Ménière’s disease /meɪnˈjɛərz/, also called endolymphatic hydrops, is a disorder of the inner ear that can affect hearing and balance to a varying degree. It is characterized by episodes of vertigo, tinnitus, and hearing loss. The hearing loss comes and goes for some time, alternating between ears, then becomes permanent with no return to normal function. It is named after the French physician Prosper Ménière, who, in an article published in 1861, 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 lifelong condition.
I had an idea to do a 24 hour stream at some point during the summer for charity. I wanted to do it for something that most people aren’t aware of, is chronic and doesn’t have a cure. Meniere’s disease fit the bill and it’s something that I suffer from. Unfortunately it looks like there are no legitimate charities, patient support, or research organizations that focus on this disease.
It’s an exclusionary diagnosis. This means that people who are classified under this disease don’t have all the same symptoms, don’t have all the same triggers, and ultimately end up making drastic lifestyle changes to manage symptoms or simply get through the day. I’m lucky that my episode ended on a relatively good note. I deeply wish that there was some way for me to help others who are soldiering on.
Lately on the subreddit there’s not been a lot of chatter but something that’s been getting a lot of activity is a post about physician assisted suicide. Unless you’ve suffered through prolonged bedrest or similar situations you don’t really understand how helpless and useless you feel. Imagine feeling a little dizzy when you go to bed and then the next morning you can’t get up. Can’t see straight. Can’t even move without the world tumbling around you. Puking until there is nothing and then puking more. Learning to eat while lying down because you don’t want to scare your husband by not trying to eat. Feeling like a failure to your child because you miss them walking for the first time and your milk dries up because your body doesn’t have enough fluids anymore. I won’t lie and say I didn’t think about suicide. If my initial episode had gone on for a few more weeks it might have been a viable option for me.
I’ve always been a naturally depressive person and have always had a certain amount of anxiety. I think post-meniere’s it has kicked up to 11. Every outing is a potential trigger. Every time I physically pick up my children it goes through my head as a potential disaster. I wonder now if my Dad had meniere’s (there’s not been a clear link genetically) but I remember him holding on to the walls in the hallway of our home to walk to his bedroom and my mom complaining about the hand prints. I guess I don’t have anyone else to blame for the multitude of hand prints on my walls, I can certainly see the ones that have saved me from falling throughout the day. Of which there are many.
Some other symptoms are ephasia (a loss of words), congnitive issues, and (of course) hearing loss. All of which add to the overall stress and anxiety levels along with an absolute lack of control.
So why the heck isn’t anyone aware of meniere’s or other vestibular diseases? Why isn’t there a meniere’s day? A ribbon color? A charity to rally behind?