Hi Franklin,

Hopefully you get a rotary chair and VNG testing. It's good that you are seeing the ENT soon. The longer you have symptoms, your eyes compensate for them and it becomes harder for the ENT to arrive at a diagnosis.

I had insane tinnitus at the onset of my symptoms. It took several months to get better. It's not perfect, but I'll take better. I did briefly lose normal hearing in my left ear for a few days on this journey. Scary stuff. I'm sorry that your tinnitus is so profound. Over one year after my symptoms started, I had an audiology test. I had no hearing loss per my age category. Have you looked into desensitization techniques?

What didn't get better is my balance disorder. I have left-sided feelings of disequilibrium. I feel like I'm rocking while sitting or sleeping. Sometimes it feels like I'm walking on a trampoline. It's not fun. No bueno. I do get a break from it sometimes, but it visits me almost every day for hours at a time. If I'm at a loud restaurant or a small room, it will set off my balance issue immediately.

The ENT couldn't figure out a darn thing other than my eyes aren't tracking properly. And the ENT dept pretty much pointed the finger at neurology and and shrugged their shoulders. And then I had to write them a pretty large check.

I have SFN symptoms that are deep on the left side of my face and left ear - mouth and scalp too. The wet, hot and warm sensations on various parts of my body and inside of my left ear are grotesque. Who would have thought such a wretched disease existed?

At first I was afraid of all of this, now it just annoys me. The only thing I can't tolerate is the body burning and the deep left sided eye and face pain. So you are not alone with your symptoms or your pain. I'm 39 too.