It Will Change Your Life #1

Meniere's and me

Monday, 21.10.19

The day is overcast, mirroring my mood. Today, I go for a Cochlear Implant “work-up” for my left ear. I’ve been considering a Cochlear Implant for a while, but have bathed in the delusion that somehow, my hearing will come back. But of course, it won’t – it’s just my eternal hope that floats around me as I journey through the incurable Meniere’s disease.

My symptoms started in 1995. Ear fullness, like I had been swimming and still had water stuck in my ear canal. Bouts of unpredictable, violent vertigo. Tinnitus. And then came the hearing loss. Gradually.

I was 28. ‘Meniere’s is more common in men over 50,’ my ENT told me. Online information at the time backed up the statement.

Today, I sit looking out the window at the dark, heavy clouds, painting the state of my heavy heart and dark emotion. I’m 24 years into my Meniere’s journey, yet I’m filled with tingles of anxiety travelling over my skin like waves, with one big question bouncing around in my mind.

If I have a Cochlear Implant, will the disabling vertigo of Meniere’s disease return?

And I’m not just talking about being ‘dizzy’. The vertigo of Meniere’s disease for me was the most abhorrent, violent, room spinning. Totally debilitating. Hold on to the floor even though you are already on lying on the floor, stare at one spot on the wall for four or five hours until the spinning subsides. Beyond exhausting.   

And let’s not forget the relentless, vicious puking that feels like you’re about to turn inside-out, dehydrating the body so much you need to be transported to emergency at the hospital.

If you ever want to know how vertigo of Meniere’s feels, sit on an office swivel chair and get someone to spin you around as fast as they can, non-stop. Imagine not being able to stop it. For hours and hours and hours. Then imagine never being able to predict when vertigo will hit – because when it does, you are stuck wherever you are, and you absolutely can not move, as it will make the spinning impossibly worse. This is the vertigo of Meniere’s. Hell.

In 2004 I made the choice to destroy the balance cells in my left ear to stop the debilitating, violent vertigo. The bottle of gentamicin was now my hope. My ENT injected it into my middle ear.

Imagine for one moment, having to make the choice about destroying your balance cells. Balance. Yeah – that thing. Something you never even think about. Your body just does it for you.

I relearned my balance and retaught myself to walk with a new normal, using my eyesight as my guide for balance. But compared to the unpredictable vertigo, the destruction to my vestibular system was an answered prayer. It changed my life. It gave me my life back. With physical limitations. I was no longer spiralling down into the darkness of the Meniere’s prison where there is no escape.

But back to my question – if I have a Cochlear Implant, will the disabling vertigo return? And if it does, what does it mean for my life after living vertigo free for 15 years? 

eyeandear.org.au Adapted from images courtesy of Cochlear Ltd

I’m taking a risk. I know that. The thought of having vertigo again terrifies me. My vertigo years were a very, very dark emotional place to be. Once upon a time I had a life and lived it fully – working full-time in a job I loved, physically able to do what I pleased, and engaged in a social life. I was happy. Then Meniere’s hit, and took it all away. Every waking moment was lived in fear of a vertigo attack. Sleep was not even a safe place. I would wake in the night, spinning violently, unable to close my eyes for four or five hours until it stopped.

I need answers from my ENT and my Otologist whom I am yet to see. Can my Meniere’s vertigo return due to the Cochlear Implant?

I walk out the front door and lock it behind me, anxiety joining me for the Cochlear Implant work-up appointment. Anxiety. We have been friends for a long time. Introduced to each other by my dark, dark shadow, Meniere’s disease.

Friends already fitted with Cochlear Implants tell me it will change my life … I sigh and wonder which way it will change my life.

Just breathe, I tell myself …

To be continued.

Published by Julieann Wallace

Julieann is the best-selling, author of 'The Colour of Broken', who is a paper cut survivor with an incurable addiction to Cadbury chocolate. Julieann is continually inspired by the gift of imagination and the power of words that can change the way people think and feel. She is a self-confessed tea-ninja and book-smell-aholic who is troubled by her winklepicker curiosity. Julieann has discovered that she is unable to type or write with chocolate in her hand, and tries not to scare off her cat, Claude Monet, with her cello playing.

24 thoughts on “It Will Change Your Life #1

  1. I too love my tea! Twinings Earl Grey is my choice hands down. I also love chocolate, but prefer Lindt, heaven help me….lol I enjoyed reading your blog post very much. I got sick with Menieres in 2008, while working full time .It was a game changer, as you can certainly attest, Julieann.I worked at two jobs for a further two years, all the while enduring the horrendous spinning, lack of balance.Today at 56, I feel I have gone through the fire and came out on the other side, relatively in tact. I now walk with a cane for stability, have hearing loss, etc. I still embrace every single day on earth I am given ! I have a supportive family, friends and I am so fortunate to live in Canada, where health care is managed very well , province by province. Some days I feel positively blessed! I belong to an art group for persons with disabilities here in my city. I do a lot of landscape photography, have done since long before this dreaded disease took me in its grasp and flung me around. I like to explore mixed media , even online through wonderful Youtube videos. In short, its not perfect, but I enjoy my life tremendously.! I’ll look forward to reading of your journey, Im sure.Take care and be well.

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    1. So lovely to hear from you, Susan. I’m sorry to hear you have been through the fire like me. At this stage of MD for 24 years, I am feeling intact and blessed, even though all I have been through. The darkest days just make His light shine more brightly, in hindsight. Having an incurable disease is a tough journey. I’m so thankful for social media and the internet, where we are able to connect and support each other anywhere at anytime. May you have continued joy for each of your days xx

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    1. Sorry to hear you have Meniere’s. I can’t wait for the day that it no longer exists. I hope my journey towards a cochlear implant helps you, so you know the process. xx

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    2. Good to hear you have stabilized the hearing loss. I took Betahistine for a long time and it did nothing for me. 😦 So thankful there is technology that can help us to hear again. 🙂

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  2. I wish you the best with the CI! I have one and I’m a Bilateral Meniereian from the start also in 1995, I was 24! Meniere’s is most commonly triggered in people 40 and over and really is not more in men both sexes get it. Meniere’s affects each and everyone of us differently. As for my luck with a CI well it did ok for a few years and then I was right back to the WHAT stage only getting bits and pieces of speech and more migraines when I wore it!

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    1. Sorry to hear you have Meniere’s. It’s a most frustrating disease, in that it affects each of us differently. And I hate that people suffer. That’s why I like to raise awareness and for us and to raise money to donate to research. Thanks for sharing your experience with your CI. I hope something good comes your way. x

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  3. Thank you for sharing. I also had the “shots” to my left ear to alleviate the vertigo, and have been fortunate enough to be vertigo free since then, knock on wood. I have lost most of my hearing though, but only in my left ear. This summer I began wearing a Cros unit that transmits sound from my bad ear to my good ear and I’ve been very pleased with the results. I teach so I decided to also purchase the Roger unit which has been a Godsend in the classroom. My Doctor informed me when investing in the Cros that the cochlear implant has now been approved in the US for single sided deafness. I may consider the cochlear at some point but will continue using the Cros for now. I’m looking forward to reading more about your journey and hope you are pleasantly surprised by the outcome.

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    1. I’m so glad the gentamicin has given you relief from the horrid vertigo. I also have a cros unit, and have been wearing it for 2 years. However, when teaching in the classroom, I find that I don’t have any direction of sound, which is frustrating. So happy to connect xx

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  4. At present i have not had an attack for 18 mths.i take serc and eat a LOW salt diet. Iam so sorry to read about your most terrible and debilitating attacks which I can certainly relate to. I will keep you in my thoughts and prayers. Margaret Jugl.

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    1. Thank you Margaret. I too tried the low salt diet for 10 years, and it didn’t stop the vertigo attacks, nor did the serc I took. As you know, it’s a process of trying to find what works for your body. Thank you for your prayers. God is good. xx

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  5. I have had Menieres for 6 years managed reasonably well with Serc and low salt,then after 3 months of repeated vertigo my neurologist gave me gentamicin which was wonderful for a year them back tothe worst vertigo. Another gentamicin which did not work balance went completely and after seeing a vistublar physio who got me walking and another shot of gentamicin I am slowly recovering. My Ent has referred me to Audiology for cochlear implant in right ear with laborectomy to stop vertigo. Many questions needed before going this way. I would love to hear from anyone who has had this procedure.
    Anne Parker

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    1. It seems never ending at times. So sorry you are having a rough time with your Meniere’s. I am part of a facebook group called ‘Meniere’s and Vertigo Without Borders’, and a member had a labyrinthectomy and cochlear implant in one operation just recently. There are also cochlear facebook groups you can join to get a better understanding of what people are having done and how they are going with it, and what difference it makes in their lives. I hope you find what you are looking for. xx

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  6. Thanks for your prompt reply. It’s a big decision to have the laborectomy as it affects your balance even though it will stop the vertigo. I need to hear from anyone who has had this procedure .

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    1. I had gentamicin injected into my middle ear in 20014, killing of the balance cells, so it is quite similar to a labyrinthectomy. Are you on Facebook? I believe that is where you will find more answers.

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      1. Yes. I use my eyesight for balance – it’s my new normal and life is 1000% better than having vertigo. Because of brain plasticity, you relearn your new balance. I was walking the next day, and back teaching after the two weeks of school holidays. 🙂

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      2. My first gentamicin did not cause balance issues and it lasted a year before the dreaded vertigo returned. Another shot did not work so after 2 weeks they gave me another which has stopped the vertigo but I now have days when
        My balance is very poor. Have discussed having laborectomy and cochlea but will need to find out how that will affect balance. Anything to avoid the vertigo.

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  7. I ugly cried when I read your love letter to your Meniere’s Ear. It was so analogous to my story. Except I also have Migraine Associated Vertigo. AND just over 2 years ago started having Sudden Sensorineural Hearing Loss episodes in my “good” which they suspect might be atypical Meniere’s. A cochlear implant in my future is a possibility, so I’ve started reading your It Will Change Your Life blog posts, too. Thank you for sharing he physical and emotional struggles in ways many of us cannot express nearly as well. I am looking forward to reading more about your cochlear implant journey and all the great information you are sharing about the entire cochlear implant process. With much respect and gratitude for what you’re doing! Carol, Texas USA

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    1. So sorry to read that you also have MAV on top of MD. I have sensorineural hearing loss in my good ear also, which pushed me forward to getting the cochlear implant sooner rather than later. I decided to share my journey with others because I know many Menierians who have had a CI – one minute they are deaf with little or no hearing to, suddenly, they have a CI, as if it magically appeared. I would have loved to hear their struggles and thoughts and emotions along the way, so this was a factor in starting my blog, in the hope that it may help others as well. xx

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    2. Although I never did the Gent shots I had a lot of balance issues between the Meniere’s and MAV. I went through balance therapy and did vestibular rehabituation exercises to help retrain my brain. Destruction of the nerves in my ear from Meniere’s also started causing some strange visual disturbances too which, fortunately, medication adjustments helped to abate. Visual clues are essential balance aides for me and why I have such a difficult time navigating places that are not well lit.
      CAROL, TEXAS USA

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      1. The gentamicin did the same job as a vestibular nerve section. And in fact, if the gentamicin didn’t work, VNS was next on my list to stop the violent disabling vertigo. I too had visual disturbances but no medication to help with it – as I thought is was just part and parcel of the whole process. My vision became my way to keep my balance. Darkness is not our friend when it comes our procedures. In darkness at home, I walk close to the wall with my hand touching it so I know I am standing vertically. If there is no wall, I lower myself to the floor and crawl. My balance cells were destroyed in 2004, and just this year (2019) I finally had vestibular therapy for my balance, as my surgeon insisted on it. All I can say is WOW! I should have done it earlier. What a difference it is making. When I first started, I could only do 2 steps, heel to toe, and then lose my balance. After 2 weeks, I could do 100+ heel to toe steps without overbalancing. Many of the exercises left me nauseous within moments of starting them, and it was a nausea that would last for days. But my therapist said to keep working through it. I did, and the nausea lessened to a point where the exercise didn’t make me nauseous anymore, and my balance had improved. Neuroplasticity is amazing! I have 6 exercises altogether, and the one that is now helping me with the darkness is closing my eyes and walking next to a wall with my hand lightly touching it, the other hand crossed over my chest. This one is very challenging. But I am getting better at it. It’s a work in progress. As a rule, I don’t navigate places not well lit, unless my husband is with me (to hold his hand to stop me if I fall). It is just not worth the risk of falling over. Perhaps over time, when I learn to trust my new non-visual balance, I will. But not just yet.

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