I have apparently had vestibular problems all of my life. I remember as a five year old getting sick from riding in a moving vehicle or on rides at the state fair. Strangely enough, I tolerate motion fairly well now.
In 1995, I suddenly lost 40% of the hearing in my left ear and 100% of the comprehension. I also have this maddening tinnitus 24/7. The ENT could not figure out what was wrong with me. The only factual thing I got out of him was that hearing aids would not work for me. He was right.
Over the past three years, I get dizzy for no apparent reason. I went to my PCP, my Cardiologist, a Neurologist and finally last year an ENT. No one had any clue as to what was causing my dizziness, except for the ENT. She ran three hours of tests on me and ended up with the Vestibular Migraine diagnosis.
My Neurologist sent me to therapy, which I thought was a joke. How could training myself to stand on one leg for as long as I could help me? I quit the therapy.
The neurologist started me on gabapentin and within two weeks I was saying the craziest stuff and I was mad at everyone, I mean even my pastor. I told the neurologist that gabapentin wasn’t working and in fact was causing problems. He then put me on Topamax.
With Topamax I had the worst case of Gurd that I could imagine. I was eating white bread and drinking water because anything else triggered the Gurd. So I quit the Topamax.
Now I’m on pregabalin (Lyrica) and Nortriptyline. But I’m taking them for sciatica, not VM. I would say that my attacks have gotten worse and more severe since taking them. But, my leg doesn’t hurt. I had the leg pain for five years until I found a neurologist that would send me to pain management.
I’m home from work today because of a severe attack. I have fallen a few times for no reason. My neurologist says it’s the neuropathy and the VM working together to make me unsteady and prone to falling. My employer is concerned about me. He sent me home yesterday and wanted me to let someone else drive. He has me working two days a week and taking the emergency calls after hours. We don’t have a lot of those. Even with my abbreviated work, he has taken all of my responsibilities away and given them to someone else. Yet he still pays me as if I was working a full 40 hours. I will retire soon. I’m 69 years old and sometimes I feel every year.
My journey has been way to long to me, but I realize mine is short compared to others. But I remember reading somewhere on this forum that everyone’s case is different.