[Healthgirl]

The SFN is big time in my ears now. My whole ears hurt inside and out and more pain has settled in my jawline, under ears, and gland area. I had a terrible case of vertigo and nausea for a few hours a while back and from then on the ears are worse. My neuro wants me to see an ENT to get my hearing checked. I have an appointment tomorrow.

Its kind of funny. What is the point anyway? All they can maybe do is tell me that whatever this is now has launched an attack on my ears. They haven't been able to stop it or help with it as it hit my neck, shoulders, back, legs, feet, arms, hands, abdomen, hips, knees......they can just tell me polyneuropathy and throw their hands up. It's upsetting to be sent for more bad news with no solution.

[canagirl]

It's hit my ears too. I have it just in front of ear and a bit down then spreads toward nose, mouth. My lips and Even first part of my tongue burns and tingles. I know the feeling if what's the point in wasting my time to go see a dr cus there's nothing thèy can do. It's frustrating. It seems like urs is progressing quickly like mine.

[madisongrrl]

Originally Posted by Healthgirl

The SFN is big time in my ears now. My whole ears hurt inside and out and more pain has settled in my jawline, under ears, and gland area. I had a terrible case of vertigo and nausea for a few hours a while back and from then on the ears are worse. My neuro wants me to see an ENT to get my hearing checked. I have an appointment tomorrow.

My ears don't burn, but I have wet/warm sensations in my left. Everything rocks and floats when I walk and even sometimes when I sit. My left ear was ringing for months after this came on. My hearing also went haywire for a few days last summer. I had hyperacusis and heard sounds in a higher pitch in my left ear. It was scary. My primary at the time would not make a referral because they thought I had nothing else better to do than make up symptoms. Awesome. I finally saw a neurologist several months later and she tested my eye tracking, found the issue, and made the referral to the ENT immediately. I also have pain on the left side of my face - cheek, around my eye, behind my eye and my eyes burns too. So we definitely have some symptom overlap.

I went through all the ENT work-up and it was pretty disappointing - hearing test, rotary chair, and VNG testing. The problem was I got tested a year after having this issue. Your eyes make compensations that make it more difficult for them to diagnose the problem. I was eventually diagnosed with a central vestibular disorder. I don't think this is correct...I think it's in my peripheral. The testing isn't really that precise in my opinion. The ENT's solution to the problem is usually vestibular rehab and maybe some type of drug. If your issues are autonomic and/or sfn related, then it's going to be really hard to stop that vertigo...and you really have to get to the root cause. Ugh. This is why I'm going to skip the vestibular rehab because it probably not going to help in my case.

It's tough because the Neuro points to the ENT and the ENT points to the Neuro. I'm sorry you are dealing with this and I completely understand how frustrating it is.

[bluesfan]

Share your frustration . . .
The ears (or specifically my left ear) was one of the first areas to have problems. The first symptom was numbness around the ear (5 yrs ago) - it felt like I'd had a dental injection in the side of my face. It began while I was in hospital being diagnosed for Addison's Disease (I was in crisis at the time). I also had pain deep inside the ear at the time and I estimate I lost about 20% of hearing in that ear for several months - it eventually came right. Had vertigo a couple of times but not sure if it's connected to PN or other stuff that was going on at the time (the hospital trip above and another post appendectomy)

I had all the tests, hearing, ENT, CT etc. Nothing found except that I now had extra sensitivity to loud noise. (You can spot me at the gym - I'm the one wearing earplugs lol). The numbness continued on and off - sometimes going for months - sometimes only being there for a few days. A couple of months ago it returned with a vengence and with the pain inside. This coincided with a marked increase in my other PN symptoms and a few new ones thrown in.
I've had the hearing nurse check it - no infection, blockages, or wax but don't figure it's worth going through all the other tests again to get the same answer - nothing. Instead I'm focusing on getting an overall diagnosis (PN) and including it with that. As it has receded in the past I'm hoping once whatever is going wrong now finally gets diagnosed and treated then it may improve again.

[Enna70]

Sending you my support and understanding....I have it in my ear...outside of my ear and it runs to my jaw, down my neck and into my plexis something...but the ear thing is so bad the other day.... I had a zit developing and I thought my whole side of the face was about to fall off....
Keep up the fight my friends.....

[Healthgirl]

Originally Posted by madisongrrl

My ears don't burn, but I have wet/warm sensations in my left. Everything rocks and floats when I walk and even sometimes when I sit. My left ear was ringing for months after this came on. My hearing also went haywire for a few days last summer. I had hyperacusis and heard sounds in a higher pitch in my left ear. It was scary. My primary at the time would not make a referral because they thought I had nothing else better to do than make up symptoms. Awesome. I finally saw a neurologist several months later and she tested my eye tracking, found the issue, and made the referral to the ENT immediately. I also have pain on the left side of my face - cheek, around my eye, behind my eye and my eyes burns too. So we definitely have some symptom overlap.

I went through all the ENT work-up and it was pretty disappointing - hearing test, rotary chair, and VNG testing. The problem was I got tested a year after having this issue. Your eyes make compensations that make it more difficult for them to diagnose the problem. I was eventually diagnosed with a central vestibular disorder. I don't think this is correct...I think it's in my peripheral. The testing isn't really that precise in my opinion. The ENT's solution to the problem is usually vestibular rehab and maybe some type of drug. If your issues are autonomic and/or sfn related, then it's going to be really hard to stop that vertigo...and you really have to get to the root cause. Ugh. This is why I'm going to skip the vestibular rehab because it probably not going to help in my case.

It's tough because the Neuro points to the ENT and the ENT points to the Neuro. I'm sorry you are dealing with this and I completely understand how frustrating it is.

Yes there is not point to rehab for this I don't think. Its autonomic and small fiber. Ill update after I see the doc maybe even just for some laughs.

[janieg]

One of my major complaints since my acute onset in Nov. of 2013 is an uncomfortable sensation I get in my right temple. When it's bad, it will track down my cheekbone under my eye. It feels like a running electrical current. I know the source of this is my neck as I can turn my neck and make it stop. I also one time cracked my neck and got a searing pain that followed that exact same path under my eye.

I can only guess that my SFN is opportunistic and magnifies any underlying nerve-related issues.

Let us know how the doc visit goes.