Tag: vestibular

It Will Change Your Life #9

.Reading time 10 minutes.

Wednesday, 27th November – balance therapy

Balance

/ˈbal(ə)ns/

noun: balance; plural noun: balances

1. an even distribution of weight enabling someone or something to remain upright and steady.

In 2004 I made a conscious decision to have my balance cells destroyed. I couldn’t do the horrendous, unpredictable, debilitating, violent, torturous, four-five hours of insane vertiginous spinning and nausea and vomiting and staring at one focus spot for the entire four-five hours anymore. I was more than done. So when my ENT offered to inject gentamicin into my middle ear to kill off the balance cells, halting the vertigo, I didn’t think twice.

Was the gentamicin my first port of call? Absolutely not. I had already had Meniere’s disease for 9 years and  tried:

* Low salt diet

* Diet elimination

* Stemetil

* Diuretic

* Serc

* Sound therapy

* Acupuncture

* Prednisone

* Grommet

* Gentamicin. The gentamicin worked. One shot injected in through my grommet with some bicarbonate of soda and sterile water mixed with it to make it penetrate better.

The procedure took place at my ENT’s procedure room in the city. I lied on my right side while he injected the concoction in through my grommet.

‘Isn’t that hurting?’ he had asked me as he infused the mixture into my middle ear.

‘Yes,’ I had said, ‘but I am envisaging it destroying the Meniere’s in my middle ear. It’s a mind visualisation technique I taught myself when I was young, when I had growing pains.’

I remained on my right side, left ear facing the ceiling for 20 minutes after the procedure, then went home, where I went to bed and rolled onto my right side to keep my left ear up. I slept for 2 hours.

The next day I had bouncy vision when I walked. It has a term – oscillopsia. And was a side effect of having my balance cells destroyed. It was a good sign that the gentamicin was working, my ENT had said.

https://www.healthline.com/health/oscillopsia

Three weeks later I was back teaching full-time, learning to trust that I wouldn’t have anymore vertigo attacks. Fifteen years later, I am still vertigo free.

Choosing to destroy my balance cells to stop the vertigo was not a hard decision. Meniere’s disease had total control on my life, and I wanted it back. There was a risk of losing all of my hearing, but that was a preferred choice to suffering through the torturous vertigo anymore. The gentamicin stopped the vertigo.

I gained quality of life again – socialising, working, independence, driving, and slowly became more confident in my life.

I lost a little of my hearing, but not a lot.

If my vertigo returned, would I do it again?

Yes.

When I joined global Meniere’s groups, I discovered that others who had had this procedure done, were having balance therapy. I was shocked that there was even a thing called balance therapy. When I had my procedure done in 2004, balance therapy didn’t exist where I lived. I had to learn to walk again, finding my new balance, learning my limitations as I went. No help.

Today, I sit in the reception of the Vestibular Therapist’s office, with a referral from my Cochlear Implant surgeon.

Mandy greets me with a smile. The universal language that puts you at ease. Curiosity, and my shadow, Meniere’s, follow her to her office. I sit on a chair and she questions me about my Meniere’s history, writing notes.

‘I’m an concerned about your imbalance after 15 years. You should not have that deficit anymore. It may point to another problem you have. Do you have Meniere’s in your right ear,’ she asks.

‘No,’ I say. Anxiety joins us in the room.

She frowns at me. ‘Let’s do some tests and see what is going on.’

She asks me to balance with my eyes closed for 30 seconds. I pass this test. 😊

She asks me to walk across the room, heel to toe, heel to toe, heel to toe. I fail miserably. Two steps and I fall over. ☹

Then she asks me to look at the letter “N” on the wall, and moves my head left to right over and over and over, quickly, then asks me whether the letter moves. Yes. She repeats that test, but moves my head up and down over and over and over, quickly, asking whether the letter “N” moves. Yes.

Mandy sits close to me on my left. I have to sit at a 45-degree angle to her and focus on her nose. She then moves my head left to right over and over and over again, quickly. ‘That’s not too bad,’ she says.

She repeats the test, but this time she sits on my right side. I try to keep my focus on her nose as she moves my head left to right over and over and over again, quickly. I can not keep my focus on her nose at all. ‘Yes. That’s the gentamicin damage in your left ear,’ she says.

I sit on a massage table.

Mandy places some goggles over my eyes. She wants to see if I have Benign paroxysmal positional vertigo (BPPV). She does the Epley manoeuvre. No vertigo or eye movement evident.

Mandy stands and talks me through some vestibular exercises for neuro-plasticity – the brain relearning balance. I cannot express how happy I am to get these exercises. They will help me no end.

Except, each of the exercises make me feel insanely nauseous. I blow a controlled breath through my lips. I’m an expert at it.

‘Do you want to stop?’ she asks me during each exercise.

‘No,’ I say. ‘I can do this.’ And I get through to the end.

‘Can I take stemetil when I feel nauseous with the exercises?’ I ask.

‘No,’ she says. ‘It’s a vestibular suppressant, and your brain won’t learn the new balance pathways and desensitisation.’

‘What about Serc?’ I ask.

‘No. Don’t take Serc either,’ she says.

‘But it is only supposed to increase the blood floor in the inner ear,’ I say.

She shook her head. ‘No. That’s what they want you to believe. It a vestibular suppressant, like stemetil – it’s good for Meniere’s, but not other vestibular conditions.’

‘Some doctors say it does nothing for Meniere’s,’ I say, frowning, recalling how my own ENT and the Cochlear Implant ENT scoffed when I mentioned Serc. I wondered why the makers of Serc would say it increases blood flow, while the vestibular therapist, who specialises in vestibular retraining says it’s a suppressant. I know for a fact that many Meniere’s people say Serc keeps their vertigo at bay.

‘From the conferences I have attended, it does indeed work for many Meniere’s patients, not all though,’ she adds. Yeah, I was one who it didn’t work for, I think.

I leave her vestibular therapy room, which is in a really old house that is not level. I catch my balance as I walk through it. My shadow, Meniere’s, laughs at me. I am armed with vestibular exercises, and an appointment for next week.

I have now completed all of my necessary Cochlear Implant work-up appointments.

Next stop, the Cochlear Implant. December 19th.

It Will Change Your Life #4

.Reading time 12 minutes.

October 31, 2019

I’m filled with so much doubt. I am choosing to get a Cochlear Implant. Am I allowed to choose? Or should I just accept my fate that I will remain without hearing for the length of my days, auditory colour disappearing from my life.   

I didn’t choose to have Meniere’s disease. I didn’t choose vertigo. I didn’t choose deafness. I didn’t choose tinnitus. Just like other people who didn’t choose their incurable diseases or illnesses.

A Cochlear Implant feels like a second chance. A second chance at hearing. Of taking back something Meniere’s disease has taken from me. In my mind’s eye, I am facing the beast of Meniere’s, my sword drawn.

I want to be violent with Meniere’s. So violent. I hate it. I hate what it has done to me. What it has taken from me. I hate what it does to its victims. I want to slay it with an intensity that will obliterate it for eternity, with such force that it withdraws from bodily habitation of every person who suffers from it.

Cure come soon. Please.

I arrive in the city. I look up briefly from the footpath that I walk on. A rarity. My normal walk is focussed on the ground in front of me, ensuring each step will keep my balance. I see an old windmill on top of the terrace. Unkept grey, striking against the beautiful lilacs of the Jacaranda tree. It was built by the convicts in the late 1820s and is the oldest windmill in existence in Australia. Due to its windless location, the windmill morphed into a symbol of “dread and torture” as penal Commandant Patrick Logan used convicts to work a treadmill he had constructed to keep the arms turning in lieu of wind.

Dread and torture. Fitting. A perfect symbol for Meniere’s disease.

A weathervane decorates the uppermost part of the windmill. And there sits a crow, blacker than night. It squawks. Welcome, I hear. Today, you will learn of your fate.

I inhale deeply. My eyesight returns to the uneven, battered, cracked path in front of me. Falling is never a good thing. Once you have your balance cells destroyed, when you fall, you have no idea where to place your hands to protect yourself.

The first time I fell was Christmas 2018. We were on holiday in Tasmania, walking the Dove Lake trek at Cradle Mountain. 5.7 km. 3 hours.

After the walk we entered the cafeteria for a drink. Without warning, tears filled my eyes. In public.

My husband turned to me and the look on his face said it all. His eyes widened. ‘What’s wrong?’

‘I fell,’ I said. I wanted to sob. Loudly. Aftershock from the fall. I caught the sob in my throat. ‘I fell and I couldn’t stop it.’

His eyes filled with tears, but they didn’t leak down his cheek like mine. I always hate seeing his eyes that way. He was following me as we walked, to catch me if I fell. He always does that for me. My protector. And when it happened, there was no way he could stop it. I remember the panic in his voice as he leaned over me, asking if I was okay, looking over me, again and again. ‘Did you hurt yourself?’ he had asked.

All I could say was, ‘My phone is under the bush, over there.’ I had no idea how I saw it slide under the bush. When I fall I have no idea where to put my hands to stop me, or protect me – inside my head I see a body but no arms or legs. That’s what destroying your balance cells does. I just have to wait for impact and suffer the consequences.

‘I don’t care about your phone. Are you okay?’ he said.

‘Yes,’ I said. It was a lie. I was hurt. But I wanted to get up to save face. There were many people on the walking track. I HATE YOU MENIERE’S!

My husband pulled me up off the ground. My daughter picked up my phone. She was too quiet. How many times had she witnessed Meniere’s bring me to my knees with vertigo, deafness, depression? And now falling.

I blew out a long breath between my lips. Then set a rock in my sights to sit on for a moment to assess my injuries, then walked there, my husband holding onto my arm to support me. I wanted to yell at him, “LET GO OF ME. I’M NOT AN INVALID!” But I didn’t. He was trying to help.

I sat on the rock, looked over the lake and focussed on where I hurt – my wrist, my arm, my ankle and my back. Hold yourself together, I thought, people fall all the time. Put on your “I’m okay mask”.

‘Are you alright, Ma?’ my daughter asked.

Hold yourself together. The emotion of ‘I want to fall to pieces’ rolled through me. Hold it together. Breathe. ‘It could be worse,’ I said, ‘I could have broken something.’ I was hoping that I didn’t break anything. My wrist, arm and ankle were throbbing. Not to mention my back spasms.  ‘Thanks for picking up my phone,’ I added.

She nodded, looking at me with concern in my eyes. 

‘I’m sorry for falling,’ I say to her. I don’t want her to be embarrassed by me. I HATE YOU MENIERE’S.

And of course, she is not. She never is. She’s always one of the first to help. It is my own self-judgement that betrays me.

I stand. In pain. But I can walk to finish the last hour of the track.

My daughter is in front of me, glancing back at me once and a while, and my husband behind me. I’m glad. He can’t see me wriggling my fingers to check my wrist, and feeling where my right arm hurts, nor the wince on my face when my ankle hurts more than I want it to, or my back spasms. All I can think of is when my son would roll his ankle at elite triathlon training, and his coach would tell him to walk normally on it. So that is what I do, despite the pain.        

Back at the cafeteria …

‘I could have died if I fell in a different part of the walk.’ It was true. Parts of the track were on a boardwalk above the ground that fell steeply, scattered with rocks and trees. No rails to stop a tumble.

‘I know,’ he whispered. I watch his watery eyes and see him swallow harder than usual. ‘What do you want to drink? Do you want an ice-cream?’ He was using the distraction method. He knows me well.

Claire and I find a table away from most of the people. My wrist and arm throb. My back was spasming and my ankle twinging. Swelling was setting in. I ate my ice-cream, flicking tears from my eyes when they dropped. At least I don’t have vertigo, I thought. It was a good day, after all. Any day without vertigo is a good day. Suck it up, I tell myself, it could be worse.

We enter the ENT’s reception area. I laugh then shake my head in disbelief at the choice of carpet. The pattern on it makes me nauseous – thanks to my shadow, Meniere’s.

My ENT calls me in. ‘Good news,’ he says. ‘You are a candidate for a Cochlear Implant. I have signed you off on it if you wish to proceed.’

I swallow. There it is again. I get to choose.

I nod. But not with confidence. More like a ‘roll with the wave’ type of nod. I’m following a path but not certain of that is where I am meant to be. How will it change my life?

He refers me to a surgeon, and then as I leave, I thank him for his support throughout my Meniere’s journey.

‘You don’t know how difficult it has been for me, when there was nothing I could do to help you,’ he says.

‘But I am one of your success stories,’ I remind him. I wouldn’t be standing here today if it wasn’t for his help.

He shakes my hand. ‘Keep in touch. I want to know how you go.’ He gives me a smile.

I walk out of his office and numbness sets in. I’m a cochlear implant candidate. This just became real.

Next step. The Cochlear Implant Surgeon appointment.