Finally, in January I saw Dr surenthiran.

Finally, in January I saw Dr surenthiran. By this stage I had given up all hope of ever getting better. As I had travelled to kent (I’m in the north west) he got me to see his CBT therapist. I told her and she looked at me in disbelief. She then told me to forget everything that woman had told me and focus on getting better. She said how dare someone who isn’t qualified tell you learn to live with it, it’s not going away. The awful thing is that I googled Dr S last March but I had been given this appt with the CBT/audiology woman. I chose her at withington hospital as it was a nearer choice. I made the wrong decision and should have chosen Dr S. I didn’t know I should be seeing a neuro otologist. If only…

Well to be fair any ENT should know all this in any case. Glad you got someone better! Lol. Doesn’t he claim to have cured 10,000 patients?

hi heart what did doc S say? curious as ive heard hes one of the best!

Wow!! I didn’t know that. I hope I’ll be one of them!!

Don’t quote me. Perhaps it was ‘seen 10,000 of his patients get better’

I first saw him in October last year but I didnt believe the MAV diagnosis. The first thing he said to me after I had described my symptoms was ‘I can get you right’. I didn’t believe him!! He did some balance testing just things like following his finger etc then more questioning (he thinks there’s a genetic link for me as I don’t get migraine headaches but my aunt and sister do). I have felt dizzy since Sep 2014. He didn’t want to know what I’m like everyday but what happens when it flares up and how often it flares up. When it started I had been on a boat and flown. I thought that’s what had set it off but he disagreed and said before this strikes you need to think back to 18 months to 2 years ago. I had been under total stress at that time for months.
He gave me a diet sheet with lifestyle changes and a px for meds. I asked if I could beat this without meds and he said no. I had a full hour with him but felt I couldn’t say everything I wanted to say!!

Anyway, I was followed up in January and he really is good. He was concerned I couldn’t tolerate the venlafaxine he’d pxd so he pxd something else, asked me to stick with the diet, see his VRT lady and is CBT lady. It was well worth the trip. Oh and he did say it may be a bit harder to get right due to the fact I’m perimenopausal.

that’s encouraging news isn’t it :slight_smile: and are you feeling any benefits yet? the diets hard isn’t it? I really carnt stick to it for long I get so bored! x

I agree with the meds comment, most people need the meds to help you get the anxiety under control, not necessarily directly, in my view, but to control the symptoms enough so you can calm down a lot. My doctor’s written a paper apparently about how anxiety is an exacerbator of this condition and how it must be a pre-requisite to get it under control (i can hypothesise what this might mean physically).

Yes, 1 hour with an expert is surprisingly short. I’ve had 3 alternate opinions and because they don’t know your background, going through your history and test results burns through that time so quickly.

I agree with his comment about it being secondary to something that happened before. And I suspect, too, that stress could have brought an element of it on.

Do you know what mellybob, I’m really good at the diet!! And I was a chocoholic!! Cakes, bars and also a banana fanatic!! I told Dr s they would be the hardest to give up as eating them cheer me up!! But it’s so hard with Easter coming and having a giant Easter egg in the cupboard for my husband!!

I didn’t feel any benefit with the diet and lifestyle changes on their own so I’m now trialling meds. My second one was pregablin but I felt awful. Now I’m on my third which is pizotifen. I started with a third then half and now going to one, as I’m titrating very slowly. I seem to be more unsteady on them but determined to go the whole hog!! I’ve not been on any meds at all until seeing Dr s.

This is such a journey for us all and I hope we all come through it. Also Dr s believes your body will heal itself and the meds, diet etc are just like putting a plaster on the brain.

Ok I think he did a study of people who have had this for 44 months and he managed to get them 70% better within 9 months or something like that.

This is what worries me turnitaround. I couldn’t tolerate venlafaxine or pregablin so his third choice was pizotifen for me. I don’t think this is for anxiety but I know I am anxious. I wake up every morning with a feeljng in my stomach just wondering how I’m going to feel today. Any slight dizziness and I panic. It’s been difficult on the pizotifen as I’ve felt more unsteady. I’ve even gone off sick from work to really trial this one and not have the added pressure of work. I’ve read your posts about amitriptyline and mellybob’s about Nortriptyline but I feel I’ve got to give this a fair go.

I believe the body does heal itself as I know I got better just with meds alone and no diet restrictions infact I did everything I wasn’t suppose to and still got better but now im in relapse land hoping the body rights itself rather quickly (im not having much luck haha)

Because you’ve gotten better before, you will do again. It’s just so hard isn’t it? I like the fact you didn’t follow a strict diet and still got right. Hmmm chocolate here I come!! No, I think as I start to see improvement I’ll reintroduce my favourite foods and see what happens.

it is very hard, I still carnt understand how migraine can cause so much disruption its an awful disease one I really havnt got time for haha!

Ha!! Me neither!!

I really hope you start to pick up soon heart and that the meds help, keep us updated :slight_smile:

Thanks mellybob. I hope your relapse is short lived too!! We live in hope!!

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One aside on this, thank god we DO have meds … can you IMAGINE having this 100 years ago without any medical help at all?? I dare not think!! I know that Amitriptyline has given me my life back and without it i’m a gibbering psychologically messed up useless pile of flesh and bone.

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I’m so glad you’ve found your med that works for you. I really hope pizotifen does the same for me. I have no idea why I went so long without trying the meds. I think I was hoping it would just go away on its own. How naive!!!

No that’s not naive at all. It can go away without meds. Look at user Beatles909 for an example. I know someone who was dizzy for 1.5 years who recovered without meds. Both of those people conquered their anxiety without meds. It’s good that you tried.