question

[SkullChick]

hi
I know I havent been around here forever lol.
well I'm starting to experiencing few dissapointment and wondering if anyone out there is having same problem as mine.
The problem is I'm starting to experiencing sharp almost stabbing pain if I was listening to loud sound for long time or if I'm listening to certain type of song usually heavy metal like Rob Zombie some sound they made it hurt inside of my head, and I cant hear fire alarm and emergency siren AGAIN! It doesnt makes senses it was same program I had when I could hear them (its same program for like 2 months now though) and I notice if I'm wearing CI on normal volume even though it hurt all day and later in evening it sound so quiet but I still hear stuff but have this strange sensation of it being quiet, umm hard to describe, and then when i took CI off I get that pain and sometimes it spread to almost half of my head always on implanted side it become like headache type pain instead of sharp stabbing pain, whats going on?
also im noticing that I couldnt understand speech as much as I did before and I feel like I'm stuck and cant improve more on speech comprehending its frustrating, I just dont have time for audio rehab I havent listen to any for 3 months now I'm so busy with my new house we just purchased 3 weeks ago and we also have a dog we adopted from aspca month ago she keep me busy, so I'm noticing that I'm wearing CI less and less after while from pain and frustration of not understanding much anymore

 

[lovezebras]

new map?

 

[Cloggy]

hi
I know I havent been around here forever lol.
well I'm starting to experiencing few dissapointment and wondering if anyone out there is having same problem as mine.
The problem is I'm starting to experiencing sharp almost stabbing pain if I was listening to loud sound for long time or if I'm listening to certain type of song usually heavy metal like Rob Zombie some sound they made it hurt inside of my head,:.........

I have that when listening to that stuff, and I am hearing....

but seriously,
Make sure you have no infection.
But it sounds as if the nerves might be overstimulated. For the nerves, listening to heavy-metal, going from light stimulation by hair cells (HA's) to being stimulated directly by electrodes, could be too much of a good thing.
But then again... I'm far from an expert on this. Best to get some medical advice.

Just got a picture of eating lots of cold ice cream too quickly... Sharp pain in the neck!!

 

[Boult]

Time for new map, skullchick tell your audie what you told us..

 

[PowerON]

Objection!

remove CI for a while and rest. Let your head heal....

hmm.. see doctor, if you're still on cover.

 

[neecy]

I think a new map too - one of the electrodes could be overstimulating something. Talk to your Dr and your Audie.

 

[SCBassist]

Do you feel "pressure" points within your cochlea-nerve structures everytime you hear a certain sound? That would indicate overstimulation. It's happened to me during the period of trying to find the perfect map, but I never experienced the headaches you described. See if you can get an opinion from your ENT who performed the surgery.

 

[R2D2]

Hi Skullchick,

I had the same problem with the pain too on my first CI ear. You need to go to your audiologist to get remapped. My audie fixed the problem for me by shutting off a couple of the electrodes where the pain was occurring. It seems that I have a sensitive spot on my hearing nerve. This might be the case for you too.

I didn't have the problem to begin with, but it only became more apparent when I reached certain volume levels with those particular electrodes.

The good thing is that if your audie switches off a few electrodes, you won't notice any difference in the sounds. The remaining electrodes somehow interact to compensate for the loss of those electrodes.

My second implanted ear doesn't seem to have any sensitive spots on it at all.

So get thee hence to your audiologist. It is not surprising you are not wanting to wear your CI with the pain

 

[LadySekhmet]

I've broken it down to parts, and see if my advice is any help!

The problem is I'm starting to experiencing sharp almost stabbing pain if I was listening to loud sound for long time

First, I think the same as above posters, that certain electrodes are being overstimulated, get those turn off. If it's PHYSICALLY hurt - then I don't know what it is, talk to your audiologist/doctor...over stimulation or electrode stuff. If it's AUDITORY pain - it's over stimulation, especially with loud music.

or if I'm listening to certain type of song usually heavy metal like Rob Zombie some sound they made it hurt inside of my head,

You may want to STOP listening to heavy metal music like that. I personally found it very difficult to listen to hard rock at this stage because I'm still letting my brain learn to break things down, and certain sounds of hard rock does sound harsh and it does hurt. Heavy metal may be just a tad bit too much for your cochlear to handle at the moment. My suggestion to you is to stop listening to that, and instead listen to ballads, classic music if you cannot live without some type of music. Over time, your ears would ask for "more power", and that's when you will know it's ready for heavy metal. Does that make any sense?

and I cant hear fire alarm and emergency siren AGAIN! It doesnt makes senses it was same program I had when I could hear them

Again, this shows that you need a new map, and increasing your DR. When I was activated, I was able to hear the SHH sound very clearly, now it's quiet. The microwave beeping was quite loud to me, now it's quiet. It tells me that my brain/ears is ready for higher DR. You can have same DR, but increase in volume. Or, just have higher DR. So, yes you need a new map.

and I notice if I'm wearing CI on normal volume even though it hurt all day and later in evening it sound so quiet but I still hear stuff but have this strange sensation of it being quiet, umm hard to describe, and then when i took CI off I get that pain and sometimes it spread to almost half of my head always on implanted side it become like headache type pain instead of sharp stabbing pain, whats going on?

I believe you're suffering from Auditory headaches. (I don't even know if it's a correct medical terminology, but that's what I call it). Your ears are getting overloaded with sounds through out the day, and tries to "filter" out sounds...so the ears in a sense tries to keep things quiet over time (which in our case, it's at night time), and your ears are basically saying, "I am hurt. I am going to keep things quiet". When the CI is off, or HA is off (in my case), the ears feel relieved, but you get a "headache". So, yeah, I used to get that all the time, it would especially get worse when I listen to way too much music, too loud, exposure to loud noises, blah blah. SO, i've learned that if I've experienced that through the day, I make sure that I just turn off everything at night time and allow my "ears" to rest. I found ice pack on the achy side work wonders. I only had it ONCE with the CI...and that was just a little after I was activated. Haven't had a problem since, especially now I have much more volume control, and I have "quiet" program with DR of 25. My everyday DR is 32 or 42(music or certain situations).

also im noticing that I couldnt understand speech as much as I did before and I feel like I'm stuck and cant improve more on speech comprehending its frustrating, I just dont have time for audio rehab I havent listen to any for 3 months now I'm so busy with my new house we just purchased 3 weeks ago and we also have a dog we adopted from aspca month ago she keep me busy, so I'm noticing that I'm wearing CI less and less after while from pain and frustration of not understanding much anymore

Well, you just said it yourself - lack of training will set you back a little bit. I'm in process of moving to Las Vegas, buying a house, and preparing a move (from NJ!). I just listen to audiobooks and having conversations with my fiance helps, plus, I find what helps, is listening to the TV - use the TV audio jack...I love it!! I don't know what you do on a daily basis, but try to spend at least half hour to an hour watching TV with the TV jack, and watch the captioning, or watch your favorite movie/show that you pretty much know the script, and see if you can pick up words without looking at the captioning. It is a start....Over time, once you try to settle in the new house and stuff, you should be able to find more time to go through training. It's only been 4 months since activation...it takes about 6 to 8 months to really have a lot more comprehension, and maybe a year or so to really have a LARGE difference in sentence discrimination.

Also - if you really are concerned about all this, talk to your audiologist. We all are not experts, but do give advice when we can from our experiences. You need to make sure that it's not anything medically wrong, then you just go on ahead and decide what's really the issue is, and talk to the audi to figure out exactly how to "fix" your issues.


This is probably my longest post!!! I just would hate to see you kind of give up.

 

[rick48]

Agree with the others, appears to be a map issue.
Good luck,
Rick

 

[deafmama78]

Just like as the others said, sounds like you need a new map session with your audi. Tell your audi everything you told us here! S/he will be able to help fix that! And I'd probably hold off on listening to heavy metal for a bit til you've seen your audi and got your new map. Good luck!

 

[Hear Again]

At the risk of sounding redundant, I agree with the others that a new map is in order. Let us know how the new map works out for you.

 

[vallee]

I agree a new map is in order. I also suggest you really focus on sound and make a list of what you are missing. It allows the audie to know what frequencies you need adjusted. For example, I was leaving off the th, sh, s off ending of words. She she adjusted it that area. It really helps.

 

[SkullChick]

Hi Skullchick,

I had the same problem with the pain too on my first CI ear. You need to go to your audiologist to get remapped. My audie fixed the problem for me by shutting off a couple of the electrodes where the pain was occurring. It seems that I have a sensitive spot on my hearing nerve. This might be the case for you too.

I didn't have the problem to begin with, but it only became more apparent when I reached certain volume levels with those particular electrodes.

The good thing is that if your audie switches off a few electrodes, you won't notice any difference in the sounds. The remaining electrodes somehow interact to compensate for the loss of those electrodes.

My audi did try to see which electrode that's hurting me and she only turned off number 8 electrode cuz I hate the way it sound and feeling but it didn't hurt and one time she tried to turn it up and it hurt so she try to find which one again by increasinf volume on 1 electrode at a time and there was a few at the end (22, 21, 20, etc at the end of electrode) if it get too high it get uncomfortable and few in high freq too and audi told me it lowered by itself as my cochlea settle down with map so I'm sure something went wrong while its settling down I did ask audi about this but no response yet. I'm thinking maybe you guys are right about needing new map because I didn't have this problem before.
But one thing I did notice is one of electrode green dot was so much higher than all other when all other map it was lower than rest it doesn't makes sense maybe that's the one that's bothering me? We'll see.

And ladysekhmet. I don't wanna give up my heavy metal music waaaahh lol I'll just turn ci off when those're playing and listen to soft music with CI but jason my fiancee hates soft music he like rock/heavy metal too lol look like I need buy my own cd's since I have cd players I know there's ipod and mp3 players but I'm too broke for those right now, maybe for my bday or xmas (they're only a month apart)
I'll get one? We'll see

Btw thanks for the reponse everyone.

 

[LadySekhmet]

But one thing I did notice is one of electrode green dot was so much higher than all other when all other map it was lower than rest it doesn't makes sense maybe that's the one that's bothering me? We'll see.

And ladysekhmet. I don't wanna give up my heavy metal music waaaahh

Did she ever tell you why it's high?

I know what you mean about music. All I can say that it will take time (as I've said in my other posts!).

Good luck with your new map!

 

[R2D2]

But one thing I did notice is one of electrode green dot was so much higher than all other when all other map it was lower than rest it doesn't makes sense maybe that's the one that's bothering me? We'll see.

Does your audiologist run the electrode balancing test after the map? You know, where you have to determine if the two beeps sound roughly about the same volume to each other. If there was a problem with the green dot, it would have sounded much more loud than the beep it was tested against.

 

[SkullChick]

Hey update on my ear, I didn't wear it at all for 6 days now and it still hurt sometimes its on where the curve is on my head you know the backward S incision on ear the part that extend above ear that area is where its hurting and also sometimes on where magnet area is, I'm wondering if its scar tissue that's bothering me? or is it bone healing pain? Or is it all of above plus overstimulation in cochlea? I do remember one day when I bumped my head on wood and it got to where the area doctor drilled in and it hurt for few hours, is it what hurt? Or aggraviate the existing pain?
Ahh I'm afraid it won't go away cuz I love how clear CI sound and I can't wear it now and I'm worried about my listening and auditory memory going down cuz nothing makes sense anymore when I try wear it. (Speech-wise) plus my score is already too low for my preference (remember my other post saying I have 20% word test and 4% on sentence test)
ugh.
Am I only one experiencing those weird pain?

 

[R2D2]

I would check this out promptly with your audiologist, who may refer you back to your surgeon if its to do with scar tissue or something inside the ear.

One possibility could be that your magnet is too strong for you (which can make the head sore) and need to reduce the strength. But again this needs to be properly evaluated by people who have been appropriately trained.

Hope it's nothing serious! Keep us informed and posted.

 

[SkullChick]

Ugh I'm depressed now.
Nobody (audiologist and surgeon) is answering my emails, I don't know what to do anymore. I'm also getting tired of seeing other people with CI get 70% or better on listening test for 3 months post-activation because it makes me feel like something's wrong with me or if I'm stupid because of my low score (20% word test and 4% sentence test 3 months post-activation)
And with this problem I'm sure its going lower now.

Sometimes I feel like I'm failure and I can't stop worrying what if the problem won't go away? What if my cochlea start to get too sensitive and reject sounds? What if I have mental problem that don't accept sounds as well as other people (it'd explain why I didn't do as well as other people when I had almost mild hearing loss but other people with worse hearing loss doing great 100 times better than I with listening skill when I was growing up) I don't know, is there something wrong with me??

ugh *sigh* just hope surgeon and audiologist reply my emails soon and fix the problems.

I don't know I might will force my fiance to stop signing and start speaking to me maybe I need drastic change to improve my listening skills and signing is holding me back?

My speech skills sucked too I tried using my voices and it seem to won't match up with thing I hear and I makes fool out of myself, if I can't listen, can't talk then I'm useless and forever being stuck as wallpaper in social events, being left out in convo, all bad things from being deaf.

 

[LadySekhmet]

The only thing I can kind of suggest to you is to get another audiologist.

My score is low too...but I haven't been tested in like two months. So I'm wondering what it's like now.

This is all kind of because lack of training. I know you've said that you've been busy lately and stuff like that. I personally think that you are in dire need of a new map to increase your DR. That's probably why you cannot pick up sounds as well as you used to because your ears are used to it, and now it wants more power.

You also kind of need to realize that it takes about a year or so to finally get to the point where you have a tremendous sentence discrimination and scores in your word skills.

i use www.hearingjourney.com and found their training stuff VERY helpful!

Again, if you are frustrated and your audiologist is not answering your calls or emails, get another one. I would do the same thing if I had to go through that when I move to Vegas.