Hi - I’m new to this group. I have been told by an ENT and a neurologist in November that I have vestibular migraine, but in the search for the right treatment , a new neurologist has said it’s not migraine, it’s PPPD. So I’m confused as to what my treatment should be. Can anyone recommend a good doctor/neuro who specialises in vestibular issues/dizziness in Scotland? Or within an acceptable distance to travel to. I think a drive to London would be too much for me. I’m not Able to work with my symptoms and feeling really ill.
Welcome to the group. Unfortunately I can’t help you with a recommendation in Scotland but I did want to say welcome and I hope you are able to get some help from here!
I’m useless on that front, too, living very far away in Seattle, Washington, USA but I very much want to welcome you!
hi and a very warm welcome. I’m in the South West of England a few hundred miles away but I’ve no idea of who you should see in Scotland but agree traveling with MAV or any vestibular stuff is often a no go for many people me included. I remember from years back that there were two ladies from Scotland who did finally, in desperation, travel down to London but by now I’m sure there is increased awareness and you should be able to manage without such drastic measures. Checking the internet I noticed the Aberdeen Balance Centre and the Spire chain make mention. No luck there? The Scottish Health Service does seem pretty much clued up if their published guidelines are anything to go by. Looks good to me. Sorry I cannot currently provide you with a link. Blame my Broadband. Please use the forum’s Search facility and check out Grampian Health. However I appreciate what you need is a consultant who can tell you with some degree of certainty whether you are a case of VM/MAV or PPPD as the two are treated somewhat differently. Search out a neuro-otologist if you can find one or alternatively set about a more thorough research yourself (self help/self advocacy is the best route for vestibular conditions for many). Read more about both conditions and work it out for myself. It’s much a case of Tick Box exercise and you will be doing very much the same as the ‘experts’ do when offering you a diagnosis. There are no specific tests either way for either condition. It tends to be educated guesswork. Helen
Thank you everyone for your replies. I’m considering trying to get to Liverpool - I’ve read on this forum that Dr silver is a good neuro to see. I’m so ill with my symptoms just now - I’m worried the longer I go without the right advice will make it harder to recover from.
Dr Silver is well known in the field but there are not that many specialists around in the UK and they all sing pretty much from the same hymn sheet. They all know each other, small world. The neuro I have seen knows Dr Silver. They all adhere to the NHS guidelines. Sure he’ll be able to give you a more accurate diagnosis which is what you really need. You will find many references to him on this site (most I posted) including the Walton Centre Migraine Patients Guide which is very detailed and available on the Centre’s website. He’s a firm advocate of a strictly no caffeine and no painkillers regime for one. I expect he can help you. Just hope the waiting list isn’t too long however in the mean time try to reduce all stress as much as possible and try not worry because both things are strong triggers. It’s unlikely you’ll get anything like an immediate appointment but a wait won’t prove detrimental. I waited 12 years untreated for a diagnosis but I survived and improved following medication so please don’t get into a worried state if you have to wait a while. All the best. Helen
Hi, here’s a list of Vestibular Experts in the UK from the Meniere’s Society Website:
There’s a few in Scotland on there.
Well done. I’ve never seen that before. Certainly worth knowing about. Gives people floundering a helping hand to know where to look.
Good share! Nice list and a lot of familiar names.
I’ve updated the Wiki with a link to this as it’s very good indeed.
Thank you so much for this list.
Do you know if an ENT consultant advise on medication? Or is it best seeing a neurologist for medication?
Has anyone on here worked with an ENT consultant for VM treatment?
I’d go for a neurologist every time. Once you have a diagnosis and if you are advised to take preventatives, make life style changes, diet etc some consultants will manage you through or send you to a Headache clinic but most just advised preventatives and leave the rest to your doctor. Ultimately your health is your doctor’s responsibility and he/she will have final say which drug best for you to take bearing in mind your medical history and any other existing conditions.
Neither consultant I saw (one neuro-otologist and one neurologist migraine specialist) would get involved in management. They just gave diagnosis and advised preventatives. That’s the advantage of Dr Silver, Mr Surenthiran (In Kent) and a few of the more well known names you will hear on here from UK posters They do all follow through with management and because of their level of footfall may have a slightly better educated guess at what med to start you on and what levels but really that is - as my Migraine Specialist says - just guesswork. What will work for you. Trial and Error it comes down to in the end and if the management is left to your own doctor they will follow the NHS guidelines, see Grampian ones I referred to previously. Most of the worksheets they work from are posted on this site around and about. Including the full Walton Centre Guide from their site. Helen
Thank you Helen.
My GP seems to just not care. I started on nortriptyline and I couldn’t sleep on it - went to my GP and he said to come off it and start propranolol - I couldn’t manage the 20 mg on propranolol as it made me so depressed and lethargic. Started losing a lot of weight and then went to see a neurologist and he suggested Topomax - which I didn’t want to try because of weight loss - so I then tried Pizotifen and it was like being given a tranquilizer - GP told me to stop it straight away.
I then went to see another neurologist who told me medication isn’t for me and I’ve to see how I go using supplements / diet / CBT and if I can’t improve they might look into Gammacore device.
But I feel so lost - I can’t function - I have bad sleep and my anxiety is awful. I’m heartbroken. My life is on hold. I’m seeing my GP today - I’m thinking of asking about metoprolol or venlafaxine -
I just can’t get through this without a medication or support from an expert.
Ah your history’s helping a bit. I thought you were still seeking a diagnosis. With UK NHS management or lack of it is a main problem. Few consultants offer it. I’ve had to get through totally without it. Not ideal by any means. Quite the contrary. It’s a lonely road treatment and that’s why such forums exist I guess. Not that I found this one until I’d more or less self sorted but that’s another story. Actually you will find you are a lot stronger and more able to cope than you think. Everybody is. Believe me and if you don’t read some of my PD. You need to stop worrying, accept you will get it under control but that it will take time but it will eventually improve. Try not to worry.
Go to your doctor and tell them exactly what you just told me. You feel you need somebody with more experience of vestibular conditions to manage you through this. Ask if there is a Headache Clinic to which she can refer you. If not then, as I see it, your next best option is to follow most recent Neuro’s advice and give the non medication route a good try for a couple of months and just grit your teeth and get stuck into it wholeheartedly.
Like many others with MAV you are med hypersensitive. That’s common. I’m no doctor so really shouldn’t be saying this but if Propranolol upset you Metoprolol will probably do likewise and besides it’s not got such a good reputation for MAV as Propranolol so I’d steer clear and ask for Venlafaxine which is fast gaining a good reputation. However before you do that, do have a read of some posts on here relating to Venlafaxine. It’s not an easy drug to take and even more difficult to quit. Whatever drug you do try you will need to start off very low and slow. It can take many months to reach an effective dose of Venlafaxine and it makes many people worse before they are better. Many other drugs are very similar and for many people, not just Mavers. I was warned by my GP about Citalopram. She said to expect to be worse for 3 weeks before seeing any improvement at all.
Sorry if you think I’m worrying you now. Just trying to help you make an informed decision which way to go. You could look again at Pizotifen. It could just be you started taking too much far too quickly and didn’t allow your sensitive body time to adjust.
Whichever drug you decide on do search this site for information. You will find people who have had success with Pizotifen and Venlafaxine and a lot of that was down to introducing it at such low and slow levels over a period of time nobody but another MAVer would believe necessary. One further warning: nobody but a few top specialists and other sufferers, certainly no GPs would believe such sensitivities possible so don’t even ask them.
Do let us know what happens next …. Helen
Venlafaxine is a good drug. After multiple drug failures myself, I’m doing well on Botox. I trialed but failed the GammaCore pretty quickly. It had promise but was very expensive and didn’t help as much as my Cefaly.
You will get thru this. You will feel better. It takes a long time but you will find the right mix of lifestyle mods, diet mods and medicine to allow you back your quality of life. I’ve had MAV for many years, seen many doctors, had all the tests, failed lots of meds. I’m living at 80-95% most of the time. You’ll get there.
Hi, I am from Glasgow and suffer from vestibular migraine. I would highly recommend Alison McKinnon (Vestibular physiotherapist) - she is very knowledgable about vestibular disorders and was the first healthcare professional to ever mention vestibular migraine to me. I had a 1 hour appointment with her initially where she done an in depth assessment to help diagnose me. I then seen Dr John Marshall (ENT consultant) who confirmed my diagnosis of VM and put me on nortriptyline. I am now doing really really well and working full-time with the NHS but I was also in a bad place in the beginning like yourself.
Thank you so much for your reply Lois. And so so happy to hear you can get better from this. How long did it take for you to get back to work? I was given nortriptyline in December but I couldn’t sleep on it - it was like it activated my brain. Stayed on it for two weeks then my GP took me off it. Now that I’m learning more and more about vestibular migraine - I’m worried I came off the nortriptyline too soon.
I have seen Alison and she’s great, I’ve been doing the exercises - however I’m now looking into what my next medicine should be - possibly Amitriptyline - (I’ve also tried propranolol but it made me so flat and down, had to stop that). I really hope I can find something that my system can agree with.