Hi Hbep,

Ilia here!

I am waiting to go and see from Linda Luxon in London, according to her secretary they are trying ot fit me in before Christmas.

Is it Linda that you saw?

Are they ok at this place - I am nervouse and for me its a whole 11 hours drive to get there. Am way to scared to fly after the last attempt.

I am already (even though I know I have a vestibular problem) am scared fo what they may find is wrong with me and also that there is no cure.

I cannot imagine being stuck like this FOREVER.

Again Linda's secretary is telling me that I will have to stay in London for a few days! HELP apparently for all the testing. So now I am thinking what are they going to do to me. i am worried to have the ENg done duse to the dizzies - I feel bad enough any how.

Could you share with me who you saw, how you found them, what tests you had and how helpful you found it. Did they diagnose you?

In one way even if they cannot cure me i am praying I get peace of mind about all this.

Thanks,

Ilia

Hey Illia

that is great news you've got an appointment, I'd be really interested to see how you get on. The drive is awful isn't it but like you I'd be a little frightened to fly! I'm having a hellish week, don't know if its the medication they had me on for my other problem :( but I've been so dizzy, bad headaches, feeling sick, I reallycan't deal with two problems at once! I'm feeling really down today, I can't deal with this for much longer, I just WANT IT TO GO AWAY! Everyone is getting tired of me moaning on about how I don't feel well, well if they had this for more than 6 months I'm sure they'd be exactly the same :) they don't understand really, which is the most frustrating thing. I wish we could all get rid of this thing! Look forward to talking to you this weekend. Sx

Hi Ilia,

Really don't worry about your appt - you are totally doing the right thing. It's a really good place, all the latest equipment - if anywhere in the UK knows their stuff regarding the dizzies they do. One of the best things is that a) No one will look at you like you're mad or making it up b) They are aware of how disabling these symptoms can be and take it seriously and c) They treat dizzy people all day long - that's their job, so they aren't phased or out of their depth.

I had my tests done on the same day as my diagnosis. I'd already had an MRI elsewhere. Really don't worry about the tests - I got myself in to a real lather about them, and afterwards realised I really didn't need to. They're not painful, and let's face it, the worst they are going to do is make you feel dizzy, anything you experience is going to be no worse than anything you've already experienced. The woman doing the tests was really nice, asked me at points if I wanted a break - I didn't, but she checked. I didn't feel worse afterwards, and in fact I got the bus home. I genuinely think the calmer you remain about them, the easier it is. If you get worked up and panicked it just makes the tests a lot more stressful than they need to be. Afterwards I was annoyed with myself for having lost sleep over it. I'm sure they only want you to stay a few days to make sure they can cover everything - for example I went back a few weeks later for my VRT class, but they'll be aware you have to travel so far, so will presumably try to fit you in whilst you're down. I'm guessing it's simply to save you having to travel again.

I applied to see the neuro oto called Rosalin Davies - I didn't apply to Linda for no other reason than the person who told me about it had seen Rosalin Davies. I know Dizzyblonde has seen Linda and says she's really nice. Rosalin and Linda are the most experienced people there. If I have one small gripe it's that on the NHS they run a clinic which means it can be quite random which specialist you get to see. (Obviously if you go privately you definitely get to see Linda) I've been twice so far and each time I've got the more junior docs who work under Rosalin. That said - they have both been really nice, did know their stuff, they take time with you - answer your questions, talk you through their findings. It has been such a different experience from my horrible ENT ones. Based on the test results I was diagnosed with lab and have been doing VRT. Last time I was there the doc I saw mentioned that my test results were borderline, I asked about migraine but he said that I should do at least 3 months VRT before they thought about trying migraine meds. I go again tomorrow so I'll see what they say then.

I think the great thing about being under a neuro oto is that they know what to try if the VRT doesn't work for you. They are fully aware of migraine induced dizzy conditions etc... I was reading one of your other posts and I would totally mention that your son has been diagnosed with MAV - these things do run in families - wonder if migraine might be causing or prolonging your symptoms - I guess if they test you this will them them more. And definitely mention that you get them - although I'm sure I'm stating the obvious here, it's just so easy to forget to say things when you finally get in there - I tend to take a list of questions. People with migraine induced dizziness are also more prone to BPPV just like people with lab are. Maybe they'll try you on one of the migraine meds, I think they often do that if you've been dizzy for a long time just in case it might help, although I'm no specialist so it's just a guess.

Anyway, Ilia, try not to worry, I'm sure that all you will come away with is a non sinister diagnosis and much more peace of mind that you are in the hands of the best specialists and that you know what you are dealing with and that it isn't anything life threatening or awful.

Hope that helps,

hbep.

Dear Hbep,

You are a dear! thank you so much for all your words fo comfort and advice it has really helped put my mind at rest. I think you hit the nail on the head when you said that they want me to stay a few days to get the whole thing including the VRT. This whole thing just grinds me down in its non-ending style. So I really hope that they have some answers! - like you say they deal with this day in and day our so we will see. :)

Thanks Ilia xx

Littleone

Hi sorry that you are not feeling to great - you and I both! so you ain't alone! :rolleyes:
[removed],


irbuds xx

Hey Ilia

I am listed as [removed], I've been looking out for you you under your name here but you don't seem to be online, [removed], right?