Diagnosed, April 3, 2020 but this has been going on for at least a year and progressively got worse. It all started out simple enough and I thought it was just due to me getting older, not hearing well and loud noises being bothersome. As time went on my hearing loss got worse, vertigo set in and those loud noises started to do more than just annoy me. I was first diagnosed with BPPV (Benign paroxysmal positional vertigo), put on medication to help me control it. Hearing kept diminishing and all my hearing tests showed rapid hearing loss, my audiologist said that she had never seen anything like it. She ordered a VNG (videonystagmography) to be done, this showed that I lost 31% of my vestibular system. My ENT referred me to a different ENT and I was diagnosed with Meniere's Disease.
Treatments? Right now I'm on a powerful diuretic and other options are either steroid injection in the inner ear or surgery to remove the vestibule which will cut off the communication between the inner ear and the brain. Basically surgery will make me deaf and sometimes I think that just might be the way I'll end up going anyway. Why? Because living with this is already difficult, noises are painful. The air conditioner running is bothersome, listening to tv is difficult or turning the light on in my bathroom which also turns on the fan is painful. My ears feel constantly full, constant tinnitus and dizziness and my medications don't always work so I am either stuck dealing with it or I just sleep. I also get headaches, more than I used to and I get severe ones sometimes upon waking up.
I think one of the worst things about this disease is not knowing when I will have a severe attack and because I have had one attack at the grocery store it scares me to go out. I have also lost the freedom to drive because of the fact that I never know when I'll have an attack, I could never forgive myself if I were to hurt anyone. So when people talk about their "Freedoms" are being taken away from them because they have to wear a mask, I do not feel sorry for them because they really do not know what it means to lose their freedom.
This is a rare autoimmune disorder, one that will never be cured and one that will only get worse like my other autoimmune disorders. How do I feel about this? My emotions are all over the place and anxiety and depression is at an all time high. Just when I think I have excepted my fate and try to organize and figure things out to get through it all I crash. I start asking myself "Why did this have to happen to me"? "What did I do to deserve all this"? Sometimes I think about ending my suffering as well as ending the burden I have become/will become to my family. I cry a lot, I'm all alone and just want someone too hold me and be their for me. I don't have that and I probably never will.
Cognitive issues are another symptom, not really sure if it's all because of the Meniere's or if it's a combination of all of my illnesses but I feel like I'm losing my mind. To a degree I am and that is so scary. I don't have the occasion forgetfulness like misplacing my keys or forgetting what you went into the other room for. I have moments when I can't put together a sentence without sounding like a kindergartner. Totally drawing a blank or unable to find my words and because of my Glaucoma and the fact that your eyes and ears go hand in hand I have issues finding things that are right in front of my face. It's not that I can't see per say but my brain is not making a connection.
I have to undergo a cognitive evaluation and working on getting tested for MS (Multiple Sclerosis) as well. If you are interested in more information on Meniere's Disease or any other vestibular disorders go to: Vestibular Disorders You are more than welcome to reach out to me anytime as well, just click on one of my Social Media Links.
