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Saw this on FB - if ur in the UK Dr S is the guy

This was posted in the vestibular forum…

"Omg dr surenthiran is amazing!! If you can afford to see him then go- it’s fab to speak to someone who ‘gets it’ and knows how to make things better!! "

If you have to wait a while to see Dr S so what hes the guy in demand so thats understandable…and the wait will be worth it from what ive heard from many many patients…

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Another ad.

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Ad ? - was from a patient that saw him…I can only post what I see…if there were negative comments about him I would post them but so far have only heard good things apart from one person who had some appointment issues. We are here to get the best help …if someone else is equally as good let us know and I will promote him as much …unfortunally there seem to be a lot of consultants who dont seem to care or dont fully understand the condition…If anyone else wants to give their opinion please chime in… paul x

Yes, there are several board members who see him, he’s got a good rep. He’s supposed to have helped 1000’s of patients.

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I saw Dr Surenthiran back in April. I totally agree with @Paulus he really gets what you are going through. For the first time in years I got an answer for all my symptoms, he has started me on new medication and the restricted diet. He is honest as says it’s not a quick recovery but at least he has solutions.

I would recommend for everyone to see him.

Steady on … he might be good and have a great protocol for helping sufferers, but I’m afraid no-one knows the real mechanism behind most of the MAV symptoms - take vertigo as just one example - simply no-one has proven what goes on during a vertigo attack, its all just hypothesis.

All I meant was I had all these symptoms that didn’t make sense and for once someone was able to explain it and get it

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Sure, apologies for being a bit glib. We are all fortunate to be in an age when they can at least treat the symptoms pretty well. I was a complete mess before I started meds and wondering if life had any point anymore.

That’s ok. I was started on pregablin eight weeks ago, however I’m still having a lot of bad days with dizziness, head fuzziness and ear pressure. Just hope I will start to be me again soon. :blush: From reading your posts sounds like you are doing well

Oh so much better thanks, but not out of the woods yet. But having pulled off 4 flights and a major trip feeling like MAV is no longer such a limitation on living. Good luck with your med and remember there are other options if you feel it’s not working for you.

How long did it take for you to feel more like yourself? Hope you don’t mind me asking.

Don’t think I’ve got there. YET. But significantly better after about 2 months. Then ups and downs for another year or more. Expect recovery to be very slow with many relapses. MAV is really rubbish!

Thanks for your honest advice :+1:

One more thing: amitriptyline helped me within days with further help at higher dose. Only went up once after starting med. Eliminated most nausea and dizziness but some days you get creep through symptoms. Take those on chin. Then just get on with life and distract yourself as much as possible. Bad days can be disheartening but know you will always climb back to better ones again. And your best days will get better, your worst days less bad. You will never go back to pre-med hell.

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Yes I think you are totally right. Have to keep busy as much as we can. During my bad days feel very low at times. But as you said I’m hoping my bad days will reduce and my good days be better!! Thanks again, you have given me a lot of reassurance.

just don’t lose heart when the bad days come … this is a loooooong haul … basically if I’m right your ear has to heal and its known to take aaaaaages because its fighting pressures and variable head pressure … then once its healed the inner pressure has to calm down … and that takes months and months … so all in all its a looong haul … so you have to be REALLY patient…

Hi. I spent some time with this dr. And to be honest it’s just about managing the symptoms. I wasn’t happy with the level of help from this dr. He spent petty much 2 mins with me and I really wanted to spend longer with the dr to talk about things etc.

I ended changing specialists and now see the team in London who are a team of specialist in neurootology and I’ve had lots of tests there and they spend 30mins per session with me. They seem to understand more and just seem to care.

This dr s did help me and is a nice person but it all just seemed very rushed. Hope people are trying to get to the bottom of the problems they have

My only problem with the current ‘fashion’ in ENT is that I don’t believe ultimately neurology covers enough of the problem. I’m certain the issue for me is to do with a leak … so whilst the neurologists can help me with my symptoms, I’ve still got a leak which no amount of medicine is going to plug … I spent 5 minutes with an oto-neuro surgeon however, and he was like: “you’ve had a fistula” … trouble is the surgery for fistulae is extremely unreliable … so that leads me back to the medical management hoping nature will fix the leak for me …

What do you mean by a leak?

After having done a lot of reading, I’m totally unconvinced that ‘MAV’ is caused by migraine. I suspect that there are many people walking around with fistulas, which cause a leak from the inner ear. This is well known to give you migraine and chronic vestibular problems (and all the rest), and I suspect that they are far easier to ‘acquire’ than medical dogma would suggest. Part of the problem is there has, up til now, been no test for them … the Japanese have just concluded a first trial testing the efficacy of a test for perilymph fluid in the middle ear (proof that a fistula exists). This trial also showed that fistula’s without any history of trauma are more common than ENT’s currently give credit. Interestingly, the solution to a fistula is usually medical management and time to let it heal, so a symptom management regime is still appropriate (and does not undermine what Dr S. and colleagues are doing - surgery fails 66% of the time). I still don’t like the BS that is talked about MAV though. To my mind its just a ridiculous fanciful story that a headache can cause such extreme symptoms 24/7, and one day you just wake up to find your brain is causing mayhem, whereas the day before it was completely fine?!