The Migraine Associated Vertigo Community
Read our welcome post, user support wiki & visit our member recommended products page

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

1 Like

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:

3 Likes

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

1 Like

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

1 Like

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.

2 Likes

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

4 Likes

Me too!!! Made me laugh.

3 Likes

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.

1 Like

Hello,

Since June, i have been taking pizotifen. I started on 0.5mg for 6 weeks, increased to 1mg for the next 4/5 weeks, then went up to 1.5mg which I have currently been on for about 4 weeks.

I cannot say I have noticed an improvement.

Do you think I should give the meds more time (it has been nearly 4 months) or should I increase again? Or move onto something else?

I wanted to see Dr S but he is busy until mid November… any other dr’s you can recommend?

Most preventatives can take up to four months to work and that’s four months from reaching an effective, ie maximum tolerated dose that controls symptoms. I read several places to allow 6-8 weeks I think it was for Pizotifen so you probably aren’t there yet.

May I ask what dose and time duration the prescribing doctor told you to follow. If you had no instructions, which would seem very poor, perhaps the attached may help. If that’s no help perhaps you should contact your prescriber.
http://www.nhsgrampian.org/nhsgrampian/GJF_general_new.jsp;jsessionid=EC93B5680DCEC97447BC36F0D7A36B5C?pContentID=4492&p_applic=CCC&pElementID=578&pMenuID=464&p_service=Content.show&

Thanks. I could not access the link…

The dr said i could go up to maximum dose of 3mg, but what is the point if it doesn’t help. I will just be left with annoying side effects.

No it seems that website’s down currently. Try later. It says 3mg too. That’s probably considered an effective dose, ie one that ‘does’ something to help. I‘ve read elsewhere sometimes people end up on 4.5mg.

Surely you won’t know whether it helps or not until you’ve reached the 3mg and took the drug for the 6-8 weeks. It may not give you side effects at all. You won’t know til you try. Some drugs don’t do anything you’d notice until you reach the right dose. Ask @LucyLabrador! I took Propranolol for months before. Helen

1 Like

Hi Ryan

I have just replied to your PM but it bounced back - not sure why!

I was on the same dosage as you from June 12th to September 6th so that’s roughly 4 months and although I had greatly improved I felt that I had ‘stalled’ and wasn’t getting any better. Dr S had told me that I could increase the dose by an additional 0.5 mg if I felt I hadn’t improved and after another 6-8 weeks could increase it again by an additional 0.5 mg, so on Sept 7th 2018 I went up to 2.0 mg per day from 1.5 mg per day. After that I gradually started to make noticeable improvements and during this spring/summer have felt almost normal- just the tinnitus annoying me. I never did go up to 2.5 mg as I felt really good on 2.0 mg, however I would definitely have increased the dosage if I hadn’t improved as that is what Dr S advised.

I saw Dr S on 3rd September 2019 and he told me that I should now reduce my dosage every 6-8 weeks by 0.5 mg, but to stop in December at whatever dosage I am on as Christmas tends to aggravate symptoms -a very stressful time! I am currently back down to 1.5 mg per day and I have mainly been ok but have had a lot of ear pressure this week - the barometric pressure affects my ears quite a bit and there have been lots of changes in my area this week. Yesterday was particularly bad - I had ear pressure, loud tinnitus and nose pressure and I am wondering if the autumn/winter months will be less good for me than the summer because of weather changes. I will continue to reduce the dose so that I am down to 2x 0.5mg by Christmas.

It does seem to take a bit of time for Pizotifen to work - sometimes you don’t immediately notice the improvements as they are very subtle. I would therefore follow Dr S’s advice and increase the dose and then when you do see him in November you will be able to say how you are feeling and if it isn’t working he might suggest an alternative.
Good luck! Jan

3 Likes