I was recently diagnosed with vestibular migraine after months of being dizzy 24/7. I was prescribed pizotifen and I started on 0.5 six days ago and tomorrow am meant to increase to 1.0 before increasing again to 1.5 after another week.
My question is a couple of days after starting it I became much dizzier so pretty much need to lie down all the time now whereas before I’d try and carry on despite the dizziness. I’m also very tired. Needless to say Christmas with a 3yr old has been tough! Anyway, Dr S had mentioned that fatigue and increased appetite are common side effects but not a worsening of the dizziness.
Does anyone know if it is normal to get even dizzier at the beginning? I’m not sure if I should carry on with the pizotifen or stop and I’m worried about increasing the dose tomorrow.
If anyone has a similar experience it would be great to hear about it!
I checked the “Consumer Medicine Information” on Sandomigran (Pizotifen) and it states under potential side effects which you should “tell your doctor as soon as possible” the following “faintness, dizziness or lightheadedness”. If I was you, I would contact your doctor about this.
Personally, I am on Pizotifen and have noticed fatigue and increased appetite. I started Pizotifen while I was in hospital for a severe vertigo attack 1 1/2 years ago and my dosage was 2.0 mg a day. I have since reduced it to 0.5 mg a day. I have not experienced increased dizziness.
Thanks so much for your response. I should have mentioned that unfortunately the doctor I see for my VM is off until 3rd January for Christmas which is why I reached out to people on here. I don’t think I’ll increase the dose today as directed and will try and talk to him ASAP when he’s back. I’m just not sure if I should stop taking it completely yet or not now.
I think it is a good idea, not to increase the dosage at the moment. Whether to stop Pizotifen completely or not - that is a difficult question. Maybe you could take it for a few more days and see how you feel then?
I think I’ll do as you’ve said and stick with it for another few days and see how I get on and get in touch with the doctor as soon as he’s back. Fingers crossed the dizziness will ease up a little.
Thanks again! It’s hard not being able to speak to the doctor about it at the moment and I really appreciate your response!
Hi Sarah, I was on Pizotifen for a couple of years and it didn’t make my dizziness worse, but , at the time, my brain felt as if it was vibrating and fluttering so it was difficult to tell what was going on. It did make me very tired and I also put on weight, but it seemed to be helping and the tiredness eventually stopped once my system got used to it. I would reiterate Katherine’s advice to not increase your dose until you have spoken to Dr S. I hope it works out for you, if not Dr S will find an alternative!
Thanks so much for your response. I used to be so outgoing and sociable and adore my job but this year has seen me distance myself from my friends and have to stop working earlier this month as the constant dizziness and episodes of blurry vision have all become too much and I’m finding it so hard. The hardest part is that I have a 3yr old who is my whole world but I can’t do the things I want to do with her. It all feels too much sometimes and a lonely place to be as it’s hard for people to understand so replies on here really help me feel as though I’m not alone.
I definitely won’t increase my dose of Pizotifen and will wait to speak to Dr S but fingers crossed if Pizotifen doesn’t work for me then something else will!
I definitely know how you are feeling right now - I had 5 months off work and initially was unable to do much at all, although I made myself move around and do things. I can remember Dr S telling me not to do too much, which was fine for me but will be difficult for you with a little one to look after. Gradually things improved , but it was very hard at the beginning as I thought I would never get my life back again. Dr S will make sure that you get the right medication which will get you on the road to recovery. I found that getting enough sleep helped and trying to remove stress from my life - again not an easy thing to do. I never did find my trigger but think it was a build of stress over many years and a lack of sleep due to chronic insomnia. I do still have fuzzy days, which seem to coincide with barometric pressure changes, plus I have 24/7 high pitched ringing tinnitus , but I feel 95% normal most days. I hope you can speak to Dr S asap and get back on track.
Hi, I’ve also been on Pizotifen and had no increased dizziness. Just sleepy which was a blessing as I had insomnia quite badly beforehand due to propranolol.
It worked really well as the weeks went by. How do you feel now, has it lessened?
Sadly the dizziness is still really bad and hasn’t calmed down to what it was before I’d started Pizotifen (which was still bad!). Hopefully Dr S can give me some guidance on what to do once he’s back after the break.
Thank you again for all the comments. It really helps me feeling like I’m less on my own with this.
How are you doing? Has Pizotifen started to work or are you still dizzy?
I didn’t get dizzier but was super tired - basically falling aslee all the time. Give it a few weeks, see how you get on. I went slowly for 0.5 to 2.5mg which I still take 4 years in. No dizziness at all now unless I stop taking pizotifen.
See my thread ‘the pizotifen diaries’
Good luck! Worked great for me.
I did put in weight though. Eventually came off. Pizotifen makes you hungry…!
Dr Surenthiran advised me to come off the Pizotifen when I spoke to him at the beginning of the month to see if my increased dizziness eased but after a week it hadn’t so he then suspected that the worsening was due to migraine-related balance disorder and advised me to go back on the Pizotifen. I started on it one week ago at 0.5mg for four days and then increased it to 1.0mg and I actually already felt as though there may have been a very very minor improvement (although yesterday and today that little improvements seems to have gone!) but I also realise it’s early days so it may have been wishful thinking as I know it takes time. I’m trying to stay positive
Thanks for the message. Any story of Pizotifen working for anyone gives me hope at this stage!
Yes, the fatigue and hunger is another level! I had to go on another medication last year for something unrelated which had the same affect and I slowly got used to it and managed to control my appetite so I’m hoping I’ll get there with this one too!
It was fantastic for me!! Hopefully it starts working for you.
Hi Belindy! How long until your symptoms vanished on Pizotifen? I’ve been on it for nearly a year now and now on 2.5mg and I’ve still got 24/7 rocking/dizziness, which I thought would have gone by now!
“Vanished” - not exactly.
I’m going to say over a year before I stopped getting shifting vision upon waking in the morning. When I changed to pizotifen after propranolol I felt immediately better in the sense I could sleep and stopped vomiting - which I had been each day for 5 weeks. It took a couple months to feel as though I could drive and I started work again 3 months after stating. But I was no where near better. Still head movement intolerance, nystagmus, dizzy, and vision issues.
I came off after 1 year and 3 months and switched to Ajovy as my headaches were not great. But initially, it really helped me get out the really terrible can’t walk or live without help type scenario.