My Meniere’s Disease began some 20 years ago, while I was leading a workshop in England, when I experienced a sudden and dramatic hearing loss, specific to one ear. I had to ask people to repeat what they had said, and to focus my attention on each person as they were talking. It was quite worrisome.
On my return to the US, I immediately contacted my doctor, an otolaryngologist that I hadn’t seen in 10 years or so, and went in for an exam. Indeed, I had suffered a dramatic hearing loss in one ear. The doctor’s diagnosis was cochlear hydrops, sometimes referred to as endolymphatic hydrops, an imbalance in the fluids of the inner ear. While the actual cause is often difficult to determine, various causes are reported to include trauma, such as a blow to the head, infection, degeneration of the inner ear, allergies, dehydration and loss of electrolytes, and rarely, a benign tumor. He prescribed a dose pack of prednisone, and suggested I reduce my salt intake. After taking the dose pack, my hearing returned to normal. All was well with the world again, though a side effect of the prednisone was that I didn’t really sleep for some 10 days, a very disconcerting period.
Several years later, I had a second episode of hearing loss, though this one was more gradual, occurring over a period of several days. I returned to the doctor, who again diagnosed cochlear hydrops, and prescribed prednisone, noting that he would not be able to do that very frequently because of the risks of taking too much prednisone. Given my previous experience with the loss of sleep for days on end, I told him I would not be taking a third dose pack in any event, and that I’d rather have the disease than do without sleep for a week. He encouraged me to follow his orders, also prescribing diazide, and reminding me to minimize my salt intake. He also noted that he gets an increase in these cases just after the holidays, since that’s the time people are most likely to eat more salty food, drink more alcohol, and drink more coffee (caffeine), adding that the risk factors for this disease are salt, alcohol, and caffeine, along with smoking, which I don’t do.
Several years later, yet again, I had another episode of hearing loss, and this time he was, as promised, reluctant to give me another dose pack, but did change my prescription from diazide to maxide, a stronger dose of diazide. I struggled off and on with some form of hearing loss over the coming years.
Full Blown Meniere’s Disease
In July, 2014, while watching early evening TV, the TV and room, suddenly began to move every time I blinked my eyes. When I closed my eyes, I had a dizzy feeling, along with nausea. I went to bed, taking a vomit bowl with me, but hoping for some relief. After vomiting, I felt a little better, and fell asleep.
The next morning I was still not well, and scheduled an urgent appointment with my doctor, yet again. On examining me, he advised that I had full-blown Meniere’s Disease, and prescribed valium, 2 mg, three times per day, plus continuing with the diazide/maxide. Up to this time, he had not mentioned that cochlear hydrops was on the Meniere’s spectrum. So, I now knew that I had long suffered with a form of Meniere’s, which now had far more serious and debilitating symptoms.
I was not enthusiastic about taking valium (diazepam). I had read that it was addictive, and over time, required an increasing dose to sustain its effectiveness. I had also read that it, along with its benzo-diazepine relatives like Xanax (alprazolam), lorazepam, and clonazepam, has been implicated as a contributing risk factor to dementia with long term use, e.g., greater than one year. So, I held the valium in reserve as a counter-measure in the event I had another attack of vertigo, nausea, etc. At some point after this, I also began keeping a log of any events related to my now diagnosed Meniere’s Disease.
Things were generally ok, until January 12, 2015, when I had a sudden, severe attack of vertigo and nausea, along with hearing loss and tinnitus which had begun about a week earlier. I began taking the valium as a treatment, but to little effect for approximately 24 hours. Essentially, I stayed in bed, wearing blinders, since any change in light coming into my eyes sent me into a spin resulting in severe nausea and vomiting to the point of dry heaves. Even turning over in bed had to be done very slowly, as any motion would send me spinning. It was really difficult to get to the toilet. I either had to crawl there slowly, or have my wife slowly lead me blindly to the toilet. The next three months are a bit fuzzy given my condition, and even with my log, the dates and facts discussed below reflect my best recollection, which may be somewhat off. My hearing loss was chronic during this time, and seemed permanent.
Beginning on January 18, and over the next five weeks I suffered a series of debilitating attacks of severe vertigo and nausea, most of these requiring that I remain bed ridden for at least a day, and needing assistance for almost everything, even including going to the toilet. During that time I began taking a regular dose of valium, increasing it from 2mg per day to 2mg, 3 times per day, at which point it seemed to be effective at keeping the symptoms at bay. The side effect of that of course was that I felt in a bit of a fog most days.
On February 25, and based on a referral from my regular doctor, I went to see a specialist, some 150 miles away at a prestigious medical school, specializing in otolaryngology. The specialist stated there is no known cause for Meniere’s Disease, nor is there a cure, but there were treatments. He could inject a steroid into my inner ear, a treatment that sometimes worked (emphasis added); or he could surgically implant a tube from my inner ear to my spinal column, which sometimes worked. A sure-fire “cure” for the vertigo would be to surgically remove my inner ear; or to chemically destroy my inner ear. However, this would leave me deaf in that ear, and without the sense of balance that the ear provides. Some cure, I thought. What would happen if I developed Meniere’s in the other ear? After a brief reflection, I elected to have the steroid injection into my inner ear. After two weeks, there was no noticeable change in my hearing in that ear, though I hadn’t had another attack of vertigo in 11 days with the increased dose of valium.
Developing A Successful Treatment
On March 2nd, I had another attack, in spite of the valium, though it was milder with some dizziness and vertigo. I was very discouraged. My life in general was miserable. I couldn’t really plan anything at all for fear of an attack that would leave me totally dysfunctional. About this time, I also pondered my situation long and hard trying to develop a strategy that would help restore some quality of life. I am not a doctor, nor do I have any medical training, but I am an engineer and so began to apply some basic engineering.
My first step was to consider the risk factors associated with Meniere’s, i.e., salt, alcohol, and caffeine. I reasoned that salt and alcohol are hygroscopic, that is, through absorption or adsorption they bond to and tie up the water in your system, making less of it available for normal body functions. I also reasoned that caffeine is a diuretic, that is it tends to promote the formation of urine in the kidneys, flushing water from your system. What these three have in common is they tend to reduce the amount of water available to the body for its normal use. I also reasoned that a greater concentration solids of the fluid in the inner ear might increase the viscosity of that fluid, reducing its ability to flow, which might contribute to a greater risk of vertigo. My theory at this point, and it was just that, theory, or even speculation, was that drinking more water might mitigate the risk factors, and reduce the symptoms.
Moreover, I also recalled that some people with vertigo, not necessarily Meniere’s, have excess or larger-than-normal crystals in their inner ear, which stimulate the vertigo, referred to as benign paroxysmal positional vertigo. The treatment for this is a series of moves developed by Dr. Carol Foster that re-position the crystals. She suffered from this condition and discovered some relief after doing a somersault during an episode. I also recalled from chemistry class that crystals only form when you have a supersaturated solution. The greater the level of super-saturation, more and larger crystals will form. The lesser the saturation levels, fewer crystals will form. Could this also relate to the issues of vertigo? I discussed this with my doctor and he was skeptical, cautioning that you need crystals in your inner ear to stimulate the nerves that provide a sense of balance. My thinking was that if the crystals were excessive in number or size, it could that be a trigger for the vertigo. This also coincided with my theory for treating Meniere’s Disease by drinking more water.
Though I only had a theory that it might help, on or about March 3rd, I began to drink plenty of water, on the order of two to three liters per day, plus whatever other liquids I routinely consumed, e.g., a single cup of coffee, milk, and juice. As a rule, I don’t drink soda. I continued to take valium daily. I also thought, “What do I have to lose?” This was a low risk approach to treating a really debilitating disease.
As the days passed, I noticed that my hearing was getting better, and that my stuffy ear feeling and tinnitus were not as pronounced. Since I had developed a sense of when an attack of vertigo was coming on, I also had fewer situations where I was fearful of yet another attack.
By Mar 25, 2015, my hearing in the affected ear seemed to be nearly normal; my tinnitus was very slight, as well as my stuffy or “swimmer’s ear” feeling. I “tested” my hearing by placing a phone to my ear to listen to the dial tone, and by listening to the TV with one ear blocked. I believed this dramatic improvement came from drinking much more water.
On May 27, I saw the specialist at the prestigious medical school, and outlined my theory, strategy, results and conclusions from drinking more water. He agreed that I should keep doing what I’ve been doing, and that I could slowly go off of valium, keeping a small dose available just in case it recurs. If that was successful, then I could eliminate the dyazide, a diuretic. It’s interesting that caffeine, a diuretic, is a risk factor, but Diazyde, also a diuretic, is very often prescribed to treat Meniere’s Disease. This struck me as contraindicated.
At the time of this paper being written, I am nearly five years symptom free, with not a single episode of vertigo, and have essentially normal hearing in both ears (I’ve been tested). At 72, that’s pretty good. While I do still have slight tinnitus, and a bit of a stuffy ear feeling, these are very mild, and don’t interfere at all with my life.
Cautions and Conclusions
So far this treatment has been very successful for me, but I don’t pretend to know with certainty that it will work for others who have Meniere’s Disease. I know of one other person who has had the same experience as me, and two others who have had similar experience, though theirs is not well documented.
Other variables must be considered in taking this approach. For example, one’s size might be a factor in deciding how much water to consume, e.g., larger people may require more water, smaller people less. Other liquids, e.g., coffee, alcohol, juice, soda, milk, etc. may need to be monitored, or limited. Consuming more water may require increasing salt intake, not reducing it – that was true for me. There are a host of other considerations.
I offer this review of my journey with the hope of helping others. Moreover, I strongly believe this approach deserves a clinical trial as to its efficacy. It represents a relatively low risk treatment with extraordinary possibilities. That said, funding has been difficult to develop. It seems that no one wants to pay for a clinical trial of water for treating Meniere’s Disease. It is my hope that this paper will provide a possible treatment for the thousands of people suffering from Meniere’s, and will stimulate the interest in the medical community, and/ or at the federal level, and among the various insurance companies for funding a clinical trial of this approach. Surely water would be a less expensive, and less risky, treatment than the many drugs and surgeries that are currently in use for treating Meniere’s Disease.
Ron Moore is the author of Making Common Sense Common Practice - Models for Operational Excellence, 5th edition; of What Tool? When? – A Management Guide for Selecting the Right Improvement Tools, 2nd edition; of Where Do We Start Our Improvement Program?; of Business Fables & Foibles; of A Common Sense Approach to Defect Elimination; and of Our Transplant Journey: A Caregiver’s Story; as well as some 70 journal articles. He holds a BSME, MSME, and MBA. He can be reached at 865-675-7647 or by email at [email protected].