Updated: Jan 9
5 Real Science-Based Solutions That May Work For You
I've lived with this awful disorder for over 35 years. For most of that time I tried to carry on a normal life despite the totally unpredictable, hideous vertigo attacks: the room spinning, my balance gone, nausea and continuous uncontrollable vomiting. During the worst years the attacks lasted an unbearable 8 to 12 hours. I remember the humiliation of my wife and children and sometimes strangers carrying me helplessly to a place where I could ride it out. And I remember the constant fear of the next attack. The slightest imagined trigger would release the adrenaline through my body that more often than not would help bring on the attack I so feared. I've lived through two serious, unrelated cancers in my 70 years, facing death both times. But for sheer terrible, destructive assaults to my spirit and my soul, cancer didn't compare to the anguish that Meniere's Disease (MD) has caused me.
Throughout the years I learned the hard way how little the medical community understands or seems to care about this disorder. I engaged many ENTs who had very little of use to offer me and usually did not believe any of the MD research I had done on my own. I was put through hundreds of audiology tests to repeatedly confirm that yes, the disease was gradually destroying my hearing, and yes, I do have tinnitus.
Despite all this I have the disease under control now thanks mostly to the exhaustive scientific research done by one of my daughters (a physician) over the last decade; research which has produced real solutions for me. I am not a doctor, so I am certainly not qualified to give medical advice. But I believe that the answer to controlling most people's Meniere's Disease lies in some combination - or all - of the following treatments that I have discovered and used successfully.
1. Antiviral Drugs
About 20 years ago a Japanese doctor did a study of 300 people with MD symptoms. He postulated that people with our symptoms also carry the Herpes Simplex virus in their bodies - a common virus that the majority of the population carry for most of their lives. His theory was that the virus built up in the ears and, in combination with MD, contributed to the MD attacks. Over 80% of the people in his study found relief from their MD symptoms. The study can be downloaded from here.
This was backed up by a research doctor in the US who examined the cadavers of people who had MD during their lifetimes. 100% of the cadavers had a build-up of the Herpes Simplex virus in the semicircular canals of their ears. This study (which you can download from here) also included treating MD patients with antivirals, and had a 91% success rate.
About 15 years ago I started taking a course of the antiviral drug Acyclovir. At the time, this was still not an accepted treatment. My internist agreed to prescribe it for me as much to address my mental state as anything else. A heavy starting dose triggered two significant attacks, but then everything drastically improved. For years I experienced only a mild attack every few months instead of the almost weekly severe attacks I had been enduring for years and years.
Now that this treatment has finally become more accepted by the medical community it is much easier to get a prescription; especially since there are almost no negative side-effects. Your doctor should determine your dosage, but this is what worked for me: 800mg three times a day for one week. That's the dosage that triggered the two attacks I just described, which started clearing everything up for me. The second week I took 800mg twice a day. Ever since then I've been taking 400mg twice a day.
2. SSRIs (Selective Serotonin Reuptake Inhibitors)
These drugs are used to combat anxiety and depression. I truly believe that many of our attacks are brought on by our own fear of the attacks. Perhaps it has something to do with that shot of adrenaline we experience when some vague trigger makes us think that an attack may be coming on.
My attacks had become few and far between over the Acyclovir years. But I did get a bad one during allergy season a few years ago (see Allergy Treatments below). Something changed in my mental state. My ever-present fear of an attack became overpowering after this attack. I became afraid of leaving my house, and afraid of every conceivable trigger. The anxiety I felt was also leading to depression. I consulted a psychiatrist who put me on an SSRI. After some experimentation, all my anxiety and depression vanished. I no longer feared an attack and it seemed that as a result I had fewer and milder ones.
After several years, I was so confident that I thought I would stop taking the SSRI. A month later, many of my MD symptoms came rushing back. At this point my daughter started researching again. She discovered medical literature which confirmed there is a connection between SSRIs and vestibular system disorders. You can download that here. So it is very possible that the SSRI I am now taking regularly again is not just allaying my anxiety over MD attacks, but is also chemically helping to prevent them.
This is a remarkable drug developed by Abbott Labs almost half a century ago specifically for MD. It improves blood flow in the inner ear. It is approved in almost every country in the world - except the USA. Our FDA initially approved it but then withdrew their approval because they found a defect in the conduct of the clinical trials. My guess is that Abbott didn't feel that the expense of redoing the clinical trials was worth it since they were now selling the drug everywhere else the world. Britain's National Health Service (NHS) website has a lot of information on it if you'd like to read more.
Once again, my daughter discovered this drug for me at a time when I had experienced a few mild attacks. I figured the ENTs would think this drug was more voodoo, so this time I consulted an otolaryngology surgeon. Aware of the drug's efficacy, she gave me the prescription without hesitation. Since it is not approved by the FDA I have it made by a compounding pharmacy. Another alternative would be to buy it from a Canadian pharmacy.
I've had great results with this drug. The biggest change is that my very occasional attacks (now only 1 or 2 a year) are now very mild. They last for less than 2 hours. Only the first half hour involves any spinning, so I am able to read or do crossword puzzles after that, until all symptoms are gone.
Once again this stokes my fury against all the ENTs I had consulted for decades who should have known about the existence of this widely-accepted, very effective solution despite its disapproval by the FDA.
January, 2023 Update: After 2 years of a dosage of 16 mg three times a day, I have now reduced the dosage to 16 mg twice a day. As I write this, I've been on the lighter dosage for three months during which time I have had no MD symptoms of any kind.
4. Allergy Treatments
April through June is seasonal allergy time where I live. No matter what other MD treatments I have use, some MD symptoms are always worse at this time of year. So I have learned that dealing with your allergies is an important component of treating MD. I take a topical steroid nasal spray every night. Every morning I take a generic version of the allergy drug Singulair. The two work very differently, so they complement each other well.
You can even add a third one called Claritin (or its many generic versions) as it is an antihistamine, which works completely differently from the other two. However, antihistamines and some other drugs can conflict, so as with all my advice - consult a physician.
5. Avoiding Two Particular Stimuli
MD can be such a mysterious disease. If you're like me you can become afraid of dozens of different stimuli which you think might once have triggered an attack. There's can be a total randomness to MD attacks that makes avoiding most stimuli useless. But over the decades I have learned that there are two particular stimuli that are definite, almost-immediate triggers for my MD. The first is a specific lighting situation. Not just any light, but bright flashing lights within a mostly dark environment. The second is loud sound. Again, not just any loud sound; something that vibrates the fluid in your semicircular canals for several minutes. For me that is most noticeable when it is my own voice. If I speak very loudly for several minutes, such as when addressing a large crowd, this can trigger an MD episode. I never do that anymore!
I am not covering steroids here - oral or injected. Oral steroids have never helped me, and the injection is my next course of action if I ever need it. And then of course there is the last resort - surgery. Cutting the nerve and living with a cochlear implant will end your MD symptoms, but is something which I have never explored. I’ve also never experienced any MD symptoms during the two lengthy chemotherapy courses I’ve had to be on for other reasons. That is certainly not a recommended treatment, but it is food for thought.
I currently do all five of the solutions above. I haven't had any serious MD symptoms at all since I've been on all five of these treatments. I conduct a normal life, enjoy every day of it, and do not live in fear of MD anymore. I went through decades of hell that no one should have to experience. I hope my experiences and the solutions I have found will help others deal with this awful disease.