Living With Meniere’s Disease

Living with Meniere’s

Angharad Hanley from Bridgend, one of our guest bloggers, has written about her experience on living with Meniere’s disease.

Lying face down nose buried into the carpet was when I first heard the words Meniere’s disease. That morning, aged 17, I had woken up assuming I had somehow found my way into the tumble dryer…the only thing that would explain the pain in my head and whirlwind vision. After vomiting profusely I was able to call my mother who requested a visit from the local GP. My mother has never been good with vomit, she had a PhD but ‘doesn’t do sick’.  Nevertheless, she got me down to the living room where the doctor didn’t question why I was on the floor and not the sofa. For some reason being down as low as I could go made me feel less dizzy and nauseated. I assume this was one of the more normal things a home visit doctor would see that day which is why she was happy to sit next to me and chat.

I don’t remember much aside from the conversation where she talked about dizzy spells, vomiting, vertigo and Meniere’s disease. She prescribed me some Buccastem and told my mother there was nothing much to be done I just had to ride it out.

I was unaware then that this would be my first memorable attack. It wasn’t until my very stressful and emotional teacher training year that I was once again plagued with these episodes. Working an hour and a half from home, stressful pupils and a tempestuous relationship meant that I had usually reached my daily drama quota by 9.am. Eventually it caught up with me and manifested itself as regular vertigo attacks, complete lack of balance and migraines. After taking an alarming number of days off I went to my GP who again prescribed me an anti-emetic (anti sickness) to take, telling me to avoid stress and take it easy. No easy feat for a newly qualified teacher.

It was during this year that I went through the worst of this disease and had regular, debilitating attacks. Almost like clockwork each morning I would wake up spinning with buzzing or ringing in my ears. I would fixate on a point on the wall for some sense of orientation and stare at it until the dizziness passed. I think the longest this took was around 2 hours one morning. Whilst battling the whirling vortex of my bedroom wall I had to manage the overwhelming need to vomit. This was also a complication, if you can’t see where the toilet bowl or bucket is, you’re playing a messy game of sickness slam dunk.

I’m glad to say that since that turbulent year I have had infrequent and small attacks. I have my trusty tablets on hand for sickness and I have learned to prepare for days with heavy air pressure and travelling which plays havoc with my ears! I am still fairly sensitive to changes in the weather and dizziness for me isn’t just feeling a bit woozy, it’s a hazard. I know of sufferers who have had it much worse than me and some who have had hardly any symptoms. Like any other disease its affects vary from person to person.

Meniere’s biggest blow was the hearing loss and sensitivity. I was aware that Meniere’s and deafness were a package deal but not aware of how being deaf would impact my life. From day to day conversations to teaching a full class of pupils I have had to alter my communication style drastically to adapt to my impairment. I am lucky to have friends and family who have taken it in their stride and probably realised long before my diagnosis that I had a few quirks.

People who know me well know the following:

  • I lip read more than I listen so talking to me from another room or from the side does not work.
  • In group gatherings and conversations I often feel lost.
  • I am not an ignorant person but it does sometimes seem that way. If I don’t reply straight away or laugh at a joke it’s probably because my brain is still piecing the lip reading, vowel sound and facial expression puzzle together to figure out what you said.

A side effect of my deafness is something called ‘concentration fatigue’. It is widely research in deaf children but not so much with adults. People with a hearing impairment use more of their cognitive resources in listening, lip reading or following signed conversations. Coming home from work and falling into the trap of convenience food or having naps meant that I felt constantly tired, unwell and very antisocial.

I have found that combatting my fatigue with exercise (seems weird I know) has helped me not only lose weight and feel healthier, but be more social. In the gym I don’t have to concentrate on talking, I focus on the class and combat my stresses. I don’t have to be able to hear to lift weights!

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One very unsympathetic acquaintance suggested that refusing to wear my hearing aid made life difficult for myself. What some people don’t know is that Meniere’s can also be linked to noise sensitivity. I explained that some noises were uncomfortable, painful and even induced migraines. That amplifying these with a hearing aid was not an option. Unless you suffer with this it is hard to imagine that one can be both hard of hearing AND finely tuned to certain sounds.

Some sounds really grate on me; beeping, screaming or any loud high-pitched sound is often enough to make me leave a room. My bug bear is whistling. That tinny, metallic high pitched horror that drives me mad. You learn to live with it but noise sensitivity something you can only truly empathise with until you have experienced it.

For people who are new to Meniere’s disease and its many complications it can be hard to find a medical professional that has an in depth knowledge of treatments and symptoms. As there is no medical test for this it can be hard to get a formal diagnosis.

My knight in shining armour was an ENT specialist at Bristol BRI. I forget the name of the lovely doctor who had me standing on one leg whilst trying to push me over (testing my balance) and walked me around his room with my head in different positions to see how I moved. After a discussion with him I recalled instances of poor balance, tinnitus and dizziness I could now link the something tangible and although every diagnosis of Meniere’s is different the relief in finally understanding the disease and how to treat it I can imagine is a common feeling amongst sufferers.

One piece of advice I would give is to go to talk to others, find a support group, and ask your audiology department if they have any contacts you can make. Talking to others helped me find ways to deal with my Meniere’s and reassured me that I am not alone in suffering with what can be a very isolating illness.

Hearing Wales’ Comments

We have many customers who have sought help from us on dealing with hearing loss associated with Meniere’s disease.  As well as investigating whether hearing aids are suitable for you, other tips for coping with Meniere’s disease include:

  • have sickness tablets on hand
  • join support groups
  • talk to friends and family as much as possible

If you would like to find out if hearing aids can help you, please call us on 0800 313 4304.  Our Audiologists are highly trained with in depth knowledge of the disease and experienced in aids that can help.  All of our consultations are completely without obligation and we are happy to advise free of charge.