Menieres and Me

by joolsdunn

Welcome to the first post on my Menieres blog. Please feel free to direct family and friends here for enlightenment. This will be a fairly long one as I want to give my history and how I got it under control.
Let’s get the boring bit out of the way first! I am not a doctor, I have this disorder and all the information below comes from my own experience and research. Not all cases present or act the same so what has worked for me may not work for you.
First of all a bit about me. I’m British but live near Atlanta, GA, 50 yrs old (but act about 25!) and a cat and shoe freak! I love fast cars and cruising along in the sun on the back of my hubby’s Harley.
So, what is Menieres Disease (I prefer to call it a disorder, it sounds better than disease!!)? It is a debilitating, fairly rare inner ear condition that can present in a typical or atypical manner.
Typical Menieres has these four symptoms present:-
• ‘Fullness’ in one or more ears, ie the ear feels like it is blocked or has pressure.
• 24×7 tinnitus of varying frequency and pitch
• Gradual or immediate deafness in the affected ear(s)
• And the worst one of all, extreme bouts of vertigo lasting from as little as minutes to hours and hours.

Atypical Menieres may not have all the symptoms listed above, or may bring other things with it such as drop attacks or vertigo brought on by noise or bright lights. I am a textbook typical case but that said I consider that I have a ‘milder’ for want of a better word version than others. My ENT in the UK who is the UK leading authority on Menieres said you can see milder cases than others.

My first encounter with it was in 1999 when I had all the symptoms except for the vertigo. My right ear never felt right, the hearing was down and it was affected by the weather, I felt pressure in it a lot, had pain, tinnitus. I also felt off balance and ‘dizzy’ for want of a better word, although not a spinny dizzy or the kind when you are going to faint. My doctor was no help but my job entailed a lot of flying at that time and he grounded me thinking it was a middle ear issue! Not good, I loved my trips overseas.

Eventually I Googled my symptoms and found Menieres as part of that search. I remember thinking at the time thank god I don’t have that. Little did I know…..

Fast forward to Summer 2001 when I had my first vertigo attack. At the time I didn’t know that’s what it was, nor did I associate it with my other symptoms. I thought I had an ear infection. I wasn’t sick but I felt so rough. The vertigo eased after 4 hours and I was able to go back to bed but still felt ‘off’ the next day. Nothing happened for another 6 months or so when I got another attack. This time I had just drunk a large glass of wine and 2 vodkas so thought I was drunk (I’m a lightweight when it comes to drink!). By noon the next day I felt fine so thought yep, hangover etc. Gradually the vertigo attacks became more frequent though and by now I was thinking **** (insert favorite curse/swear words here!) this is Menieres. I was sent to see an ENT GP who was so cocky and horrible. He looked at me down his nose and said of course it’s Menieres, it’s obvious. How rude! He then sent me to see one of the most emminent Menieres specialists in the UK, a guy called Mr Chris Aldren. Before I went to see Mr Aldren, I documented a ‘War and Peace’ like epic with regard to my symptoms and attacks. He immediately said it looks like Menieres and we’ll send you for the tests (I will document those in a separate piece!). After the tests I went back to see him and he confirmed that I had what looked like Menieres, but he would not officially diagnose. He told me the reason for that is that there are other similar disorders that mimic Menieres and the only way to confirm 100% was to send him my head during a vertigo attack! Appealing as this sounds, it’s obviously not feasible! In addition, in the UK, if an official diagnosis is given, you are supposed to surrender your drivers license. Interestingly Mr Aldren’s view was that diet doesn’t necessarily affect Menieres and that is true for me. I have no food triggers so still eat and drink what I like.

Anyway, onward to 2004 when I was involved in a car accident. After this my symptoms seemed to increase in frequency and severity. I started to get vertigo attacks once a week and they lasted anywhere from 45 mins to 4 hours. When I get vertigo I can only sit and face a blank wall. If I lay down I know I will throw up. So far I have managed not to throw up during the vertigo but it’s been close. I usually also get diarrhoea too and have to crawl to the bathroom to take care of that which is no mean feat either! During an attack I tend to flick my eyes about too (not nystagmus) which I think also helps my brain cope with the spinning. My vertigo presents like the room is whooshing by and pictures seem to move around on walls. I also get pins and needles in my arms and legs and anxiety too so I try to do t’ai chi like arm movements and breathing exercises. Let me tell you, my cats think I have gone totally crazy when I do this! They give me very strange looks. My vertigo stops as quickly as it starts though. One minute the room is spinning, the next it’s like the lull after a storm and I can get up and move around. I usually then sleep as you tend to get exhausted because the brain is working to make sense of the world. For a few hours after an attack my tinnitus roars! But the day after I can usually hear better and my tinnitus is a lot quieter. The pressure goes too. One weird thing that happens to me is if I get vertigo come on in the car, I don’t notice until the car stops! The motion of the car relieves it.

Back in 2004 I was taking Serc but realized it wasn’t doing much so I decided to stop it and do some investigation myself into how to minimize this horrible thing. This took me over 5 years to finally find something that I believed worked to a point(or maybe I reached burn out, my hearing is totally shot in my right ear). I tried chiropractic (that made me even more dizzy), I tried some natural remedies that didn’t work. Eventually I tried cranial osteopathy. This is similar to chiro in some ways but also involves gentle manipulation around the face and head. This gradually brought down the vertigo attacks to one every 6 months, then a year, then two years. Today, May 2013, I have been vertigo free since May 2009. In addition to seeking help, I have also always tried to maintain a positive outlook and get on with my life. It’s hard and I know not possible for some of us. But although my balance is not the best (I regularly step back off step ladders!) I managed to pass my motorcycle test. I won’t get one as turning right is very wobbly for me. I also persevere with my beloved heels. I do yoga to maintain what balance I have and I still ride horses. I also travel extensively. I have suffered an attack at Boston airport which luckily was only a 2hr vertigo episode so by the time I got on the plane, I just had tinnitus louder than the engines! That was not a pleasant experience.

Now I am under no illusion that this will not come back and bite me at some point as I know people who have been vertigo free for 10 years or more, then it suddenly flares again. I still get the fullness, still have horrible tinnitus and am deaf in my right ear and there are still days when I get that ‘oh crap I’m going to get vertigo’ feeling. As y’all know, once you’ve been unfortunate enough to experience this, it doesn’t leave you that easily. But as long as I remain vertigo free I will continue to live my life to the maximum. Gosh I talk a lot don’t I? Well I hope this is useful as a first post. Next time I will talk about the cranial osteopathy in more detail and why I think it helped me in particular. Thank you for reading x