Sandomigran/Pizotifen - has it helped you?

Hey, I’ve been thinking about trying Sandomigran/Pizotifen because it has been successful for so many and has a low side effect profile. I am med sensitive. My only concern is that this is an antihistamine and Idid not feel better at all on Meclizine/Antivert, another antihistamine.

If pizotifen helped you, how did you feel on meclizine?

Is pizotifen worth trying?

Thanks and I hope everyone is having a decent day!!!

Julie

Hi Julie,

I took pizotifen and it was brilliant for me. Very few side effects (I felt more tired for the first couple of weeks, but that resolved over time, and also some weight gain due to increased appetite) but really good positive results. It did take quite a while to have full effect though, so it’s not a quick fix in my experience.

What do you mean by ‘med sensitive’? (I’ve noticed a few people on here using this term, and I’m not sure what they mean.)

By med sensitive I mean that I easily feel the side effects of meds. I’ve have heard that pizotifen doesn’t have any really nasty side effects and it’s good to know it has helped you so much!

What dose do you take? Do you split your dose or take it all at night?

Unfortunately Pizotofen didn’t work for me. I was on it for eight months and couldn’t wait to come off it. I also put on a lot of weight.

Brenda

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By med sensitive I mean that I easily feel the side effects of meds. I’ve have heard that pizotifen doesn’t have any really nasty side effects and it’s good to know it has helped you so much!

What dose do you take? Do you split your dose or take it all at night?

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1 mg at night.
But I don’t take it any more, cos I’m better now :smiley:
Good luck.

Completely better? Wow, that’s awesome! How long did you take it for before stopping it? I am excited to try it.

I’m on week 5 of piz - working my way up to 1mg. So far no dramatic side effects - maybe a bit of weight gain but nothing major and it is also the silly season! I’m up to 0.75mg at night

Might be a little bit more tired, but again it’s that time of year. I think the only thing I can certainly say is that in the initial week at each dose level I do notice a slightly more dry mouth - but it’s not a major drama - in fact I’m well hydrated!

Compared to metoprolol (lopressor), topamax, and ami it’s a walk in the park! But with many of these drugs you just have to try them and see how they work for you - and you need to give them a decent trial. Metoprolol took 6-8 weeks before I really noticed any impact’
good luck

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Completely better? Wow, that’s awesome! How long did you take it for before stopping it? I am excited to try it.

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I still can feel slightly ‘off’ occasionally (e.g. if I have a cold, or sometimes the day before my period), and I still get random feelings of movement when I’m sitting still (but only every now and then, and sometimes I go weeks without that happening), but yes, I’d consider myself 99% better.

I think I took it for about a year before tapering off it. I probably would have stayed on it permanently as it reduced my headache migraines a fair amount too, had it not been for the weight gain. I certainly found it very easy to tolerate in terms of side effects. Hope it works for you!

Gabrielle - well done on getting up to 75mg, hope you soon see an improvement. I know it took a few weeks at 1 mg for me to get the benefits, so stick with it!

Hi Julie,
I absolutely loved Pizotifen! I started at 0.5mg and was on that dose for a week or two, before stepping up to 1mg. Then after 3 weeks, my 24/7 dizziness had virtually vanished (to a level where I had pretty much forgotten all about it)! I remember feeling really, really tired at first, but compared to the side effects of say, Topamax, it was an absolute dodle! I didn’t even realise at that stage, what I had or what MAV was, and later on due to other reasons/circumstances, I came off the Pizotifen prematurely, and when I returned to it a few months later it had lost its effectiveness (it still worked at around 65-70%, but didn’t have the stunning results that it did the first time around, despite going to 3mg per day). So now I’m on Topamax - let’s just say this hasn’t been such an easy ride for me! Even now, I always have the Pizotifen in the back of my mind - perhaps I’ll return to it one day…
Best wishes,
Tony.

Thanks so much everyone. I am in the US so my doc prescribed it and I had to order it from a Canadian pharmacy and they have to get it from the UK. So…anywhere from 2-6 weeks because of the holidays. Hopefully, it will be sooner than that.
In the meantime, I’m going to try Valium along with diet, magnesium and B2.

Julie