Meniere's Disease - Vertigo - Tinnitus - Dizziness - Endolymphatic Hydrops - Inner Ear Pressure - Labyrinthitis
My name is Mike, and I have lived with menieres since 1996, seen specialists all over the world and had surgery, but nothing helped. Then in 2002 I tried a set of dietary supplements out of desperation - I was very sceptical for various reasons and just didn't trust it at all- but within a few months the vertigo was gone, no more dizziness, no more drop attacks, the tinnitus was variable but no longer a problem and my hearing was better. On top of this I felt as fit as a fiddle. I still am, better than ever in fact.
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, while I was in New Zealand. It had felt full - blocked up. I had also felt very slightly dizzy, which I had 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 menieres disease. I knew vaguely (very vaguely it turned out)what menieres was but I associated it with old people for some reason. Whatever - I couldn’t possibly believe it.
I was immediately taken to the ENT at a hospital in Auckland, where I had various blood tests, audiology tests, a CAT scan and eventually an MRI. The specialist there was also of the opinion it must be menieres. He gave me some pills for the dizziness and a 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 doctor 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), a diuretic and Stemitil, medicine to stop the dizziness.
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, it 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 and 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 advice.....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 lamp-posts. 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 collapsed onto 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 and the other symptoms that were making my life hell.
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 'menieres specialist' gave me SERC again, stemitil again and told me it was perfectly okay 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 for some unknown reason 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 'menieres 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, menieres free for the first time in a year and a half. I went off travelling 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 then ‘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. Any slightly high pitched noise would pierce right through my head and drive me crazy.
Day in day out it was vertigo, dizziness (there is a big difference), vomiting, light sensitivity, sound sensitivity, nausea, forgetfulness, brain fog, confusion, fevers, exhaustion, depression and the feeling of guilt. Guilt that I couldn't help my wife with our two year old girl and baby boy. Guilt, when I would go to sleep so tired of it all I would beg God to not let me wake up,and I meant it. Then I would see my beautiful little girl wanting to play with daddy. It wasn’t a life; it was just miserable day to day survival.
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 menieres. 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 that gave me headaches so I stopped. If a menieres patient has a vertigo attack here, 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 a 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 Isobide. 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 chlorella supplements, high in minerals and vitamin B2. This also helped greatly for a while but it was yet another false dawn in the end. I was on the right track though. I just didn't know it at the time.
I started getting very desperate and began searching the internet for information and help, just like you are doing. 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 menieres sufferers who could give the best information. 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 menieres feels like and a non-sufferer has absolutely no idea.
In stressful times my wife has called me lazy and said that menieres 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 we 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. I just didn't trust it.
I also found doctors in San Diego who did various surgical operations for menieres. 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 disease burn itself out or I could have an endolymphatic shunt implant. 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 operation and they wouldn't even give me a bed for the night! I went into surgery late due to an emergency - around four o'clock in the afternoon.
Around seven they were waking me up out of the anesthesia 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. When I told the surgeon that it was back, he told me, “Don’t bend down”. I got depressed and then something even more frightening. It began to go bilateral. I started to feel blocked in the right ear too. It was shattering.
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'. But 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 nutritionals.
When I visited their site though, it all seemed too 'salesy' and stank of networking. The very word networking made me cringe, but 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 company that sells direct to the customer. That's how many of these companies sell their products these days, but it's no different from companies like DELL computers or Avon, and that doesn't concern you. You are only a customer, just buying their products."
I had been looking at their page for business opportunities rather than their products page and had misunderstood.
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 didn’t really know much about menieres. So I decided to get them through Karin in Canada. Her husband has menieres so she knew more about the disease. She was unbelievably kind and helpful with it all.
Suddenly I felt like a new man again, but mindful of the false dawns that had gone 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 menieres 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 or exhaustion. This time it was the real thing. Nutritional supplements’ biggest doubter, biggest sceptic 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 have an open mind and give it a go.
Ever since then, I have been symptom free. I have bundles of energy and my mind feels sharper than ever before. No more diuretics or other medicines. Don't get me wrong; I know it is there ready to pounce should I let it. I still lay off alcohol and salty food, keep fit and NEVER EVER 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 few years when I forgot that I had ever had menieres. That would have been very hard to believe before I started taking these supplements.
I have learnt that only one thing for sure with menieres, and this is that nothing is for sure with menieres. It is so unpredictable and everyone has different triggers and what works for one might not work for another. Being careful with alcohol, caffeine and salt, not eating too much sweet food and keeping fit. Getting plenty of sleep and trying to reduce stress. Being weary of barometric changes in the atmosphere, pollen in spring and humidity, dampness and mold. I had to take all of these things into account before. Sometimes I forget about these things these days but I never forget my supplements because I know that in the end they are what freed me from menieres.
I was so amazed by what happened that I studied to become a nutritionist. I hope if you have menieres and you are reading this, don't make the same mistake I did and hesitate to try the concept of supplementation. I am convinced it will help you overcome this horrible condition. It may take time but you will feel so good in the end you won't be able to believe it. My only word of caution is be very careful what you buy; there is a lot of junk on the shelves of stores. If you want to know the exact supplements I and everyone involved with us use, jesy email and ask: firstname.lastname@example.org
Even though I had been clear of menieres symptoms for two years I was still a little obsessed with the condition that nearly ruined my whole family’s life and found myself a) researching endlessly, and b) wanting to really help other menieres sufferers.
I would see people on the train coming home from work, with their heads in their hands looking none too healthy. It could have been anything and most probably they were just exhausted from work, but I would be wondering, “Are they having a menieres attack?” I really wanted to help people but didn’t really know how I could. This is when Karin came to the rescue. She gave me the opportunity to help her and her team support Meniere's sufferers, through her great web site menieres-disease.ca
This story was originally written in 2004 for Karin's Henderson's help website.
In the years since, thanks to Karin and all the people I have dealt with who have asked for help, and given us their own insights, I have learned a great deal more about this condition. It is with all this experience and knowledge, the help of a network of other volunteers who have lived with Meniere's in some way and the knowledge we have gained from respected doctors and nutritionists (whom we have access to) that we are here to help and support you.
We receive mails all the time from people who had come across our information websites, and have now found their particular triggers, taken control of their condition and become healthy again through taking the supplements. And when I read these mails, and I know how they feel to have their life back, it makes me feel that maybe, just maybe those seven years of hell were worth it.
Read more about the supplements I used here
Read Mike's updated story 2013 (times have changed)
Read other people's messages of success and stories
Read more recent success stories on the Menieres Disease Help blog
Learn how to find your triggers & underlying causes
Contact us: email@example.com
Write to Meniere's Help, 37 The Crapen, Dursley, Glos, GL11 6LL
Beating Meniere's Disease. Success Stories
Contact us for help: firstname.lastname@example.org
This is Mike's original story written in 2004.
Read the updated version
Updated September 2013
on the blog.