Im back and diagnosed from queens square!

Im back and diagnosed from queens square !

hi guys im home

Im quite dopey and tired as I write this its been a very long day!!I have been diagnosed with VN and MAV as suspected the VN diagnosis was made with trepidation as i was only able to complete half the caloric test I got to panicky and went into meltdown tbh but the result was borderline. Minor damge they said but brain hasnt compensated for that , one of the reasons is the migraine which im dealing with on top which is slowing down my recovery.
She said she was absolute on the MAV diagnosis as I had some vertical eye movement on finger tip test she did which has never been picked up before.
Ive been started on meds and VRT where i live she said shes going to get it pushed through for me .
She was VERY understanding but seemed concerned with how im coping so has reffered me for cognitive behaviourl therapy , she wasnt happy with the weight im losing or my overall state.
I was happy someone listened to me for the first time in ages.
Im dissapointed i didnt complete the caloric and am beating myself up over it but they were very understanding about it but im a bit bummed tbh .
I feel better but hate myself for being so weak as a person others seem to cope where I cant .
Oh well thanks guys . Donna

Hi Donna,

That sure sounds like a good team you saw – to be able to pick out VN and MAV. I think this has happened to a few of us which is almost a double whammy. It’s the way it all began for me too. I made it through the caloric years ago but paid a heavy price as it induced the mother of all MAV attacks back then. Don’t beat yourself up over not getting through that. The test is crude anyway and given your reaction would have left you feeling very bad. The meds and then VRT sound like the right plan to me. I’d be taking it easy on the VRT to start with though as it can often make MAV worse unless it’s controlled.

Good on you for getting through all that testing!

Scott :slight_smile:

Well done for getting through it. I was very interested Reading your results. I’m wondering how they diagnosed the VN? As u know I was at Queen Square about 2-3 weeks ago and I went through the same tests I’d assume. I hated the caloric - it took them an hour to do it as I was crying hysterically after the first one in the left ear. The left ear was MUCH worse than the right symptom-wise but both were horrid. I’m STILL suffering the after effects. However they said there was a significant asymmetry between the two ears but I’m a classic MAV case. No mention of VN. I’m wondering how they tell this and why they didn’t think I’d got VN too.

Also Ive been referred for VRT but have been asked to participate in a VRT study run by prof Luxom and Dr bamiou and various physiotherapists at Kings College Hospital. So I guess it’s a way of getting VRT quickly but it’s looking at what environmental situations are worse for different peoples dizziness. Guess it’s worth a go. I’d be interested in anyones comments/ ideas.

Wondering what meds u have been started on Donna?

Now you must get lots of rest - don’t expect too much of yourself for the next week or so!

DizzyIzzyxx

I dont know to be honest but how my symptoms started were classic VN according to DR Everrett.
How did your symptoms start I think quite a bit of info from that she also thinks I have a mild form of BBPV which is just great! (not)
She put me back on the Ami what has she put you on? she said Ami is the best at to start at 10mg and go up to 20mg . She wasnt keen on the nori she thinks ami is the best so Im back on it tonight .
I just hope some symptoms abate when I start this drug so I can get on with VRT .
What MAV symptoms do you get?

Hiya

In terms of meds, the neuro-otologist was going to suggest amitryptiline but I am already on a related tricyclic (Dothiepin) which was prescribed years ago for panic disorder (although i don’t think it really helped - the panic thing was ‘cured’ with CBT) and I haven’t been able to come off it. SO she thought it best to not change it at present. SO other than the Clonazepam she didn’t prescribe anything. She mentioned a few ones e.g pitzotifen(?) and sumatriptan but for some reason did not put these in my written report to my GP, so I’m chasing this up with her. I have tried a triptan once b4 and it didn’t help, and pitzotifen apparently can make you put on weight which my vanity won’t let me risk :slight_smile:

As I said I’m waiting for the VRT

As for my symptoms, well I’ve had MAV for 24 years (not continuously - I had a good 12 years in the middle symptom free plus lots of periods of 6-12 months with no symptoms, b4 you get worried!) and the symptoms have varied a bit, but here’s a list of a few (not all at same time either!):
sensation of spinning/swaying INSIDE head
sensation of world spinning around me
extreme sensitvity to noise, light (esp. fluoro), motion around me
extreme pressure in head, eg behind eyes/nose, in ears - fell head will explode
thumping, ‘sick’ headache at back of head, down neck, behind eyes (feel less dizzy when have actual pain)
dizzy episodes when looking up, down, left or right
tunnel vision (rarely)
extreme fatigue
can’t think straight
depression (obviously!)

Trying to hold down a job and be a wife and mother becomes impossible when I’m like this.

As to how it started, well I was 18 and recovering from tonsillitis and was getting ready to go out to a party and the room suddenly started spinning and I couldn’t ‘draw’ my goth make-up on :lol: It lasted about a year that first bout (the longest I’ve ever had it continuously) and it really messed up my first year at uni.

Well I’ll shut up now as I’m sure you’ve heard enough. I sometimes wonder whether hearing other peoples stories/symptoms is good or bad as it can make you dwell on it but on the other hand it’s nice to know you’re not the only one.

I’m keeping my fingers crossed for you re. the ami and the VRT. And the CBT’s good for the peripheral crap that comes with MAV.

Keep posting - even when u feel better, to tell us you’re better!

DizzyIzzyx

Hi Donna,

Glad you got through it OK. I only completed half the calorics when I was up there. They sent two letters to my GP, the first said, everything normal. The second said, I did not complete the test and some abnormality was found, need to repeat the test in 3 months, I declined!

The thing that amazes me is that nothing has changed since I went up there, in the 90s. Same diagnosis, some ear stuff with MAV, same drugs. I went on dizzytimes site and others have been up there, and there seems to be the same again. Makes you wonder if they find out anything really, just put the same diagnosis, cant go wrong really can they? One thing I noticed is that they dont seem to add two drugs together, even after all this time, I may be wrong, but all the people on the sites, that I have read, are given one drug, then another. I went through all this testing at Oxford, London and Cambridge. Finally remained under the neurologist at Oxford as he took me through the drugs one after another. I now just stick with the GP who is trying me on any of the preventaives I want to try apart from verapamil which she says is not licenced for migraine so she wont prescribe it.

Anyway, at least your mind is put at rest and they will give you the preventatives you want to try. I remember one of the drugs up there at the time was Flunarazine. They have to get it in for you. A lady I know went up there and got that one and has her life back. It didnt work for me, but we are all different. Hope the ami gives you some relief.

Christine

I agree with your christine that in a way no matter the diagnosis the outcome is more or less the same unless they find something siginificant.
I think they cant for definate ever say what it is not really but I suppose we have to trust some of their judgement based on training etc.
Dizzyizzy my symptoms are very similar to yours and sometimes when I get the headache some of the dizziness goes like an explosion has happened its horrible.
I have a migraine now AGAIN and it hurts lol
I seem to be having a little remission of the dizzies again since the day I went to london and thankfully the tests didnt make me feel worse after just woozy.
But I know I def have MAV though now she said theres no question Im interested to see if the ami helps .
She gave me some VRT to do and I did some today made me feel a bit funny I hate it.
But the medication thing is weird I had a box of Ami left over from the ENT I saw but she didnt prescribe them to me just wanted me started on them but didnt gice me a script for them.
Ive got some already though so going to take them anyway its a bit bad they dont give you them though.
Thanks Guys Donna xx