Hi guys, I have had migraines all of my life but have been suffering with vertigo for a few months now with no relief and my gp has reached her limits on treating me with propranalol/Amitriptyline/topiramate. I’m not dealing well with them and not getting any better.
She has referred me to neuro but I’m told there’s a wait time in an excess of 40 weeks!!!
Does anyone have any private Dr recommendations and any idea of cost? Any help is appreciated!!
I’m based in the UK, south west but I’m willing to travel!!
Not far from @Onandon03.
Have you looked at the list linked in the Wiki? Types of Specialists
Thank you!! I’m only seeing lots of ENT specialists in my area, I’ve never had any ear problems. Do they still deal with migraine associated vertigo? Sorry I’m new to all of this!!
You need to look for an oto-neurologist on that list.
Neuro-otologist, also called a Neurotologist or an Oto-neurologist
Also sometimes called “Audio-vestibular medicine”
Agree though there are a lot of ENT’s on that list that are less useful for this condition.
How far west? Suggest you try either a Spire hospital or one of the Circle group. I saw a neuro-otologist in Bristol who diagnosed me but as VM is outside his sphere of interest he doesn’t offer follow up presumably imagining that is the sphere of your own GP. I have seen Dr Nicola Giffin a specialist migraine neurologist. There are no balance centres out west. There is a specialist headache clinic private in Exeter but only sees Devon residents. Yeovil hospital has a headache clinic under a Dr Fysh but then you are back to long waiting lists I suspect. I can look out several others the neuro-otoligist wrote to me post diagnosis when I was in similar situation to yours currently in Bristol, Gloucester and Cheltenham areas from memory but I know nothing about them. If that’s where you are looking I can look them out. Let us know how you get on.
It’s highly unlikely you will get ‘ongoing managenent’ offered but specialist can give you tips GPs just don’t know and even prescribe some drugs GPs cannot or indeed increase doses of known doses higher than those GPs dare to use except under consultant instruction. This happened to me and such can make all the difference.
Of course there more to it all than drugs. You can read up on here about diets and lifestyle changes, trigger avoidance etc. Like me you may find in the end you have just got to work out all the finer detail yourself. Helen
Oh, ENTs. I don’t have a good word to say about them with regard to VM. Seems those out west are way behind some other places. Always found them complete waste of time. I saw four different ones at least possibly more and none had any clue.
Thanks so much for the reply!!
I’m near Bath so looking Bristol-ish way but I’m prepared to travel! My GP spoke to Dr Giffin who initiated my treatment and reccomended I be seen my neuro due to my history of ongoing migraines since 13 years old. I’m only 24 and it’s ruining my life! This is my first real ‘vestibular migraine’ attack so we all feel it’s better for me to be seen by someone with neuro background.
I’ve cut out caffeine and tried the headache diet but only really found lack of sleep a trigger, but I’m an A&E nurse so sometimes my shifts play a part and I’m used to being so active - it’s killing me!
My GP just doesn’t really know how to manage my doses and doesn’t really feel comfortable managing me which I can understand so I just need some expert advice really!
I’m willing to travel anywhere in the country to see someone if it means I can have a start on getting well again!
Also, would you recommend seeing Dr Giffin privately?
I’ve found a professor Saeed in London who claims to have an interest in vestibular migraine. Unsure of his background though whether it’s ENT or Neuro!
Yes. I have seen her twice now. As you are a long term migraineur I would certainly recommend her. If you book through the Circle website I expect you can get an appointment within two weeks privately.
If it carries any weight with you she was the first to use Botox for migraine and write it up. She has written a few papers and done much research. She certainly understands migraine and is extremely empathetic and pleasant. Very quietly spoken. I certainly wouldn’t travel to London at this stage.
Btw you can read what she said about vestibular migraine to me in my diary. I saw her in February 2017 and October 2018 so check through my diary posts about then.
Turns out she works at the RUH which is where I’ve actually been referred so works well with no travelling, thank you so much!!
Oh I know. Was about to tell you that once I saw you nurse. I guess you are there working too?
Wow I will have a look into getting an appt with her, thank you!
How can I view your diary posts? (I’m new here sorry!)
Thanks so much for your help.
All Diaries are in #personal-diaries
Helen’s is also linked from her User Card which you can get at by clicking her (currently orange) avatar.
Btw, click the User Card to get even more user information about Helen and you can see it’s in her Top Topics.
Do let us know how you progress.
We’ve had quite a few young people with a similar history and who work in similar environments pass through here and it seems they usually end up either with an oral drug combo (which most GPs don’t usually want to become involved with) or maybe one oral preventative plus Botox and it’s unusual to get that complex without having had advice from a specialist. Your GP was following NICE guidelines in prescribing those drugs. Usual procedure. As you said time for some specialist intervention. Good luck. Btw you can PM (private message) me should you feel the need by pressing the little envelope icon. Helen
I saw a neuro who put me on a large dose of amitriptyline which seems to be doing the trick and I’m 90% better, just very tired. Started going back to work now and have a good plan of meds to take when I do get another. Thanks for your help!
Well done. Pleased you can tolerate Ami. It’s a NHS First Choice for most. Tiredness is common as is weight gain. Hope it’s not too high a dose cos the latter tends to be dose dependent. Thx so much for the update. Helen