The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

Amy on Pitzotifen


Thanks for that. You would think they suggest that first if its for prevention.R.


The experts don’t seem to use Pizotifen that much at all. It’s been withdrawn in some countries. Apparently it can cause huge weight gain quickly and mood swings and I think I read withdrawal can be difficult but I don’t know which/what influences their choices of course. It doesn’t seem that popular. Of course it’s designed to treat headaches, chronic daily headaches, cluster headaches, migraine headaches. Not specifically to treat MAV. Helen


Hey @oak17 I’m pretty sure a gp can prescribe this yes :slight_smile: my private gp does so can’t see why it would be too different


Honestly @sputnik2 I relate to everything your saying some days I’m going forward others right back to the start I think it’s the overall picture that counts tho it’s a mental uphill battle the whole time . However I do think upping the pitz will help I suspect he’s going to do the same for me ! How are you appetite wise on it ? I’m still super hungry which is annoying !

I hoe you had a lovely new year please keep me updated on ur progress as our symtoms seems so similar ! X


Thanks Amylouise. I will ask my GP next time I have an appointment if I can get one! Thanks. R.


Def worth a try :slight_smile: good luck


Hi Amylouise. You say its prescribed by a ‘private doctor’ is that one you have to pay for? Thanks R.


Hi @oak17 mine was prescribed by dr s but I do go to a private gp that I pay for yes


Great to hear from you Amy - it is good to hear that you are making progress on Pizotifen - I am sure you will continue to do so this year. I still have good and bad days but think I am very fortunate to have found a med that seems to suit me straight away. I have been very lucky too Helen @Onandon03 that I haven’t put on weight as I know lots of people have.

It is so annoying when for no apparent reason we have a relapse - I still have trouble with ear pressure - it’s worse today than it has been for a while, but at least the dizziness has gone. I must keep an eye on the barometric pressure as it could be that causing me problems. Who knows!
Jan xx

split this topic #92

2 posts were split to a new topic: Private GPs in UK


Barophobia, you mean? No, I’m not making it up. I just came across it on Dr Hain’s website … and couldn’t resist! It’s certainly a new one on me. Happy New Year, Jan. Helen


Haha - I love it. Must check out Dr Hain’s website! Jan x


And Happy New Year to you too Helen! Xx


Thanks so much jan I’d say pitz has got me to 50% seeing dr s next week so will see what the next step is :slight_smile: sorry to hear about the ear pressure although of all the symtoms id def take that over the dizziness :grimacing: glad to hear you haven’t put weight on with pitz I’m ok if I stick to a calorie deficit does it still make you hungry ? X


Hi Amy
Piz definitely makes me hungry. I make myself eat fruit in between meals but every so often can’t resist having a piece of shortbread or biscuit. I also try to keep moving as much as possible to make sure I am not slumped in my armchair all day - when I am not at work. I must find a yoga class this year as I stopped doing Pilates when this all kicked in and couldn’t manage it. I also haven’t been swimming since just before Christmas as I have had 2 colds one after the other. I could easily turn into a couch potato at this time of year! :sleeping:
Considering the diet restrictions I am on , I am surprised that I haven’t lost weight , but perhaps that’s the Piz effect.
I am also struggling with tiredness this week - not sure why. A combination of dark, gloomy days, Piz and not sleeping very well.
I hope your appointment with Dr S goes well. Have a good week! Jan xx


The biscuits have been getting me on Pizotifen. If I have a shortbread then I’m lost and 4 will have popped in my mouth with seemingly no thought process involved. I lost a lot of weight in the summer when I was really bad so it has been creeping back as I’m eating more partly because I feel better than then,. My usual go to snack was nuts but have been keeping off them as part of migraine diet. I eat pretty small meals so might try to increase my portion size.

Glad everyone is progressing.


I have been taking antihistamines for over a month due to hives and OMG, I can’t stop once I start on the cookies. I banned them from the house.


Really how interesting so it’s the antihistamine that does it it’s so wierd !


I see dr s next week so hoping I can talk to him as the spaced out feeling was so intense yday I’m due on and altho I average 40-50 on a bad days and 50-60 on a good I really need to be rid of this feeling it feels like I’ve been trapped in a bubble for a year


Yeah, I was reading that histamine sends the message of being full to the brain. How is your rocking Amy? As you, I feel I´ve been trapped on a boat for a year now.