My Meniere’s Experiences
This will be a regular section where I document me own experiences with Meniere’s and make notes at the end where I hope you can learn something that will help you in your own fight against this condition……so stay tuned.
My story with Meniere’s Disease 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 (shows how old I am!) too much.The doctor took one look, told me there was nothing in the ear then announced that I must have menieres disease.
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. Iwas 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.
**1. Meniere’s is not technically a disease. It is an idiopathic condition, meaning they don’t know what causes it. It’s a set of symptoms all lumped together under the “Meniere’s” banner. So when the doctors say Meniere’s they are in a way saying there is nothing more sinister found in the tests run like the MRI etc. and they don’t know what is causing your symptoms
**2. SERC is a trade mark. You may be given (or have been given) similar ‘diuretics’. If you read up on diuretics, it is advised that you not be on them long term as they can actually cause the symptoms that they are designed to actually prevent. The idea is to take the excess fuid out of your body. Fluid is building up in your endolymphatic sac causing the sac to balloon and put pressure on the hearing and balance nerves…causing the hearing loss, sense of fullness, nausea and dizziness, and ultimately the vertigo. Note that diuretics can also cause a depletions in potassium in your body. That in itself can cause symptoms similar to Meniere’s ie: dizziness.
Stemetil, is a drug to suppress the dizziness.Stemetil belongs to a group of medicines called phenothiazines. It helps to correct chemical imbalances. With meniere’s patients it’s function is to stop the nausea and dizziness.. Meclizine can also stop the nausea and dizziness. It is sold over the counter under the brand names of Bonine, Bonamine, Antivert, Postafen, and Dramamine. In emergencies….buy some travel sicknesspills (containing Meclizine) over the counter. These will most likely make you sleepy though, so be careful about driving.
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Here is the 2nd part of the story……I really urge you to read this one and learn from my mistakes.
Mike
meniereshelp@gmail.com
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 (No NHS 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 ENT specialist there. He agreed it was menieres 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 – see last post).
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!!
1. Alcohol can be a massive trigger FACT.
2. In Hawaii I was drinking plenty of beer and eating salty food. In London, when I was at my worst. I was working 10~12 hr days and studying at night. I was so busy didn’t have time to cook and was living on a diet of baked beans in the morning, lunch MacDonalds, dinner MacDonalds…In hindsight, over-tired, and eating Chicken nuggets, Big Mac and Fries twice a day for weeks on end…..doesn’t take a lot of working out!! A diet packed with sodium, chemicals and fat and devoid of nutrition. I actually went to the doctor with a mouth full of ulcers and skin peeling away. She was shocked,told me I was “nutritionally challenged” and after telling her my choice of diet she probably thought I was challenged in other ways too.
Had I put two and two together then I wouldn’t have been so skeptical about nutrition being so beneficial to Meniere’ssufferers. It just cements the reasoning behind the Supplement system we use to such great effect.
Mike 
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Part 3 of my story…The great contradiction!
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!
***1. Just goes to show how very unpredictable Meniere’s can be. Didn’t take the medicine, ate salty food, drank alcohol, yet I was totally symptom free!…..I was however very very fit. I had been training twice a day and also eating well. MY personal life was happy and stress free and I wasn’t working such crazy hours….The exercise was pumping the blood round my body and obviously helping my blood vessels stay gunk free…..if only this had lasted..
Mike
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Part 4:
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. My Meniere’s Disease was back. 
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.
1. I earlier stated that I was at my worst in London. Atually this was my worst time, it lasted so long and while the vertigo was violent and scary in London. I hadn’t experienced the brain fog and extreme exhaustion at that time.
2. I should have realised I had to take extra care of myself once the tinnitus returned. Instead I carried on eating without worrying about sodium and drank alcohol regularly. Add that to the stresses of work, and what happens?…..well you know full well don’t you?
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Part 5. How They View Meniere’s Disease in Japan
In Japan they have a whole different way of dealing with Menieres 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 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, very effective in removing toxins from the body and nutrient rich. 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.
1. The whole approach to medicine is different in Japan. While they did give me diuretic type drink. The main focus with medicine was to increase my blood flow and give me more energy. It was flawed tough because at the same time they were giving me tranquilizers…The GinkgoPS and the proflavanol in the system we all use now does just that..opens up the blood vessels and increases blood flow in and around the ear and head.
2. Chlorella has been used with a measure of success with some people, but it is only part of what we need. better than nothing though.
3. Acupuncture can help “relieve” the sysmptoms, if you can find a good practitioner (easier said than done), but it doesn’t address the root causes. Still, if you do know of a good acupunturist, might be worth a visit to see if they can help relieve the pressure.
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Part 6..continued..Read before you consider surgery!!
While searcing the web, 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!
1. I would strongly advise anyone to explore all avenues before even considering surgery. At the time, when the doctors refused to even consider it in London I was angry and frustrated. In hindsight they were right. The problem was they couldn’t offer what I saw as much of an alternative…
2. I am convinced the surgery left me with permenant hearing damage. It was not supposed to but before I had the surgery, my hearing fluctuated greatly and was sometimes pretty good. Ever since the surgery it has been at a constant very low level. I am often quite envious of people we hear from that have taken the supplements and their hearing has returned.
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Part 7… False Dawn..
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! My Meniere’s Disease 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.
1. No advice points here, but I guess you can understand how desperate I was when I decided to finally give the supplements a try…….I would have tried anything I think, thank god I did though.
2. Beware of false dawns with Menieres. Often it can lie dormant for weeks, months and even years before resurfacing again. Surgery and other treatments may only end up being a temporary fix, that lull us into a false sense of security.
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Almost finished……one more after this …..with a real twist..
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 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 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.
**1. It took me a full six months to “fully” get well, but I did see results very quickly.
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Part 9.
Happy Ending…though there is a twist in the tale…..happened just recently!
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.
Even though I had been clear of meniere’s disease 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 menieres sufferers, through her great web site.
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.
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A WARNING:
Since 2002 I have been symptom free and although I do feel a slight increase in pressure in my ear during very heavy weather.
One question I often get is, “have you ever had a relapse, or have the symptoms ever returned?”
Until 2006 I could confidently say, “NO”……but my problem is I could often get slack and stop taking care of myself. My confidence in the supplements “is” that high. However, in 2006 I had a sudden drop attack which left me in hospital with concussion!
Before you doubt the supplement system, let me explain: It was completely my own fault!! I had two friends from the UK come over and visit me here in Japan. I was so excited that all common sense went out the window. I only slept 4 hrs the night before they arrived and I forgot to take my supplements in the morning. We went out “drinking”, all night and ate a lot of junk food. Got home at 7am, had 3 hours sleep, again forgetting my supplements, then drove three hours in heavy traffic, to play soccer. Played two hours of soccer in the summer heat and although I was starting to feel dizzy (not menieres dizzy, but dehydration dizzy), I didn’t stop to take water. No way to treat anyones body, but a 41 year old with a history of menieres? Madness. At the end of the second hour it hit me.
Do you think I have ever done that kind of thing again?..No way!….A few days with no supplements, poor diet, lots of alcohol and no sleep….playing football for two hours in the heat…..ha ha ha..not very bright really
Importantly, the attacks didn’t affect my confidence at all. It was a very short lived attack, only seconds but I banged my head. I knew exactly what I had done to bring this on and even didn’t take the warning signs seriously. Definitely learnt my lesson, there.
BUT HERE’S THE REAL TWIST!
For years I have been sending out information about amalgam fillings and the connection with menieres……I had always thought I had no fillings. Not because I have such wonderful teeth, but because I am terrified of the dentist and refuse to go. Hadn’t been since I was 14 years old!
The other day, my daughter found a filling behind my front left tooth! Yep, you guessed it AMALGAM. I had to bite the bullet and go and have it removed. What no gas?? Traumatic but it is gone and with it over the next few months of taking the supplements any lingering poison with it
