I have been dealing with TN II symptoms since 12/2011. I always felt a bit nuts when I would tell my family to quit YELLING or turn down this or that. I went to the ENT early in and he was like your dx has NOTHING to do with your ear sensitivity…etc. So 4 primary care drs, 2 neurologists, one ENT, infectious disease, a chiropractor, and pain clinic doc could not verify that YES this was real pain until YESTERDAY when I met with. Neurosurgeon who dx the GENICULATE NEURALGIA!!! He has ordered a MRI/MRA (finally) to look a the vessels etc. I was sooooo relieved I cannot tell you. I had JUST joined this group and after reading the posts knew I had found the right place…
Your sensitivity to sound seems a bit unusual among the reports I've read of Geniculate Neuralgia. Before you have the MRI/MRA done, it may be well to confirm that the machine and magnet weightings meet the standard practice for trigeminal neuralgia: MRI should have resolution finer than 1 millimeter, and be conducted both with and without contrast agent. Be aware also that even the best MRI may not be positive for a vascular compression. That doesn't mean you don't have one. At least ten to 15% of all patients who go through an MVD operation are found to have compressions even though MRI didn't show them. This is more common with Type I than Type 2 TN.
Do you have pain or does everything sound loud? Or both? The everything sounding loud is hyperacusis-which I have. I have also experienced the excruciating pain in my ear that I had no idea what that was until after it went away. Which people are telling me is geniculate neuralgia. I have fullness in my ears too and I can't lay flat very uncomfortable-my ears seem to get clogged if I lay back-not sure what that is...going to a neuro otologist later this month. UGH!! All too much to handle. Let me know what you r feeling.
@Red after describing s/s to the neurosurgeon that was his dx???? I do have the sensitivity AND pain described in the Geniculate Neuralgia symptoms that I have read....I will keep your information in mind before my test and appreciate ALL that you do for this site. :o)
@Marla...I know what you mean...about the fullness...not all the time for me but I have been to my PCP multiple times for an ear infection that never was...I'm glad your getting help! Keeping you in my prayers!
Judi do where did u find the sound sensitivity part in geniculate neuralgia. I'd like to read that. It seems that my sound sensitivity is a little different than the people on here that say they have it. I know I have hyperacusis-it's really bad-the sensitivity. Did you look up hyperacusis? You might want to do that to see if it fits your symptoms.
I have the intermittent fullness and pressure feeling with mine. As well as sharp pains deep in and forward of ear. I am also in process of figuring out if I have both TN and GN. My nerosurgeon said that is it possible for the symptoms to be TN, but it could also be GN. We will be doing process of elimination by doing a nerve block on V2 where my worst pain is and see what I am left with. He found vascular decompressoion in my MRI of TN.
Therese
judi said:
@Red after describing s/s to the neurosurgeon that was his dx???? I do have the sensitivity AND pain described in the Geniculate Neuralgia symptoms that I have read....I will keep your information in mind before my test and appreciate ALL that you do for this site. :o)
@Marla...I know what you mean...about the fullness...not all the time for me but I have been to my PCP multiple times for an ear infection that never was...I'm glad your getting help! Keeping you in my prayers!
Judi, I was continually having mail where members were telling me about their ear pain. I have this too and I also have an official Dx of GN. I started this group when I could see a common thread, in the hope it would help afew members. I had NO IDEA that there were so many sufferers here, no way! And yes,doesn’t it make a difference when we know we are not alone and there are fellow souls who “get” us
Was anyone told they had hyperacusis?? I am really confused right now...do I have hyperacusis as far as sound sensitivity or is this part of the geniculate neuralgia I once experienced or am experiencing now. Feeling frustrated and upset!!!
I did a bit of reading on hyperacusis (example: http://en.wikipedia.org/wiki/Hyperacusis). From what I can see in a short probe, it would seem that the disorder is sometimes an outgrowth of damage to the inner ear. It can occur following a case of Bells Palsy or incidental to TMJ Disorder. There's no clear record of association with TN as such, so I'd have to suggest that acute sensitivity to sound or inability to interpret sounds in some frequency bands is probably a second discrete disorder. Pain in the ear can be either hyperacusis or geniculate neuralgia, or possibly ear infection of another sort.
It seems from what I heard people say that their sound sensitivity triggers pain-mine does not. It's always sensitive and doesn't trigger pain. It's all just so stressful to me.
@Red I also read that it can be due to damage to the nerve… My dx is post herpatic neuralgia so I wondered if that fit the bill.
My sound sensitivity seems to come and go and it’s the strangest thing. I can drive down the road listening to the radio and it’s fine but if my mom speaks to me in the car it seems as if she is YELLING!!!
@Therese wishing you the best with your nerve block let me know how it goes… So strange how much of the “treatment” for this is by process of elimination …sending you good thoughts
With post herpetic neuralgia, long term nerve damage is certainly a possibility. And the sound responses you describe certainly seem to fit the descriptions one sees for hyperacusis as a disorder. If you still have PHN pain, then getting the herpes virus back into remission needs to be priority one. If that's accomplished, you may have a better chance of remission in the hyperacusis as well. The treatments I see most often discussed as effective for PHN pain would be timely short term medication with an anti-viral med plus longer term (weeks to months) use of Neurontin.
I used to be just sensitive to loud noise and my neurologist said it was from a combination of TN and anxiety. Now with the addition of the ear pain I have both sensitivity and ear pain..but sometimes the sensitivity will cause face pain.
