Meniere’s Disease – diagnosed yesterday
Update – you can follow more about my experiences with Meniere’s Disease at my Meniere’s diagnosis blog.
Well… after several doctors visits, I have been diagnosed with Meniere’s Disease. Let me back up a bit…. several years ago I started getting a stuffy feeling in my right ear on occasion. I had allergies and it reminded me of an ear infection years ago, but I didn’t have a fever. It would come for a few days and go. Of course, it was always the right ear and I would always have a hard time hearing out of that ear. Occasionally, it would be accompanied by a roaring sound like a fan…. sometimes loud, sometimes soft. Sometimes it would feel like the ear drum was “tight as a drum” as you could actually FEEL sounds as well as hearing them slightly. Eventually I just got used to it coming and going. I’ve chalked it up to allergies…. over the years I’ve been prescribed and taken most every allergy medication I can think of and the next step was allergy shots…. well, it was a nuisance not a MAJOR problem, just a nuisance. Then… I would start feeling dizzy if my ear had been stopped up for 3-5 days running or more. That was still inconvenient, but I knew when to expect it and could manage…. Then the vertigo hit…. April 2006…
I arrived that morning at a clients house and had to explain I was a bit dizzy. (Walking from the car I was obviously a bit “off”…) I think things must have started spinning on the drive up. I got to work removing the pest du jour from his computer and found that moving my head back and forth from looking at the screen to him on my right was making me feel VERY unwell… I started into a cold sweat and felt the feeling of fighting nausea. I asked if I could use his bathroom and had to hold to walls en route as everything was spinning violently…. I fought to keep my head over the toilet as it seemed like it was jumping and moving back and forth. Finally, I managed to regain a bit of composure, wrap up the appointment and make it home. The drive was VERY hard – it was as if I had tunnel vision with the world spinning along the outer rim of the “tunnel”, but fortunately I had a fairly direct route home (not too many turns). I got out of the car in the driveway and fell down. I don’t know how long I laid next to the car, it seemed like ages. Finally I convinced myself I could climb up the side of the car and make my way inside, which I did. I laid across the bed, and called my parents on the cell phone. My Dad offered to take me to the doctor, but I declined for fear of another car ride. Eventually I took sudafed (the only thing that I was taking then that seemed to affect my allergies) and I fell asleep within an hour or so.
Well… I didn’t go to the doctor then. I was tired afterwards, but not spinning and although a bit off balance for a few days, it seemed that I recovered and forgot that had happened. Well…. you NEVER forget when you’ve had vertigo, but it became a distant memory. It made me hit the decongestants harder when my ear stuffed up, but…. the variable ear pressure/stuffiness/tinnitus (roaring) continued and a bit of dizziness now and then. Fast forward to August 30th 2007…. I was driving across town to pickup lunch before heading to piano lessons and everything started spinning. I made it through the drivethrough and to the music school. Staggered up the stairs,ate at my desk and met my first student. About 40 minutes into the lesson (things had been spinning the whole time.) I noticed I couldn’t point at notes without my finger moving in circles… I started breaking into a cold sweat and fighting the nausea. I stopped the lesson and apologized that I wasn’t feeling well. Then fought to stay over a trashcan while calling to cancel the rest of my lessons.
I remember at some point thinking “I have to get out of here, I can’t let anyone find me like this…” and managed to get to urgent care where they diagnosed me with labirynthitis and prescribed meclizine for dizziness and something for nausea. I got a ride home and slept for several hours. The next few days I slept more than anything else. And researched balance disorders. Before long I read about Meniere’s disease, one computer customer had mentioned it to me when I explained the reschudling of her appointment. So, I read about it and read narratives from Meniere’s disease sufferers… I was amazed at the symptom descriptions, they were SO much like what I had experienced, in some cases describing things that I hadn’t been able to describe.
Well, after 2 visits to a GP, 1 to an allergist and several weeks of allergy shots (trying to get that under control.) I’ve now been to an ENT (yesterday) 12/6/07 Who essentially told me that it looks like “classic Meniere’s disease”. I had a bit of an active symptom day ear-wise and had some definite low end loss in the right ear that perfectly matches what they would expect from a patient with Meniere’s. My left ear is fine (in fact she remarked how good the left ear was.) But, now in addition to the allergy shots, zyrtec and nasonex, I have a diuretic and Xanax (for dizziness) and instructions to try to limit salt intake to 2 grams per day. The ENT cited three aggravating factors of stress, sodium retention and allergies as aggravating Meniere’s symptoms.
I’m not surprised, as I’ve suspected this diagnosis for the last 3 months. The forums at www.menieres.org have been very helpful information wise, but there are good medical resources online if you look carefully. (Always have a bit of skepticism when reading medical information online, PLEASE don’t substitute online research for a Doctor’s recommendations.)
Anyway… the last few weeks I’ve been in a post vertigo fatigue/compensation… mid November I had another, this time slight, vertigo event which has left me feeling off-balance (not dizzy – slightly different feeling) and easily tired. For a while, 4 hours of activity and I was done for the day. I’m very sensitive to rides in the car, etc. As I understand, when the balance nerve has damage, the brain may take 2-8 weeks to compensate for the new, different signals it’s getting from the balance nerve (i.e. the brain has to relearn how to balance.) My hope is that I don’t have another “attack” before the brain compensates as I’m starting to feel a bit better, with the exception of 30 minutes-2 hours after car rides (depends on the length of the drive.)
Anyway, that’s in part an explanation of my lighter posting.
It’s also in part an explanation to any computer clients that might wonder why I’m not scheduling as frantic a pace these days.
Also, let me point out a good dvd slide show of Meniere’s inspired photography.
Update – 12/10/07 —
Just thought I’d add a bit more info here….
I’ve found another dvd which covers several balance disorders… it’s highly recommended 2001 National Health and Information Bronze award winner in patient education.
There is another dvd that shows what it’s like to have a Meniere’s attack… this was based on an experiential exhibit.
At the moment, I’ve ordered the last one…. I plan to order the previous two as I receive my payments from lulu.com…. (I have three “niche” interest cd’s at Lulu – including some piano accompaniment for Christmas music… all tracks are also available as digital downloads (mp3 – no restrictions.))
Another good resource on Meniere’s disease is… menieresinfo.com… they try to cover/link all the info/resources.
I’ve added a category for Meniere’s disease if/when I add anything else, for now I may just update this post.
Also… a good book available through VEDA (vestibular disorders association…)
Meniere’s Disease—What You Need to Know, softcover (Not a referral link….)