I can well remember that it was always a bitter-sweet experience to talk to someone who was looking back on Ménière's. Partly you feel a sense of hope - (that there is life after Ménière's) and partly you just feel green with envy (why him, why not me - yet!) ...
I am sure you have been through all the things I experienced in the early days - bewilderment, disorientation, despair, desperation and a dispiriting lack of knowledge or help from health professionals. All I can offer you really is my own gradual accommodation and re-habilitation as a way forwards.
My first attack happened suddenly and unexpectedly one hot summer’s day in 1988, when I was away from home on a course. I was rushed to the local hospital and admitted for several days of tests. Looking back on it now, I recognise that the illness had been building for some time before, (maybe a couple of years), with rising tinnitus and bouts of fullness that I put down to head colds or blocked sinuses and tried to treat with decongestants.
The first attack was followed by many more, and general nausea and dizziness filled in the gaps. It took about six months for the consultant to put the name Ménière's to the illness, (and as icing on the cake, to inform me that I had it in both ears), and his only advice was “Take Serc and learn to live with it”. And that was it! I had no further appointments with him and I was expected to just go away and suffer in silence (or what passes for silence to someone with Ménière's!)
I was (still am) a teacher in secondary education. I was head of French at a comprehensive school and started to worry a lot about how the hell I was going to keep my job with failing hearing and the tendency t fall over a lot. In the event, by the time my hearing became truly problematic, I was fortunate enough to manage a career move and after 20 years of teaching French, (long enough for anyone!) I became the school’s head of IT (my hobby up to that point). You don’t need such precision of hearing for IT, you tend to be talking to one pupil at a time, sitting by a computer and you can choose which ear faces them, and for the most part, they are unlikely to be talking incomprehensible gibberish (which is quite common in French lessons!) As for falling over, I forewarned the kids and they were great at supporting me out of the classroom and calling for a cover teacher to take over.
My salvation during this period was the Internet, and the ability to communicate with other Menière’s sufferers. I joined a closed newsgroup run by the John Shea clinic in Memphis Tennessee. He and his father were pioneers in vestibular treatments, and he organised a support group on his clinic’s server. As a result, I was able to read and respond to some 100 posts a day from Ménière's sufferers worldwide and hear what they had to say. There was a huge amount of information (and misinformation) shared over that group, and you were able to question others about treatments and regimes they were following and it also gave you a place where you could just vent your anger and frustration when things got too much. There would always be someone who would be there for you and understand what you were going through. And sometimes, you would be able to do the same for someone else. It helped a lot.
Some of them were pretty extreme. They don’t have Serc in America (or at least, didn’t then - it was banned by the Federal Drugs Agency) and I was considered very lucky to be getting it for free. Some of them were smuggling it over the border from Canada and Mexico. Treatments in America seemed to revolve around tranquillisers, diuretics and strict salt-free diets and many of them were utterly obsessive about salt. To my mind, they cut it down so much that they developed a false imbalance. They would often talk about cravings for a slice of pizza, but said that just a mouthful would be enough to trigger an attack. I personally think that if they allowed their bodies to experience salt a bit more, they wouldn’t have had such an adverse reaction.
I can’t claim any superiority here. In fact I became obsessive too. As I am sure any Ménière's sufferer is bound to. I spent my life desperately trying to discover what the trigger was for my attacks. Every time it happened I would give up something else and see if that was the answer to a normal life. It never was. In the end, I tended to go for anything I fancied in moderation and found that I never really had a reaction to salt or cheese or chocolate or any of the other things that were claimed taboos. The attacks were random and beyond my direct control. Perhaps one of the best lessons I learnt from this was not to beat myself up all the time. The attacks weren’t my fault, and getting anxious about them and skewing my whole life into avoidance for fear of attacks was negative and harmful to whatever quality of life I had.
Some things definitely did help me however. I attended Alexander Technique classes with an excellent teacher, and I am sure that they did allow me a feeling of some control. The technique works by helping you to establish a physical and mental balance and self control that is particularly useful to someone with a vestibular complaint. It can help you to develop a very strong physical sense of where your body is in space which helps you to overcome the random messages that your balance centres are feeding to your brain. No cure, but an improvement. Mixed with this, over time, a better awareness of how to move and to be, without aggravating the condition, and how to calm the unpleasant tensions and feelings that grow over the day and leave you feeling susceptible.
I also tried a great number of things that were less successful (for me) - acupuncture, gingko biloba, self hypnosis, stemetil, diet, diuretics, food allergy therapy etc. etc. I stress that they didn’t work for me, because I am sure the same things could work for other people. One thing I did learn from the thousands of messages on the Ménière's newsgroup was that everyone’s Ménière's is just a little different to everyone else’s. I also learnt that your own state of mind about your illness is crucial. Stress makes it worse. The feeling of helplessness makes you more stressed. Negative spirals are so easy to get into and so hard to get out of.
I ended up “going private” in order to see a consultant who would talk to me, now that I “knew so much” about the illness. My hearing was poor in my left ear by then and my right ear had started going ballistic. I was willing to try anything to stop the loss of hearing in that ear and virtually talked him into a “saccus decompression”. To this day, I don’t know whether it was the right decision or not. It turned out (I discovered later) that as an ENT specialist, he was more T than E. I was his third saccus ever (and I think he did the other two worse). Basically, he did manage to calm the ear down, but in the process he killed it stone dead (deaf) as well. The hearing in my other ear was very poor at that time and I became functionally deaf (and clinically depressed) at a stroke.
In the end however, the saccus was the turning point. I had a few months off work and on Prozac while I came to terms with my changed circumstances. I took lip-reading classes, acquired a hearing aid and pondered my future. The fact was that after some initial wobbles while my ear calmed down after the operation, my Ménière's has never looked back and since the operation my condition has steadily improved.
After several deep breaths, I took my reduced hearing back into the classroom and found that with the support of the pupils, (they were brilliant - bless them!) I can still teach the pants off most of my colleagues (modest too!). I developed a raft of coping strategies to live as normal a life as possible and I made no concessions to my illness. It seemed to work. I haven’t had an attack since 1995, and although I am still careful how I do things (don’t throw your head around, try to keep it horizontal, don’t go on big dippers, try to avoid over-tiredness and stress etc.) for the most part my life is normal. Indeed, after a few months, I found that my ears were calming down - the tinnitus was less pronounced and the hearing in my remaining ear improved (presumably as my brain started compensating for the loss of the other ear). Nowadays I rarely bother with the hearing aid. I am totally used to sound only coming from one direction and I don’t count myself as limited at all. (It drives my wife mad that she has to turn down Coronation Street to talk to me, but that’s probably a good thing!) In sum, I feel pretty normal - no nausea, no dizziness, no fear of an impending attack and a deep sense of being very lucky to have “made it back”.
There really can be life after Ménière's, there’s no doubt about that, but that’s just something to look forward to, like the next holiday. To my mind, the most important thing is to make sure that there is life during Ménière's. Develop your coping strategies, do the things that make you feel better, take control as much as you can. Make the most of every moment when you aren’t incapacitated and just try to be as stoical as you can when things aren’t going well. It won’t go on forever. There is light.
I don’t know whether I have helped or just depressed the hell out of you my friend. I hope I may have helped in some way. I wish you the best of good fortune for your future and hope that you will find relief and peace of mind very soon.
With all best wishes.
Ménière’s Disease
An open letter to Ménière’s sufferers from someone who understands.
Dear friend,
It’s nice to meet you. Even if it is only in cyberspace. Thanks for inviting me to talk about my illness; you could be here all night! What an opportunity -
