Need support /tinnitus insanity

[suz]

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!

[CHD63]

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

[GallopingSally]

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

[Syl]

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

[suz]

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?

[CHD63]

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

[Syl]

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

[nancyann]

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

[rupert]

  Kathleen,    Could you elaborate more on the xanax protocol  your doing?     Bryan

[GallopingSally]

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

[Mickey]

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

[moe]

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

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

[suz]

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

[JAndrews]

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.

[Chris P]

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