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Pizotifen. First hand experience and alcohol tolerance

Hello. I will be starting Pizotifen, 0.5 a day first week, followed by 1 a day, and increasing up to 3 a day.

I know you shouldn’t drink alcohol while on it. However, I have weddings, social events etc coming up and I can’t really avoid drinking. How much alcohol is tolerable while taking pizotifen and how have you found it? Any advice would be helpful! The thought of not drinking is scary :open_mouth: I’m only 28

Why Buck The Trend? These days there are plenty of non alcoholic beers etc available or like an old family friend of mine always did in similar circumstances drink ‘Gin n Tonic’ - without the Gin. Fetch drinks yourself and nobody will ever know. You asked me on another thread …

Hi Helen. What did you do following your diagnosis? Any recommendations?

Yep, I followed the rules. Not supposed to use antihistamines or cold relief remedies with beta blockers either. I’ve never found alcohol any advantage with dizziness at all. In quantity just makes one dizzier. I expect you will find starting and increasing Pizotifen may well make you extra dizzy enough on top of the MAV without adding alcohol into the mix. If you want to get the symptoms under control, I’d suggest following the rules for a few months at least. Once you’ve acclimatised to the drug I suspect an odd glass at special occasions may be OK. My mother took huge quantities of antidepressants for many years but was allowed a small amount of alcohol at special events. You’d have to check with a pharmacist but I suspect Pizotifen (different drug class I know) may prove the same, Helen

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I sympathise - I used to enjoy a glass of red wine most nights , but had to stop all that since last June, so it’s been a year of no alcohol. I am also taking Pizotifen which says to avoid alcohol and I was also told by Dr S to stop drinking red wine as it is a trigger. To be honest I would have given up anything just to stop the dizziness etc so I didn’t find it that difficult to start with and now I find I can live without it as I feel so much better. As @Onandon03 has said , there are loads more alcohol free drinks now and looking on the bright side who needs alcohol to make us feel dizzy and sick when we have MAV? Jan :innocent:

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I’m on pizotifen and don’t even sniff alcohol any more. Dark alcohols are usually more of a trigger than white/clear ones. Beer always triggered me (pre pizotifen) or mixing drinks. Vodka was always safest.
Does alcohol trigger your symptoms at the moment? You don’t want to be really ill at an event where there may be a lot of potential triggers (light, noise, food etc), especially away from home. You could either delay taking the pizotifen or start and have a “trial” of taking the sort of alcohol you would choose to drink at events whilst on it but do it at home just to see what happens or try out non alcoholic alternatives in advance.

When I drink alcohol I am fine, and it seems to suppress my symptoms. I do get tired after a few drinks but that’s fairly normal. No specific drinks, I drink a wide range although not really red wine anymore.I hope Pizotifen won’t have many, if any side effects to drinking. I am not suggesting I will be going a booze cruise for a whole week, but maybe the 1 or 2 drinks with dinner on occassion, and maybe 5 or 6 drinks at a very occasional big social event.

Now might just be a good time for a prioritisation rethink. Helen

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I appreciate that! Yes, will try my best. I also want to be able to live as normal life as possible.

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I have started taking Pizotifen, 0.5mg a night. When I first took it, I had a very brief feeling of lightheadedness - I was out at a restaurant. I have felt a little more tired, but I don’t know if the medication is to blame for this as I did a 10k race on Saturday and came 2nd place!

When did you notice the Pizotifen helping? Did it make you both tired and hungry/increased weight?

Each time I have gone up a tablet I have felt a bit light headed about an hour or so after taking the tablet for a few days (although I am med sensitive so it might in part be anxiety as I am allergic to a couple of common antibiotics)and I also felt slightly more tired but this has gone after a week of being on the increased dose. I have put on a bit of weight (trousers tight where they were loose before pizotifen)and do feel hungry a lot although easily sated so my portion sizes haven’t increased but my need to “snack” has. However, I’m not sure if that is the pills or just generally feeling somewhat better and doing a bit more, so therefore, hungrier. I do have a very sweet tooth so am trying to eat healthy snacks like crudites and rice cakes to get my biscuit snacking under control.

I didn’t start improving until I was on 1mg a day and seem to have levelled out now at 3mg, so probably need to go higher or add in another med as I am by no means healed, just a lot more functional, no races for me. However, I’m an old lag (mid fifties) and have probably had MAV for about 23 years, misdiagnosed repeatedly as Menieres for which the Menieres meds unsurprisingly failed, so I’m a much harder nut to crack than you.

Good luck, I hope Pizotifen works for you.

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A 10k race would kill me. No doubt about it. I couldn’t do a 1k! I cannot run not since chronic MAV. But I’ve much more in common with @sputnik2 than you. Actually thinking about it, it wouldn’t be MAV that killed me after a run. It would be pure shock of being able to do it in the first place! MAV varies much much in its intensity. I am convinced once people have actually lost balance and been bedridden with it a time and the symptoms go 24/7 - which proves to me - they lose the ability to reset themselves, MAV enters a whole new ball game. Helen

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Me too!!! Made me laugh.

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Hi

I’ve been on pizotifen for almost 2 years at 2.5mg per day. it does not affect my drinking at all these days. however, if you find the pizotifen makes you tired and woozy, then drinking alcohol on top can make you even more tired and woozy. i would recommend waiting until you feel “normal” on the medication and start with a small drink or two at home and see how it goes.

i wouldn’t recommend slamming ten shots of tequila like i did last month. i felt awful the next day. must be the pizotifen, right? :wink:

as far as i know, there is not biochemical reason that you can’t drink on pizotifen; rather it’s just that you are taking two things at once that can both act as physical depressants. so one pint of beer might feel like two or even four pints, as Dr S described it to me.

however, I AM NOT A DOCTOR, and i cannot ever recommend you to ignore medical advice. but if you do, try it slowly, at home on the sofa with a can of beer. worst case, the sofa is near the floor.

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