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Personal Stories & Testimonials

Ian’s Journey with Meniere’s

By Micky Sinopoli on April 12th, 2017

Ian Tracy

In around 2003 I was working in my job as a nurse and suddenly I tripped on a flat surface. My work colleague laughed quietly and said how did you trip on that? This unfortunately was the first indicator that there was a problem with my depth perception (or so I thought!).

In only a matter of days I was feeling dizzy, disorientated and had a loud hissing in my left ear. My local GP diagnosed labyrinthitis. After taking anti biotics my condition seemed to settle a little although my head felt “full” and I felt uncertain about turning my head too quickly.

Another local GP prescribed anti-nausea medication and changed my blood pressure tablets. The GP was convinced I was just feeling a side effect from my blood pressure medication. After a number of attacks over a short period the GP put forward the possibility of having Meniere’s. I was told in no uncertain terms that there is no cause and no cure so you have to learn to live with it!

My wife, family and friends were (and still are) very supportive in looking out for me. I socially withdrew as much as I could and my most secure and safe place was in bed at home. I managed to maintain a full time job as a nurse but had several “conversations” about my sick leave.

My wife was told by a co-worker of an excellent ENT specialist, not far from home, who worked with a lot of Meniere’s sufferers. I managed to have my GP write a referral and I attended his surgery. The doctor sat and listened to my history and smiled and said we have some options to help you get back to a relatively “normal” life. Then surprise, surprise I started having drop attacks. I couldn’t drive and my wife changed her job to work the same hours as me to ensure she could drive me to and from work or indeed take me home if I had an attack.

My ENT specialist suggested a hearing test and possible Gentamicin injection. My left ear came up as nearly totally deaf so in 2014 I took up the option of the injection. Since the injection I have had no drop attacks or severe vertigo attacks to date.

I have managed to understand my triggers which are stress and being overtired. In the last year I have taken up a healthy vitamin supplement regime which has helped hold me to date. Currently I can feel a little “out of focus” but the “beast” hasn’t gone beyond that as yet. I take Serc twice a day and use Valium (Diazepam) if I feel that I need it. I use the Valium sparingly and infrequently. I have found that easy exercise helps me to feel well. My balance is still ok and the tinnitus sounds like a waterfall (or so I have convinced myself!). I do worry about others who are struggling with Meniere’s and feel quite passionate about helping them if I can.

Monica’s Journey with Meniere’s and Vestibular Migraine

By Micky Sinopoli on January 31st, 2017

monica

I was diagnosed with Ménière’s disease by a GP during the 1980s when I was in my early thirties. This was after having had several episodes, one so severe that I was rushed to hospital emergency and admitted.

I fortunately went into a long term remission when I moved from the Hunter Valley to the Riverina and then to central west NSW. I was free of attacks for almost twenty years, the only attack being during a visit back to the Hunter.

I moved back to the Hunter Coast in early 2007 and the Menieres attacks started again, a cluster event at first followed by more random, maybe twice yearly, attacks until late 2013 when the cluster attacks began again. I was so ill so often, that I gave up my work in early 2014 and tried very hard to beat the problem, however, it would not go away no matter what I tried. I was subsequently referred to a Neurologist who then referred me to a Professor at RPA. Both told me I had the double whammy of vestibular migraine and Ménière’s disease . I also consulted a Kinesiologist who gave me some very useful tips, and I continue to see her.

In 2015 I returned to work but the cluster attacks became so prevalent I was again forced to withdraw by the end of the year . The cluster attacks were quite violent and continued until end of May 2016. My GP had given me a script for Stemetil injections and we have a registered nurse living nearby who has been called several times in middle of the night to help me.

I was fortunate enough to then meet with Professor Bill Gibson in Sydney in July who, following various tests, confirmed my diagnosis and injected my inner ear with some dexamethasone. I am thrilled to say that I have been enjoying much better health since but always know it is just around the corner.

I have shelved regular use of Serc, only taking it now when I feel whoozy, as I felt it was not doing anything for me. Doctors prescribed Allegron which I take regularly each evening and I have found that ordinary Panadol can help when I start to feel dizzy, if I can get it in time. However, when the worst happens there is Ondansatron (Zofran) – and I go nowhere without carrying sick bags and medications with me at all times. My next step is to get a tag or bracelet so that people can quickly be made aware of the problem if I have more attacks in public.

Monica has recently become a Whirled Foundation Committee Member. Click here to learn a little more about her.

Richard’s Meniere’s Journey

By Micky Sinopoli on December 7th, 2016

richard

I am over 60 now and have had Meniere’s Disease since the later 1980s. I was living in Perth at the time working for a mining company and started losing my hearing and having spectacular falls playing tennis – fortunately on grass courts. However that was the start of the broken ribs and wrist injuries as I usually managed to get my racquet in between me and the ground. My MD was confirmed by Prof Gibson when I managed to get over to the east coast for meetings.

There was much less information around then, but I did start the low salt/caffeine diet and started taking Serc and Moduretic.

Over the years my hearing became much worse and I wore a succession of hearing aids with frustration at the inability to get the clarity I needed. I had some very bad balance days and managed a few more breaks, but still managed a reasonable career which included stints in internal auditing, corporate accounting and local government before I ended up in Canberra in 2000 for 6 years as a Senior Executive at the Australian National Audit Office.

I was sitting in my office on a Sunday in early 2006, which was becoming all too common, when I got a message asking if I knew anyone who might take an assignment as the advisor to the Auditor General in Afghanistan. Being deaf had its advantages at times as I managed to sleep through several rocket attacks on the US embassy during the night in Kabul while my colleagues woke up traumatised. I spent 3 and a half years there and was ready to take up a role with USAID as coordinator of technical assistance to Afghanistan when the poor air in Kabul got to me and I was advised to leave. I took a role in Kazakhstan which also took me to Kyrgyzstan and Turkmenistan over the next two years. Unfortunately I got mugged and having poor balance managed to fall and smash one of my vertebrae. After a stint in a local hospital where only Russian was spoken, I was evacuated to Berlin where I spent 14 weeks in hospital and a rehab facility. My German language skills were poor and there were few people there who spoke English so I was often clueless as to what was going on.

I returned to Australia in 2011 and after doing some local work helping a Not for Profit I took an assignment in Dhaka Bangladesh for 6 months. It was hard as my hearing deteriorated further and balance issues were happening again, and that was the end of my overseas work.

By this time we had moved to Ballarat in Victoria and I was ready to be assessed for a Cochlear implant which was fitted in 2013. That has made a huge difference to me as I could hardly understand anything. I got involved with the Whirled Foundation Peer Support Group there and ended up as Coordinator.

I had been following a low salt/ caffeine diet for 10 years – well as much as possible considering where I had been living – and was looking for further help with balance when I became aware of the vestibular rehabilitation team at the Royal Victorian Eye and Ear hospital in Melbourne. I go there regularly for monitoring and adjustments to my simple exercise program that has made a huge difference to my quality of life.

Richard has recently become a Whirled Foundation Committee Member. Click here to learn a little more about him.

 

I’m in a place called Vertigo – Lorraine’s balance story

By Micky Sinopoli on October 23rd, 2016

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My balance disorder hit me in a way it had never before on my way from Copenhagen to Venice in 2009. Vertigo, migraines, horrific dizziness and nausea, blue spots clouding my vision, a high pitched throbbing in my ears, hot flashes, the sickening sensation of falling backwards, all the while with sobering mental cohesion. I couldn’t lift or turn my head without my eyes spinning in their sockets, before blacking out. It scared the crap out of me.

Vertigo describes the medical condition by which the vestibules of the inner ear become displaced, completely annihilating the body’s ability to comprehend balance. In extreme cases like mine, the seriousness of my debilitation results in dangerous fainting spells, amongst other (brutally unpleasant) symptoms. Trains and buses are even worse than cars, but boats and planes are in a torturous league of their own. The second I set foot on any water vessel I go dizzy with nausea and faint, lulled into a heinously painful limbo of not-quite-conscious queasy.

I am an avid traveller, an actor and dancer, a singer and puppeteer. Being a dizzy performer defines the spotting technique quite nicely; ‘The goal of spotting is to attain a constant orientation of the dancer’s head and eyes, to the extent possible, in order to enhance the dancer’s control and prevent dizziness.’ Basically, you are training yourself to look at the same spot, before turning again. But how can one spot, when one has no balance? The answer is : slowly. Dancing is a much slower learning process for those with balance disorders, as it is that much more challenging to perform in a kind of topsy-turvey alternate reality to the rest of the dance class (who aren’t suddenly veering off to the left, crashing into things and can attempt turns more than once without needing a sobering lie-down in the corner).

In my stomach-churning-stupor, this dizzy dancer remembers little about that trip to Venice, one of the most beautiful places on earth. A human-made entity that defies the natural world; the real-life Atlantis, barely above the surface. I’m queasy on boats at the best of times, the curse of motion sickness haunting my existence. Here, disembarking a water vessel makes no difference. Nausea is everything, everywhere. The endless swaying momentum is inescapable. Closing my eyes only muddles my inner ear more; I feel as if I’m on turbulent stormy waters on a ship out to sea, sinking, lurching, bobbing, rocking. My spotting ability had hit zero. I’d picture myself standing somewhere stoic, a football field, or perhaps lying flat on the cool cement of a basketball court at night. Envisioning this brings microscopic relief, until the sound and smell of dank water slapping against mossy stone is too strong to ignore. What I would have given to ‘sountenu’ or step out of my swimming, spinning, sickening head, and appreciate all this place has to offer. But I couldn’t. I was very, very unwell.

I try to sit steady; a fresh wave of crippling nausea engulfs me. I collapse, nearly concussing myself in the process, unconscious for some minutes. Eventually, my condition worsens, and I need to be hospitalised, where I would wait for hours to be diagnosed by an Italian doctor as suffering from a U2 song. In fact, my degenerating condition would force me to return home a fortnight later.

But first I needed to get to the hospital…

… Alas, Venetian-hyperbolic-irony: THE AMBULANCES HERE ARE BOATS.

Like Lorraine, when people are affected by balance problems, they need help – access to understanding, information and support. They need assistance to cope with the associated symptoms of their condition.

Vestibular disorders affect an estimated ONE Million Australians. That means 1 in 20! While these conditions are not life threatening, they are common and life changing.

Please make a tax deductible donation to Whirled Foundation today, so we can continue to help people just like Lorraine.

Click here to donate today.

Our Everyday Hero – Jessica’s Meniere’s Journey

By Micky Sinopoli on September 27th, 2016
Jessica

Jessica

My Meniere’s disease journey started in 2012, I first noticed the hearing loss and tinnitus in my left ear so I went to my GP who conducted a simple hearing test and referred me onto the audiologist. After many months of going through the various hearing tests and ear moulds for a hearing aid, I received my first hearing aid at 21, which was a lot to deal with at the time.

I suffered from my first vertigo attack whilst at work in 2012, it was all very confronting as I had no idea what was happening or how to explain how I felt to anyone. This resulted in being hospitalised, where they simply told me that it was just a vertigo attack and sent me home. It was not long after this that I went back to my GP who referred me onto the Ear Nose and Throat specialist.

After my first consultation with the Ear Nose and Throat specialist I went for the balance testing, this was over a 2-week period and there are many thoughts that go through your mind during this time. In April 2014 I was finally diagnosed with Meniere’s disease. It was such a relief in a way to finally get a diagnosis after such a long time, although unfortunately my employer at the time was not as understanding as I first thought and I lost my job in July 2014. I am still yet to find employment after this, but I am staying positive and hopeful that the right job is out there waiting for me.

Meniere’s disease has had an impact on my social life, friendships and job prospects, but I wont let it rule my life so I have come up with ways to get around these issues. I have also pushed myself past the fear of having a vertigo attack in a public place, which sometimes used to stop me from going places. I have found that talking about it to people has really helped me and it has also raised awareness.

My partner has been a huge help to me during this journey; he has been very supportive, understanding and has driven me to many appointments & places when I felt as though I couldn’t drive.

I am now at the stage where I haven’t had a vertigo attack since April 2015 but I have had 5-drop attacks in the last 12 months.

It was very difficult finding reliable information on Meniere’s disease until I found the Whirled Foundation’s website and Facebook page, this provided me with a lot of information on Meniere’s, the low sodium diet and related recipes and it also gave me a way to talk to people who are going through the same situation.

So I’d like to say a huge thank you to the Whirled Foundation for providing that opportunity to get the information I needed and for an amazing online support group that you have created, this is why I have decided to fundraise for Whirled Foundation; to show my appreciation and raise awareness for Meniere’s disease.

If you would like to help Jessica raise funds for Whirled Foundation, click on the everyday hero logo below:

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Kura, QLD

By Micky Sinopoli on July 7th, 2015

“I would like to thank you for all the useful information contained in your monthly eNewsletter [Whirled News] and your magazine “Equilibrium. I have found both publications to be very informative.”

 

John, TAS

By Micky Sinopoli on July 7th, 2015

“The membership information pack is invaluable and personally I found the low salt diet information and supplies very helpful…

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Patricia, VIC

By Micky Sinopoli on July 7th, 2015

“I wanted to say a big THANK YOU to you for your kindness to me . I have had Meniere’s disease for over 40 years and was under the impression that it was in the ‘burn out’ stage, but not so!..

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Cecilia, NSW

By Micky Sinopoli on July 7th, 2015

“I am just amazed what you do for Meniere’s sufferers and the great information that’s in each Equilibrium magazine. I find them such a help when people ask me about my condition”

 

 

 

Joy’s Story

By Micky Sinopoli on July 6th, 2015

“You’ve got Benign Paroxysmal Positional Vertigo” I was told by a new GP at the medical centre. “Go home and do these exercises and you should feel better”. That was the start of 4 long years to a final diagnosis of my Meniere’s.

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