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My Story - Introduction

My Father, Aunt, 2 Uncles, Brother, Cousin and Grandfather (now deceased) suffer from vestibular and inner ear problems. I have had symptoms for over 10 years. Amongst many tests (MRI Scan , CAT Scan etc), I have had balance tests (caloric test) which confirm my inner ear/balance mechanism is not functioning correctly, however after my specialists original reluctance to "label" me with official Meniere's, as my hearing level was still quite good, I gave up with all the appointments and went it alone for a number of years. After what felt like remission, the symptoms flared up again and so I returned to the care of my local ENT specialist in April 2007 where I recieve ongoing treatment for a-typical Meniere's (see diary for up to date info).

My family and I are convinced that we are all sharing the same family problem ; several have been diagnosed with Meniere's and the rest of us share the same symptoms and problems but have given up with the health care system.

Briefly, I have tinnitus, episodic vertigo and daily dizziness, a sensation of ear fullness and fluctuation in deafness and hearing problems. There seem to be many other problems experienced by people with Meniere's and vestibular disorders that rarely get discussed e.g. "Brain Fog" .

With the help of others I have collated a list of these , they can be found on the more symptoms page, however the British Meniere's Society published in their magazine "SPIN" (issue 32), a similar list so it seems they are slowly being recognized now.

There are other conditions that "mimic" MM (Morbus Meniere's = the commonly abbreviated name in USA) or MD (Meniere's Disease = English ) or Meniere's Syndrome, but Meniere's can be familial, so I don't rate my chances of not having it! Anyway, I have learnt a lot about the illness and this page aims to share the information to others.


This is my story..........

Symptoms as a child
As a child there were occasions I had suddenly and drastically become so dizzy that I dropped to the floor. Growing up it seemed like I was always at the doctors with ear infections and noises in the ear. I was repeatedly told that it was an ear infection, but medication, antibiotics never seemed to resolve the problem - the noises would disappear without explanation as fast as they would return.

Whilst on holiday in Amsterdam, in the hotel room not long before bed time, the whole world turned upside down as it had done when I was a child. After a few hours of rotating vertigo I was exhausted and slept and slept. For the rest of the holiday I was constantly overly tired and just wanted to sleep. When I got back home I was back to my normal self and blamed the whole event on feeling a bit stressed prior to the holiday.

1996 - It started with a headache
In the Summer of 1996 I woke up one morning with a Migraine. After a few days I was expecting it to have disappeared, but after 3 weeks I decided that I ought to visit my GP.

My GP actually diagnosed a "Cluster Headache" and I was sent on my merry way with painkillers. (He also suggested I get my eyes checked- which I did but these were not the problem). The pills did not help. I revisited the Doctor and was then told I had CDH- "chronic daily headache"

As the pain persisted my GP gave me Propranolol - a beta blocker and at my insistence I was referred to a Neurologist. The Propranolol also did not help.

Enter Dizziness
And then it happened, without me even really realising it.

The headache subsided, but was replaced by this unfamiliar sensation, a kind of dizziness that was indescribable. My ability to think was reduced to zero. I found it hard for my eyes to focus properly. I returned to the Optician but was told my eyes were fine.

This dizzy type sensation did not go away. At this point in time my father was diagnosed with Meniere's disease ; but at this stage I made no connection- I certainly did not want this illness that my father had, nor did I think I could have it.

When I saw the neurologist, she gave me the once over, and said that I had migraine and I was given some advice on foods to avoid. At the time I had many personal problems and the Neurologist immediately decided that my health problems were rooted from my personal problems and I was given Amitryptyline- an antidepressant. Although my gut said this was not true, I listened and took all the advice given.
However, changing my diet and relaxing did not seem to affect my symptoms.

Life is tough
The dizziness was so strong that it was all I could focus on, so I guess I never really paid much attention to when the tinnitus became constant. Months later, when symptoms persisted, I made a further appointment to see the Neurologist. By this time, my father and I had been comparing symptoms- I too had dizziness, tinnitus and fullness of the ear. At this point my hearing was totally fine, so although concerned I had Meniere's, I persuaded myself it was not possible.
But I found out a lot of information from the Internet and apart from all the recognised symptoms there were several other symptoms that fitted how I was feeling. Reading phrases such as "brain fog" and dislike of bright lights and many other things that Meniere's sufferers had recorded, were all too familiar, so when I saw the Neurologist I expressed my concerns.

She said she knew nothing about Meniere's and looked it up in her rather antiquated looking medical book. It gave a description that said Meniere's is NOT hereditary or familial, which is the opposite to the medical professions modern thoughts on this. I told her the name of the Doctor who my father had seen, and she referred me to him. My life at this point was extremely difficult. Work was hard to manage, I stopped socialising and withdrew from society. NOBODY seemed to understand. But there was still hope that the way I felt would disappear

Specialist Appointment to see an ENT
Finally my appointment with an ENT arrived. My father paid for me to see the specialist because my NHS appointment was a ridiculous 6 months away and I kept breaking down crying. Suicidal thoughts entered my head on a daily basis. Noises in my ears and sensitivity to sound (hyperacusis) were driving me to despair. But worst of all was this feeling that everyone did not believe me ; that it was all in my head. So when I saw the ENT, who stated "Meniere's is NOT in families" I was offered some relief but no solution (years later he changed his opinion on this). He did some short tests on me, which I passed with flying colours. I did not fall over when doing balance tests. The ENT stated I had Migraine, and my symptoms were related to that. At the time I felt relieved that I didn't have Meniere's. The ENT offered me an appointment with a Hearing Therapist to help calm me down, as with everything going on I was totally depressed.

The therapist was great! She helped to teach me relaxation techniques and was like a counselor who would listen to me complain about the symptoms. She really helped me to "cope". By this time the dizzy feeling was only there 80% of the time- giving me 20% of time to try and catch up with normal life. But the fullness of my ear persisted, in fact became more frequent. And the tinnitus (high pitched screech) did not stop. So , I made another appointment to see the ENT specialist. I could not afford to see him privately again, so waited for my appointment on the NHS.

I was lucky to get a cancellation appointment but when I saw the ENT he was quite different. He told me that everything was all in my head and that I wasn’t going to get better if I kept coming back to see him. My hearing had not changed and so he stated that I was still suffering from Migraine. I had never heard of anyone having had a migraine for 18 months every day before. And in fact I had not had many headaches at all!

As I left the hospital, I felt I had been made to feel like a hypochondriac, and a nuisance. And so I left no better.

So when I visited my GP many months later, I was shocked for my GP to read out the ENT's report on my visit. It stated that my illness was Psychosomatic but that I was much, much better - I couldn’t believe this - I had gone back to the Doctor because I was no better!!

And they all come tumbling down- April 1999
As time had gone on, my Uncle was diagnosed with Meniere's. My Aunt also complained of symptoms and had tests upcoming, but has pretty much been told she has the disease (like me, in the end she gave up with the medical profession). My Cousin also! So in addition to my grandfather that make 6 of us.

With stacks of info from the Internet, and more relatives with problems, I now feel I am now ready to pursue this again.

At the time of writing (April 1999) I am not better, although I manage things better. Now THANK GOD, the dizziness comes and goes in bouts, the tinnitus is constant, and the ear fullness comes and goes with intensity...even to this day I still gulp or try to clear my ear!!!!! I do not feel deaf, but when my ear is full I feel deafer and muffled. My partner and friends cannot tolerate the television at the level that seems normal to me . In social situations I cannot make out what is being said in noisy environments, I can't filter out speech from other sounds.

Here we go again-
Anyway I returned to my GP and insisted on another referral- he was very reluctant to do this! I explained about my family situation and it was very nice for the Doctor , who is not normally one to show sympathy, to say he definitely did not think that I was a hypochondriac, but that his hands were tied- but he wrote to the ENT specialist and I now have an appointment for 10.5.99.
Armed with much more information, and now that I can say that apart from the dizzies I have a great life- a partner I am extremely happy with, a job I love (and very flexible), so basically hardly any stress, 5 other relatives and plenty of info to say that Meniere's is familial! I am in a better position!

I have read others peoples stories of the battles that they have had, simply to get a diagnosis. And for me this is all I want. So that people don't think I am mad, or an attention seeker!

From 10.5.99 I began my diary.

This web site has been written and developed by Alex Tye - "MrLexy" on the internet!
http://www.mrlexy.co.uk. Please feel free to contact me with my feedback form.