Hi, I’m relatively new to this site although I’ve been lurking around for a while. I’ve had dizziness problems for 10 years (I’m 46) and have seen all sorts of specialists and tried all sorts of treaments over the years. I’m under the care of Professor Luxon at the National Hospital in London. To cut a long story short I was diagnosed with Menieres in my right ear in February 2013 and this year she has also diagnosed me with MAV. She put me on amitriptyline and told me to come back in 6 months time. To be honest I haven’t really found that it has helped me at all in anyway but I’m also aware from reading other posts on here about Professor Luxon that she only uses 3 drugs and there isn’t really much follow up. I’ve now decided after reading all the useful information on here that I’m would like to go and see Dr Silver and I was wondering if anybody could tell me how much a private consultation with him will cost and also if I saw him privately would he then be able to see me under the NHS thereafter? I did go and see Dr Surenthiran but to be honest I’m not sure if he was having a bad day, but I didn’t feel that he listened to me and didn’t really let me speak and ask questions. I also wondered if anybody knew what his waiting lists are like both privately and under the NHS?
I started with Prof Luxon as well and was also put on amitriptyline. However, as my MAV got worse (and I developed pain as well as vestibular symptoms) she referred me to Dr Matharu who is a migraine specialist at Queen’s Square. He runs a private clinic on Saturdays and is very good. He is certainly not reluctant to prescribe a range of drugs (including anti-convulsants) and to combine drugs as well. You may want to give him a try.
Many thanks for that, I didn’t realise that there would be a migraine specialist I could see at Queen’s Square so I will perhaps look into seeing him instead. It would certainly be easier for me to get there as I live in Norfolk. I’ve been dizzy for so long now and getting worse (I think my age might be a factor with hormones making things worse). May I ask what drugs are you now on and have you noticed much improvement in your symptoms?
Thanks for posting on this MAV site - it’s been very helpful to me!
I was very curious which anti-convulsant helped bring your MAV under control in the end (I am so sorry to hear about your story as well - these symptoms are insane to deal with particularly if you’re trying to work in a fluorescent lit office!) - your symptoms and onset are exactly the same as mine! I’ve suffered for 3 years with it.
Are you on topiramate/topamax now? May I ask what dosage you take?
Do you take anything else - I’ve just started topamax and get some anxiety with it (a bit more irritable/impulsive behavior) and was thinking of taking something like clonazepam along with it if possible as I titrate to stabilize at a higher dose after a few months.
Did you take anything while you were titrating it to help with that? Do you do anything to specific avoid kidney stones if you are taking a higher dose of topamax?
Thank you in advance for the advice!
Many thanks for your message. I must confess that I have not been on this website for well over a year now, and that largely reflects the very good progress that I have made after a torrid 18 months. As you know I was referred to Dr Matharu, a migraine specialist at Queen’s Square, who tried me on a range of drugs. The first 3 to 4 were ineffective and came with intrusive side effects. The process was slow, frustrating and I had to take 4 months off work because my symptoms had become so debilitating. I then started on Sodium Valproate, an anti-convulsant normally used to treat epilepsy. Within a short period of time I started to feel better and I have gone from strength to strength ever since. I am now on the maximum adult dose and whilst I still do get symptoms they are very much ‘in the background’ and there are days when I can simply forget about MAV altogether. In the same period my wife and I had our first baby and I have even coped with that, which must be a measure of success!
I wish you all the luck in the world with your illness: please take heart from my story. I know it is easy to read entries on this website and to doubt whether people really do get better. There is a lot of misinformation out there. However, I am (I think!) an entirely normal victim of this illness and I found a medication that works for me. You will too.
just wanted to say congratulations on your recovery and your first baby! Wishing you a new year that has even more pleasant things in store!
I cannot thank you enough for your reply and for the mention of sodium valproate - and that you had to be on a maximum adult dosage to get the MAV symptoms to go enough into the background that you could live a normal life again. I too just want that and go back to the way I felt (or as close as I can to that) before this hit me and changed everything in April 2013. I am seeing my new neurologist today and will discuss with her whether to stay on topamax (just titrated up to 50mg last night and seem to be doing well on it so far this morning - had switched to brand name rather than generic last week to see if it reduces some of the side effects I was experiencing), and if I don’t get enough relief at a 50mg (or slightly higher) dosage of topamax, I may experiment with sodium valproate. Your testimonial about your symptoms and onset are almost identical to mine - I was under stress at the time finishing a PhD when this hit and had some type of virus at the time, I was very fatigued and then vertigo happened all of a sudden along with light and sound sensitivity. Many congratulations to you and your wife on your new baby and I wish you continued success with the sodium valproate! This just gives me all the more faith that with the right drug and dosage everyone can get well from MAV. Thank you again.
Best wishes and happy holidays,
And I hope you’re doing well too, Asli!! Happy holidays to you as well - thank you again for all the kind words and encouragement on this site. xx
Hi Olivia -
I am going down the neck route at the moment. It was physical therapy to my neck that had started intermittent dizziness and it was after overstretching it that it became chronic over a year ago. In the mean time I started acupuncture to relax my neck muscles - it helped very fast, to my surprise, but then I got excited and decided to help myself by doing neck exercises and now I am back to where I was plus a sore neck, shoulders and upper back… I don’t know how sensitive one can get to the lightest stretches… In the mean time I am tapering down on the Nortriptyline 50 mg since it didn’t really make me feel any better after 25 mg…
Wishing you a year of complete relief from the world of MAV. Hang in there !
Happy New Year to you and all fellow sufferers!