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"I didn't have a headache so it couldn't be a migraine, could it?"

Vestibular Migraine
Janis Bennett. Image from Bluestone Magazine.

By JANIS BENNETT

In December 2012 I had come off a particularly stressful year, as well as the usual stuff – work deadlines, financial woes, and the ‘normal’ anxieties that come from our 21st century modern world, as a family we had had our fair share in years previous of significant life altering stresses that didn’t help our anxiety levels, nevertheless, that just all got pushed further away.  I was approaching 40, married with a 6 year old who was about to start school.

I was working part time, going to the gym and I was like most people, perpetually busy like the hamster on a wheel.  I did like my time at work though, the work regime appealed to me, and of course for a mum it’s an easy social outlet. Be that as it may, the shine was coming off it. I was burnt out and sick of the daily grind.  I was all set for starting holidays for 7 weeks for the summer break. Trips to the beach, time with family and friends and most importantly no alarm to ring in the start of yet another ground hog day.  I wasn’t listening to the quiet twinkling of the internal alarm bell that was ringing.

Things didn’t quite go to plan.  I was fighting a niggling neck/shoulder mystery injury, a cold/flu that was lingering and I was feeling slightly dizzy at different times during the day.  I put it down to having one too many pinot gris on more than one occasion over the Christmas festive season.  I soldiered on as most of us do, too busy to be sick.

A few weeks went by and then came terrible neck/shoulder pain that I couldn’t shift no matter how many painkillers I took and add to that dizziness that was unsettling.  I couldn’t safely drive nor could I stand for too long without the fear of falling over.  I was needing to stay in bed for days to rest. It was like living on a boat with daily nausea, vomiting and disequilibrium, I was frightened.  Something just wasn’t right. The internal alarm was sounding loud and clear now.

I went to my GP numerous times and they tested for everything from pregnancy, tumours, and chronic fatigue type illnesses.  I was full of anxiety with each new set of tests that kept me in limbo. One of the hardest things I’ve had to deal with was the constant pain and the fact that I had less energy than my 88-year-old grandmother.  This was embarrassing!  I wasn’t getting answers so I did what most of us do…. I googled it.  I scoured the internet and worked out it could possibly be Vestibular Migraine.  Vesti-whoa? Migraine? I suffered from migraines in my 20s, this wasn’t like them.  I didn’t have a headache so it couldn’t be a migraine…. could it?

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After 7 months, I finally had my suspicions confirmed via a Migraine Neurologist.  I had changed my diet and tried to work out my triggers.  The neurologist advised that it would only get better with medication as it is caused by a chemical imbalance that needed to be rectified.  Unfortunately Vestibular migraine is often brought on by stress and hormonal changes in our bodies.  No amount of herbal tea or chia seeds was going to help.

Vestibular Migraine
“A few weeks went by and then came terrible neck/shoulder pain that I couldn’t shift no matter how many painkillers I took.”

Now, 14 months on, I’m on a fist full of pretty coloured tablets that are kept in a very attractive 7-day drug carrier container just like my Nanny. The medications available are many, varied and are a long process.  There are no guarantees as to what would might work for my sensitive migraine brain, and by working I don’t mean cured, I mean helping me best cope, as this isn’t going away, drugs or no drugs.  This illness has changed who I am and how I live my life dramatically.  The most severe side effect from one of the medications I was swiftly taken off was psychosis and disassociation ~ scary as hell.

My current medication has taken 6 months of tweaking, and I’m still in the titration stage after all this time.  Then there are the side effects.  The rippers I have are weight gain, extreme tiredness, and bloating, mouth ulcers, and forgetfulness, lack of concentration, dizziness and Bruxism.  The meds definitely help though, but it’s the want of a lesser evil.  I am also undertaking through a specialised physiotherapist, Vestibular rehabilitation to try and repair and reset my inner ear.  Limiting stress through yoga and meditation also helps but I’m also learning to live a quieter life, and I’m a far cry from my former busy, high achieving self.  Having to rest and take it easy drives me crazy.  I miss the person I use to be.

So what is Vestibular Migraine?  It is a migraine of your inner ear.  It is most common to strike women in their 40s with personal and family history of migraine, but men aren’t totally off the hook.  For some people it lasts a few minutes, for others like me, it doesn’t go away.  The ‘aura’ is the neck and shoulder pain and because your body is trying to ‘right’ itself and keep you balanced, it is in a constant state of fatigue.

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For some people the impact of the dizziness is irritating but not severe, however for others it makes the simple acts of walking, driving, working, shopping, being active and enjoying life’s pleasures difficult and debilitating.  For me these changes have caused depression, anxiety, and financial pressure and put strain on my relationships with family and friends as the person they once knew has changed.  I often hide or lie about how I really am as people don’t really understand and of course there is that “here we go again” look.  Unfortunately, this is my lot and there is no magic wand to cure me, it is just learning a new way of living, albeit resentfully.  I am grieving for the ‘me’ I have lost and it’s taking time to understand and accept how I now have to live my life.  It does make me sad though.  Ignorance makes me sometimes wonder would it have be easier to have cancer, at least people understand that life sentence.

vestibular migraine
Image from Janis’ blog.

I physically needed rest but mentally I needed stimulation. One thing I did have was a laptop.  I started reading blogs, in particular food blogs.  I’ve always loved cooking and eating (I was a chef a few decades ago).  Get me started on food and you’re eyes could glaze over in boredom if you don’t share my enthusiasm.  I decided, with some prodding from friends and family, to start my own food and lifestyle blog.   I had no clear direction or agenda.  What has happened, however is that it has given me the drive and motivation to get up off the couch and cook.  Something else to focus on with all my time lying horizontal as it’s easy to type or edit photos.

It has unearthed a love of writing, photography and baking. I am embracing a more ‘simple’ life away from consumerism, slowing down and being more mindful.  My blog “A gluttonous wife” (www.agluttonouswife.blogspot.com) has literally saved my sanity and I’d say my marriage.    It’s been a roller coaster of emotions, pain and change to our lives, but not all have been bad.  I know that the future is brighter, it has to be.

For more information on Vestibular Migraine some helpful links are:

www.mvertigo.org

www.dizzyday.com

My name is Janis Bennett and I am 40 years old.  I am married with one primary school age child.  Prior to this illness I trained as a Chef in Melbourne with Qantas flight catering centre then worked in various hotels such as the Grand Hyatt.  Upon moving home to Warrnambool, Victoria, I worked as a chef but went back to school to study Hospitality Management where I switched from back to front of house.  I worked as a Restaurant Manager for many years before completing my Certificate 4 in Workplace Training and Assessment and worked for both a Southwest Tafe and Avtes, a private RTO as a Hospitality Trainer and Assessor.

Do you know anyone who has suffered from Vestibular Migraines?

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