Migraine associated vertigo and pizotifen

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Anyone any ideas on this?

i have suffered terrible vertigo for 6 months and it is most likley labyrinthitis but my GP had an idea it might be Migraine associated vertigo due to the sinus pain, pressure in ears and sensitivity to noise and bright lights and motion intolerance ( like Mal De Debarquement syndrome...constant up and down motion) No headache but had definite sparkly aura in left eye one morning. He has given me 0.5 mg Pizotifen to try.

Anyone any ideas on this or tried similar?

Does it build up over time..the pizotifen, I mean.

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  • Posted

    Replying to Linda.

    I had suffered vertigo as well since september 2006 - diagnosed with labyrinthitis. I then got fed up because it wasn't improving and saw another ENT specialist. He thought i might have vestibular migraines (without the migraine pain, but vertigo). I was prescribed sandomigran 0.5 mg to start & i have stayed on that for nearly 4 months. I feel it is working. I am finally getting back on track with work etc.. Still have slight dizziness in background but much better. Give it a go & see. Keep me updated.

    Cheers, Emilly

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    • Posted

      Hi I've just been put on the pizotifin as have had dizziness for last 6 months came out of nowhere for labyrin test and balance test have all come back normal. It's only day d on tablets but they are making me very tired and worried about the claims they make you increase weight rapidly . Just had an mri but still can't see the light at the end of the tunnel .
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    • Posted

      I understand your frustration, worry and despair about how you feel. Loss of balance and dizziness can be very frightening. It's perfectly normal to feel tired or even exhausted as normally our balance is managed subconsciously by the brain taking inputs from our eyes, muscles and ears. However when there is a disturbance in this system balance problems and dizziness can occur. When this happens the brainpower required to compensate for this disturbance increases dramatically and saps most of your energy as you struggle carry out the most simple movements. When thus happened to me the outside world felt surreal, my head felt as heavy as a bowling ball and I could barely stand up. It took around a month before I started to feel normal and then slowly but surely the dizzy spells reduced to nothing. Please don't despair and just make sure your doctor determines the cause and provides the right treatment. In the meantime try and relax and accept it may take some time to feel normal again. Best wishes for your recovery.
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    • Posted

      Thank you for your response so did you try the pizotifin and it worked within a month??. As I have had this now for 6 months . If so how long did you stay on the tablets?. 
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    • Posted

      After the sudden attack of vertigo I was referred to a neurologist. After MRI and all other test results came back negative the neurologist said the vertigo attack could have been just a viral infection or a disturbance of balance input signals to the brain - possibly caused by migraine. His aim (and mine) was to reduce the number and severity of migraines I was having. He prescribed a daily dose of Amitriptyline starting at 10mg titrating to 30 mg within a couple of weeks. Like you I was concerned about side effects which can sound quite scary when you read them. However I'd reached the point where I'd try anything to restore my balance and reduce migraine attacks which in themselves often made me feel dizzy and unsteady. The first couple of weeks on Amitriptyline made me feel quite drowsy through the day but I started sleeping better than I'd done for years. I also had a very dry mouth for first couple of months but all these side effects disappeared after about 3 months. I've now been on Amitriptyline for 8 months and they have certainly reduced both the frequency, severity and duration of my migraine attacks by at least 50%. I also use Eletriptan for those occasions when a bad migraine breaks through and this drug completely stops the headache within 2 hours. So based on my experience I would say try and give a reasonable time for Pizotifen to work and tell your GP about any side effects you experience. There's usually alternative drugs your doctor can try if Pizotifen doesn't suit you. As for risk of weight gain I'm convinced that preventing this is within most (otherwise healthy) people's control. I'm almost certain that my 'out of the blue' vertigo event was due to frequent and severe migraine attacks. I'm due to come of Amitriptyline in July by which time the consultant thinks my migraines should have 'reset' to a lower less frequent and severe level. I'll keep you posted!
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    • Posted

      Thanks for that yes I will give them a go that's for sure strange thing is I do get head aches but wouldn't say migraines really with me it's been the dizziness full headed spaced out feeling . Blurry vision etc you know where I'm going with all this you get fed up repeating it. Rest is also a key factor . I am pretty certain my mri is going to come back with negative results just leaves you in limbo . With so many people suffering these episodes it's unbeli that Drs don't seem to be able to advise or pick up on it . Thanks for your response and its watch this space.  One quick question would you declare the condition on holiday insurance as we are about to go away and I havent????
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    • Posted

      It's funny you mention holiday insurance as it was just a few days before we were all set to go abroad last September when the vertigo struck. I was hospitalised for two days and had no problem getting my doctor to sign the travel insurance forms for me and my partner to claim back costs of cancelling the holiday. My travel insurance then expired a month or so after this and I thought I'd better tell them I suffered from migraine. After leaving it with them for a couple of hours they came back and said the vertigo event and the migraine diagnosis would not affect my renewal premium. So to sum up I would always declare a medical condition prior to travel otherwise you may find you wouldn't be covered in the event of a problem. It's just not worth the risk as cost of medical treatment abroad could easily bankrupt the less wealthy amongst us! By the way I have often had the spaced out, unsteady feeling and full head pressure head symptoms which are all classic migraine symptoms. You don't necessarily have to experience a headache every time you have a migraine. Have a great holiday and never give up trying to get the right treatment as I'm sure you'll find something that works for you.
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    • Posted

      Can migraine associated vertigo last allday every day for 9 months or longer

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    • Posted

      Yes,absolutely! I have been suffering since September 2016 and have tried various medications, including: Propanolol, Amitriptyline, Duloxetine, Betahistine and now Pizotifen. 

      What have you tried?

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    • Posted

      Hi Paula... I doubt you'll ever see this now, but if you do happen to, can I ask if you ever got better from this condition? Any advice would be greatly appreciated.

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  • Posted

    I started suffering from vertigo attributed migraines 5 years ago (or at least this is the most likely diagnosis I am given). After trying propananol which just knocked me out, I tried Pitzotifen which has been a wonder to me. I started on 1mg and now have to take 1.5mg as the lower dose started not to work.

    For me it is a godsend as I am unable to drive or work properly when I have a vertigo attack. Just missing one dose before I go to bed means I suffer the whole of the next day until I take another does and sleep again.

    My mother starter suffering at the same age as me (ealry 30s) and now she is in the menopause it has stopped apart from the occaisional attack.

    I do suffer terribly from inertia in the morning (or is that laziness?) but it allows me to hold down my job and be normal, so I have no complaints.

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  • Posted

    I to have been prescribed pizotifen for vertigo attacks, my ENT thought it could have been Meniere's Disease, (I also suffer from tinnitus), but the pizotifen would be worth trying. Have been taking 1mg at night for 6 weeks, (started before that on 0.5mg) and have not had an attack since. Increased eating is a problem, and am getting pains in my lower legs and feet, but anything is better than the vertigo. Its working for me at the moment.

    I feel that sleeping position is also a factor, and have several pillows to avoid lying flat. Has anyone else found this?

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  • Posted

    I found the list of your symptoms interesting - I'm a chronic daily headache/migraine sufferer, I've had bouts of vertigo or dizziness the last 4 or 5 years, (I'm now 46) I also have tinnutus (again perhaps started 4 or so years ago). I've always felt there must be a connection between the three. I wonder how many migraine sufferers out there also have these symptoms? We could be discovering a new phenomena!

    Doctors say to live with the tinnutus (well that's what I am doing!) and the dizziness is 'probably a virus' (labyrinthitis?) which I've never believed. Haven't had any dizziness for a few months now, but it does tend to pop up unexpectedly, last about a week and slowly disappear. I've taken sumitriptan for migraines initially, but ended up taking it almost every day the last few months, (and I was taking 2 cocodamol every day as well) so for the last 6 weeks I've stopped the cocodamol, and I've been on amitriptyline, up to 50mg now. At first, had lots of headaches, tried not to take anything, and now I've actually had 3 or 4 days a week without a headache - amazing. Dry mouth, bit more lethargic (hard to get out of bed!) but that's it for symptoms. For those taking pizotifen and not finding relief, ask for amitriptyline. And by the way, for all those who don't get on with pizotifen, my friend takes it and never gets headaches anymore and is very happy - so not everyone gets the bad side effects.

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  • Posted

    Hi

    I've just found this site as have just been prescribed Pizotifen for migraine. The link between migraine, dizziness, visual vertigo, tinnutis and other vestibular problems is fairly well documented - unfortunately not many GPs know much if anything about it so it gets misdiagnosed.

    I have had dizziness and a whole host of other symptoms including migraine for nearly 5 years now. I was continually told it was stress until after about 3 years I was diagnosed with inner ear damage by a neuro-otologist in London. I have not responded to the standard treatment for inner ear damage (vestibular rehabilitation therapy) so they are now treating the migraine with pizotifen in the hope that once I stop having the migraines I will respond to the other therapy.

    There is an excellent patient led website (dizzytimes) which gives lots of info about migraine associated vertigo if anyone is interested.

    Hope this is helpful

    June

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