I have recently joined this site and have found soo many symptoms that relate to my own.
It all started back in summer of 2015 where i had an episode of Labrynthitis. Months passed and i still had symptoms (mainly dizziness and fatigue) i was eventually referred to a ENT specialist. The specialist diagnosed MAV and prescribed propranolol. i was in time, taken off these because of the side effects. I did go along time before anything else was suggested. Eventually is was then prescribed Pizotifen 0.5mg (which i believe is a small dose)to begin with?
I have only taken these for the past 3 nights and i am finding it difficult to get over the drowsiness! sleeping quite abit and i have woken up with a huge headache everyday(never had a headache with any of these suspected migraines before, just the constant dizziness)
I was wondering if anyone has any advice around their experience,overall effectiveness and how long it took for the side effects to decrease. I also find it extremely odd that i am having bad headaches(enough for painkillers) the day after i started the medication!
I have found this site extremely useful in understanding my symptoms (and believing that i do now have MAV,not Labrynthitis) and i hope to gain insight into treatments, preferably before i loose my job, as well as my independence!
many thanks, in advance
Hey! I just sent a post to another woman about gabapentin. It’s the one drug that enables me to work and function in my life without extreme discomfort due to lights and other triggers for the MAV rocking/dizziness etc… I’m on 200mg 3x a day (8am, 2pm, 10pm). I can’t go higher because it makes me dizzy in another way and weird feeling, but at this level it’s a perfect dose level to suppress almost all the MAV. Hope you feel better soon! Find a good neurologist who helps you trial drugs. I also had my MAV start with labrynthitis in 2013. It’s been hellish but my life has gotten back to semi-normal with gabapentin. I just take courage in the fact that people have a lot worse problems and put my faith in God that it will work out. Topamax works for some, nortriptyline for others. Gabapentin is my #1 (I’ve tried almost all the others but everyone is different). Liv
PS The drug you are on is also supposed to be very effective for some people-that’s one I haven’t tried because I’m in the USA. Gabapentin might be worth trying too if you want. It’s also kind of sedating though-I manage that symptom fine when I stay at this low dose.
Hi, I recently started on pizotifen. It made me very sleepy after taking 0.5 mg in the first few days. But after the first week I started to get used to it and felt better. After building up to 1.5mg in the following 2 weeks the fatigue returned. So I now take the whole dose at night about an hour before bedtime and it has definitely made me feel much better during the day.
I’m now about 5weeks in and don’t feel dizzy 24/7. I have started driving again and can walk without feeling so disorientated and spaced out. I am also doing VRT exercises and I can do these now without feeling bad all day!
Hope the Pizotifen gives you the same relief too, best of luck!
Wow that’s great did u have vestibular migraines … was sleepiness the only side effect u had
I have had severe vestibular migraines since 2011, bad enough to put me in bed for two weeks which fortunately got better after six months just with VRT. Even managed to get back to teaching full time!
Fast forward to July 2015 it got a lot worse - had a very bad vertigo attack whilst out jogging, left me for months unable to even go out for a walk. Finally saw Dr Surenthiran in January this year (after having all the vestibular testing at UCLH and the London Hearing and Balance Clinic). Both diagnosed vestibular migraines.
Dr S put me on pizotifen and it worked, albeit after a few months and gradually, also did the VRT again. I’m still on Pizotifen and 2 weeks ago had a relapse, a 6 hour severe vertigo attack. Saw Dr S and he said I’d been overdoing it and he increased it to 2 mg, with the possibility of increasing it a further 0.5 mg if necessary, if I still experience symptoms.
So far the pizotifen initially made me very sleepy at first and hungry! But my body has adjusted and I have overcome these side effects, I’ve even managed to lose the weight I gained in the first few months. The side effects for me were a small price to pay for not feeling dizzy 24/7, disorientated and brain fog every day! But I’m still to return to work.
I think you really need to take medication to get on the road to recovery from this awful debilitating illness. I just wish I’d seen Dr S sooner, but I am feeling much better again since I’ve increased the dose 2 weeks ago. Fingers crossed!
That’s great u got relief I too suffer from this headaches 24/7 dizziness feeling faint n loopy lightheaded n panicky also I haven’t found the right med yet to help I tried a lot hopefully I can find something living like this is a nightmare that nobody understands or cares
So sorry to hear that Khya. Please keep trying to find the right med for you, there must be one that gives you relief. If you are in the UK, I,'d strongly recommend you go and see Dr Surenthiran. He will get you better! It does take a lot of trial and error to find the right help!
I’ve also started on chelated magnesium glycinate and will add vitamin B2 and coenzyme Q10. It’s worth trying them as there are good reports on here about using these supplements and Dr S also recommended these too.
Please let us know how you get on.
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Thanks I’m currently taking magnesium feverfew ginger root vitamin b2 n vitamin d
Hi Khya,
Have you been taking the supplements for long? Have they helped? I have constant tinnitus too and I’m hoping that they might help with that as well.
Lorri - persistent tinnitus - this is where I don’t believe migraine can be the culprit. I just don’t buy constant migraine activity.
I have had some ENTs think I have secondary Hydrops. I’ve noticed my tinnitus is pressure sensitive too: when I go up to a high floor in a tall building it sometimes becomes negligible or virtually disappears.
I’m wondering if tinnitus reflects blockage or inflammation (or both) or the incorrect fluid concentration in the inner ear. Only time will resolve those things (and I note my tinnitus HAS decreased in stages across the last year of having it). Not sure if the brain is compensating for it and making it less loud though …
Hi Lori yes been taking yr
Hi lorri
I’ve recently seen Dr S too and he’s diagnosed MAV. wants me to try pizotifen too at 0.5. I’m worried about the dizziness side effect as I’m already dizzy. Did it make you feel worse at first?
Thanks
Hi Heart,
When I started Pizotifen, I couldn’t walk without becoming very dizzy and disorientated, but after a couple of weeks of taking it and also increasing the dose to 1mg, my walking improved and I could also do vestibular physiotherapy too.
After getting up to 1.5 mg I improved further. So it didn’t make me any dizzier Heart. But initially I did get side effects: very tired and hungry, but both of these gradually went after a month or so. I made sure too I watched what I was eating.
For me Pizotifen has worked and got me so much better. Good luck Heart, hope it works for you too. Dr Surenthiran knows his stuff!
Thanks lorri. I’ve actually started on pregablin 25 mg and have to keep titrating up every week. Dr S said if I can’t tolerate that then try pizotifen. I only took 3 days of pregablin which made me more dizzy so I was wondering if I should switch to pizotifen. Now I’m thinking that maybe I will feel more dizzy at the beginning whatever meds I take. I’m on the 6C diet too and didn’t want to start the VRT until I was finding some relief from the meds. I’m glad you’re feeling better - gives me hope!!!
Hi lorri
Ok I thought lets go for it. Try the pizotifen. So I took 0.5mg Friday night and all Saturday I felt so drowsy which I can handle but I had bad nausea. Did you feel that? I’m now thinking of trying half the tablet tonight and see if that is any better for me. I know nausea is one of the side effects but I just wondered if that actually goes in time? Hope you’re doing ok?
Hi Heart,
Sorry to hear you’re having a hard time with the side effects. The Pizotifen made me very drowsy and I felt so exhausted, but gradually that went away after a few weeks. It also helped taking the dose at night. But I never had any nausea with them. They made me feel hungry and I initially put on weight. But I got that under control and lost the weight I had gained.
I just hope that the nausea you’re experiencing goes away soon Heart. I am still taking the Pizotifen and after a relapse a few months back Dr S told me to increase the dose incrementally from 1.5mg to 2.5mg. I’ve been doing okay since, but mindful of not overdoing things.
I think you need to give it time to work, at least a couple of weeks to see any improvement, unless you find the nausea is unbearable. Maybe taking the half tablet might help. If it still makes you nauseous, I’d get in touch with Dr S and see what he recommends?
Hope this helps, let us know how you get on.
All the best, L
Thanks lorri
I was finally diagnosed with migraine related balance disorder by Dr S after almost 2 and a half years of different diagnoses by various people in the medical field. I got very despondent yesterday as I have had this for so long and was desperate to be ok on this med. Third time lucky I was thinking after trying venlafaxine and then pregablin. Well I’ve just been out and bought myself a pill cutter so I will try half tonight. I think I’ll stay off from work too this week so I’m not stressing about driving there.
So glad to hear you’re doing ok. It’s hard to not overdo things when you feel better and pacing is hard!!!
I’ll let you know how I get on with the half.
Take care lorri 
xxx
Does anyone think taking 3 medications for mav is to much? Iv wanted to try pizotifen for awhile currently on propanolol and nortriptyline would adding pizotifen be too many meds?