going to be starting in the next few weeks but will keep you posted. I’m most worried about weight gain and getting dizzier at first - so if you haven’t had either of those that’s ace! x

— Begin quote from "whosthatchick"

Hiya - i actually haven’t started yet due to some family problems i didn’t want to rock the boat just yet. Going to be starting in the next few weeks but will keep you posted. I’m most worried about weight gain and getting dizzier at first - so if you haven’t had either of those that’s ace! x

— End quote

Hi there,

Sorry to hear you’re having some family problems. It’s hard enough dealing with our symptoms without anything else isn’t it!

I didn’t experience getting any dizzier at first but I certainly noticed I was hungrier. I have been very strict though and just stick to pretty much the meals/snacks I had before and trying to drink more water. I see my neurologist tomorrow so will see what he thinks what should happen next. Good luck when you feel up to starting it and please do keep us posted.
x

Hello! So i’ve finally started Pizotifen about 10 days ago and i have to say this med has been the best one so far side effect wise. Although i haven’t felt any big improvement yet (it’s early days) i haven’t had any horrific side effects like increased vertigo, headaches, etc. I have been able to eat alot more than usual, but i’m also hormonal and always like this at this time! I’ve also been VERY drowsy in the mornings, but i’m willing to accept being a bit lazy when there’s nothing else to complain about!

I really hope it will help the vertigo soon. Actually yesterday evening and today the vertigo has been a little worse, i’m not sure if that’s because the pills are building up in my system and i may need to go through a little adjustment phase.

I did come off propranolol immediately too, as i was only on 40mg - i was shocked to see how little difference it made! I don’t think it’s being doing anything for me, apart from perhaps allowing me to recover naturally beneath it’s side effects. I believe MAV does relax over time… and i think it’s all about a positive outlook.
I try not to let it stop me very much, Ofcourse sometimes the pavement swings beneath you and you’re stuffed! But, most of the time, feeling shitty doesn’t mean you can’t get a walk round the park in with a friend to keep you safe.

Little by little i hope to recover. I’ve turned 25 during this illness and i’m not willing to lose much more of my valuable twenties to this illness!

Pizotifen seems to be working on something and i certainly haven’t noticed anything out of the normal. I’ve had a worser patch yesterday eve and this morning, where my vision is rocking more. But i’ve also been incredibly busy, watching high res televisions and even attempting the hobbit in 3d at the imax!

All triggers. So i say YES to pizotifen if you’ve been wondering.

How is everyone else doing on it?

(NB: It’s the first med i have tried that is actually FOR HEADACHES. Baffling. Here’s hoping i don’t pile on the pounds!)

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It took me to 95%/100% within 3 months back in 06, and I stayed like that for about 18 months, came off it, symptoms returned 6 months later. It didn’t work for me second time round.

Very effective drug, side effect for me was weight gain.

Good luck!

And i should add they have started me on a tiny dose, to increase by 0.5mg every 4 weeks. I’m currenly on 0.5mg.

It worked like an absolute miracle, within the space of a few weeks, first time around - almost completely fixed. Then, to cut a long story short, I came off it, prematurely. Didn’t work the same the second time round - still worked, but not the same. Then, went on it again for a third time last year, and it helped again…strange. But it’s been my favourite out of all the drugs I’ve tried (propranolol, Gabapentin and Topamax).
Good luck!

tony do u think the gabapentin helped you at all or do u think pizotifen was doing all the work?

Good to hear whosthatchick.

I went and saw the Hobbit too, but not in 3D wasn’t that brave.

Goodluck with the piz. Crossing my fingers for you.

— Begin quote from "sarahd"

tony do u think the gabapentin helped you at all or do u think pizotifen was doing all the work?

— End quote

Hi Sarah. Let’s see, my drug ‘trials’ have been - Propranolol, then Pizotifen (worked like an absolute miracle - felt cured, but came off it too soon), then Pizotifen again (worked OK-ish, perhaps 70% but basically for some unknown reason it didn’t perform the same miracle the second time around), then Topamax (was on this for well over a year, I think, and battled all the way up to 100mg, but couldn’t stay on it and didn’t really notice the effect I was hoping for), then Gabapentin (worked brilliantly at around 1600mg - almost the same as the Pizotifen the first time around - but after being like that for a month or so I started living my life again which was apparently overdoing it too soon, so I had a ‘relapse’ - climbed higher, to 2400mg and didn’t really help that much), so then added Pizotifen (third time I tried it) and it worked great again (see http://mvertigo.cloudapp.net/t/thank-you-pizotifen-youve-done-it-again-90/5553 ), but over last few months or so dizziness has been back again, although I had a lot of changes (redundancy followed by a couple of new jobs).

So, not sure if that’s clear! lol
I’m now reducing the Gabapentin because I thought I had started to feel slightly ‘flat’ and couldn’t seem to muster enthusiasm for anything (target is to go back down to 1600mg, based on the theory that this was the kind of dose that worked great initially for me, but beyond which I haven’t really felt much improvement).
Basically the Gabapentin initially did wonders, and I found it really easy to take, with hardly any side-effects (in fact, I’ve found it harder to come back down!), but once I had relapsed by apparently overdoing it (how dare I try to live my life?! :wink: ) the Pizotifen got me back on track again.
Really hope things are going OK for you…
Tony.

i still dont understand this idea that by living again and being more active the meds stop working??? this seems to be a dr. s. theory? im sorry to hear they keep stopping working i honestly dont get it i hope u find something else that helps !

WTC - how’s pizotifen working for u? Dr S has just added it to the GABA for me. Tony, when piz initially worked, how long was it before it kicked in? And also, how long were u on it before u came off it? Just wondering as u thought it was too soon. Xxxx

— Begin quote from "sarahd"

i still dont understand this idea that by living again and being more active the meds stop working??? this seems to be a dr. s. theory? im sorry to hear they keep stopping working i honestly dont get it i hope u find something else that helps !

— End quote

Hi Sarah,
yes, it’s frustrating, but Dr. S told me that the most common mistake is overdoing things too soon during recovery, as it were. I guess that the aim is to stabilise all variables as much as possible - so once the waters are calm, try not to increase anything like stress, since it will create waves again…
I guess the meds were working, at that point in time when all the variables (like stress) had those values/levels. I guess stress has the potential to cause all kinds of chemical changes in the brain, thereby upsetting the MAV-balance.
Here’s hoping we all achieve some kind of equilibrium soon!

— Begin quote from "DizzieLizzie1"

WTC - how’s pizotifen working for u? Dr S has just added it to the GABA for me. Tony, when piz initially worked, how long was it before it kicked in? And also, how long were u on it before u came off it? Just wondering as u thought it was too soon. Xxxx

— End quote

Hi Lizzie - the very first time around, the Piz worked incredibly quickly for me - within weeks. If felt like Kelley has described it on this site - finding the right key to fit the MAV lock. I was on it for months before coming off.
Best wishes,
Tony.