Another Pizotifen update

Hi there

After a terrible relapse in Nov/Dec I started taking Pizotifen to compliment the Amitriptyline I was already taking and it has worked wonders. I improved day by day and I can honestly say I’m back to the 97% I was before my major relapse. I know Sandomigran is supposed to take at least 2 weeks to work but I guess I already had the condition under control with the Ami so the addition of the Sando seems to have jump-started things back to normal.

The down side is that I’m very hungry!! I’m not enjoying that at all, especially after I went to a lot of effort last year and did Weight Watchers and lost 8kgs of baby fat. The Ami is supposed to cause weight gain too but I never had a problem with that.

I’m off to see my Neuro at 11:00am today so will see what he says about the medication. I’m a bit confused as to how I was 97% on Ami alone only to suddenly relapse. It wasn’t a gradual relapse either! I’m hoping he says I should stay on the Sandomigran for a bit longer but then stop it and see how the Ami goes again. I’m not prepared to get fat again, but at the same time I’d choose fat over dizzy any day.

Will keep you posted.


1 Like


Your update came at a time when I am feeling very hopeless. So, I appreciate such a positive update. Forgive me, as I have forgotten your story. Would you mind again sharing what your sxs were like when you were at your sickest and what went away? Also, what dose of ami were you on,and why did your doc choose ami over nortriptyline.

Hi Jen,

Congrats on the pizotifen working. But not good about the appetite increase. Luke was saying the same thing. Are you feeling alert during the day on it?

Maybe you can cut the dose in half in a few weeks to see if it eases the hunger but still keeps the lid on MAV.


Hi Scott

I’ve just got back from my neuro and he says the side effects, like the appetite increase, wear off in the majority of patients. I’m going to stay vigilant and make sure I stick to healthy food and even just tolerate being hungry and then see how I’m going in a couple of weeks. His suggestion to me for now was that I reduce the Ami over two weeks and then stop taking it to see whether the Sando does the job on its own. I’m going to give that a go. He says if my symptoms increase I can continue to take both medications or try doubling the Sando. Again, it’s all trial and error. And yes, i’m feeling alert on it. I struggle to wake up, but once awake I’m fine. What are your thoughts on starting Pizotifen for yourself?

Lisa, my story goes back to 2002 and is rather long and complicated (but then aren’t they all?). I have been meaning to tell my story in the ‘What’s your story?’ section but have been distracted by the festive season, a holiday and of course the major relapse I had. As soon as it’s done I’ll send you a message to let you know.


Oh, I meant to say that I told him about the mvertigo board and he logged in there and then to have a look!

Hi Jen,

I’m thinking about giving it another try and starting this week. I want to see what it’s like without Cipramil in the picture. It’s good to know Waterston says the side effects wear off like that. I’d hate to pile on the pounds too as I did on Cipramil years ago. Be great if you no longer need Ami. Great that he saw the board too!


Hi Guys

Wondering if you can help me!

I was diagnosed with migraine associated vertigo a couple of weeks back by Dr Surenthiran. I ave actually had this condition for 6 years but was misdiagnosed with labs/VN.

My symptoms are chronic imbalance, giddiness and unsteadiness, esp when standing still.

I was initially started on nortypytine and gave up after 6 days because of side effects- the sedation part was flaring up my dizzy symptoms. I came off that and have started pizoifen.

The prescription I have been given is 1.5mg 3 times a day. I took my first pill last night (0.5mg) and I have woken up today with heavy unsteadiness and am very tired and my symptoms are flared up.

I am too scared to take it again!

Can I just ask- did anyone get side effects with this med the day after you took it? If so long did they last for? Is it normal for the dizziness to feel worse initially.

Im pretty desperate right now and in need of some advice.