Mike’s Experience With Meniere’s Disease: Journey of Suffering, Relief and Discovery
This is the story of Mike’s journey with Meniere’s Disease. The original story detailing 7 years of hell and eventual relief was posted on another website around 2003/4.
This is the updated version taking the story up to July 2016, with all the blips, setbacks, solutions and revelations; telling of years of working with a support group, researching and communicating with thousands of other sufferers, doctors and other health professionals looking in depth information, evidence and proof regarding triggers and root causes. Ultimately it has been a personal journey that began with the shock of being struck down with the terrifying symptoms of Meniere’s, years of debilitating vertigo attacks, the realization that I didn’t have to live with this condition then the years of research and satisfaction of, not only eliminating Meniere’s from life completely but seeing thousands of other do the same.
I had been feeling a bit sorry for myself in recent times. If anyone ever asked I would usually say the past two years had been the worst in my life. You see I had been living in Japan for over 15 years, had built up a successful business and was married with two beautiful kids. I had started up and grown that business during my worst, most debilitating period with Meniere’s and was quietly proud that I had managed to succeed, despite all the vertigo, dizziness and drop attacks I was suffering at the time. That was back in 2001.
Then on March 11th 2011 a huge 8.9 magnitude earthquake rocked Japan. I am sure you know all about the Tsunami that followed and the havoc it caused. We had only just adjusted to the 2008 banking crisis when the knock on effect of the tsunami meant I lost customers to such a degree that I had to close my business and lost everything I had, including my family after the stress of it all ended in divorce. Starting up again from nothing with my children thousands of mile away was soul destroying and very hard; hence the self pity. But I only had to think of the “life” I had during the worst times suffering with the symptoms of Meniere’s “Disease” years before to put things into perspective. I no longer feel sorry for myself and live happily and healthily on an organic fruit farm in the north of Thailand (as of 2015).
The one and half years of watching helplessly as my business went down, despite working my ass off and watching my marriage deteriorate and the stress related to that saw me go from 210 lb (15 stone) to 154 lb (11 stone). Throw in a bout of Hepatitis and being rushed into hospital in 2012 and I was in a bit of a state. The important thing for you the reader to know is that through all of this Meniere’s never reared its ugly head.
You have to take the positives out of any bad situation. For one I had managed to keep my Meniere’s symptoms at bay during a very long, emotionally and physically stressful period. In that time I was ultimately able to find the root cause of my Meniere’s (it can be different in each of us, which is important to understand). I had been spending every spare hour researching causes and triggers of Meniere’s for many years and by Christmas 2010 I had all but finished the book above, and knew this could help most sufferers live symptom free and find their root cause.
For a few years, most days I would finish work around nine or ten at night then work on the book until the early hours of the morning (and you wonder why I am divorced? lol…..lesson there I think!) Then along comes the earthquake, and I am spending all my time trying to keep my business afloat, pay bills, pay salaries and keep my marriage together. It was very frustrating knowing I had all this information that could help other sufferers and yet it was sat there on my hard disc while I scrambled around putting out fires, so to speak. All the while the Meniere’s Help website was being neglected and badly needed updating and amending to match what I now knew.
The upshot of losing everything was I could spend all my time now researching and writing the follow up book, a more more in depth study of the various root causes and most importantly, how to deal with them. My two children have supported me wholeheartedly with this and I have to thank them for believing in me the whole time . They love to read the emails from sufferers now living completely free of the life destroying symptoms labeled as “Meniere’s”.
– The Beginning –
“Meniere’s Disease?…isn’t that something old people get? I’m healthy! I can’t have that!”
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. The word “disease” freaked me out much more than the word “Meniere’s” itself.
If only I had known then what I know now, I could have saved myself years of distress and a huge amount of money. Meniere’s is not a disease, not in the same perception we have for more defined conditions such as heart disease or cancer. It is a particular set of symptoms that gets lumped together under this banner for no other reason than the doctors can’t find or rather can’t agree on a ‘definitive’ cause, but there IS a cause and several contributing factors. It is just a matter of finding yours.
Once doctors have ruled out any more sinister possibilities such as a tumor they dismiss you into the ” Can’t be solved” category and palm you off with drugs meant to suppress the symptoms. The medical term is “idiopathic condition” aka “we don’t know why you have these symptoms”. For the causes for each individual to be found and dealt with means, the whole perception of this conditions needs to change.
Most people get hung up on getting a “diagnosis” and perhaps feel some relief that now they at least know what they have. In fact nothing could be further from the truth in reality. As stated above, it wouldn’t be unfair to say that diagnosis is in fact the medical community giving up actually looking for what the root problem is. From that point it is all about “treating” the symptoms and being resigned to the fact no definitive cause can be found until it lands on their desk in a piece of paper so to speak or a medical journal that tells them clinical trials have found the absolute cause and the cure, which if you understand what the causes are, will simply never happen. Deeper investigation and reading papers on studies don’t seem to be the done thing in most cases.
In my case I didn’t have time to get hung up on finding a diagnosis because it came within hours of my first visit to the GP (Physician).
I was immediately taken to the ENT department at a hospital in Auckland, where I had various balance tests, 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 seemed to do 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 with a massive vertigo attack. 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’ and of course ‘Menieres’
It was the most terrifying experience that I’d ever had and something 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 Stemetil to stop the dizziness.
SERC is a trade mark. The drug is known as betahistine dihydrochloride. It is supposed to improve blood flow to the inner ear and work on the nerve endings in the inner ear to normalize their response to outside influences.
Stemetil, is a drug to suppress the dizziness. It belongs to a group of medicines called phenothiazines. Its function is to correct chemical imbalances within the brain. With Meniere’s patients its 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 you can buy some travel sickness pills (containing Meclizine) over the counter. These will most likely make you sleepy though, so be careful about driving.
Hell in Paradise
My next big vertigo attack came in Hawaii in the new-year 1997. In fact I had several vertigo attacks during my time 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. I was slumped in a wheel chair barely able to open my eyes and they refused to even check what was wrong with me. This was pretty shocking for someone used to the NHS in Britain.
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 was seen by the ENT specialist at the Straub clinic in downtown Honolulu. He agreed it was Menieres and gave me Hydrochlorothiazide and some advice…..the first I had received as far as I recall. He told me to stay away from table 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 effects of the diuretic. I didn’t listen to the advice about beer at the time because I never saw myself as a big drinker anyway. I later discovered it was some of the best advice he could have given me.
You may be given (or have been given) similar ‘diuretics’ to Hydrochlorothiazide. 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 same can be said of Stemetil – see above). The idea of a diuretic is to take excess fluid out of your body.
In a Meniere’s patient, it is thought inflammation is causing fluid to build up in your endolymphatic sac inside the semi circular canal in the inner ear. This in turn causes the sac to balloon as the canals fill up. That pressure and the presence of crystals forming being moved around in the canal is thought to distort the signals to the hearing and balance nerves…causing the hearing loss, sense of fullness, nausea and dizziness, and ultimately the vertigo. An adverse effect of diuretics is that the loss of fluid containing important electrolytes means there can be a depletion of potassium in your body. That in itself can cause symptoms similar to Meniere’s i.e: dizziness.
** The above may not be what happens in every case. With better MRI technology now, there is evidence that in at least some case the sac may be dry and withered**
In hindsight, I would say the doctor at the Straub clinic was one of the best I saw in all my time with Meniere’s. A lovely old guy, very sympathetic and seemed well versed in the importance of nutrition and lifestyle.
Three months later I found myself in London, staggering along the street bumping into people and hitting lamp-posts getting disapproving looks from passers by who I guess imagined I was drunk. I was having multiple attacks everyday and was desperate. I practically crawled into the ENT at St Mary’s hospital in Paddington, nauseated, and spinning out of control . I begged to see someone but was told I didn’t have an appointment so I would have to go to the ER.
I made my own way to the emergency department where I collapsed onto a bench for what seemed like hours before anyone even noticed me. I was vomiting, and the light sensitivity was so extreme I could not physically open my eyes the whole three or four hours I was there. In the end I was seen by a student doctor who simply gave me stemetil 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 if you are not deemed an emergency. One day with this horrendous 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. I was angry and resentful at their refusal to even entertain the idea of surgery but they were quite right to do so. I wish I had listened to them.
When my hearing first started to decrease and the tinnitus set in over a year before in Auckland, being someone who loves music I thought it was the end of the world. I was surprised how quickly I got used to it and it became 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 specialist’ gave me SERC again, stemetil again and told me it was perfectly okay to drink beer as long as it was Czech pilsner beer! She was from the Czech Republic!! Her contradiction of what the ENT doctor in Hawaii had told me was confusing and quite frankly, knowing what I know now, she was plain wrong and in my eyes irresponsible .
It doesn’t take a lot of working out, even to the layman. Alcohol is toxic to the inner ear. Just think about the times you have drunk far too much in your life. In extreme cases, what happens? You stagger all over the place, you can’t see straight and when you lie down the room spins and you throw up. Take away the euphoria and that seems an awful lot like having a Meniere’s attack. You are experiencing vertigo usually until you vomit and pass out. If you already have intensified sensitivity within the ear from your Meniere’s and you add alcohol to the mix. That nerve sensitivity is going to be challenged even more. Alcohol can be a massive trigger FACT.
In Hawaii I was drinking plenty of beer and eating salty food, often times from one of the many junk food outlets around Waikiki. In London, when I was at my worst, I was working 10~12 hour days and studying at night. I was so busy I didn’t have time to cook and was living on a diet of canned 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!!
It was a diet packed with sodium from highly processed salt, chemicals and fat pretty much devoid of nutrition. I actually went to the doctor with a mouth full of peeling skin and ulcers. She was shocked and told me I was “nutritionally challenged“. After telling her my choice of diet she probably thought I was psychologically challenged too.
Had I put two and two together then I wouldn’t have been so skeptical, or apathetic about nutrition being so important and good nutrition being so beneficial to Meniere’s sufferers and that of any other health condition.
Over the next six months or so I got fitted with a hearing aid, which I pretty much never used. But after a few months, something amazing happened. For some unknown reason (at the time) 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. From past experience 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. On the surface, in many respects it didn’t make sense. I was doing all the things I shouldn’t do. I wasn’t watching my salt intake, I was drinking alcohol reasonably regularly, I wasn’t getting great sleep, I was getting my average share of everyday stress, but still it disappeared. There was obviously some major difference in my overall physical state and environment.
Perhaps the most important factor was I had become very fit, training in the gym twice a day. This new level of physical fitness must have made me generally healthier. I wasn’t watching my sodium intake but neither was I eating much junk food. In fact the sodium intake at home was natural sea salts, which are not refined and full of iodine. One other notable difference was that in the period that my first symptoms appeared in New Zealand and my first vertigo attack in my home town, I had been working with paints and varnishes. The chemical fumes from these were often very strong and now I was working in a much cleaner environment. Could these be triggers? It would seem so, yes.
At first glance it seems to confirm the general belief about how very unpredictable Meniere’s can be; how it can come and go. I didn’t take the medicine, I ate salty food, drank alcohol, yet I was totally symptom free!…..I was however very very fit. The training twice a day and a more balanced home cooked diet obviously made a difference . My personal life was generally happy and relatively stress free and I wasn’t working such crazy hours, nor in such toxic air conditions….No dizziness, no vertigo, my hearing had returned, tinnitus was almost non existent and I had bags of energy from the training…..if only this had lasted
I had never been happier, Meniere’s 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 even spent a week or so scuba diving. The extra pressure on the ears didn’t cause a single problem.
There was also one other possibility I hadn’t considered at the time. Just prior to the symptoms disappearing completely, I had had an ACL operation on my knee. In rehabilitation I was obviously given strong anti-inflammatory medicine to deal with a swelling from the trauma in the knee from the surgery. This may also have helped reduce what inflammation there was in the ear. The initial effects of the strong anti-infammatories, the fact I was very fit, relatively stress free, better diet and perhaps the balanced iodine packed natural sea salts may have been a good enough combination of factors to keep the symptoms away.
Stress, alcohol, heavy damp weather, mold, airborne allergens and lots of sodium packed soy sauce – a bad combination with inevitable results
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 in the middle of a hot humid rainy season 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 ‘boom’ the vertigo returned. The whole thing returned with an absolute vengeance. My Meniere’s 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 was an English teacher at the time and I started collapsing in class. It became a vicious cycle. 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 enough with our two year old girl and baby boy. The minute I woke up I would be spinning. Often my wife would have to drive me to work because I was incapable of getting to the train station. Some lessons, the students all seemed to have blurry multiple heads and four to six eyes. I dreaded standing up because I wouldn’t know if I would make it to the white board without completely collapsing. I would have to stay behind after work and put my head down on the table until the symptoms eased enough for me to make it to the train station. I would feel nauseated on the train then when walking home I would nearly always spin into full-on vertigo before collapsing through the door and onto my bed. Every day was a variation of exhaustion and brain fog, ear splitting tinnitus and intense pressure in my head, eyes, ears and the left side of my face, clammy nausea and vomiting, spinning and collapsing. The best I could hope for was to have enough strength to put on a show for everyone else and hide the confused zombie like state I was in. The worst days had me going to sleep at night begging not to wake up the next morning. Even sleep was no sanctuary. I would often be woken by a vertigo attack.
Someone reading about a daily routine like that may feel sympathy, but to anyone who has never experienced the constant debilitating struggle with Meniere’s at its violent, oppressive worst, these are just words. To anybody that has lived through this, there are no words. Even if they have been free of it for years, they understand it in every cell of their body and probably prefer not to dwell on it.
Until this point I had been at my worst in London. Now in Japan it was being taken to a whole new level, it lasted so long and while the vertigo was violent and scary in London. I hadn’t experienced such brain fog and extreme exhaustion at that time. It is an exhaustion that is impossible to describe to anyone who has not experienced it.
I should have realized I had to take extra care of myself once the tinnitus returned. Instead I carried on eating without worrying about sodium too much and drank alcohol relatively regularly. Add that to the stresses of work, and what happens?…..well you know full well if you are a Meniere’s sufferer don’t you?
In Japan I was given similar drugs to that of in the UK and Hawaii but was also given extra medicine to improve blood flow and increase energy. This was negatively countered however with tranquilizers to reduce the stress and dull down the sensitivity of the nerve endings. With the confusing and oppressive brain fog I was already experiencing this made things even worse. I compounded the dulling of my brain cells even more by buying meclizine ( a motion sickness pill for traveling) on the rare occasions I actually did have any warning of an attack coming on. The combination of brain fog, tranquilizers and meclizine turned me into the walking dead. At best like a zombie, at worst I would slump and almost black out struggling desperately to keep my eyes open during lessons. I don’t know how I managed to get through the day most of the time. The quality of my lessons must have been pretty bad.
The tranquilizers gave me very heavy headaches so I stopped. In fact I stopped all the drugs because they weren’t working at all. It was the same situation as London, only this time the symptoms never let up. I was then given Isorbide, a disgusting glycerine drink that acts as an osmotic diuretic. Not sure if it helped at all because the symptoms never stopped.
I heard of a Canadian friend in Japan who had vertigo and stopped it through Chinese medicine. Round about the same time I started making ginger tea to ease the symptoms a little and tried the super food Chlorella. When the nausea became too much of a problem I would freshen my mouth with citric flavored gum or grapefruit which seemed to help slightly.
Chlorella helped a great deal for a time and for the first time in a long time I started to feel normal. I also tried acupuncture which helped even more. Things were starting to look good and I was beginning to have real hope that I was going to beat this thing. I tried five acupuncturists: three were useless, one who was blind worked his heart out but was fighting a losing battle at the time as it was typhoon season and the weather was very heavy ( a known trigger) and there was one lady who was excellent. Acupuncture can definitely help reduce or stop the symptoms. As a treatment , for me it gave me very quick relief but it doesn’t get to the core problem. It doesn’t tackle the cause and if the cause is still present then you find yourself constantly going back for more treatment over and over.
Acupuncture and the use of chlorella showed me a glimmer of hope that ‘conventional’ western medicine had failed in doing ever but that was soon forgotten as I spun back into a terrible state. I completely stopped drinking beer and became very careful about salt intake. Funny, without added salt I think I can really taste fresh vegetables now, much more than before. I didn’t miss the beer at all. I trained regularly and started living like a saint…to a degree! But still this curse wouldn’t leave me alone. 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 full blown vertigo attacks.
In Japan there seems a much more compassionate approach to Meniere’s than in the west. If you enter an ENT clinic suffering from symptoms they rush you to the front of the queue and lie you down for an hour on a sodium bicarbonate intravenous drip.
I met a lot of people in Japan who suffered from “Meniere’s”. It seemed to be more prevalent than in the west where I’d never met anyone with it. That said the symptoms of the Japanese I met seemed mostly a lot less severe. That may have something to do with the culture and interpretation of Meniere’s. Known as “Meniere Byouki” meaning Meniere sickness, it is usually just referred to a “Memai”, which simply means dizzy.
It is possible they don’t get so hung up on the diagnosis of Meniere’s as we do in the west and start treating the individual symptoms for what they are much sooner. I did however have a student who had to quit her job in TV media and stay in hospital for over a month. There seemed to be a much more accepting attitude to the symptoms being brought on by stress. Whether it be the root cause or not they accepted stress was a very real trigger and took it very seriously. Something that in my experience prior to this time was usually dismissed by western doctors. I think attitudes have changed slightly in the west over the years regarding the links between stress and Meniere’s but sadly still definitely ignored or dismissed by many.
Surgery, a very costly mistake
By the end of 2001 I was desperate to have an operation and rid myself of this forever. I searched the internet and found a doctor in San Diego who performed vestibular nerve sections.
My vertigo had progressed from spinning to flickering nystagmus and 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 both a frightening and dangerous development. I then started to fear I was going bilateral. My good ear started to have the first symptoms of fullness. This was devastatingly depressing, so I looked to San Diego, determined to have that operation. I contacted the hospital and flew out to California just after Christmas without even an appointment yet. I saw this as my last chance and broke the bank to get out there.
In a very confused state of severe pressure and endless brain fog punctuated by massive vertigo attacks I had my first consultation with a different group of doctors to whom I had intending on seeing. They had to re-diagnose me and give me their opinion. The consultants 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. ( I have had conversations with sufferers who have had this condition for thirty years). That would be, at best, ten or fifteen more years of vertigo….NOT an option in my eyes! The shunt procedure only had a 60% success rate (allegedly) but I decided I wanted to try.
I had the operation about a week later. It was scheduled for 2 p.m. but was delayed until after 4 p.m. due to an emergency. I was woken up in the early evening and told I would have to leave because the nurses were going home. I was still incoherent and could barely get off the bed, even with assistance. I was ‘helped’ to the door and put in a taxi with a prescription slip in hand. The hospital pharmacy was apparently closed so I would have to find a pharmacy myself in town.
I staggered around town still anesthetized and incoherent and eventually found a pharmacy and got my pain killers and antibiotics. Coming from the UK where health care is free and living in Japan where the usual practice is to keep you as an inpatient for a minimum of ten days after any operation, the “care” I received was pretty shocking. And all for a mere $10,000!!
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 so say 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 symptoms were 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.
I contacted the surgeon and told him what had happened. He explained to me that there were no guarantees because they couldn’t see far enough inside the tubes to see if there was more blockage. His expert advice to me was, “Don’t bend down”. Brilliant!
I got depressed and then something even more frightening. It began to go bilateral again. I started to feel blocked in the right ear again. It was shattering.
The fact that it had failed, though soul destroying was a possibility that I had to accept given I knew the success rate was supposed to be 60%. To be fair I had gone there determined to have an operation of some kind. That said, something bugged me the day of the first consultation though. Once I had agreed to have the shunt implant and not the nerve section, I received an enthusiastic, “Good man” and it was as though they were all giving each other verbal pats on the back for a good $10,000 sales pitch.
I was convinced the surgery left me with semi-permanent hearing damage. I had been assured it would not affect my hearing but before I had the surgery, my hearing fluctuated greatly from terrible to near perfect and anywhere in between. After the surgery it was at a constant very low level. I was often quite envious of people we hear from at Meniere’s Help whose hearing has returned after dietary/nutrition changes and/or finding their root cause.
Free at last, Finally Symptom Free. But what is the underlying cause?
My condition grew steadily worse again and I went back to the drawing board looking for help on the internet. Eighteen months before the operation I had read about a set of dietary supplements that were supposed to be working wonders for Meniere’s sufferers. I had seen wonder cures come and quickly go on the internet around that time and my only experience of ‘multi-vitamins’ years ago had been totally underwhelming. I just didn’t trust the idea. It was also early days in the online shopping era and was a time when many people (me included) feared everything being sold on the internet was some kind of scam.
I could not have been more skeptical but was so desperate to be free of these symptoms I would have drunk kitchen bleach if I thought it would have helped. I contacted the website owners where I had seen the stories of the supplements. They helped me get hold of them and helped me with a lot of advice about diet and lifestyle changes I could make. Their support and positive attitude was in itself a great help and I have to say, an inspiration for my work since.
Within a few weeks of starting the supplements I started to feel a lot better. The dizziness stopped, the pressure subsided, the tinnitus dropped to almost non existent levels and I had more energy than I realized was possible. It had been so long since I’d felt anything but exhausted.
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 Meniere’s sufferers can. I would have a short sudden vertigo attack or the pressure would suddenly increase in my ear. It was obvious I was getting better and better though. I had started the supplements around July of 2002 and by Christmas it was gone completely. No more vertigo, no more dizziness, brain fog or exhaustion. This time it was the real thing. I can’t imagine there had been a bigger (uninformed) skeptic than me about the prospect of supplements and a few alterations in diet helping at all, so there was no chance of the placebo effect being relevant. I discovered that I could have saved myself a lot of money on that operation and got my symptoms under control 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 knew it was there ready to pounce should I let it. I still lay off alcohol and salty food, kept fit and never forgot to take my supplements. Occasionally when I was really tired, stressed or the weather was in the mood I could feel a slight increase in pressure and tinnitus would increase a little. But that’s it- only that.
There were times in the few years that followed when I forgot that I had ever had Meniere’s. That would have been very hard to believe before I started taking these supplements and consequently rebuilding my immune system to levels needed to combat the inflammation.
I think it is a sad reflection of our culture of blind belief and unquestioning respect for perceived authority, that I went eighteen months before I actually tried the supplements. It is mind blowingly ironic that I chose to spend a fortune to fly to the States and have an operation that only had a 60% chance of succeeding and the money I spent on that could have paid for over four years worth of supplements.
Here were fellow sufferers telling me that something had worked wonders for them and I chose to ignore them in favor of going with the advice of a medical community that had failed me for seven years while filling me with toxic chemicals and diuretics that depleted my body of the vital electrolyte potassium. That in itself can create symptoms of dizziness.
Our whole medical culture is one of “treating” disease states and disorders with drugs or surgery, rather than, in most cases, looking for cures and root causes. It is easy to be cynical in an age of powerful big corporate pharmaceutical companies. There is no profit in finding cures or original causes and natural cures or treatments can not be patented so they are either ignored, dismissed or discredited with false claims and sometimes even made illegal. It’s a mass insanity brought on by corrupted misinformation.
My ex-wife is a nurse and she is totally trapped in the mindset that drugs are good because qualified doctors prescribe them and dietary supplements either do nothing but produce expensive urine or are even dangerous. Dangerous?? Millions of people die from pharmaceuticals (more than recreational drugs) and people are worried about highly concentrated natural food extracts?! Thankfully many doctors are waking up and getting the truth out there. Dr Strand is a very good example. He spent 23 years opposed to supplementation and did his best to put patients off the idea of supplements, claiming they just produced ‘expensive urine’ and had no benefits. He now runs a cellular nutrition based practice after seeing his wife recover from fibromyalgia using supplements, where drugs had failed for years.
The misinformation over supplementation is distorted even more by the fact that the manufacturing of them is not regulated. With the exception of a few manufacturers who take the quality, potency and safety of their supplements so seriously they choose to be regulated to pharmaceutical grade, other manufacturers may pack their supplements with harmful or useless fillers. What they state on the label may not always be what is inside the supplements.
Because of their pill form, it took me time to get used to the fact that supplements are simply concentrated food extracts. It would mildly irritate me if friends or family joked about my “pills”. They would stand there making jokes about me taking them, then trot off down the pharmacy to get their regular doses of drugs for this, that and the other illness. I have only been to the pharmacy twice in eleven years since starting my “pills”. Instead of filling my body with possible toxins, chemicals and artificial laboratory manufactured combinations to inhibit the body’s natural biology from doing something it is meant to, I fed my body at the critical cellular level with everything it needs to make a healthy environment for those cells to regenerate into new healthy cells. Therefore supporting a strong immune system, and enabling it to deal with the inflammation in my ear regardless of whatever the actual root cause is.
My ex-wife had a period where she always felt run down and was always getting throat infections. I suggested she take the basic essential vitamins and minerals which were part of the regimen I was taking. She eventually agreed reluctantly then within a few weeks she was the healthiest she had ever been. Some of her colleagues voiced their “concern” and bowing to peer pressure she stopped. Very quickly her health degenerated again so she started on the supplements once more. Her health restored again she continues to take the supplements but doesn’t like to talk about it, as if it were some dirty little secret. I find this ignorance and denial quite shocking to be honest, especially among those who are entrusted with our health. Ask the average doctor in the US or the UK how much of his or her time in medical school they spent learning about nutrition and you will be shocked at the answer. You will be lucky if they tell you it was longer than one afternoon.
The AMA had for years tried to discredit dietary supplements until they were forced by Harvard studies to admit it is “prudent” for everyone to take them to prevent degenerative conditions. Everybody suffers from the same affliction to different extents in today’s society. We take authority as the truth, rather than the truth being authority. Nowhere is this more evident than in our blind belief in the absolute authority of the corporate pharmaceutical controlled medical “industry”.
And we don’t exactly get much wisdom from the powers that be; in Hillary Clinton’s Health Plan 2009, the words “Nutrition” and “exercise” appear once. The word “drugs”? Fourteen times! A healthy diet of fresh, organic, non GMO whole foods, vegetables and fruits, exercise and top quality supplementation is the front line in preventative medicine and is proven in many cases to reverse “disease” states. Junk food full of toxic chemicals and excess fat and sugar is the grave threat. Surely promoting health is more about ‘preventing’ degenerative conditions and getting to the bottom of causes rather than filling us with endless drugs.
The Road To Finding My Cause
After a period of almost forgetting all about Meniere’s I started to think more and more about this disease (which is not a disease), that ruined my life and the life of my family for so long.
The ego in me wanted to create something good out of all the bad that I had experienced. Around 2004 I started getting involved with supporting Meniere’s sufferers.
I soon got involved more and more and it began to take over all my free time. I started my first Meniere’s Help website and started a three year course on clinical nutrition. I wanted to know just how the supplements and food had helped and exactly how what we ate and didn’t eat made such a difference in our health.
Studying nutrition really opened my eyes to what is going on with our health, the biology of it, the obvious simple truths that are hidden in plain view but ignored by so many and a whole different approach to medicine and both disease prevention and promotion of good health through what we eat, drink and do in our lives. It is so simple yet we all ignore it for the more convenient and health destroying norms of modern social culture. Our environment is saturated with foods full of harmful pesticides, herbicides, chemical additives, processed sodium, refined sugars and dangerous fats, not to mention the invasion of GMO’s in our lives. Pharmaceuticals that poison, chemicals in the air, household products, toiletries and skin care products full of toxins and the list goes on. This proliferation of biologically destructive elements all around us and inside of us has resulted in a full scale attack on our endocrine and immune systems. It is a wonder any of us are healthy these days. It is a slow kill, where rather than living longer as we commonly believe, we are in fact suffering longer and dying longer. It doesn’t take a genius to work out why in the regions of the world where they have the longest life span the population has a better lifestyle and healthier diet. Places like Okinawa in Japan or the European Mediterranean are good examples.
The obvious health benefits of what nature provides is well known but often hidden, discarded or ignored. In a perfect world we wouldn’t need supplementation. We would easily be able to get all the essential nutrients from the food we eat. The reasons we don’t could fill volumes of books, and do.
Around 2006 I made three videos that were eventually put on you-tube and other media sites. Frankly they were awful. I was trying to tell the Meniere’s world about how the supplements had freed me of my symptoms and how they were freeing so many others who were contacting me at my site and a network of other help sites. The videos were awful in part because I was not comfortable talking to a video camera and I was having this argument in my head saying, ” Who do you think you are?” , I also worried viewers would think I was some kind of scam artist. How times have changed since then!! Despite the terrible ‘performances’ the vast majority of comments and most of the feedback I received was very positive.
From my experiences and the experiences of the growing numbers of sufferers contacting me through the website I believed that only one thing was for sure with Meniere’s, and this was that nothing was for sure with Menieres. It seemed 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 or processed food and keeping fit; getting plenty of sleep and trying to reduce stress; being wary of barometric changes in the atmosphere, pollen in spring and humidity, dampness and mold. I had to take all of these things into account when I was sick.
Even though I had been clear of symptoms for a few years I found myself getting more and more obsessed with the condition and found myself researching endlessly. Every email I received telling stories of misery and the feeling of loneliness and desperation really resonated with me. I really felt for every one of them as I had lived through this myself. 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, “Meniere’s?”
The most perplexing and certainly the most difficult to handle emotionally were the odd mail we might get involving very young children. The thought of a child experiencing the horrors that can come with vertigo was hard to deal with. It only doubled my resolve to find answers though.
This an extract from a mail sent to us in 2012 from a girl in Australia, who had suffered when she was eleven years old.
“I just wanted to thank you for the support I received back in 2006. I don’t remember who I was in contact with exactly, but I know I got a lot of lovely emails of encouragement and so many people contacted me with their success stories to help me out. Those years were a really hard time for me, and in 2010 I was diagnosed with depression that had started in 2007 and was caused by the extreme stress Menieres causes.
I just wanted to share that I am finally vertigo free and am so happy that I was somehow able to shake it. I wanted to thank you for the amazing work that you have done here, and let you know that your advice and support has saved my life. If I still had the Menieres I don’t know that I would be here today, and your advice on stopping the attacks saved me. I owe you everything.
Although I doubt you remember me, you are a huge part of the reason that I am still here today, so thank you so so so much.”
We certainly did remember her and all remembered how distressing it was to know she was suffering so much at the time.
Despite my obsession with the condition, the more and more research I was now doing and the daily email and phone conversations I was having with other sufferers, my own symptoms were something of the past.
Or so I thought! I had been symptom free for four years and was generally very fit and healthy. One question I often get is, “have you ever had a relapse, or have the symptoms ever returned?”
A Painful Reminder and Telling Surprise
Until 2006 I could categorically say, “NO”. I could occasionally get slack and stop taking care of myself, without any fear of an attack. My confidence and knowledge is that high. However, in 2006 I had a sudden drop attack which left me in hospital with concussion!
Before you have any doubts, let me explain: It was completely my own fault!!
I had two friends from the UK come over and visit me 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 nothing but junk food. I got home at 7 a.m, had 3 hours sleep, again forgetting my supplements, then drove three hours in heavy traffic, to play soccer (football). I played two hours of soccer in the heavy, humid summer heat and although I was starting to feel dizzy (not Meniere’s dizzy, but dehydration dizzy), I didn’t stop to take water. No way to treat anyone’s body, but a 41 year old with a history of Meniere’s? Madness.
At the end of the second hour it hit me. I had just sprinted and taken a shot, then as I turned to jog back my legs shot up in the air and I came crashing down on my face and passed out for a few seconds. A friend had been videoing the match and as I led there concussed in the ambulance on the way to the hospital, my two ‘friends’ giggled non stop with the paramedic as they continually rewound the video and watched me hit the ground. They showed me and it was a surreal moment. I agreed with my friends that it really did look like I had had my legs kicked into the air by a ghost. The sound of the thud as my face hit the ground was a bit sickening but my overriding feeling was one of amazement that the brain could throw my unwitting legs so high into the air simply by getting the wrong signals from my balance nerves. It made for some incredible footage of a drop attack in action. Unfortunately my friends accidentally erased it while watching in the hospital waiting room.
A CT scan did find a brain in there but no damage except a nasty bump and dent to my pride. 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 very oppressive humid heat? Not the brightest of ideas.
Importantly, the attacks didn’t affect my confidence at all. Bang on the head aside, it was a very short lived attack, only seconds. I knew exactly what I had done to bring this on and even then didn’t take the warning signs seriously. Even if I hadn’t had a history of Meniere’s, the dehydration and fatigue induced light headed dizziness should have been ample reason to stop and take a break at the very least. Definitely learned my lesson there but stupidity aside I knew I was fine and had nothing to worry about in terms of the symptoms returning again. It was a very painful but educational blip.
For years I have been sending out information about amalgam fillings and the connection with Menieres……I had always thought I had no fillings at all. 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!
One day not long after the ghost tackle, 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. The dentist was most amused when I asked for gas. Well it had been close to thirty years since I’d last sat in a dentists chair quivering with fear. It was a traumatic experience for a wimp like me but the amalgam was removed and with it over a period of taking the supplements any lingering poison with it.
Even More Painful Revelation
Once again while playing football I broke my cheek bone and eye socket in a clash of heads. It was on the same side as my affected ear and after the initial stunning blow and minutes of intensely heavy pain, blood started pouring down through my left sinus and out of my nose. The blow severed nerves between my eye socket and cheek bone and that left my teeth numb. I was very lucky that the nerves somehow fixed themselves.
The shock was that only minutes after the clash of heads my sinuses felt clearer than I could remember and all my hearing returned! I was so happily surprised that I almost forgot about the painful injury.
For four or five years I had believed, ever since my endolymphatic shunt implant that the hearing in my left ear had been damaged permanently. The hearing only lasted for a few weeks but it had me asking more and more questions. I had been hearing of so many others regaining their hearing while on the supplements and knew it was possible but in my case, after years with the worst symptoms it had fluctuated then abruptly after the shunt operation it seemed doomed to a permanent low level. Had the blow moved some skeletal alignment, had it unblocked some tubes, what was going on?
From that point on the research into causes intensified until in 2008 I committed myself to finding the answers to the causes and triggers then publishing them.
By joining the dots of my own history I could come up not only with the underlying cause but even the preceding events and subsequent problems that had a knock on effect that almost certainly culminating in those first symptoms appearing in 1996.
Anybody can live symptom free, supplements or no supplements; You Do Not have To Live With Meniere’s.
A certain doctor in San Diego said to me back in 2001 that “Nobody has to live with Meniere’s”. He was absolutely right, but rather than everyone having the $10,000 + operation he sold to me, and hedging their bets at 60/40 if you are lucky, I say everyone can find their cause and solution.
Since the early 2000’s, along with a team of others spread across the web I have been telling everyone the importance of what you eat, what you do not eat, lifestyle and what was the most vital aspect at that time – the set of supplements that keeps the immune system healthy and Meniere’s sufferers symptom free.
However, there have always been a number of problems regarding the supplements that constantly bugged me. I will highlight three:
Cost: The supplements we talk of are not cheap. For the average person it is a considerable financial consideration. For those who weigh it up and can afford it, they are almost always rewarded with a life of little to no symptoms.
For those whose budget permits, it is no problem. They are just happy to live a normal life again.
But for every one sufferer who either can afford the supplements or make sure they can afford them one way or the other, there are 10 or more perhaps who simply cannot (that may be an understatement). I have always found it very difficult to know what to say to the single mother crippled by this condition, having to hold down a job with mouths to feed or worse still, on welfare. It just didn’t seem fair, especially knowing how horribly I suffered myself.
Availability: We get emails from all over the world, and although the number of countries selling the supplements has increased greatly, still far too many people simply cannot get them. They could get them sent from friends in the U.S. the U.K. and Australia etc meaning even more cost or try the hit & miss of other local supplements I could not confidently recommend.
Trust: I know how I felt about the idea of the supplements when I first heard about them; I simply didn’t trust the idea. I am pretty sure this has been the main factor in why many people who contact us never try them. As I state above it took me 18 months from when I first heard of them to start taking them and then only after I thought I had exhausted all other avenues first. So I know the trust factor is the main reason people lose out and continue to suffer. If you are reading this, I am sure there are doubts in your mind.
Times have changed!
At the time of writing this paragraph (2016), it is 7 years of research and looking for answers to root causes and how to deal with them and communicating with 1000’s of sufferers, doctors, other healthcare professionals and support volunteers has given me a wealth of knowledge. Joining all the dots it all makes perfect sense. My current email account alone has over 8000 emails from these people, and this is the 3rd account I have used purely for Meniere’s support.
Triggers, Causes & Cures
We now have enough knowledge for any sufferer to find their root cause, the associated triggers and most importantly, what to do about them and regain a normal healthy life, free of every symptom. I worked into the early hours of the morning for years recording my findings and since delved much deeper into the underlying causes and contributing pathology and triggers. Use this knowledge to get your life back and don’t waste years of your life as I did, suffering needlessly.
The one upshot of losing everything in the aftermath of the Japan earthquake was, I could concentrate on research and not have to run around putting out fires on a business and personal front at the same time. Also in the interim many developments on the Meniere’s front meant I could put even more into my books that will benefit you, including my own case study for a search for origins and even a cure. I don’t like that word ‘cure’ because Meniere’s is not a disease to be cured, but you’ll get the picture.
If you are feeling sorry for me at all after reading my story; don’t! There are millions worse off than me, you included if you are still spending everyday struggling to cope with Meniere’s. I can now live a life where I practice what I preach (that hasn’t always been the case), eating healthily and living healthily and I DO NOT NEED SUPPLEMENTS.
The Truth About Meniere’s
You know for yourself, when you come online looking for answers, there is a bewildering array of contradicting views and 1000’s of sites spouting the same copied material from medical sites. Your doctors tell you, you have to live with it and nothing can be done, some sites claim the supplements we use are the answer, ‘John of Ohio’ claims his recommended supplements help, chiropractors claim everyone has had a neck or spinal injury at some point and only they can cure it, a doctor in Japan says most sufferers have the herpes virus in them, others attribute it to stress, auto-immune dysfunction, it’s hereditary, genetic, thyroid related, mold, allergies…..and the list goes on & on.
So who is right?
The truth is, everyone is different and there are a number of causes and contributing causes/triggers. All the above are relevant, but which one is relevant for you? This is what you need to know. I have narrowed down the common threads and joined the dots enough now for you to know the truth and do something about it. NOBODY HAS TO LIVE WITH MENIERE’S, PERIOD.
Managing Meniere’s Disease – How to Live Symptom Free has been available since 2013. Read what people say about this book and how they regained their lives here.
Use my experience, the experience of others and my research to set yourself free. Be it through controlling your symptoms or more so I hope, finding and dealing with your own individual root cause(s) you CAN beat Meniere’s.
It can be done, it has been done by multiple thousands that we know of alone and it is being done as you read.
September 2016. The second book ‘The Need For Balance – How to Deal with the Causes of Meniere’s‘ is now available (3 years overdue). This book focuses almost entirely on root causes and how to eliminate them from your life.
Double the size of Managing Meniere’s, The Need for Balance has detailed explanations on how the causes below are related to Meniere’s, how these can eventually manifest the symptoms of Meniere’s and how you can eliminate these causes from your life.
- The Importance of Diet
- Food Allergies & Gut Issues
- Metabolism, Thyroid and Endocrine system/The Hormone System
- Amalgam & Mercury Toxicity
- Airborne Allergies & Mold
- Muskuloskeletal Imbalances
- Viral & Bacterial Possibilities
- The Immune System, T-Cells & Autoimmunity
You will understand how each possibility may relate to your own individual case and know what action to take, be that by yourself or through the appropriate health professional. Everything is supported by extensive medical and scientific studies, data and statistics but most importantly the real experiences of other sufferers.
Most of this book has also been broken down into separate individual mini reports which you can find here.
Already found your cause and live free of Meniere’s ? That’s great news – I would love to hear from you…let the Meniere’s world know the truth and ease other sufferers of the anxiety and fear that comes with this condition. Let them know there is more than just hope of regaining their life but real ways to do so. email Mike Spencer at firstname.lastname@example.org