Hi the thought occurred to me that I should let you know about my consultant. He is a neuro-otologist based at Medway Hospital in Kent, England. His name is Mr SS Surenthiran and he is one of few in this field in the UK. He is head of the the balance clinic at Medway, one of only 3 in the country. He sees patients from all over the country, as well as Scotland and Europe. He is in such demand I saw him on a Saturday on the NHS.
If you google his name you will find a whole load of articles and info about him and various balance/virtigo conditions. Look out for the one on the Guardian newspaper website. My dad read this article in his paper and sent it to me a year ago. That led me to think I had BPPV but my GP tested me and did not find this so she concluded it was labirynthitis. Because my condition did not improve I was sent to my local ENT clinic which was at Medway and the consultant suggested I be referred to Surenthiran and success at last. Not only am I on Nortriptyline and the migraine diet, I have to do daily exercises to help retrain my balance. I will also be having further physiotherapy and breathing therepy to prevent the palpitations and breathlessness I get with attacks.
I hope this info helps, especially if you are waiting for a diagnosis.
Hi Radhika,
I am also seeing Dr Surenthiran, and have found him to be an amazing help not only on a practical level but also with his patience and calm holistic words.
I would definitely recommend any UK sufferers to see him if they can.
How much Norti are you taking ? I am on 20 mg, and about to go up to 30 mg if I donât feel fabulous in a few weeks. It has helped, I have had the best 10 days I have had for 6 months, today was less good but the weather is going crazy and I seem to be really effected by low pressure and stormy weather.
I am doing the diet , I am so bored with food but it seems to have made a difference , butter and tomatoes seem to be bad for me as well as all the other things that we know about.I have to start the VRT , although I am scared it will make me worse.
Anyway , just wanted to share my positive experiences with you regarding Dr S.
Hope you get better really soon.
Take care ,
Penny
I am delighted things are improving for you. I am now taking 30mg of Nor and have been on the diet for 7 weeks since my diagnosis. Have you been told to keep off the 6 Câs. This is what I have to do and also the exercises. Things improved dramatically til we went to Butlins and it has taken me 10 days to recover.
I am also struggling with food ideas. I find food with âflavouringsâ give me a problem but I havenât noticed anything with tomatoes or mushrooms. I have scoured my local health food shop for ideas and have switched to soya milk which I like. There is some issue about soya products but I have found the milk ok. Watch out if you try Alpro yoghurts and desserts. They have additives (flavourings) which seem to upset me but that was just after we came back from Butlins so I might give them another go in a couple of weeks.
I have also found Oatly cream (Waitrose and health shops) which is nice and free from additives, as well as low in cholesterol. Make sure you keep it in the fridge before you use it so it thickens and feels like double cream. Thay do a milk but I havenât tried that yet. I donât like my food dry so finding a sauce, dressing or gravy has been difficult. I am trying a mayo alternative that seems to be fine. I havenât tried soya ice cream yet but I am guessing it will have flavourings.
Hi Radhika,
Thanks for your info. I live in italy so all the yummy and possible Waitrose things I canât get , but I can get real fruit ice cream made with only real fruit and no milk so I guess that evens us out !
I will keep the list and use it when I next visit the UK, if I am brave enough to risk the flight. This summer I spent eating clotted cream everyday in Cornwall ⌠not a good idea, somehow I thought it was ok, but Dr S put me right when I saw him at the end of my holiday, after 3 weeks of relapse dizziness.
I am sure Butlins food was full of all sorts of things that upset you.
Did you find the exercises made you worse at the start ? if so , right away or the next day ?
What do you do about butter ?
I agree about sauces, food is always dry for me now.
Keep going !
I also see Dr. S All I can say is thank God for him. GP had me thinking I was nuts for a year!! Just wish that I could see him more! He also told me to see the respiratory therapist, but not had an appt. yet. I get palpitations as well (mainly when I take the Nortriptyline)⌠Are you doing the breathing therapy? If so has it worked?
Hi Chris,
Iâve been seeing him for 2 years. Tried Pizotifen as well - HORRIBLE stuff⌠Doing VRT (not seeing any change) & started Respiratory Therapy last week (???) Not sure why⌠apparently I breathe weird⌠I think that my MAV is probably down to Gentamicin poisoning, but wonât know for sure till I see him again September 2nd. I was given Gentisone HC ear drops around the time that my MAV started, for an ear infection⌠either that or I am just a hard nut to crack! I asked Dr. S if he liked a challenge & if so he has his work cut out for him! How long have you been seeing him?
P.s. If you are ever offered Gentisone (GPâs seem to love it!!) Avoid Avoid Avoid !!
Iâve only just started seeing him, early MayâŚI read a couple of your posts about the GentamicinâŚI cant believe they would prescribe something that had that potential. Iâm sure Dr S will put your mind at rest about it though
He also mentioned the respiratory tests to me. It must just be something hes keen onâŚMaybe he feels there could be a link and likes to eliminate it???
He also mentioned the respiratory tests to me. It must just be something hes keen onâŚMaybe he feels there could be a link and likes to eliminate it???
I see Doctor S because I could find no specialist here in Italy. At the balance centre of the hospital they told me it was probably MAV and gave me Flunzarine and told me to go away for 3 months and basically shut up. I asked about food , if I should avoid anything and they said no , they didnât want me to ask questions, and as I was freaked out about what was happening to me , I needed to ask a lot of questions .
I didnât feel comfortable with the med as I read it was not a first time MAV med ,I didnât feel comfortable with them , then found this site , and got through to Doctor S.
That is why !!!
And I am doing really well.
Good luck to you all,
Penny
Glad youâre doing well PennyâŚSlightly off topicâŚWhere do you live? Iâd love to live there someday, my family routes are all from Puglia, personally Iâd like to live somewhere in Liguria though
Very nice, Iâve not yet been to Florence, its on my âto doâ listâŚI was back and forth to Italy regularly before this problem hit but I havent been in over a year nowâŚWhen I get this fixed Iâll make up for it
Yes big problems, I just flew long haul after over a year of only short flights to the uk to see Doc S.Flying any distance at all made me dizzy for at least 2 days after
Did Italy / LA again a month ago and had no problemsâŚfinally, it felt like a landmark !!
Hope you get to Florence soon !
Penny
All I can say is thank God for him. GP had me thinking I was nuts for a year!! Just wish that I could see him more! He also told me to see the respiratory therapist, but not had an appt. yet. I get palpitations as well (mainly when I take the Nortriptyline)⌠Are you doing the breathing therapy? If so has it worked?
