Meniere’s ? Never heard of it ? Is it a tropical disease ? Is it rare ? Are you making it up ? Yes, these are all common responses to my rare announcements that I do indeed suffer with Meniere’s Disease. It is one of those unknown illnesses that is very rarely spoken about, either among the local community or in the press.
Please bear in mind at all times while reading this that I am not medically trained and if you are in any doubt about your own health or a loved one then please contact your doctor.
So what is Meniere’s ? Meniere’s is a rare disorder that affects the inner ear. The symptoms include vertigo, tinnitus, hearing loss, pressure in the ear and a constant unbalanced feeling. These attacks are usually intermittent and come on without much warning. They last in varying lengths but usually between one hour through to 24 hours. Symptoms also vary widely between people and can vary in severity too. As the disease progresses the attacks can change in severity. Sometimes they worsen and sometimes they lessen. And this is the problem for most sufferers.
There is NO pattern to Meniere’s. It is unpredictable and there is no way of determining how long it will last. This is perhaps the greatest issue that I and others detest so much. Can you imagine leaving the house every day not knowing if you will have a severe vertigo attack ? Sometimes so severe that you are unable to stand or work out which way up the world is. I have, on a few occasions been bundled off in an ambulance to the nearest hospital, while the paramedics check me for signs of a heart attack or stroke. The suddenness of the attacks is so quick that you do not have time to return home or even make a call to a loved one. You are in fact at the mercy of strangers who find you on the floor unable to stand or talk sense sometimes.
According the the NHS website, around 1 in 1000 suffer from Meniere’s Disease in the UK. Personally I would put that figure even higher as I think Meniere’s is one of the most under diagnosed conditions in the country. So many people are diagnosed late after suffering for many years, because there is no one definite test that can pin point the condition accurately. In my case I was given a firm diagnosis TWENTY years after my first symptoms ! And that is not unusual.
That brings me nicely to my own story of Meniere’s Disease, my background and how I cope with it ( or not as the case may be ). I had my first symptoms on the 3rd March 1986. Yes I remember it well. I was working in a florist at the time doing some work experience for my floristry qualifications. I hadn’t intended making floristry my career but, after leaving university with a degree in History I found suitable jobs in the museum sector few and far between. So there I was one morning wiring roses for a wedding bouquet when I suddenly felt the room spinning and ended up face planting in the bride’s bouquet which was on the work bench in front of me. I was sent home to rest and went to bed thinking I had a virus.
I was left, however with a constant unbalanced feeling and intermittent bouts of dizziness, severe ear pressure and tinnitus, so much so I severely restricted my driving. When I found out I was pregnant a few weeks later my doctor decided that my pregnancy and change of hormones were contributing to my dizziness issues. So for the remainder of my pregnancy I battled with morning sickness, heartburn and terrible bouts of vertigo. I was so looking forward to the birth of my baby, not just to hold her in my arms, but to be rid of the debilitating intermittent vertigo that was ruining my life. And so in the November I gave birth to my lovely daughter and thought no more about the dizzy spells. That was until I realised after about two months, that the dizzy spells had not left me and showed no signs of dissipating.
Once again my doctor advised me that it was hormone related and that it would clear up if I gave it enough time. After two more years of suffering the debilitating symptoms I became pregnant again. And yes, you guessed it ! My doctor once again said it was hormone related. I persisted with the symptoms and they became part of my life. I was made to feel like a complainer if I dared to bring it up in front of a doctor. So following the birth of my second and third child I decided to try and find a solution to my problem. It wasn’t easy. Many times I was rebuffed and given different diagnosis, none of which made any sense. I was often told it was a ‘womans’ issue ! It isn’t by the way. Men suffer with this condition too !
Eventually I paid private and found myself a good ENT Consultant who diagnosed Meniere’s in 2005. WHAT A RELIEF ! I didn’t care what I had by that stage. I was just glad that I finally had a name to my issues. I received various medications for my condition and I was sent on my way. Was that the end of it ? No, sadly not. I have still had attacks while on the medication, although I do receive a ‘warning’ before it gets to a serious attack. This gives me time to get home or phone for help to get home.
So if you are reading this because you have Meniere’s or suspected Meniere’s, or know someone that does, then you have my greatest sympathy, especially if you haven’t received a firm diagnosis. I cannot comment on the medication you may / may not receive or the care you receive at the hospital, but I can share my simple ways of helping yourself through this.
I hope that this blog post has in some way helped you, whether you have Meniere’s or you know someone who does. If you have any questions please comment below or alternatively please message me. Have you any experience of Meniere’s ? If you do, it would be great if you could comment below so others can read of your experiences with this complicated condition.
Until next time dear friends, I wish you well. Stay healthy and take care.