Occipital Neuralgia Online Support Group

Hi Everyone

I have been lurking and posting privately if needed. I still have quite a few health issues that are keeping me down.

But I want to let everyone know what I found out recently. As many of you know my decompression surgeries helped a lot but I was left with severe sound sensitivity. I was told by three eminent doctors that nothing can be done. I could not go out in public without certain pitches of noice making my head pound for hours.

I was seeing a new neurologist for other health issues and she asked about my ON surgery and I mentioned how depressing the sound sensitivity was and how it made life in society hopeless for me.

She told me she felt it was rare to have a sound trigger a migraine but that is what she felt was happening to me. She prescribed MAXALT and we are going to do the 31 botox injections for migraines next month in the hope it will stop the sound sensitivity triggers.

The maxalt worked and I could actually go to lunch without a migraine from the noisy restaurant kitchen. I am so excited that I may be able to venture out again.

Has anyone else suffered from this that started with ON? I actually have taste/smell sensitivity and light sensitivity with ON too but they are getting much better post surgery.

Post edited by: cmiller, at: 02/23/2012 09:47 AM

i noticed a difference w/relpax. Maxalt has helped migraine in the past but i guess didnt notice improvement in sound. I do notice it with relpax let me know how all goes w/upcoming date

Before my surgery, all of my senses were out of whack. Dr. Perry said that the Occipital Nerves go over the area of the brain that handles the senses. I used to smell what I thought was something burning, but there wasn't anything. Food tasted horrible, I also had the light and sound sensitivity. Since my surgery, I no longer have any of the sensitivities, except when I get a headache. Usually the ones bothered are the smell and sound. Maybe your Occipital Nerve in that goes over that area is still being decompressed somewhere?

I agree snelko it could be. The sound thing has been getting so much worse over time. Now it sets off areas like a band around my head and down my face. Because the maxalt is settling it down I am really hoping the botox may help.

I've gotten so bad that I fear crowded public places just because of the sound sensitivity issues. (Last night I had to walk out of a Chipotle because standing in line was too horrible) It's been hard to explain exactly what it is though. The best way I can put is is "sound textures" especially with things that are out of sync. Clapping is the worse followed by loud restaurants that are echo-y. When I'm really hurting I loose the ability to separate a sound floor from a ceiling. Everything is the same loudness from the click of a keyboard to different voices in a room. It's maddening. I used to run sound at church and now I can't even attend a service. I have custom fitted ear plugs but only knock off ~30db. It helps some, but them people look at me funny since the plugs are bright blue. Very awkward. Sometimes I'll just wear headphones with no sound or run something on my ipod as an audio mask to help me when I'm grocery shopping.

Question, does anyone have tinnitus as well? I guess I've had it so long that I actually took the "ringing" as just what silence sounded like. Only in the past year did I realize that wasn't what other people heard.

Scott - I totally "get" what you mean about "sound textures". For me, it's not about always about the volume, it's about the type of sound. Music that I like playing at higher volume is ok, but my blue heeler dog barking near me will cause intense pain at times. Clapping is horrible for me too.

The light sensitivity is making me a bit crazy right now. These darn new "curly-q" light bulbs when used without a shade are as bad a flourescent bulbs for me. I just wanna crawl in a dark box.

Annie

hey v-biker, constant ringing in ears. When I went to ducic and had the surgery I asked him about that if o.n. effects ringing. he said he has had many patients that say that to him and he said it is quite possible. I have to say after the surgery I do get times that I am ringing free... I notice it right away as it is complete silence never had that. Also I have lost a considerable amout of hearing. They fitted me for hearing aids in november I am only 52. I couldn't stand the hissing they tweeked it and they still made me crazy so back to not hearing.

Vbiker I totally understand what you are saying. I find a monotone audio book on my iphone while out helps a little but certain sound pitches are just maddeningly painful. So here we all are with this symptom and no medical information about ON lists this as a symptom. It pisses me off. It's disabling. I can't work if I can't drive if there is a car playing loud music beside me for miles or a semi trailer whos motor has a high pitched noise normal people don't hear.

When I visit hospital waiting rooms and there are a few T.V's around the room they are slightly off sync and I can barely think its like I am in an airplane hangar with the engines roaring and then the keyboards clicking, telephones ringing, printers pinging, and a half dozen interviews going on at once... I am screaming inside because of the pain. Then there is the building noise itself and the hospital machines with the high pitches normal people don't hear... mri machines etc cause vibrations of noise throughout. It's hell.

And you just have to look normal but you can't...you look like you are on drugs because you can't sit still you fidget and your face is constantly changing from the pain of the nerves spasming.

I also get pulsatile tinnitus when its at it's worst... usually its just when I put my ear to the pillow I hear the heartbeat but when I have situations like the hospital waiting room, I get it and its like my whole head is pulsing with my heart.

It sucks to be us

Chloe

Hey Chloe! I've not been on in a very long time again.. Did your less occ nerves get decompressed? cuz I think the lessers have something to do with the ears. I have lesser problems and ear issues too - the pulsitile tinnitus is one and it also sets off TN in me too. I know my lessers are involved also and they are many times worse than the greater for me. Have you discussed the lessers with Bray?

Sending hugs!

Trixi