Hi all,

It has been awhile since I have written here as I was trying to disconnect and enjoy the summer the best I could and try and ignore my idiopathic sfn. My SFN symptoms persist unfortunately. I just got back from the audiologist as several months after my onset in April, I started having persistent tinnitus. The results came back that I have some minor hearing loss which they likened to be consistent with someone who has been exposed to loud noise (construction, military, music) and that is the cause of the tinnitus and I should expect to have the ringing for the rest of my life.
I am not exposed to loud sounds so I suspect this is clearly related to what has been causing my general pn but it is frightening to think that at 39 yrs old this thing is causing permanent damage that is progressing throughout my body. Has anyone else experienced this? Whats next the eyes? I already feel pangs of pain on my tongue and scalp. I am at a loss as to who to turn to. Any ideas? The ENT will point to the neurologist and the neurologist will say they cant find a cause but meanwhile I just live in fear and pain with everyday being an adventure.

Is the rest of your SFN worse or has it stayed the same?
I had terrible tinnitus and fluttering sounds in my ears for a long time. I still have it, but it is much more infrequent, mild and no longer a big problem. I was told the same thing. Go to an ENT. I also had vestibular nerve problems that settled down. I would be sick and dizzy if I went to a loud restaurant.
Sorry I know how crappy it is. I'm glad no one told me to expect to have that for the rest of my life. It was so disturbing. It was worse especially in the morning. Between the pain, numb parts and sounds in my ears that weren't there- I don't know what was worse. Hopefully yours will fade as mine did.

Hi Healthgirl - good to reconnect. My sfn got worse in August when the tinnitus started but I would say that in September things are mildly better. Have been able to do some mild exercise, a little more energy, certainly more mental clarity and I think taking the minocycline has helped in that regard due to its anti-inflammatory effects on the CNS. The pain and paresthesias continue throughout, however, depending on the time of day and what I am doing and the tinnitus hasn't resolved. I was told to get a hearing test and frankly wasn't surprised when they said I had a 10% hearing loss. Have you done one of these? Almost wish I didn't know that because now I am in a panic that whatever is attacking my nerves can do permanent damage to vital sensory organs and now I don't even have a sense if I am getting worse or better. It was creepy sitting in an audiobooth where the ringing was amplified. I will go to an ENT Monday and then I plan to see multiple neurologists to see if I can get any fresh ideas or perspectives and continue to see if the IVIG path is something I need to seek out in earnest.

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.

I get burning and stabbing in my left eye. No doctor was able to explain this. They just write you a script for nerve medication and send you on your way.