Friday, March 25, 2016

Extreme Moderation and Meniere's Disease: My Struggle.

Two years ago in May, I was at work on the Psych Unit in St. Helena when things started to get a bit wobbly. I felt a weird, heavy sensation in my head, followed by a rushing noise in my ears, followed by a "spin". The world was spinning so fast, much like a Tilt-a-Whirl at a carnival, that I had a hard time walking. A kind colleague walked me down to the Emergency Room (where I did the psych evals) and helped me into a gurney. The doctor there said it was just "vertigo" caused by a recent cold that I had had. An inner ear disturbance. He gave me meclizine and told me to take a couple days off and rest. He got it partially right; it was inner ear related.

A couple months later, it happened again. And again after a couple more months. And so on.

I had started calling them "attacks", these vertigo spins. They lasted for up to two hours, but generally they are over after forty five minutes. Joni was concerned.

Then last April I had one while driving on a busy section of highway 99 about ten miles outside of Chico. This attack was a bit worse than all the others. Joni had to come rescue me (from 45 miles away) and the spin was still going. I fell into the van and endured the spin. She went to the grocery store while I continued to spin in the back of the van; when the spin just wouldn't subside, she took me to the Emergency Room. In the Emergency Room waiting area, the spin continued and I started to vomit.

 I was hospitalized for the weekend.

They ruled out a stroke and a heart attack. But I didn't get the diagnosis until I saw an Ear, Nose and Throat MD a week after the hospitalization.

I have Meniere's Disease. It sucks.

Meniere's Disease is a disturbance of the inner ear where, they think, the fluid builds up over time and then bursts, causing the motion center of the ear to become unstable. The result is the classic "spin" or "vertigo attack". The attacks last for an hour or two and, unfortunately, affect your hearing. Hearing loss to the point of deafness is not uncommon.

Meniere's Disease has three components: Tinnitus (ringing in your ears); vertigo attacks; and hearing loss. Nobody really knows what causes it. Once you have it, you have a life-long chronic illness. There is no cure.

I've always had Tinnitus. I always thought it was from playing music too loud in my teenaged years. I liked my Beatles and Larry Norman to be played at rock concert decibel levels. That certainly could be the case, but, more than likely, the tinnitus has been a prodromal symptom of my Meniere's Disease.

The ENT checked my hearing (minor hearing loss in the upper registers, not enough to warrant a hearing aid) and told me to come back in a year to check my hearing again. He also told me to come back if the attacks became unmanageable. He put me on HCTZ, a diuretic, and told me not to eat salt.

I continued to have attacks over the next nine months. They started to get more frequent, and I started to fear for my safety while driving. I drive about six to eight hundred miles a week for my job. I get about a minute's warning with the heavy head sensation and the weird feeling and the whoosh in my ears that an attack is imminent. Once the attack happens, I am helpless for the next hour or two. So that gives me about a minute to find a safe place to park the car and ride out the spin. I started to carry a lounge chair in the trunk of my car so that I could set it up and ride out the vertigo. I carry meclizine (motion sickness pills) at all times. After an attack, I am exhausted and generally need to sleep for the rest of the day.

With attacks starting to happen every two weeks or so, I finally got around to getting serious about this disease. Disability seemed like more than a possibility. A car accident certainly seemed within the realm of possibility too.

I got serious about my salt intake. Turns out there is salt in everything. Eating out isn't possible anymore. I try to keep my sodium intake to be under 1,500 milligrams a day. A quarter pounder from McDonald's has 1,200 milligrams of sodium in it.

Over the last two years of "attacks", I've come to realize they happen towards the end of the day at the end of the week. The attacks seem to be triggered by, what I call, the THREE S's:  Sleep (or lack thereof); Salt (too much); and Stress (too much). If you have Meniere's, you have to get lots of sleep, give up salt and reduce/manage your stress. Yeah, right.

I ordered a half dozen books on Meniere's and did my research. It is a relatively obscure disease and the literature out there tends to be self-published by those of us who have the disease. Around 40,000 people are diagnosed every year in the US with Meniere's. I'm one of the unlucky members of the class of 2015.

After reading the books, I discovered that you need to go a bit farther than just eliminating salt, getting sleep and reducing stress. In order to reduce the number of attacks, you also have to give up CAFFEINE, NICOTINE and ALCOHOL. Nicotine isn't a problem, but giving up coffee? Beer? Wine? Scotch? Is there anything left to live for?

So I got serious in January. A couple of the books suggested that after you get a diagnosis of Meniere's, you should take two years off from work to learn how to manage the disease. Must be Trustfunders, because I need money or I will end up sleeping under a bridge. But I did start to get serious about this illness. There's plenty of incentive. Can you imagine living without music? Hearing birds? Hearing the squabble of children? I'm not interested in becoming deaf.

So I greatly reduced the caffeine and pretty much gave up alcohol. I had a couple beers on my birthday at the Sierra Nevada Brewery and a couple glasses of wine about a month before that---and that's it. Caffeine I have pretty much given up except a latte' as a treat now and then.

As I write this, I haven't had a Meniere's Attack since January 28. That's 57 days. With any luck, I hope I'm on my way to managing this disease. It ain't fun. I'd love to have a potato chip. Just one. I'd love to have French fries with salt on them. But I can't. I like listening to Abbey Road too much to jeopardize that by eating a potato chip.

But oh, to have a glass of Scotch every night before bed in the winter, like I used to. Forced into sobriety, I am. It ain't all that bad. And with any luck, as I learn to manage this illness, I might be able to have a potato chip or a glass of Scotch now and then. I am learning to practice Extreme Moderation.

57 days and counting without a spin. I can't tell you how exciting that is for me.


  1. Hi Allan, best of luck dealing with it. I have a sense of how aggravating it can be--I've always had a milder version, with mental fogginess and temporary hearing issues but no spinning, just a complete loss of balance. Fortunately, it seems to bother me less as I've gotten older, but it was part of the reason I didn't drive in my teens. I was once walking along the side of a road in winter and had to fling myself into the snowbank to avoid walking in front of passing cars. You're absolutely right about the three S's -- I noticed those too along the way.

  2. I have attacks daily, sometimes multiple attacks, that last often times for near 24 hours then another attack again. I do not have any alcohol, caffeine, and low sodium. I am also vegetarian. I have had this disorder for over 15 years and am now totally deaf in both ears. Best of luck to you.

  3. I have had this disorder for over 15 years. My attacks are daily lasting often times near 24 hours then another attack follows. I am deaf in both ears from this disorder. I have limited sodium, no caffeine, and no alcohol. I am also vegetarian. Nothing helps. One can have a short remission, then it can (and often) returns with a vengeance. I am also an RN and had to go on disability.

  4. I was diagnosed with meniers since 2004 after having a series of testing done. vng test, coloric test (cold water inserted into the ear, rotory chair test. I continued to work and didn't tell my employer about it when hired. I was slowly losing my hearing over the last 10 yrs and had to have 2 hearing aids which would be adjusted as I lost my hearing. I had the tenitus also. in 2014 I started having attacks at work. (nursing) in march of 2014 I had 2 attacks at work and was put out of work (short term disability)

    I was again tested but this time my dr sent me to a university hospital that had a balance center that dealt with vestibular nerve damage, menieres, etc after having the testing done again I was informed that I would not be able to continue to drive or work. I was told to file for SSDI since I had worked for the last 37yrs. I was devastated that I was told I could no longer work or drive.
    I filed for social sercurity disability and was awarded with it 98 days from the time I filed to the time the government said yes you are disabled and can not work any more. I am also profound hearing loss. everything sounds like it is muffled like im under water when spoken to.
    My vestibular nerve was serverly damaged and no longer working which would explain why I would lose my balance as I was walking or run into door jams as I turned to walk into a patients room. lol Its been 2 yrs now and im still adjusting to not being able to work anymore since I loved my job. but it is what it is and im not going to die from it. my attacks are similar to yours. I have a 5 minute window when that strange feeling comes over me, I lose all sense of balance and am sweating profusely, and the my world starts to spin I am vomiting and my attacks last between 6-8 hours, I tell myself as im laying in bed vomiting, sweating, spinning that today atleast I get paid to feel so sick. sad but like I said it is what it is.