SayWhatClub

Tag: menieres disease

A Window into Migraine Headache by Wendy Holcombe

Posted on by iseewhatyousay

Editor’s Note:

As defined by Wikipedia:  “Ménière’s disease ( /meɪnˈjɛərz/) is a disorder of the inner ear that can affect hearing and balance to a varying degree. It is characterized by episodes of vertigo and tinnitus and progressive hearing loss, usually in one ear. It is named after the French physician Prosper Ménière.  In an article published in 1861, he first reported that vertigo was caused by inner ear disorders. The condition affects people differently.  It can range in intensity from being a mild annoyance to a “chronic, lifelong disability.”  Recent research confirms an association between Meniere’s disease and migraine headache.

headache guide-1

Ambiguous number scale gave way to creativity

I was diagnosed with Meniere’s about ten years ago. However, I remember having vertigo attacks for at least seven years before that.  There was always a long period between attacks.  In late 2008, I went bilateral.  My hearing has been fluctuating for years, but in the last two years the hearing loss has advanced very rapidly.  Unfortunately so has the vertigo.  I was diagnosed with migraines when I was in my teens.  They have increased in frequency and severity as my Meniere’s advanced.  Because of this, I was often asked about my discomfort level.  I felt there had to be a better way for me to communicate this other than a number scale.

I have always had a problem with the number scale to describe pain.  It seems very subjective, and I have a hard time answering the question, “What is your pain on a scale from 0 – 10 with 0 being no pain, and at 10 you would go to the ER?”  Each time I hear this I think, “How can I know that what I consider a certain number is the same thing the doctor would think?”

I wanted more of a visual imagery.

So, I created a photo scale.  These photos were originally meant to represent my headaches.  But I’ve used it to describe the severity of a Meniere’s attack, hip pain…etc.  The visual reference works.  Even though the photos are obviously representing a headache, it has been useful in allowing me to show how I feel for many medical questions.

Each of my doctors were very happy to have this visual representation of my discomfort levels.  Many asked to keep a copy to share with other patients and doctors.

I finally feel that I don’t have to wonder if my doctor understands my number rating.

Wendy lives in Durham, North Carolina and graduated from Francis Marion University, in Florence, SC with a BA in visual arts.  (specializing in painting and photography)  Artwork helps Wendy to cope with her chronic conditions.  You can read more about how art helps Wendy’s healing proscess at http:createtoheal.blogspot.com  She also blogs about living with chronic illnesses, especially Meniere’s, at http://picnicwithants.wordpress.com.

If you suffer from Meniere’s, consider joining the SayWhatClub’s Meniere’s email list.

Drunken Sailor Syndrome – Living and Working with Vertigo

Posted on by lifewrecked

 

a blurry woodland path illustrates how the world looks during a vertigo attachVertigo, commonly known as “the spins” is a condition where a person loses their sense of balance, so the world seems to spin around them, and “gravity” seems to misbehave. Most people have experienced very temporary vertigo by playing the childhood game of spin-till-you’re-dizzy. Once you stop – that’s the most common feeling of vertigo. In the case of the kid game, it only lasts about a minute at most. When you have one of the many medical conditions that can cause vertigo, it can last for hours, days, weeks, and in some cases even months. In that case, it’s definitely not a game anymore.   Living with vertigo can be challenging.

As it turns out, several conditions related to hearing loss can also induce “attacks” of vertigo. This makes some sense, as the main part of our balance system is located in the inner ear, and hence, things which affect our ears can also affect our balance.

I started having occasional attacks of severe vertigo about 2-1/2 years ago. At the time, I had no idea it was related to my hearing, as I’d been nearly deaf on my right side for most of my life (I’m 48). My first thought was that I’d had food poisoning, the details of why I need not explain beyond saying that protracted vertigo (more than a few minutes) can make a person quite nauseous indeed. After having several attacks over the course of a month, however, I realized that something much more “systemic” was going on, so I made an appointment with my family doctor. He immediately referred me to an ENT, knowing that vertigo is most commonly related to conditions of the ear.

The ENT didn’t waste any time diagnosing me with Meniere’s Syndrome, a condition of unknown origin in which sporadic/gradual hearing loss is accompanied by bouts of vertigo, tinnitus (“ringing”, which I’ve always had in my right) and a feeling of “pressure” in the ear(s).

I’ve characterized my vertigo symptoms as “a dagger held over my head.” Attacks come out of the blue, from nowhere. There’s usually very little warning (though I’m fortunate that I don’t suffer “drop” attacks, as some do – in which the attack is so sudden, the person literally falls over, or “drops”).

Nausea aside (quite debilitating in itself), sometimes when my “moderate” attacks last awhile, and I can “hold my cookies” as they say, my symptom takes the form of the “Drunken Sailor”. I can’t hope to walk a straight line un-aided, and walls become a very important navigation resource (using hands to hold me up). When people ask me about it (say, at work – and they know I have the condition; I’ve made very sure of it), I tell them it looks worse than it is (not lethal), and it feels worse than it looks.

Because I’m often enough in public places when I have an attack, I do wonder sometimes how people are perceiving me in my struggle to stay upright and functional (wish I could “choose” to have all my attacks at home!) Do they actually assume I’m drunk or drugged out (before I had this condition, that would have been my first assumption)? The issue with vertigo is the same one we have as HOH people. It’s the constant need to “explain” to people that we’re not drunk (or “stuck up” in the HOH case), we’re actually suffering from a health condition that we DO NOT WANT TO GIVE IN TO OR GIVE UP OUR MEANINGFUL LIFE FOR! In other words, we want to be normal, and have access to all the things that most people can expect.

Of course, there’s also the tired old saw… “Isn’t there a cure, a drug, an operation?” Yes Virginia, there are drugs (I take them) and operations (you join the ranks of the Deaf, in some cases), but there’s no cure, in the “let’s just fix it and go on with our happy lives” sense.

I consider myself very very fortunate that my vertigo has only occurred in sporadic attacks, and the last “remission” I had actually lasted more than a year (I’ve had a few attacks in recent weeks). I’m personally acquainted with someone who has been hospitalized for months with severe attacks. That person could certainly claim deep knowledge of this subject.

The good news, as shouted above, is that I haven’t, and will not, let my vertigo rule or ruin my life. Sure, I’ve had to make some “concessions” – I gave up driving, lock stock and barrel about a year ago. Know what? My life is better for it. Why? Dozens of reasons. Just yesterday I was presented with a beautiful engraved glass award for being the person who “logged the most public transit miles (3000+) last year” by the corporate sponsored Transportation Management Association in my area (they want to get people out of their cars). That’s just a symbol, but there are other good things too. When you need to rely on friends for rides, you tend to get more friends. Try it! Good friends reciprocate (in other ways), and indeed I do – that’s really all it takes.

So it turns out, Drunken Sailor Syndrome and all, I really AM living and working with vertigo. And living, and working are both very good things indeed.

Please feel free to share your own story in comments if you have one!

Paul S (aka LifeWrecked)