Does anybody know if we can collectively go to a research institute and tell them to listen to our problem ? maybe a university or something ? - doctors dont know what happens with us and prescribe us anti depressants when were not even depressed. - they tell us if in our "mind" and it will go soon.

They say the anxiety that comes with it, is caused by nothing..

they tell me theres nothing wrong with my ears .

they think we make this up....

i personally dont think we can sit around and wait for things to happen - i think personally we have to take this to the big guys and ask them to listen

thanks for reading my rant !

You are so right - something needs to be done. I've finally found a decent consultant (LL) who knows what she's about, but it took me eleven years of being brushed off and not believed, misdiagnosed with ME and psychogenic vertigo and accused of making it up because I thought chronic illness was 'fashionable'. I've lost my career (ironically, as a psychologist...) to this, and I'm bl**dy furious about the way we're treated and the distress we have to go through before we're finally (and usually only thanks to our own research) referred to people who'll take us seriously. GPs and ENTs definitely need to be better educated about these symptoms, but who do we approach, and how do we get them to listen? For every one of us that finds this board or happens to get a referral to a clued-up neurootologist, there must be dozens if not hundreds going through hell on their own, not knowing what's happening to them.

Ann

Yes I agree.

You are right - we have had to research to find the specialists who know what they are talking about (LL). So many dont and so many are fobbed off by useless GP's and ENT's.

On the whole, there is not enough know about vestibular disorders and the horrors that come with them. Noone knows about inner ear dizziness - they only know about lightheadiness if you feel a bit hungry or tired...it is an invisible illness which people lack sympathy and understanding for - which results in the patient becoming isolated, frustrated, depressed, anxious - who wouldnt be with bizarre symptoms, little medical and personal support and an illness that often lasts years never mind weeks.

My rant over!

xxx

Been there for almost 5 months. Severe case of vertigo in September-left me without a job and insurance payments of $1300.00 per month. That's with a 3000.00 deductible and 80% coverage. Only go thing is medicine is 10-40.00 co-pay. I'm light-headed , dizzy, confused and off balance 24/7. Blood work, 2 neurologist, MRI, CScan, Epley exercises, eye exercises -valium, mezacline you name it I've tried it. One say's it anxiety-another it's MAV due to menopause-other says it's BPPV. Can't even get on the same treatment plan. The mind fogginess is the worst next to the light-headiness. I feel 24/7 "off"-I've never been drunk or did drugs but I think what I'm having is a "natural high" that I don't want-lol.
I've stopped taking my valium after 3 months and the dosage increased to 5mg 2x a day -no help. I still do the exercises but they aren't helping.
Anyone got other things they are trying? How does one work when your like this all day? No wonder we get depressed or mad who wouldn't! I'm looking for a job now and don't really know is I can hold one if I find one.
Sorry for the rant-but this is one thing I cant seem to overcome and it's frustrating-especially for a person who likes to be in control.

there is an institute that you can donate your inner ear to once you die. unfortunatley, they said they can only be 100% positive about an inner ear disorder once an autopsy is preformed. yea us! i'll look it up again an tell you guys.

im gonna find something to be done before i die.

Yes tell us anastasia!

The good news is that I read an article the other day saying they are doing trials on gene therapy - something called MATH-1 and think they can regenerate the hairs in the inner ear that get damaged and restore balance in vestibular patients. Trials begin in 5 years. Surely hope this is a solution.

xxx

its called
The Temporal Bone Registry - Research On Hearing And Balance
It runned by MD Timothy Hain.
i feel like telling him he can have mine now. it's not like it works :rolleyes:

V interesting - have just read the site. May well sign up now to be a donor. Everyone else on here - think about it too. Anastasia, is that a world wide organisation - as in is it ok if people from other countries sign up or should there be one in the UK?

xxx

i'm not sure. all i know is i have to talk to the university i'm donating my body to and get then to add this paper work to thiers so they don't start disecting my inner ear just for fun. my doctor told me what they do is cut a peice of skull out behind the ear and take out what they need them patch everything up. if he's heard about it (we're canadian the registry is american) then i'm sure it could be. if not, i don't see why they wouldn't take a doner from another country. i'd phone up one of your medical universities and ask about it. i don't know about the UK but in canada i have to sign papers with a witness to make my body donation (or anything else) legal, but it can still be overturned by my family when i'm dead (i'd haunt them forever if they did!) so you'll have to tell them too. i'm taking care of everything this summer to make sure the university is okay with not getting my inner ear junk. thats the best advice i can give you.

Thanks.

I think i'll email the temporal bone registry. My parents think they wont do it for Uk people as they couldn't fly my ear over quick enough!!!

Pretty morbid hey. Never been up for organ donation but this one I am - anything to help others with vestibular disorders.

xxx

Dep!!
What a good idea - let's get them to listen grrr!!!!!

there has to be a way to make some researchers listen.