Meniere’s and Tinnitus: a personal history


I was 14 years old and bored out of my mind that summer, so I enrolled in a summer school typing class.  It was during that class that I had my first Meniere’s attack. I felt light-headed and then nauseated; my balance was so bad I could not get from the typing desk to the door. After Mom got me I spent the next 24 hours clinging to the sides of the bed as the room spun around me, vomiting and sweating like I had the flu.

Only it wasn’t the flu. I ended up sick day after day, sometimes getting a day off, most times being sick part of each day. I was too sick to do my chores, ride horses, or much of anything else. I couldn’t walk, read, watch TV or turn my head without feeling as if I would be flung off into outer space. The low-level tinnitus I’d had all my life was raging. My hearing, never great, was in free fall and when I could hear my ears rang with sounds no one else could hear.

No one knew what was wrong. Doctors poked and prodded, drew blood, even hospitalized me for tests, including an EEG and a spinal tap. Then, when I was 16, a doctor got the bright idea to do the ice water in the ear test and as I spun out of control (and vomited) they congratulated themselves for finding out I had an inner ear problem.  I was sick for days after that test.  Oddly enough, no one ever tested my hearing.

Walking was my new final frontier. Walking a straight line was next to impossible and to this day I tend to veer to the right and bump people walking next to me. I learned how to focus on one spot like a dancer focusing on a spot on the wall. In time, I developed some control. I learned I had an “aura” and could identify when an attack was coming. I could drive because I had enough advance warning that I could pull off the side of the road and let the waves of dizziness and nausea pass.  I started focusing on reading – one letter at a time.

Once, in a bookstore I was surprised by an attack that hit so hard and fast I would have fallen down if not for grabbing onto a pole.  Those are called “drop attacks” and signal the later stages of the disease, although I didn’t know it at the time.  I lived on Dramamine. Salt restriction, mega-vitamin therapy, you name it – nothing helped.

My hearing, absent on the left side for as long as I could remember, went into a sharp decline on the right.  My ears felt full almost all the time. However, I never had ear infections until I was an adult and those infections were caused by an allergy to the plastic in my hearing aid.  Go figure.

In my late teens I developed severe headaches diagnosed as “cluster headaches.”  They often struck in the middle of the night with such ferocity that I literally fell out of bed and ended up at the hospital. I now see Migraines and Meniere’s tend to go together, so that those headaches may have been Meniere’s generated – or just an unlucky coincdence.  Between the headaches, the light-headedness and the dizzy spells I’m amazed I functioned at all.

I was 25-years-old when the Meniere’s finally burned out and the cluster headaches burned out with them. I’m still headache prone, but I no longer want to cut my head off to stop the pain. The dizzy spells are gone, but I still feel light-headed at times. I can’t abide rocking chairs or office chairs that tilt back. The tinnitus comes and goes.  Sometimes it is a low-level noise that goes on for days; sometimes it vanishes for a time and then comes back with a vengeance.

Wearing my hearing aid can exacerbate the tinnitus.  Or it can cover the tinnitus with other sound.  There is no rhyme or reason to these almost ultrasonic or subsonic noises in my head.

Loud, abrupt sounds are like getting hit on the head with a two by four. No matter how good my hearing aid is at cutting off abrupt noises, there’s a bit of a sound wave that gets through before the override kicks in, and for that one millisecond it is like I’ve had my brain stuck in a socket.  That’s all it takes to leave me reeling, light-headed, and disoriented.

It seems that there are so many more diagnostic tests these days than in the late 50’s and early 60’s, but the reality is that I don’t see much more than can be done to help people with Meniere’s or Tinnitus.  They are what they are.  All one can do is buckle down, endure, and hope for the best.

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6 comments

  1. Wow, does your story bring back memories and not very pleasant ones at that! I can also remember my first Meniere’s attack. I finally had a doctor, no not an ENT, tell me that my Meniere’s was likely caused by the fluid imbalance in my ears and too cut back severely on salt and caffeine. That did the trick for me. I have not had an attack for almost twenty years now.

    I have been profoundly deaf for more than twenty-five years so the tinnitus is the only sounds I hear now but since they are constant my brain usually locks them out. Thanks for sharing. It is always nice to know that we are not the only ones who go through these types of things.

    1. Hi RJ,
      Thanks for stopping by and commenting. It took the doctors two years to figure out I had Meniere’s. They took me off all salt (to no avail), I was a kid so caffeine was not a part of my diet. They put me on megavitamin therapy and god knows what else. Nothing helped until it burned itself out when I was in my mid-20’s. I can still get light headed, but nothing more.

      Sometimes the tinnitus goes unnoticed too. And then at other times it becomes very intense and covers other sounds I need to hear. I notice it when I am in very quiet environments, as in when I have my hearing aid out and I am walking the dog. Then I realize there is a low level whine all the time. That is easier to deal with than the loud squeals of various levels that sometimes accost me like a sound mugger. 🙂

  2. Even though my Meniere was not as long and didn’t repeat itself as many times, I’m still terrified of it, and fearful of losing more of my hearing. I was sad to read that yours started when you were 14 years old! Bad!

    1. I was 16 when it was finally diagnosed. My doctor said that, as far as he knew, I was the youngest person in the US to develop it. One does not desire to be that part of medical history. 😛 It is pretty much burned out now, with only residual issues such as balance issues and declining hearing. I’m glad yours was not as severe! I have been advised that it is possible for a repeat during old age, which I hope is not the case.

  3. This posting was the first thing I read that describes the horribleness of an attack — a friend of mine tried to explain to me how it hit her – but somehow it needed this posting to ‘click’.

    Perhaps part of the trouble for people who don’t experience it is that ,if you look it up on the internet, you get something like …

    People who have vertigo feel as though they are spinning or moving, or that the world is spinning around them. Severe nausea, vomiting, and sweating often occur.Symptoms get worse with sudden movement. Often, the person will need to lie down.The dizziness and feeling of being off-balance will last from about 20 minutes to a few hours. “

    1. Thanks for stopping by and commenting, Listener’s Manifesto. I agree, it isn’t easy to understand how overwhelming a Meniere’s attack can be from clinical definitions like the ones you posted. It can be totally devastating – making it impossible to live a normal life, let alone work. Glad the description “clicked” for you. ~ Marsha

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