Withdrawing from pitzotifen- anyone with experience ?

[becky_j]

Hi everyone!

My names is Becky and I’ve had migraine associated vertigo for the last 5 years. With the help of Botox I’m now decreasing pitzotifen and I’m down to one tablet. With the help of my doctor I’ve been cutting my dose by 1/4 every two weeks. However, she is very happy for me to do it as fast as I would like with the dosage I would like.

As it seems to be going ok but Is really dragging then I wondered if anyone else has done this and what dosage did I you cut and over how long ? It makes me so extremely tired and has made me gain 3 dress sizes and so I want to be off it as soon as possible.

Thanks for your help. Becky

[michmina]

Hi Becky, ive experienced the same as you with pizotefen .I also went from a healthy for me size 8 to bursting out of a size 12 causing an eating disorder. Im ok now and wouldn't take it again personally. I did withdraw coming off it but it does get better and on my lasts couple of weeks from what I remember. You may be better though as you are having BOTOX so it blocks migraine pain which was part of the withdrawal for me. Good luck, take care and hope you are ok.

Mich.

[Bex35 in reply to michmina]

Hi Mich,

Thanks so much for your message. I’m so sorry to hear you went through this too, and that it started an eating disorder. I’m glad that you’re okay now. I went up 3 stone and three sizes which is really upsetting. I’m okay thanks - can’t wait to be off the stuff! Yes, the Botox seems to be helping quite a bit (only had it a couple of weeks ago though so not up to the actual result time yet).

Thanks for letting me know about your experience of withdrawal. So Sorry to hear you had migraine pain. The only thing I’ve noticed (as well as a bit of vertigo on and off - normal got me though with this) is that I’ve lost my appetite. I guess this hopefully will come back soon.

How long did it take for the weight to change after dropping Pitzotifen?. Did you come off it quickly? I have a pill left and so I’m checking with my consultant to see if I can say drop half a pill each week now the Botox seems to be helping.

Thanks again for your message I really appreciate it x

[Bex35 in reply to Bex35]

Ps this was my old account that wasn’t working but it seems it is working again like a year later !! My Facebook keeps logging me into different accounts lol!

[Bex35]

I think we messaged a few years ago ?!

[michmina in reply to Bex35]

Hi yes I think we have spoken before. I lost my appitite very quick after stopping pizotifen and lost weight quickly too and have maintained it. I naturally physically cannot eat how I did on pizotifen. If would like to try BOTOX for migraines but I just don't have the money and I suffer from many allergies and anaphylaxis to some drugs so a bit scared it could happen with BOTOX. It seems to be really good though for many people.

[Bex35 in reply to michmina]

I’m off pitzotifen, through the withdrawal and weight is coming off 😀

[Bex35]

Hey ! Yes think we did. Ah okay! You too. Did you get some appetite back again ? That’s interesting that you cannot eat how you did. Wondering if the same is going to happen to me. Not appetite at all atm but still eating meals despite that as otherwise feel faint !

Ah okay....you can sometimes get Botox on the nhs for migraine ! I couldn’t as I don’t get pain - I just get vestibular and so I’ve had to pay (which is a struggle). Sorry to hear about the bad allergies. If it’s any help although I don’t have them I ALWAYS react badly to medications. And yet Botox has been the easiest ever ! Cannot believe all I’ve had is a little stiff neck which I normally get anyways and not one bad side effect or any side effect for that matter. I read that for many it is the same. So maybe something to look into ? I was petrified - utterly - but it’s been SO much easier than I expected and it’s really starting to work !

Glad to hear you were able to maintain your new weight. Really looking forward to getting rid of the last tablet ! Xxx

[Sausages10]

Hi! I was wondering from your post how much the Botox helped for the dizziness from your vestibular migraines? I have suffered from constant vestibular migraine for over 2 years and am on propranolol, nortriptyline as preventatives. Aspirin helps a little with the dizziness. Some days are easier than others but am considering Botox, just not sure if it’s effective for the vestibular part! Many thanks

[Bex35]

Hey! I’m so sorry for the delay in getting back to you. It’s been a bit manic my end with being away and Easter! Hope you were able to enjoy Easter. Happy to share my experiences with Botox and vestibular migraines!

So in a nutshell, Botox has been a definite game changer for me! So beforehand, I was on full dose of cinnarizine (2 tablets 3 times a day - hefty dose!) and was also on pitzotifen. I had tried to come off pitzotifen 6 times in the past due to the awful 3 stone weight gain, but each time sure enough my VM would get so bad I had to give in and take it again and I was at my wits end. Fast forward two months after Botox. I’m off practically ALL medication ! So I do have flare ups here and there that require the odd cinnarizine (one tablet each time here and there ) but I’ve only had to take 2 of the tablets in two months. In the last few days I had to as having rebound from last pitzotifen drop and period at same time - joy! But apart from that haven’t needed anything. Since Botox I’ve had more and more clearer days with practically no vertigo. The initial lot is not meant to really have a big huge impact but I’m definitely noticing one for me. My dizziness does get worse when I’m hormonal and so it might be that each period I need to take the odd cinnarizine. After a week or two after each pitzotifen drop it’s flare for about a week and then stops again.

Since Botox when I have had some dizziness it’s been allot milder and shorter lasting than it normally would be. I’m looking forward to the next lot in a month!

What I would say is that if you’re in UK and get head pain with your VM’s then it might be possible on NHS (I’m not a professional though and there’s quite a tight criteria). Due to the fact that I have no head but with vertigo dizziness only , my specialist in Kent said I wouldn’t get it on the nhs as it is not recognised by NICE/NICE with enough evidence. And so my specialist said it would be a private endeavour. This is tough, but it’s helping to give my life back.

What I would also say is that it doesn’t work for everyone and as above there isn’t much research on VM and Botox at all that I’m aware of. However, for me it’s really helping. Normally I think you need to give it 2-3 goes for it to help if it’s going to.

The injections were quite a few and did sting, however were totally manageable. I am the worlds worst needle phobic my dr has ever seen and yet I got through it ! Despite the number of injections it’s over so quickly.

I practically had no side effects at all except a stiff neck. So much easier than any medication I’ve tried to take.

I do hope that helps. Let me know if I can try to help any further 😊 xxx

[Bex35]

Ps I would also say that this was just nhs in Kent ...if you’re in another area you might get it for dizziness only who knows worth a try!