Petition to get more help for Menieres Disease.

[JoeTHFC]

Hi Everyone,

Just wondering if you could take some time out to sign this petition.

It will take 2 minutes if that - epetitions.direct.gov.uk/petitions/40331

"This is a petition to ask the government to do more research into Meniere's disease and find a cure Meniere’s disease is a disorder of the inner ear that can affect hearing and balance to a varying degree it is characterized by episodes of intense vertigo, low pitched tinnitus, and hearing loss. The hearing loss has a fluctuating then permanent nature, meaning that it comes and goes, alternating between ears for some time, then becomes permanent with no return to normal function. The Condition affects approximately one in every 1,000 people in the uk The condition affects people differently; it can range in intensity from being a mild annoyance to a chronic, lifelong disability it is time people stopped having to put up with just managing this ear condition as the number of people diagnosed is rising.

People suffering every day with Meniere’s disease need a cure so they can live their lives without fear and anxiety of another attack. Thank you"

Would really appreciate it.

Thanks

 

[Leeds Spur]

I was diagnosed with Menieres Disease 7 years ago.......took tablets for 1 year and went for a 2nd opinion, was told then that if I actually had it I couldn't drive anymore!!!

I was basically dizzy for 2 years on and off......felt like I was floating all the time.

It went as suddenly as it came!! I reckon it was stress related.

Horrible condition

 

[JoeTHFC]

My Dad's had it for more or less all my life (im 20). Your lucky it went, his hearing has deteriorated to barely anything left so he can't hear music or anything really anymore and that's with hearing aids, had to stop playing football at 32, has attacks frequently that can last from 1 day to a month or more. Loves music but hasn't heard anything for about 4-5 years now, cant go to gigs. Manages to go to spurs games but has had to give up tickets in the past due to it including the 2-1 Danny Rose game vs arsenal. Very sad.

Hope everyone can just take a couple of minutes to sign the petition

 

[Danishfurniturelover]

Hi Everyone,

Just wondering if you could take some time out to sign this petition.

It will take 2 minutes if that - epetitions.direct.gov.uk/petitions/40331

"This is a petition to ask the government to do more research into Meniere's disease and find a cure Meniere’s disease is a disorder of the inner ear that can affect hearing and balance to a varying degree it is characterized by episodes of intense vertigo, low pitched tinnitus, and hearing loss. The hearing loss has a fluctuating then permanent nature, meaning that it comes and goes, alternating between ears for some time, then becomes permanent with no return to normal function. The Condition affects approximately one in every 1,000 people in the uk The condition affects people differently; it can range in intensity from being a mild annoyance to a chronic, lifelong disability it is time people stopped having to put up with just managing this ear condition as the number of people diagnosed is rising.

People suffering every day with Meniere’s disease need a cure so they can live their lives without fear and anxiety of another attack. Thank you"

Would really appreciate it.

Thanks

WOW proper weird that is as i was just up the hospital today for this, i had the surgery lasst november like leeds they told me i could not drive luckily it seems to have helped the surgery and i do the balance exercises.

If you ever have to do that thing where they lay you down on the bed with the camera over your eye then they bring you up to a sitting position while you recount names from a list and look at the moving image on the screen, let me warn you it is horrible.

The worst and most painfull experince of my life and had me in tears, i cried so hard and was shaking afterwards in the waiting room and gripping the chair because my balance had gone. Thankfully they operated 2 weeks later.

I should tell you the are some great exercises you can do that help with balance though if you have it at the serious level like i did you will need more then that.

You mention the fear and anxiety of another attack, well i have learnt that is part of the problem as well, it is fear an anxiety and doing breathing exercises can help.

A lot of my attacks happened first thing in the morning, so i would look into getting a healthier lifestyle, all the little things can add up to a bi improvement.

I can PM you details as a sufferer of this i know what im talking about and would be happy to put your mind at rest, if you have the surgery they keep you awake for it andf it does not hurt at all, i could not walk properly for a few days after and about a month after i got an inffection and had to go back in for a clean out which was not pleasant.

 

[Danishfurniturelover]

My Dad's had it for more or less all my life (im 20). Your lucky it went, his hearing has deteriorated to barely anything left so he can't hear music or anything really anymore and that's with hearing aids, had to stop playing football at 32, has attacks frequently that can last from 1 day to a month or more. Loves music but hasn't heard anything for about 4-5 years now, cant go to gigs. Manages to go to spurs games but has had to give up tickets in the past due to it including the 2-1 Danny Rose game vs arsenal. Very sad.

Hope everyone can just take a couple of minutes to sign the petition

sorry to hear about your dads problems i know his feelings and as someone who relies on driving it has been an akward couple of years, never meet or heard of anyone else having it.

How is his hearing in general??? i ask because they did hearing tests on me and im not partially deaf in my left ear, people take the tinkle on this site about my age so i not mentioned it before, the wife always said i had selective hearing but apparently it is common for people to have hearing problems when they have menieres. Funny though it was the right ear they operated on.

 

[JoeTHFC]

His hearing is pretty much gone now. Started off in his left ear then attacked the right too. Was deteriorating for a while untill a few years ago when he couldnt hear music. Without hearing aids he cant hear at all to be honest but lucky enough his work have paid for him to go to lip reading and sign language lessons. The lip reading seems to be helping but he cant go every week as he often feels to rough with the other effects of menieres such as intense vertigo and tinitus. There must be different levels of it as surgery for you seems to have helped? and Leeds' came and went. His has been consistant for 15-20 years now getting progressively worse. The tests youve talked about as well he has them quite frequently and normally brings on an attack which will last at least a week (meaning a week off work). They've also put him in one of those chairs that spins around at every angle and upside down if you know what I mean.

Its a shame that there is no funding for research or anything for it because its a really horrible disease to have, as you both know.

If you could sign the petition and try to get people to do it too that would be extrememly helpful.

Thanks

 

[jts1882]

I don't want to play down the importance of finding a cure, but what exactly is the government being asked to fund?

There is funding for research into the physiology and pathology of the ear, but it is in competition with research on a lot of other medical problems. Meniere's disease seems like a set of symptoms with multiple causes rather than something specific, so it looks like additional research would be general research rather than focused on something specific that could lead to a cure.

So I ask, is there something specific that some people believe could lead to a cure that isn't being pursued? If there is, then that should be the focus of the petition and is more likely to get a more positive response.

 

[Danishfurniturelover]

His hearing is pretty much gone now. Started off in his left ear then attacked the right too. Was deteriorating for a while untill a few years ago when he couldnt hear music. Without hearing aids he cant hear at all to be honest but lucky enough his work have paid for him to go to lip reading and sign language lessons. The lip reading seems to be helping but he cant go every week as he often feels to rough with the other effects of menieres such as intense vertigo and tinitus. There must be different levels of it as surgery for you seems to have helped? and Leeds' came and went. His has been consistant for 15-20 years now getting progressively worse. The tests youve talked about as well he has them quite frequently and normally brings on an attack which will last at least a week (meaning a week off work). They've also put him in one of those chairs that spins around at every angle and upside down if you know what I mean.

Its a shame that there is no funding for research or anything for it because its a really horrible disease to have, as you both know.

If you could sign the petition and try to get people to do it too that would be extrememly helpful.

Thanks

The surgery did help for me but as you said in your first post it is the fear of another attack that is the problem which is why it is anxiety linked. I had huge problems driving into tunnels or down a hill becuse the landscape infront would combine with the speed of the car leave me feeling very dizzy.

I never had the thing where they hang you upside down. It sounds like you really care for your father which is obviously nice, but trust me he is not faking it because when it was me i got the feeling people did not believe me about how sick it made you when they did the camera on your eye as you watch a swinging light in a dark room.

No joke i could not walk after it and cried for the first time since my mums funeral.

I do not want to sound rude but with me anxiety and relaxtion techniques helped greatly with easing the symptons, i still got the dizzy spells but it was easier to control.

Good luck and feel free to PM me anytime im always there for people with menieres because although it does not sound serious to most it is an absolute **** of a thing to have and i totally understand what your dad is going through.

 

[JoeTHFC]

The surgery did help for me but as you said in your first post it is the fear of another attack that is the problem which is why it is anxiety linked. I had huge problems driving into tunnels or down a hill becuse the landscape infront would combine with the speed of the car leave me feeling very dizzy.

I never had the thing where they hang you upside down. It sounds like you really care for your father which is obviously nice, but trust me he is not faking it because when it was me i got the feeling people did not believe me about how sick it made you when they did the camera on your eye as you watch a swinging light in a dark room.

No joke i could not walk after it and cried for the first time since my mums funeral.

I do not want to sound rude but with me anxiety and relaxtion techniques helped greatly with easing the symptons, i still got the dizzy spells but it was easier to control.

Good luck and feel free to PM me anytime im always there for people with menieres because although it does not sound serious to most it is an absolute **** of a thing to have and i totally understand what your dad is going through.

Cheers mate, top man. Its nice to talk to people who actually understand how bad it is because as you say most people haven't got a clue no matter how much you explain it.