ANA Discussion Forum

General Category => Hearing Issues => Topic started by: suz on January 27, 2011, 07:45:03 pm

Title: Need support /tinnitus insanity
Post by: suz on January 27, 2011, 07:45:03 pm
Hello friends,
I have had tinnitus for years ,but about 3 weeks ago - and 6 months post-op - my hearing on AN side decreased substantially overnight and the tinnitus/roaring/whooshing sounds increased in volume tenfold .  There is actually a feeling of reverberation in my head with certain sounds including the sound of my own voice. A course of steroids helped slightly with hearing but the other sounds just keep getting worse. I am really falling apart. I understand that there is little to do about this problem. That makes the situation really depressing. The tinnitus that I used to have was annoying but I only really noticed it when it was quiet. The new tinnitus is oppressive and unescapeable.  My doctor has suggested Elavil, which is an antidepressant but is also used for chronic pain and tinnitus. Wondering if anyone has had any success with it? The side effects from this med sound pretty unpleasant also.
I can't imagine the rest of my life this way. Really not sure what to do to get relief. I am a meditator but meditaton just seems to accentuate the noise; but any external sound just causes the tinnitus to get louder and creates that vibration in my head. To make matters worse, my job involves listening to fetal monitors all day (bumpity-bumpity-bumpity-bump).   I know that there are hearing aids that can mask some of the sounds; unfortunately since I have such fluctuation in my hearing in the six months post-op it is not recommended that I pursue one yet.
Any suggestions? I have seen some posts about St. Johnswort and gingko; I am going to try them. Franlkly I would try just about anything. Heard about "neuromonics tinnitus retraining" a VERY expensive treatment - has anyone had any success with this?
Any and all suggestions are welcome!
Title: Re: Need support /tinnitus insanity
Post by: CHD63 on January 27, 2011, 09:00:54 pm
Hi Suz .....

So sorry your tinnitus has cranked up to such an unbearable level.

I never had tinnitus until after my AN was removed.  At first the tinnitus was only in my AN ear, but now I have it in both ears, although much louder in the AN ear.  I have approximately 20% hearing in my AN ear, 100% in my non-AN ear.  I wear a Widex digital hearing aid in my AN ear.  When I am busy or talking with just one other person in a relatively quiet environment, I can successfully tune it out of my consciousness.  Otherwise, I am always aware of it.  When I do not have my hearing aid in, it is MUCH worse so I normally wear the hearing aid from the time I get up till bedtime.  There is a zen setting on my Widex that is supposed to help with tinnitus.  Every time I try to use it, I find myself tensing up trying to decipher the random pattern of the soft bells.  Maybe I just have not given it long enough at a time to work.

I have signed up for every session on tinnitus at the Symposium in June ..... hoping, against hope, that there are new treatments on the horizon.

One of the really bad things about tinnitus is that it wears me out ..... struggling to keep it out of my consciousness.  Three things I know make it worse.  Fatigue (I really try to get adequate rest), stress (some times it is easier to reduce than others), and caffeine (I really need my 1 1/2 cup jumpstart in the mornings but I know it would be better if I did not have it).

There seem to be mixed results from the neuromonics retraining.  Since this is a phenomenon that not only AN patients have, but many older people as they age have, I am really hoping that the increasing number of people affected will drive additional research into relief plans.

Since I have such an aversion to taking medication unless there is no alternative, I am wondering if biofeedback or yoga, along with the neuromonics might hold some promise.

Sorry this is not being very helpful to you, but have you checked with a highly trained audiologist (hopefully with training dealing specifically with tinnitus), who would be willing to work with you on a trial hearing aid?  I had a 90 day money back guarantee with mine.

Many thoughts.  Clarice
Title: Re: Need support /tinnitus insanity
Post by: GallopingSally on January 28, 2011, 12:20:52 am
I am currently following the Oregon Health Sciences University 6 week Xanax protocol for tinnitus.  I tried for almost a month to ignore it but I got to the point where I could not sleep.  I truly feel your pain.  The good news is that the Xanax has reduced the volume by about half AND I am sleeping through the night.  I do, however, wake up with a headache every morning (I take the Xanax at night).  Apparently the Xanax works by sort of quieting the excess brain activity, and of course, reducing anxiety about the ringing.


I hate being on a daily medication but until I find out if my symptoms are from an AN I need to do something.

Kathleen

Title: Re: Need support /tinnitus insanity
Post by: Syl on January 28, 2011, 11:34:18 am
Suz:

One of the reasons I got my hearing aid was to help calm/sooth my tinnitus. My word recognition is at 20%, making my hearing aid pretty useless for conversations. I wear the hearing aid pretty much all day. In fact, I find that when I don't wear it many sounds are quite distorted & therefore distracting to me. I, too, get that reverberation you mention.

What I hear most of the time in a quiet environment is something between a buzz & a swish. It's consistent, smooth & bearable until I'm around noise & sounds. At that point this buzz/swish echoes to the rhythm of the noise or sounds around me. Example: If the volume on the TV is too high, my tinnitus buzzes/swishes to the rhythm of the sound from the TV. It can be music, conversations or any sound. That makes my tinnitus very distracting.

My hearing aid has two settings. One is a background setting for use outdoors. The other is for use with conversations. The latter  amplifies & distorts the noises and sounds that I already find annoying and distracting without it.

The background setting is the one I use all the time. Not only does it provide some directionality when I'm outdoors, but it reduces that distortion of sounds that is so distracting.

If your word recognition is as useless as mine (20%), I highly recommend a hearing aid like mine. It wasn't cheap, but it is well worth it for me.

You mention your hearing has fluctuated. Well, hearing aid settings can be adjusted to accommodate changes in your hearing.

I hope this helps.

Syl

Title: Re: Need support /tinnitus insanity
Post by: suz on January 28, 2011, 11:55:44 am
Thanks Clarice, Kathleen, and Syl for your support and comments,
I guess I can look forward to the hearing aid to potentially get some relief. Unfortunately i have to wait until I have stable hearing for at least 30-60 days before making that investment. In the past 6 months my hearing has gone from "mild-moderate" loss to "severe" and back to "moderate". I have had a test with 22% word recognition 2 weeks ago but back up to 70% this week. Although sometimes I wonder if guessing at a word during the test really qualifies as truly hearing a word. Guessing all day is really frustrating!
I am really glad to know that I am not alone with the crazy reverberation feelings I get in my head. I think I am driving my family crazy coaching them on just how loud to talk. Too soft, can't hear; too loud, reverberation - ahhh!
I think I will try the medication, but I am not optimistic. As a nurse, I have access to alot of research and info. The studies on the effectiveness of Elavil for tinnnitus is not encouraging. But then NOTHING seems to be except masking.
Last night I used my Sharper Image white noise machine (actually love the "Ocean sounds" option) and I slept better than I have in weeks. I used to use it to help me sleep during the day when I worked night shift. Glad I still have it.
Curious about the cost of your hearing aids, ladies. Hope that is not too personal of a question. I was SHOCKED to hear what my father-in-law paid his; had no idea how huge of an investment this might be. Also surprised that insurance does not cover them. Hoping that his was the higher end model and that I can do better. His was $7,000.; how does that compare?
Title: Re: Need support /tinnitus insanity
Post by: CHD63 on January 28, 2011, 01:37:59 pm
Hi suz .....

At the time of my surgery, when it was determined some of my hearing was preserved, my neurosurgeon said to wait six months for my hearing to stabilize.  I had an audiogram at three months out, one at six months out, then annually on the date of my surgery and they have all been essentially the same.

I am curious about something, however ..... and you might want to give your audiologist a call on this.  My hearing aid was programmed initially based on my particular frequencies of hearing/loss of hearing.  My audiologist told me she can reprogram mine if (when  ::)) age-related hearing loss becomes an issue and my hearing changes.  Is there a reason for you to wait other than your hearing still settling?

I have had two hearing aids since surgery ...... first one was a MicroTech Curve7 that was in the neighborhood of $3,000.  About a year and a half later, when I was not happy with it and my first audiologist left the clinic, I changed to a new audiologist with far more experience and she recommended the Widex Mind.  Since it had only been a short time between the two, she was able to give me a reduced deal of about $2,000 ..... but I think it would have been closer to $3,000.  These prices are for just one hearing aid, of course.  My non-AN ear has 100% hearing.  I have been extremely pleased with the Widex ..... not sure whether it really was the hearing aid or just poor programming on the MicroTech.  I have four settings on my Widex:  standard (for most normal situations), comfort (shuts off back microphones in restaurants), zen (plays soft random bells ..... she can program it to other random sounds if I wanted her to change it), and music (it increases the higher frequencies for better music listening).  There are other settings if needed for your particular environment needs.

Unfortunately my insurance did not cover any of the cost so this was a major investment for me, but it was worth it for my sanity!  Some insurance companies will pay a portion of a hearing aid.  It seems so unfair that my insurance company paid for my surgery, pays for the post MRIs, paid for my walker, etc. but will not pay for the hearing aid that is a direct need of having had an acoustic neuroma!!

Let us know what you find out.

Clarice
Title: Re: Need support /tinnitus insanity
Post by: Syl on January 28, 2011, 03:35:21 pm
Suz:

My ReSound Ziga cost me $1,200 plus a $250 fitting fee, and it wasn't covered by my insurance. The surgery cost me a $250 co-pay, but Kaiser doesn't cover the hearing issues resulting from the AN that required the surgery. I totally understand what Clarice is saying.

I can see why it's a good idea to wait for your hearing to stabalize. If you get a hearing aid that's programmed for the sever hearing loss, it could hurt your hearing when someone shouts into your hearing aid if your hearing should change to the moderate hearing loss. It would certainly be uncomfortable and even more annoying.

Have you considered wearing an ear plug in the AN ear? That might diminish the reverberations and the discomfort that comes with them.

Syl
Title: Re: Need support /tinnitus insanity
Post by: nancyann on January 28, 2011, 05:14:57 pm
Hi Suze:  I have found that if I take a Xanax to help me fall asleep, the next morning my tinnitus is barely recognizable.  Unfortunately, it doesn't last.  So I have just tried to ignore the loud, constant buzzing & whooshing as best I can.  I do end up taking the Xanax once a week though...
Always good thoughts, Nancy
Title: Re: Need support /tinnitus insanity
Post by: rupert on January 28, 2011, 09:27:03 pm

  Kathleen,    Could you elaborate more on the xanax protocol  your doing?     Bryan
Title: Re: Need support /tinnitus insanity
Post by: GallopingSally on February 01, 2011, 08:38:01 am
Hello:

The Xanax protocal that my Doctor prescribed is one put out by Oregon Health Sciences University.  The first two weeks you take 0.5 mg at bedtime, the second two weeks the dose is 0.5 at bedtime followed by 0.25 morning and Noon.  I believe the last two weeks are 0.5 morning and bedtime.  Apparently it is best to work up to taking Xanax in the morning so that you can avoid the drowsiness effect.



The idea is to help you find your "maintenance dose."  I am at the end of my second week and have found that the 0.5 at bedtime gets me through the night but by 5 PM I am a little crazy from the pressure and ringing.  My MRI is today so I will find out if all my AN symptoms are actually AN!  I cannot imagine what else it could be.


Kathleen
Title: Re: Need support /tinnitus insanity
Post by: Mickey on February 01, 2011, 09:39:35 am
Hi Suz! Iv`e had tinnitus for over 30 years and have tried everything mentiond plus on the posts except for a hearing aid (don`t need one yet). I finally was dionosed with AN going into 4 years now W+W. The best thing that did help me a bit was neuromonics. Very expensive and without insurance I suggest you try a good set of head phones playing  what you believe to be the most soothing music you can find at regular intervals. I like to stay natural as possible looking into the best supplements, exercise, foods and so on to stay healthy. Every so often I do take a sleeping pill or a traqilizer but find they are only temporary relief. Hang in there! Iv`e gotten pretty used to mine but always still trying to find something to make it tolerable as possible. Best wishes, Mickey
Title: Re: Need support /tinnitus insanity
Post by: moe on February 01, 2011, 09:53:41 am

The tinnitus that I used to have was annoying but I only really noticed it when it was quiet. The new tinnitus is oppressive and unescapeable.  

Wow, those words describe me too!
I woke up from my 11 hour surgery, and my first thought was "My tinnitus is louder." Forget that they had to sacrifice my facial nerve to get the bloody tumor :o

I TOTALLY know where you are coming from. I too am a nurse, home health, very part time, which is doable. One patient at a time, in the privacy of their own home.

I usually introduce myself and the company, and then ask if they wouldn't mind turning the volume down, if the TV is on. I understand the part of driving the family nuts- can you plz turn that down, plz don't talk so loud, etc... I just have an ear plug nearby and say that I'm putting the ear plug in now.(in the good) ear OR I listen to music with my smart phone (actually has an app for white noise).

I take xanax .5 mg extended release, three times a day, and a trazodone at night to help me sleep.  The xanax helps tone down the tinnitus, it will never go away though. Mine is a 24/7 EMS type shrill sound. The BAHA helps a little bit with the background setting. I do think I'll try some gingko. I have tried antiseizure meds (no luck there).  Someone asked if anyone had tried hypnosis. Hmmmm,  you get to a point where you'll try anything!

Hang in there, it is rough, I know!
Maureen
Title: Re: Need support /tinnitus insanity
Post by: suz on February 06, 2011, 08:48:46 pm
Thanks everyone for your comments and support; I may have said that already but I just saw more replies to my post today and am just so glad to hear from some others who understand.
I am feeling alot better since the steroids have completely left my system and I am sleeping better. I can't tell if I am having less tinnitus or if being better rested makes it all more tolerable. Could not believe a few weeks ago that I could aclimate to this new volume of sound in my head but maybe I am.
My neurotologist prescribed Elavil, and I finally got a prescription from my family doctor for it. But I have not yet taken it because I am afraid of the side effects. Since he had initially prescibed it to help me sleep through the tinnitus, and I now am doing that on my own, I am not sure if it is worth it. I'm going to wait a bit longer.
Will keep you posted.
Suz
Title: Re: Need support /tinnitus insanity
Post by: JAndrews on February 07, 2011, 06:51:04 pm
I really understand!!! I deal with the same kind of tinnitus. I take ativan 0.5mg at bedtime..works wonders. I hate taking meds every day but I tried for a long time not to and then gave up. I wish I had starting taking it a long time ago. Nothing else helps..I have learned to block it out better..but some days UGHH!! I just want to scream.
Title: Re: Need support /tinnitus insanity
Post by: Chris P on February 22, 2011, 10:27:17 am
Hi Suz,

   I understand , I have loud noises in my ear also.  I find that when I am home I can handle it OK but when I am out and there are a lot of other noises it bothers me.  Recently I have been putting an ear plug for sound in my ear and it helps a lot.  It cuts down on the vibrations and I can function better. 

   I had my Gamma Knife Radiation on June 22, 2010 and in October 2010 I got facial weakness.  My doctor said it was due to swelling from the radiation and when the swelling goes down the facial weakness will get better.  I see him ( Dr. Freidman, Shands, Gainsville, Fl. ) again in June for another MRI.  Hopefully it will be good news.

   I wish you well with your problem and remember things can change it is a slow process and we have to keep a positive attitude .   

   Chris P
Title: Re: Need support /tinnitus insanity
Post by: Farmgirl88 on August 18, 2011, 09:52:23 am
I was diagnosed with a small tumour in March, and am currently on watch & wait.  I have tinnitus 24/7 and moderate hearing loss and work in a library, which makes the tinnitus even more annoying, being in a quieter environment. 

I went to an ENT about tinnitus treatment options, and he did recommend Amitriptyllin being something that many people find helpful.  Another suggestion he had was a hearing aid.  I was hesitant to try the drug, so I made an appointment at a hearing aid clinic to investigate a hearing aid.

Was I ever glad I did!  I had no idea there were hearing aids specifically for tinnitus sufferers.  They recommended the Widex Mind, and I got it yesterday.  So far, I am really impressed!  Mine has three settings, hearing aid, hearing aid plus zen tones, and zen tones only.  I chose the "Aqua" program of zen tones, and you get to select the speed, pitch and volume of the tones.  I wore it to work yesterday, and it was great; only time it was too loud was when I was helping a customer find a book and she burst out laughing right next to my ear! 

I was surprised last night when I removed it how much I was aware of the tinnitus again; couldn't wait to put it back on this morning...

My clinic was able to get me a few discounts, and they talked Widex into giving me the remote for free (it's about $200).  Mine cost $1718 altogether; Canadian gov't pays $500, and my insurance will pay $275 every 5 years.  Yes, it's expensive, but if it helps your sanity, and you can manage it, why not?

I'll be honest here, my tinnitus was starting to cause marital problems, so if we're both happier, life's much nicer.

Lori
Title: Re: Need support /tinnitus insanity
Post by: Jim Scott on August 18, 2011, 01:43:37 pm
Hi, Lori ~

Congratulations on discovering a solution to the dreaded tinnitus problem so many AN patients have to endure.  Thanks, too, for alerting us to this approach to combating your tinnitus.  I'm sure many of our members will appreciate your post.

Jim 
Title: Re: Need support /tinnitus insanity
Post by: moe on August 19, 2011, 10:34:33 am
Great news and hope this can help those who have the tinnitus and some hearing.
Unfortunately the SSD group, me included, can't benefit from the device >:( since I have no hearing to mask the tinnitus.
Glad this is working for your marriage, too  :)
Maureen
Title: Re: Need support /tinnitus insanity
Post by: jaylogs on August 20, 2011, 03:37:48 am
I too have been suffering from tinnitus, but it hasn't been at levels that some of you have experienced, but there are days when it's close! :)  I always read these threads when it comes to tinnitus, and this particular thread seems to have some different meds/devices that I haven't seen before.  Thank you all for the helpful advice on what's out there! :)
Jay
Title: Re: Need support /tinnitus insanity
Post by: CHD63 on August 20, 2011, 08:16:09 am
This thread was started quite a while ago so hope new people are looking at the dates.

Since tinnitus is not measurable by current technology, insurance companies will not pay for treatment of it, unfortunately.

Neuromonics sounds the most promising of current treatments but it is expensive.  It involves wearing a device like a hearing aid for several hours a day, several days a week, with specially programmed sounds/music for the individual.  The idea being to retrain the brain to ignore the sounds of the tinnitus.  The initial treatment can last several months, with follow-up, as needed.

When I went to the University of Kentucky a couple of weeks ago to have my Ponto Pro programmed/attached, I met with two different audiologists there.  One has been specially trained in processor programming, the other specially trained in treating tinnitus and in neuromonics.  My husband and I had a long discussion with both of them.  I specifically asked about whether I could receive any benefit from neuromonics being SSD.  The answer was "yes, but ......"  Bottom line:  I would obviously have to wear the device in my hearing ear and the success rate is less (but not unheard of).  She said I would most likely have to wear it over a longer period of time to achieve significant relief.  When I asked how in the world it could work to change the perception of sound in my deaf ear ..... she reminded me it is the brain that is being retrained, not the ears.  At UK, they offer a 30-day money back trial period.  If at the end of that time the patient experiences no change in his/her tinnitus, the treatment can be stopped and money given back.  Since I live a 3 hours drive away, it is not practical for me to try it there.  I may explore it with a local audiologist.

If anyone is interested Google neuromonics and look for a trained audiologist in your area.

Clarice
Title: Re: Need support /tinnitus insanity
Post by: Jim Scott on August 20, 2011, 01:40:11 pm
This thread was started quite a while ago so hope new people are looking at the dates.

Clarice ~

Good point.  I was responding to Lori (#15) and her post from 2 days ago (8/18/11).  However, your information regarding the specifics of Neuromonics, based on your own research (including an audiologist consultation) are very informative and offer an even wider perspective on this device, including the potential drawbacks for SSD people.  We appreciate your input.

Jim
Title: Re: Need support /tinnitus insanity
Post by: mellowrama on September 01, 2011, 07:07:48 pm
Sorry to hear about your tinnitus troubles! 

My tinnitus was driving me crazy for (and still does when stressed,etc) and after researching extensively there doesn't seem to be anything that can be done for my situation. 

But, I have to say that over time it has gotten better!  I don't think its changed, but I think I've gotten used to it...there is hope.
Title: Re: Need support /tinnitus insanity
Post by: mk on September 01, 2011, 07:39:24 pm
I don't have tinnitus so I haven't really researched the topic. However today I stumbled upon an ad on the local paper about a Tinnitus Management Event, where there will be a demonstration of a technology called the mind (TM) and CLEAR (TM) series by Widex. The ad mentions that these hearing devices offer use a program called Zen, which are basically tones that may provide relief as a sound therapy tool in a tinnitus management program.
Anyway, the ad goes on and on, and I don't know if this is any good, but I just thought I would mention it since I saw this thread. I have all the details in case someone is interested.

Marianna