Did SSD Hearing Device help with Tinnitus???

[msswartz]

Hi,

I've had tinnitus since my late teens as far as I can remember.   During the day it's there but I am busy so I hardly notice it.  But if I am sleeping in a quiet room or camping, it's deafening.  I had AN surgery in November so now I have SSD on my right side which happened to also be my noisy side because of the tinnitus.  Related or not, I don't know.  But it was there and it is still there now.  I don't think it is any better or worse.  It is just now the only sound on that side.  And since in my case the CN8 was severed during surgery it is especially interesting that it is still there.  It isn't a real sound that I'm hearing.  It is noise created by my brain or body that is perceived some way other than normal "hearing".   Many of you already knew this but it was new information for me.  I had never really thought about it and so I had no idea I wasn't hearing it.  I wish I could get rid of it though.

Michael

[Mei Mei]

Dear Michael,
I am sorry you are suffering so much from the tinnitus.  I talked to my dentist yesterday about the possibility of TMJ and teeth grinding contributing to tinnitus and he was skeptical.  He said that it probably would not help but offered to make me a mouth guard to give it a try...just wasn't optimistic.

I wish there were some answer to the tinnitus question...some escape.

Take care,
Mei Mei

[ncutt]

Mei Mei,

Don't know if this will help, but you may want to try it.  About a year ago, I stopped eating wheat, dairy products and most sugars.  My headaches went completely away.  I am an O blood type.  When I don't eat properly, I get the headaches and inflammation in my fingers.  Also my massage therapist treats tmj or clenching jaws by sticking his finger in your mouth (gloved, of couse) and putting pressure on some of those knots that form.  You kinda feel like a hooked fish.  Hurts like the d***ens but it really helps.  I don't know the proper name for all of this, but if you are interested I can find out more.

[Mei Mei]

Thank you for your suggestions.   I have heard this before about wheat.   In fact, my daughter went to an allergist about three years ago and was told to eliminate all wheat products from her diet.   She is now doing much better.  She is on a gluten free diet.  As for the massage in the mouth,  I don't know of any massage person who would do this, but it sounds helpful.    I will ask around for this, but it might be hard to find. 

I asked my dentist about the TMJ and Tinnitus and he didn't see the relationship in my case but would make a mouthpiece if I wanted one.

Mei Mei

[Mei Mei]

I went to the link this morning that Denise posted and read it over again.

Under the section on Cochlear Implants they mentioned that some patients get releif from the tinnitus after the implant.  This was in the last line of the Cochlear implant section.   This would be a great benefit to the BAHA.  No?

In the section listing the drugs they had on there the drug that I mentioned on the Headache section of our forum that I have been taking for years for Myofascial Pain and headache prevention.  Now this has a side effect of Tinnitus.   I have been swearing by this drug for years.  It's called Topamax.
I'll have to go to the headache forum and let them know what I learned from this link.  It's frustrating to learn that such a helpful med. can also cause Tinnitus.

Sincerely,
Mei Mei

[Denise S]

Mei Mei, those are a couple interesting finds you got.  Did you go for the mouthpiece?   I know they are expensive.   

I was surprised how LONG the drug list was that can contribute to tinnitus.   Ya know I seen the Topamax name on there.  It tended to stand out because I've seen where a lot of people on here seem to take it.   BUT, I never payed attention if they have tinnitus or SSD.     interesting

[Mei Mei]

Dear Denise,
No, I'm not going for the mouthpiece, I'm just tempted because it is non=surgical.  I wrote to them and they are only considering people on the West Coast in the SanFrancisco Area.
I have an appt on June 14 with Dr. Niparko for preliminary work up for the BAPA and will probably do that.

Regarding the Topamax and thank you for alerting me to the information, I don't know what I am going to do about it.  I've been taking it for over 8 years and now think it is probably the cause of the tinnitus pre surgery.   I was originally prescribed the Topamax for Myofascial pain and prevention of headaches.   I've been pain free all these years.   Maybe I should go off of it for a trial and see what happens to the tinnitus.  The other person just mentioned a wheat free diet so I'll try that as well.

Will keep you informed.   It's trial and error.   I hate to stop the Topamax with the Post Surgical headaches I've been suffering now.

Mei Mei

[Mei Mei]

I received  a note from my doctor at Johns Hopkins after asking for help with tinnitus.   He told me to decrease my use of caffeine as that might help and that the BAHA would help while I am wearing it.  This confuses me because what I've read on this board I was told the BAHA didn't make a difference.   I've also copied and pasted an attachment on the use of the iPod or Mp3 player for help with tinnitus.   See if this helps you.  Mei Mei

Using iPod or MP3 player for partial masking therapy

If you are bothered by tinnitus (ringing in the ears), listening through the tinnitus to music played at a level just below that of the tinnitus may help.

To do this, follow the instructions below:

It is helpful to use good quality noise cancelling headphones.
Listen to music at a level just below the level of the tinnitus to music that you like.  Suggested types of music are Celtic music or other classical musical with tones similar to the tones of the tinnitus which you hear.
Do not try to drown out the tinnitus but rather try to focus on the music through the tinnitus.
Avoid further damage to your ears by limiting the exposure to loud noise.
Avoid total silence as this tends to aggravate the tinnitus. Try to sleep with a ceiling fan, environmental noise machine or radio on low.
Try the iPod or MP3 therapy for approximately 2 hours per day.

[Denise S]

He Mei Mei,

THANKS for emailing me that info.   I for sure printed it out, but am wondering how we are to know the level of our tinnitus?   I have added that to some of my questions since I will be having an MRI in the next weeks and then seeing the actual neurosurgeron for a follow up this time (vs. neurotologist).   I can totally sleep fine without any noises to drown out my tinnitus, so I figure it must just be a mild stage.  Thing that is odd though is how it never even started until about 2 1/2mo. post op and tend to come & go (still thinking more weather related or allergy/sinus, being there is lots of that right now here in Michigan).

Also, you mentioned above about the doctor recommending decrease in caffine.   I have read that like everywhere.    As for you dr. mentioning wearing the BAHA should help, well of course that is kind of why I started this thread.   I have now read in multiple places that hearing devices "may" help with tinnitus.     I have gotten feedbacks or emails from a few others (not just from this site) that say they thing if they use their hearing device regular, they do notice a differece.      OF course, there are a couple they say they are not sure and one said they really never paid attention 

THANKS AGAIN!!!!    ***love this forum***   
Denise

[Denise S]

Mei Mei,
I forgot to mention hopefully if you go off the Topamax all goes well.   Sure that is one you would have to wean off very slowly.

Have you ever thought of putting your surgical date or info. in the signature part below?    (just curious because I do tend to forgot how much farther along some are than others........then I end up asking questions sometimes that a lot of times can be answered by looking in signature)  :-)

take care!!!

[Mei Mei]

Dear Denise,
Glad you received the information.  I keep meaning to update my signature file but am lazy because I was so busy with getting ready for surgery and getting my father settled in with the new aide in the house.  I don't even know how to put my picture on the forum.   My tumor size was 1 cm and was taken out on Jan 12 at Johns Hopkins by Dr. Niparko and Tomargo.  I am now SSD but no facial paralysis.  I do have daily headaches.

I am concerned that the doctor says that the BAHA helps with the tinnitus helps  and people on the forum say that it doesn't.  This really confuses me.   I've stopped the caffeine, but not the Topamax.  I've also stopped the wheat and am going gluten free including oatmeal.  I hope this helps the headaches as well as the tinnitus.

Trying to stay as natural as possible and to be as healthy as possible.   Have a good Sunday EVERYBODY!!!!

Mei Mei