Michael's Meniere's Disease Story begins Back in 1996
 

Dear Karin,

Here is my long overdue Meniere's Disease story, please feel free to use it.

Had some trouble with my ear this year as the pollen count is 30 times higher than normal--blocked me up and put pressure on my ear. Sorted it out though and I am back to my fighting fit self.

As always.....THANK YOU!!!!!!

Mike.


My story began back in February 1996. I went along to the doctor for what I thought would be a routine syringing of my left ear. It had felt full - blocked up. I had also felt very slightly dizzy, which I put down to the blocked ear and wearing my walkman too much.

The doctor took one look, told me there was nothing in the ear then announced that I must have Meniere's Disease. I knew vaguely (very vaguely it turned out) what Meniere's Disease was but I associated it with old people for some reason. Whatever - I basically didn't believe it.

I was immediately taken to the ENT at a hospital in Auckland, where I had various blood tests, audiolgy tests, a CAT scan and eventually an MRI. The specialist there was also of the opinion it was Meniere's Disease. He gave me some pills for the dizziness and some kind of glycerin drink. The drink did the trick and within a week or so I was back to normal and forgot all about it.

Around eight months later back in my hometown in England I was hit for six by a massive vertigo attack. I collapsed on the way back from the toilet, with my head spinning out of control. I was running a mighty fever, vomiting and could not physically open my eyes. This lasted for several hours. The local GP was called out and mentioned 'labyrinthitis'. It was a horrifying experience that I would experience again and again over the years but would never get used to.

There followed several months of dizziness and fatigue. I saw doctors at the local ENT who put me on SERC (Betahistine) and Stemitil.

My next big vertigo attack came in Hawaii in the new year 1997. In fact I had several vertigo attacks during my three months in Hawaii. I was in Paradise but inside my head was hell. I was taken to a local clinic in a wheel chair. There they refused to see me, saying my insurance wasn't accepted there. Eventually I made it to the general hospital where the ER doctor checked me over gave me more of the same type of medicine. The next day I saw the ear specialist there. He agreed it was Meniere's Disease and gave me Hydrochlorothiazide and some advise.....the first I had received by the way.  He told me to stay away from salt and salty food, stay away from beer and to eat plenty of bananas and potatoes to compensate for the loss of potassium ( due to the diuretics).

Three months later I found myself in London, staggering along the street bumping into people and hitting lampposts. I was having multiple attacks everyday and was desperate. I practically crawled into the ENT at St Mary's hospital in Paddington. I begged to see someone but they told me I didn't have an appointment so I would have to go to the ER. I made my own way to the emergency dept where I led on a bench for what seemed like hours before anyone even noticed me. In the end I was seen by a student doctor who just gave me stemitil again, despite the fact I told her it just didn't work with me. I was packed off home later and told I would be getting an appointment
with ENT in due course. Due course on the national health of course can mean a very long time. One day with this horrible condition is a very long time, isn't it? Several weeks and many more vertigo attacks later I found myself in the ENT begging for them to give me an operation. They would not even consider it. They seemed far more interested in my hearing levels than my vertigo.

When the hearing first started to decrease and the tinnitus set in I thought it was the end of the world. But I got used to it and it was the least of my worries. It was the terrifying vertigo attacks and the related symptoms like nausea, dizziness and exhaustion I couldn't take.

The  so called 'Meniere's Disease specialist' gave me SERC again, stemitil again and told me it was perfectly alright to drink beer (it is amazing how many doctors don't see alcohol as a problem with this condition) as long as it was Czech pilsner beer! She was from the Czech Republic!!

Over the next six months or so I got fitted with a hearing aid (which I never used) and amazingly  virtually all the symptoms disappeared. All I was left with was a very slight tinnitus. Much to my audiologist's amazement my hearing also almost completely recovered, which didn't make sense to him. He had told me that each time I had a vertigo attack the hearing nerves in my ear were being destroyed and would never return. The 'Meniere's Disease specialist' was overjoyed and declared the drugs she had been giving me a success. The only problem was, I hadn't been taking the drugs. Right from the beginning I knew they were not helping so I didn't take them. I didn't care why I felt better at the time, I just knew I felt great. Looking back, it doesn't make sense. I was doing all the things I shouldn't do. I wasn't watching my salt intake, I was drinking alcohol regularly, I wasn't getting great sleep, I was getting my share of stress, but still it disappeared. The one thing I remember was different was I had become very fit, training in the gym twice a day. I am convinced that had something to do with it.

I  had never been happier, Meniere's Disease free for the first time in a year and a
half. I went off traveling to south east Asia for six weeks, drank alcohol, partied, deprived myself of sleep, ate salty food......no problem at all...nothing!

I moved to Japan in May 1998. About a month after arriving, I was late for work one day and rushing to get the train and POP....the tinnitus started again, only tinnitus though for the next six months, just varying levels of tinnitus. Then at Christmas, while having a beer with friends 'wallop' the vertigo returned. The whole thing returned with an absolute vengeance. The next four years were hell. I missed so much of my two babies growing day to day, while I lay in bed vomiting and spinning into depression.

I am an English teacher and I started collapsing in class. It became a vicious circle. I  became stressed each time I did a lesson worrying if I was going to have an attack in front of my students, then of course that stress would increase the pressure in my ear and set off the vertigo. The pressure was so intense at times, that you only needed to touch the left side of my face to trigger an attack.

Day in day out it was vertigo, dizziness (there is a big difference), light sensitivity, sound sensitivity, nausea, forgetfulness, brain fog, fevers, exhaustion, depression and the feeling of guilt. Guilt that I couldn't help my wife with a toddler and a baby. Guilt, when I would go to sleep so tired of it all I would beg God to not let me wake up and then I would see my beautiful little girl wanting to play with daddy.  Of course I did wake up, sometimes I woke up in the middle of the night spinning and wanting to vomit. But I am so glad I did wake up in the end...but we'll get to that later.

In Japan they have a whole different way of dealing with Meniere's Disease. Instead
of just diuretics and  antihistamine for the dizziness, they also give you medicine to help the blood flow. Just like in the west they gave me tranquilizers but they gave me headaches so I stopped. If a Meniere's Disease patient has a vertigo attack they can go to their local ENT doctor who will rush them to the front of the line, lie them down and put them on a drip. The drip has some kind of bicarbonate solution in it. They seem to have more understanding of how we actually feel here. I started taking two sets of
medicine for the blood flow and a diuretic glycerin drink called isorbide. I didn't feel it worked that much but I stayed on it anyway. I completely stopped drinking beer and became very careful about salt intake. Funny I think I can really taste fresh vegetables now, much more than before. I didn't miss the beer at all. I started living like a saint...to a degree!  But still this curse wouldn't leave me alone.

I tried acupuncture and suddenly I felt great again. I had energy and could think straight but it was a false dawn again. As soon as the heavy weather came in the Typhoon season I felt worse than ever.  I found the hay fever in spring affected me, the humidity in summer affected me and the heavy weather in Autumn affected me, all adversely. Winter was my only respite, in that I had fewer vertigo attacks. I started taking a supplement called chlorella, high in minerals and vitamin B2. This also helped greatly for a while but another false dawn in the end. I was on the right track though. I just didn't know it at the time. I know one girl who swears by chlorella. It worked wonders for her.

I started getting very desperate and began searching the internet for information and help. The problem with that was the computer screen seemed to set off the vertigo!

There seemed to be a lot of information and I soon found that rather than the medical sites and doctors, it was the other Meniere's Disease sufferers who could give the best advise. After all they were the only ones who knew exactly what was going on inside my head.

It has been said by many but it is so true - it is impossible to explain properly what having Meniere's Disease feels like and a non sufferer has absolutely no idea.  In stressful times my wife has called me lazy and said that Meniere's Disease was just an excuse. This disease affects the whole family doesn't it? Although it hurts and I resent it, I can't blame my wife. As they say I look so normal most of the time.

Searching the web, I came upon a site claiming remarkable success with nutritional supplements. At closer inspection though it felt too much like a sales pitch, too good to be true with money back guaranties, things like that. I just didn't trust it.

I also found doctors in San Diego who did various surgical operations for Meniere's Disease. My vertigo had progressed from spinning to flickering then now I was having drop attacks where without any warning it would suddenly feel like I was on a jet coaster and I would be flung to the ground. I felt this was a dangerous development and so flew to San Diego, determined to have an operation.

I arrived in San Diego convinced I wanted a vestibular nerve section. In this operation they sever the balance nerve altogether. The main problem with this is that the hearing will most likely be lost forever in the affected ear. Although my hearing fluctuated greatly and sometimes I could hear reasonably well, I was in such a state over the vertigo that I was willing to make the sacrifice.

I saw a group of doctors who pretty much put me off the idea of the nerve section with unpleasant stories of the side effects concerned. This left me in their eyes with two options. I could let the Meniere's Disease burn itself out or I could have a endolymphatic shunt operation. I asked how long it would take to burn itself out and was told, 'maybe ten or fifteen years more'. That would be ten or fifteen more years of vertigo....NOT an option in my eyes! The shunt procedure only had a 60% success rate but I decided I wanted to try. I paid the best part of $10,000 for the op and they wouldn't even give me a bed! I went into surgery late due to an emergency - around  four o'clock.

Around seven they were waking me up out and telling me I had to leave. I had to be helped to a taxi and still very drowsy I went back to my hotel. They didn't even give me pain killers. I had to wobble down to the local pharmacy in the supermarket with a huge patch on the side of my head.

I flew back to Japan a few days later with blood and spinal fluid dripping from my nose. After the effects of the operation wore off I felt like a new man. No more dizziness, a clear head and loads of energy. I thought I was one of the lucky 60%. Then one day a couple of weeks later, I bent down to do my shoe laces up and was hit by a sudden vertigo attack! It was back. The symptoms in between vertigo attacks were not as bad as before and the vertigo, although very violent, seemed to last for shorter periods. The psychological effect was devastating though. I had believed I was cured and now it was back.

In desperation I decided to try the nutritional supplements I had read about on the internet. There couldn't have been a more sceptical person than  me about this 'system'. I learned from a lovely lady in Canada called Karin all about the supplements and the logic behind the system being used. A doctor had had great success using this particular brand of nutritional supplements. When I visited their site though, it all seemed too 'salesy' and stank of networking. The very word networking made me cringe. I went ahead and tried anyway. What could I lose, I had tried everything else and at great cost had an unsuccessful operation.

I initially got my supply of supplements through an American nutritionist here in Japan. He laughed when I voiced my doubts about the sales thing and networking. He said, "you are dead right, it is a networking thing. That's how many of these companies sell their products these days".

After a couple of days of taking these supplements I could already feel much higher energy levels but was still having vertigo attacks now and again. The nutritionist was a good guy but he knew nothing about Meniere's Disease. So I decided to get them through Karin in Canada. Her husband has Meniere's Disease so she knew more about the disease. She was unbelievably kind and helpful with it all. Suddenly I felt like a new man but mindful of the false dawns that went before I didn't get too carried away. I went weeks with no problems then I would have a setback, I would suddenly feel tired like only Meniere's Disease sufferers can, I would have a short sudden vertigo attack or the pressure would suddenly increase in my ear. But I knew I was getting better and better. I had started the system around July of 2002 and by Christmas it was gone for good. No more vertigo, no more dizziness, brain fog and exhaustion. This time it was the real thing. Nutritional supplements biggest doubter, biggest skeptic had discovered that I could have saved myself a lot of money on that operation and got myself better a year and a half earlier if I had only been willing to give it a go.

For almost two and a half years now I have been symptom free. I have bundles of energy and my mind feels sharper than ever before. Don't get me wrong I know it is there ready to pounce should I let it. I still take my medicine, lay off alcohol and salty food and NEVER NEVER forget to take my supplements. Occasionally when I am really tired, stressed or the weather is in the mood I can feel a slight increase in pressure and tinnitus will increase a little. But that's it only that.

There have been times over the last two and a half years that I forgot that I had ever had Meniere's Disease. That would have been very hard to believe before I started taking the  supplements.

I have learnt that only one thing is for sure with Meniere's Disease, and this is that nothing is for sure with Meniere's Disease. It is so unpredictable and everyone has different triggers and what works for one might not work for another.  But basically stay off alcohol, keep away from caffeine and salt. Don't eat too much sweet food  and keep fit. Get plenty of sleep and try to reduce stress. Be weary of barometric changes in the atmosphere, pollen in spring and humidity and dampness and mould. I have to take all of these things into account. Sometimes I forget about these things these days but I never forget my supplements because I know that in the end they are what has freed my from Meniere's Disease and by all accounts many many others too.

I tell Karin she is a saint for introducing me to these supplements.  I was so impressed by what happened that I have started  a course to become a nutritionist. I hope if you have Meniere's Disease and you are reading this, don't hesitate to start this system. I am convinced it will help you overcome this horrible condition. It takes time but you will feel so good in the end you wont be able to believe it.

Mike Spencer

March 2005