Vertigo, Redux

I haven’t posted for a while not because I was on a restful summer holiday but because I’ve been experiencing bouts of vertigo and dizziness over the past few weeks. Not only do these sideline me, they also affect my brain.Vertigomovie_restoration

They affect my memory, for starters. As I began to write this post I did a quick Google search and discovered that I wrote the exact column I was thinking of, under exactly the same title (“Deaf and Dizzy”), a year ago. If you want to know more about vertigo, Meniere’s and migraine-associated vertigo (MAV), you should read it. (My diagnosis is MAV.)

Memory loss is just one of the ways vertigo and dizziness mess with your head. During acute attacks, which in my case last for a couple of hours, I have to lie down with my eyes closed. If I open them a crack and see the room still spinning, I shut them again. If I don’t lie down soon enough, I vomit. Even sitting is no remedy. I have to lie prone.

In between acute attacks I’m dizzy. I walk unsteadily and sometime lurch, depending on the intensity of the dizziness. I look like a drunk. It’s not just memory that suffers. The brain seems generally confused. I pour orange juice into my coffee. I try to unlock the front door with my car key. I worry it’s a precursor to dementia but my doctor assures me it’s not.

I can’t detect a trigger for my vertigo, but luckily I recognize the symptoms of onset and can try to get to a safe place before it hits me flat out. For a few hours or even days preceding an attack, the back of my neck aches and the ache gradually spreads upwards. I feel pressure in my left eye. I experience hyperacusis. I may be a little dizzy. I’m tired. But it’s when my eyes swing to the right and the world starts spinning counterclockwise that I know I’m on the edge of vertigo.

Sometimes, the timing is not only inconvenient but dangerous — usually when I’m driving. Before and after a full attack, I can focus on the road ahead and make it to a safe place. Interestingly, focusing on one point is recommended as a way to control vertigo. I couldn’t possibly drive during a full-blown vertigo attack, but experience has shown me that I can get to safety — through what feels like force of will.

Alan Desmond, who writes the blog “Dizziness Depot” on Hearing Health and Technology Matters and is the director of the Vestibular Audiology Program at Wake Forest University, was hit with an episode of vertigo himself recently. He described how he used that focusing technique, training his eyes on a doorknob. I doubt he would ever endorse focusing on the road from behind the wheel of a car as a cure.

I watch my diet. Migraine-associated vertigo, also called vestibular vertigo, is triggered by many delicious foods, among other causes. The Meniere’s Diet is similar. If you look at the list at the banned foods, you may wonder if there is anything you can eat. The Vestibular Disorders Association recommends avoiding red wine, chicken liver, smoked meats, yogurt, chocolate, bananas, citrus fruits, figs, ripened cheeses (for example,  cheddar and Brie) and nuts. All these foods contain the amino acid tyramine. The association also recommends avoiding caffeine and alcohol. Sometimes salt intake is restricted. Aged meats are easy to avoid. Caffeine is not.

Like many with vertigo, I take preventive medication. For me it’s been a small dose of the tricyclic antidepressant amitriptyline, the generic for Elavil. (The dosage is much lower than would be used to treat depression.) That dose clearly had stopped being effective, so now I am taking a larger dose, still well below the antidepressant level. The fact that I’m writing this is an indication that the brain fog is starting to lift. I’m also signed up for vestibular therapy, which is a big commitment of time. But if it works it will be worth it, and I’ll be able to go off the medication.

The biggest mystery to me is that every doctor I have consulted – two neurologists and three balance specialists – says that my vertigo is not related to my hearing loss. I do not have Meniere’s Disease. I have migraine-associated vertigo (MAV) or vestibular vertigo.

MAV is only recently defined and was frequently misdiagnosed as a variant of Meniere’s in the past. The overlap between the two is substantial, and a review study published last year in the journal Behavioral Neurology, comparing the “intimate relationship” between migraine-associated vertigo and Meniere’s, suggests that the underlying causal mechanism may be the same for both conditions. I’ll discuss that study in my next post.

I’d like to know how others handle vertigo. Please comment. We can all learn from each other’s experience.

 

 

Good News! For a change.

Good news for people with hearing loss.

Last week CMS, which runs Medicare and Medicaid, reversed itself on an earlier proposal to eliminate coverage for bone-anchored cochlear implants, like Cochlear’s Baha and Oticon’s Ponto.

This is good news for two reasons.

First, it preserves coverage for an important and expensive technology. People with certain kinds of hearing loss, including that resulting from acoustic neuroma, can’t be treated with hearing aids or conventional cochlear implants. The bone-anchored devices, which have been implanted in 40,000 Americans since they were approved by the FDA and accepted for Medicare reimbursement in January 2006, affect people of all ages. Only 20 percent of these 40,000 procedures was covered by Medicare, according to the Hearing Industries Association. And in fact when CMS made its original proposal to end coverage it noted that it wouldn’t save Medicare a substantial amount of money.

Medicare’s decision not only ensures that these devices will continue to be available on Medicare but also will have a so-called ripple affect. Private insurance companies often follow Medicare’s lead in coverage guidelines.

And these devices are expensive (although not as expensive as conventional cochlear implants, which both Medicare and private insurers generally cover). Cochlear Americas estimated that the national average “bundled” rate (which includes physician and audiologist services), is $9732 if the surgery is done on a hospital outpatient basis.

The second piece of good news is that this was accomplished as a result of a public campaign against the proposed changed. Cochlear Americas got it started but CMS received more than 4,070 comments, and 11,300 signatures on a petition, according to the Acoustic Neuroma Society. The people’s voices were heard!

Let’s all remember that the next time CMS or some other seemingly behemoth government agency proposes to cut back coverage of an essential device or procedure.

An Invisible War Wound

An Invisible War Wound: Out of sight, and mostly out of mind.

When we think about the injuries our servicemen and -women endure, on this Veterans’ Day, we naturally focus on major life-changing injuries like Traumatic Brain Injury and Post-Traumatic Stress Disorder. We worry about suicide in veterans. We see veterans struggling to learn to walk again with prosthetic limbs or learning to hug a child using a prosthetic arm. These are all horrifying consequences of war and no one would minimize them.

But there is a war wound we don’t see, and for the most part don’t think about. Hearing loss and tinnitus are the two largest categories of disability in the military, and have been for some time.

These are not comparable injuries in terms of the scale of destruction, and they are not life-threatening. They are often secondary to TBI or other debilitating injuries. But they’re permanent. And long after a veteran has begun to recover from these other wounds physically and emotionally, he (or she) begins to realize the hearing loss or tinnitus is not going away.

Captain Mark A. Brogan of the United States Army was injured in a suicide bomb attack in 2006. He spent months in a coma at Walter Reade Medical Center. It was not until his traumatic injuries had been treated that he began to think about his hearing loss, and to realize how it and his TBI were entwined.

At a panel discussion with other veterans earlier this year, he talked about the lasting effect of the TBI on his hearing. The part of the brain that controls speech perception was injured in the blast, and combined with the injury to the ear itself made speech very difficult to understand.

Hearing loss and tinnitus also combine negatively with other injuries. Trouble hearing in a noisy place can trigger his PTSD, said Sean Lehman, US Air Force,. The PTSD in turn exacerbates the tinnitus. “It makes my brain get irrational, you know? It makes my PTSD more difficult to deal with.”

Sgt. Lehman sustained third-degree burns over 40% of his body, and his physical injuries obscured the fact that he’d also lost his hearing — for almost two and a half years. “Things I considered unimportant turned out to be important,” he told the audience. It was only when his three-and-a-half year old daughter was impatient with her father’s inability to hear her that he sought help for his hearing loss.

In June Captain Brogan and a panel of other veterans gave a workshop at the annual Hearing Loss Association of America Convention. They are part of a group called Heroes With Hearing Loss, and they’ve banded together not only to raise awareness of hearing loss in veterans but also to give veterans the opportunity to talk about hearing loss to another vet.

“I was 25 years old at the time,” Captain Brogan recalled when he realized the severity of his hearing loss. “I don’t want to wear these [hearing aids], you know. Are you kidding me? You, know, I’m young, freshly out of the military.” The others nodded in agreement. “It was a battle to accept it. Kind of a grieving process. It’s something that visibly says, ‘Hey you’ve got a problem.’”

Sean and the others all talked about the issue of credibility, how important it is for an injured vet to hear from other vets ways to come to terms with it.

Master Sgt., Donald Doherty, a retired Marine and veteran of Vietnam, lost his hearing as a result of gunfire and artillery noise. “Noise is an occupational hazard for warfighters,” he said.

“Marines, and anyone in the armed forces, have been instilled with a sense of pride, the need to act independently, to do it yourself. It’s a sign of weakness if you reach out for help.” But, he added, you begin to realize you do need help. You realize it’s affecting “not only yourself but everyone around you.”

Sgt. Lehman was the first to use the word “credibility” about the trust soldiers put in each other. “Dr. Jones [Amanda E. Jones, Aud-D, CCC-A)] can tell me what works, and I’ll listen. But if Mark tells me, I’ll take his word for it.”

Don Doherty, who is also now on the Board of Trustees of HLAA, points out that “Veterans recognize the noise hazard but make the sacrifice willingly because it’s their duty and mission.” But, he says, “My brothers in arms need to reach out to the VA and get tested. Too many of them don’t.”

Sean Lehman asked Dr. Jones what differences she noticed between “normal” patients and veterans, who, he added – getting laughs from the others on the panel, “we all know are not normal.”

Dr. Jones estimated it took an average of 15 years for a veteran to address the issue of hearing loss. It’s partly a question of dealing with other medical conditions, she said, but it’s also a matter of pride. Eventually, she added, it becomes a matter of acceptance: “I’ve got an issue and I have to do something about it.”

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These invisible injuries take on a larger significance not only because it is difficult for veterans to come to terms with the loss — but also because society is likely to ignore it.

“‘I would love to hire a veteran with a disability; they will get top priority when I hire new associates,” a potential employer might say. Joyce Bender, who runs a search firm that helps place people with disabilities, says that what they really mean is, “Send me a veteran with a visible disability,”

This is not to say that an employer should not go ahead and hire the veteran with the visible disability – it’s good for the soul and it’s good for business. But don’t ignore the vet with a hidden disability: PTSD, mental illness — and yes, hearing loss.

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Both the Hearing Loss Association of America and the Hearing Health Foundation have online resource centers for Veterans.

Heroes for Hearing Loss travels nationwide and can be contacted at HeroesWithHearingLoss.org

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Originally published on November 10, 2014 by Katherine Bouton in What I Hear, Psychology Today.

What’s in a Name?

Ever since I first lost my hearing, 35 years ago, I’ve been frustrated by the fact that no one could figure out what caused it. As the hearing loss progressed to the point where I finally got a cochlear implant in the originally affected ear (the left) and a strong hearing aid for the right, I remained fixated on how such a major medical event could happen with no explanation. The term for that is “idiopathic.”

Webster’s defines the word idiopathic as “arising spontaneously or from an obscure or unknown cause.” It also means “peculiar to the individual.”

I hauled out Volume One of my “shorter” OED (two volumes, 4000 pages, three columns per page) looking for insight into the origin of the word. Not surprisingly, it comes from the words “idio” and “pathic” – “of a disease.” The OED elaborates: “not consequent on or symptomatic of another disease,” and then the kicker: “no known cause.”

So imagine my surprise this afternoon when my ENT of some 25 years casually dropped into a discussion of my hearing that the fluctuations I was experiencing were common with Meniere’s. “Wait,” I said, “Does that mean we are now diagnosing this as Meniere’s?” Believe me, I have asked this question many times and never gotten a firm answer.

You know why? Because Meniere’s itself is idiopathic. In fact it’s also known as “idiopathic endolymphatic hydrops.” This mouthful refers to an imbalance in the fluids in the endolymphatic system, part of the cochlea. The symptoms include fluctuating hearing loss (most often unilateral), fullness in the ears, tinnitus, and dizziness or vertigo. I pointed out that I don’t have two of the symptoms (fullness or tinnitus, and I have bilateral hearing loss). My vertigo, which was intense, was also short lived: I had about 30 episodes over the course of a calendar year. Now it’s controlled by medication.

My doctor explained in what I am sure was very clear language why he was now using the term Meniere’s to describe the cause, but I was too thrilled to finally have a name I could put on my hearing loss to really follow.

So what if Meniere’s itself is idiopathic? (It’s also not treatable, and not even fully diagnosable except during an autopsy.) I have a name for my condition! I can capitalize it. Capital “M” Meniere’s. It has a definition and known symptoms. After 35 years of “we don’t know” this seems like a step toward enlightenment.

The fluctuation that prompted this discussion was, for once, a good one.

In July I’d felt that I was hearing much worse than usual in my hearing aid ear. (The hearing in the cochlear implant ear changes only when the audiologist reprograms the implant.). I went to the audiologist and indeed I had lost about 20 decibels, going from being able to hear at 60 decibels down needing the sound turned up to 80 decibels. That put me in the category of a potential candidate for a second cochlear implant. But my ENT wisely prescribed “watch and wait.”

So six weeks later, today, I went back. My hearing had returned to where it was before the July drop. Not that that level is anything to boast about: I still have moderately severe hearing loss and a moderately terrible ability to recognize words on a word recognition test. But no matter. My fluctuations in the past have almost always been permanently downward. “Up” isn’t something I can recall ever happening.

So maybe that’s another reason I was glad to have a name for my condition, one that starts with a capital letter.