 Disclaimer
Meniere's Australia encourages contact between people who have Meniere's. Knowing how others have experience and coped with Meniere's can help you feel less alone. However please note that the advice, opinions and information given in, or implied by these personal stories remain those of the stories' authors and are not in any way endorsed by MA.
 Trouble Getting a Diagnosis –
A Young Mum’s Experience with Meniere's
My Meniere's started after the birth of my first child. It was six months after the event and I woke up at 1.00am in the morning and couldn’t stop throwing up, the room was spinning and I could barely walk.
Nothing like this had ever happened to me. I was rarely sick and a fairly active person prior to the birth. My husband took me to the hospital and we were told my blood pressure was low and that was the reason. I was put on a drip for a couple of hours and sent home.
‘.. nothing wrong with me..a perfectly healthy 26 year-old’
A few months later the same thing happened again. I was taken to the hospital and was told there was nothing wrong with me and to go home. I was still throwing up, dizzy and couldn’t even walk without the support of the friend who took me to the hospital. I phoned the doctor to make an appointment and a myriad of tests were done. The result – nothing! I was a perfectly healthy 26 year-old.
‘My doctor told me..everything will be fine once I have the baby’
Everything seemed to pick up and I fell pregnant with my second child. I had morning sickness for the first time and couldn’t seem to shake it. As the pregnancy progressed, I seemed to get worse and worse. My doctor told me it was just because I had low blood pressure and everything will be fine once I have the baby.
‘I went to a different doctor and was told it was hormones.’
Once I had my baby it didn’t get any better. I felt tired, fatigued and totally spent. I was constantly dizzy and every time I breastfed, the whole room would just spin and make me nauseous. I had to try and concentrate on a spot in the room while I breastfed and just hope it would be over soon.
I went to a different doctor and was told it was hormones and that I had to keep breastfeeding or it would be detrimental for my child. I kept at it for four months until my husband said enough was enough. He couldn’t stand the sight of me being so sick and being told by doctors there was nothing wrong.
‘ perfectly healthy..27 year-old..take some aspirin’
I saw a physician and was told I was a perfectly healthy (now) 27 year-old. I had a CAT scan and everything was clear. I was then referred to an Ear, Nose and Throat doctor as a ‘just in case’ measure and was told that I probably had a blockage in my ear and to take some aspirin.
Things were getting worse, I was constantly dizzy - my head was spinning, I was sick in the stomach, the back of my head felt like it was going to explode and I felt like I was often walking on a plank of wood which was getting washed to and fro by the waves on the beach.
‘..numerous doctors looking at me as if I was a hypochondriac’
It was very difficult to look after my two boys but they were the reason for me to keep on going. It was so frustrating being sick day after day and numerous doctors looking at me as if I was a hypochondriac because all of their tests were coming back normal.
My ENT (Ear, Nose and Throat) doctor referred me to another specialist who was going to test my inner ear to see if they could detect anything unusual. Unfortunately this doctor was on leave for a couple of months and unless it was urgent - I was classified as non-urgent - I would have to wait.
‘..the biggest attack of my life’
Then one day I had the biggest attack of my life - fortunately my Mum was visiting and helping me out. I was feeling cold and out of sorts during the morning and could barely eat because I felt so sick in my stomach. I managed to squeeze in a piece of toast and told my Mum that I was going to have a shower to try and warm up. The next thing I knew, my ears were roaring, the room was spinning and I was throwing up everywhere. I collapsed in a heap on the shower floor.
Mum came racing in and picked me up. I somehow managed to get dressed and with two boys in tow we walked to the doctors surgery. Well, Mum walked and somehow managed to drag me! The doctor saw me straight away, put me on a drip because my blood pressure was very low and shipped me off in an ambulance to the hospital. I then again went through more tests all day and night. I was kept overnight in the emergency section, as there were no available beds in the hospital.
‘the tests came back normal … I must have had a bad virus’
The next morning I was told that all the tests came back normal and I must have had a bad virus. I was so upset and constantly in tears. I just couldn’t understand why no one could see what I was going through.
I started thinking that maybe I was a hypochondriac and it was just a case of post natal depression. My Mum spent a lot of time helping me out with the boys and trying to keep my spirits up.
‘..last resort..inner ear test’
Our last resort was this inner ear test. The test was the one where they put electrodes in your ear and you get ‘zapped’ at different frequencies. (Ed note: the test is called electrocochleography). The results came back two weeks later and I was told that I had Meniere's in both ears.
‘My ENT doctor said that he never considered Meniere's..too young’
My ENT (Ear, Nose and Throat) doctor said that he never considered Meniere's because I was too young and didn’t fit into the Meniere's category. I was then put on diuretics, told it was important to keep my salt intake down and come back it I had any problems. The diuretics made me feel so sick and after a week of taking them I was getting worse and worse. I phoned my ENT doctor and was prescribed a lower dosage and was told how it was important for me to take them because I had Meniere's in both ears and had to get that fluid out.
‘..local doctor..suggested..contacting a Meniere's Support Group’
It was to no avail because after a few days of taking the new diuretic tablets, I was throwing up again and constantly sick. I was so sick I was just doubled over and couldn’t even stand straight. My husband then took me to see my local doctor and he suggested dropping the tablets, keeping the salt intake down and contacting a Meniere's Support Group.
I did this and I spoke to John Abbott and he made me laugh. It was the first time in about two years that someone understood how I felt and listened to me. I got off that phone and I was laughing and crying at the same time. I wanted to start getting my life back on track.
‘Now I feel about 80% in control of my Meniere's!’
Now I feel about 80% in control of my Meniere's! I don’t take any tablets - only Serc when I have a bad attack and keep on a fairly strict low salt diet. I have even started playing hockey again. I only managed to play one game every few weeks and managed half a season. But I did do it!
And when I wake up and walk into walls and have to crawl down the passageway to the bathroom to get my Serc tablets it doesn’t seem to bother me as much. My sons race me down the passageway and we end up laughing and laughing on the floor.
Whenever I get down in the dumps and think ‘Why me?’ I remember my first phone call to John, smile and think it doesn’t matter why and I get on with living my newly adapted life.
I am lucky that at the moment I do have my hearing in both ears - which isn’t always reliable and does fade in and out - but I have the rest of my life ahead of me.
Kelli Beer
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