Meniere’s Syndrome and Meniere’s Disease

Meniere’s is an inner-ear illness named by a Frenchman, Prosper Meniere in 1861. Its main symptoms are dizziness, tinnitus, headache and deafness.

The difference between the disease and the syndrome is that the syndrome can be related to a particular factor, e.g stress, that causes the discomfort and can often, therefore, be cured. The disease is when the cause is unclear and there is no cure. It steadily gets worse. Both the syndrome and the disease can be extremely unpleasant and can vary hugely from one day to the next. Both can last for many years, even a lifetime. Both can be utterly debilitating.

My husband has Meniere’s disease. It started to manifest itself some twenty years ago when he developed a buzzing sensation in his head. He also had a sensation of an extra body of some kind under his skull and I recall him telling me that he felt as if there was a heavy wet sponge there; then suddenly the heavy wet sponge would go very dry and brittle, then wet again. He wondered off and on if he had an ear infection because one ear seemed to be sometimes painful and sometimes – again – that sensation of there being something in it.

The weeks drifted by and the discomfort got no better. We noticed that he seemed to have difficulty hearing, particularly on one side. Not only had his hearing deteriorated but he couldn’t tell where the sound was coming from. At one stage a bird in the garden up in a tree seemed to him to be louder than my voice right next to him. That kind of thing.

When the dizziness started we went to the doctor who diagnosed Meniere’s. Since then my husband has tried all sorts of medications, both chemical and “natural”, acupuncture, reflexology, massage … the lot. Nothing so far has solved the problem. There are times, which may last weeks on end, where the only discomfort he has (and he has these permanently, day and night) are tinnitus in varying degrees of volume, deafness and an inability to make any sudden movements because it will trigger dizziness (looking left and right when driving for example – he always thinks-out this movement). He is also permanently unable to tell where a sound is coming from. Then there are times, often weeks on end, when he feels so sick and dizzy that all he can do is lie down. Sometimes he lies on the floor because he says he cannot fall off the floor. Sometimes he is sick. Sometimes his headache is so bad that nothing seems to alleviate it.

And yet he is one of the lucky ones! Many have vastly greater discomfort. We have noted a few things that help/make it worse:-

– Total peace and quiet lying in the sun is very helpful
– Noisy places make it worse
– High-pitched noises (a chair scraping on the floor for example) can be out-and-out painful
– He needs people to talk gently WITH him rather than AT him
– Oddly enough white sugar seems to make it worse
– He can drink only decaffeinated tea and coffee, and those only in small quantities
– Cheese will trigger an attack, though goat’s cheese in small quantities seems to be OK
– Even a stressy item on the TV seems to be unhelpful
– Having a cold is devastating for him. We all know that most men make the most inordinate fuss when they have a cold (bless), but a cold mixed with Meniere’s is very bad news in this house
– Flashing TV or cinema images, anything in that line (the lighting in the aquarium triggered an attack), moving lights
– Massage seems to help
– Some forms of Yoga help
– migraine – we found that he sometimes has a migraine (as opposed to a headache) with the attack, and this part can be easily resolved with Zomig
– Xanax is helpful at night or when the attack means you must lie down
– travel sickness tablets sometimes help
– oxygen is sometimes extremely helpful though the doctor says this is illogical

These are all things that Meniere sufferers are long familiar with. There is no cure. The worst causes of the illness, whether the syndrome or the disease, seems to be stress and loud noises.

Your best help and advice will come from other Meniere sufferers, not from your doctor. The illness has been identified, which is not the same as being understood. There are lots of web sites where you can exchange information with others …. and it will make you realize that you are in fact very lucky that yours is not so bad that it prevents you from reading this blog ! Here are a few words from him:-
“On the days that you feel all right, it is essential that you do your best to carry on with your normal life, even if the tinnitus is bad. I find that if I immerse myself in what I am doing (providing it is not something that will trigger an attack!) I can almost forget the tinnitus and headache. I keep myself very busy so that I do not dwell on it and, oddly, I stopped reading so much about it because I found it quite discouraging to know how bad it could get! Always avoid loud noise and rushed movements. I do not talk about the disease with other people because I do not want constant sympathy and I do not want to focus on it. However if there is somebody talking very loudly at me (almost always a woman!) I do tell them. The best possible thing for me is peace and quiet, sunshine, and feeling generally at ease with the world.”

Meniere’s Syndrome and Meniere’s Disease

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