really loud tinnitus

[newmommyLA]

I am almost 5 weeks post op and I feel like my tinnitus has possibly gotten worse.  It is so bad I can't imagine living like this for the rest of my life.  I don't want to watch tv, listen to radio, talk on the phone, run the faucet...everything hurts.  I'm praying that this is going to improve and I was wondering if any of you remember having it this bad and when you started to feel like you could live with it.  I find that wearing earplugs is helping some, but I eventually want to be able to hear things again without pain.  I really don't understand why some people get tinnitus when they lose hearing and others don't.   

Sound is not my friend right now.

Amy

[Esperanza]

Just a few of my thoughts and experience.  I felt like this when I first lost my hearing - although I still have the AN - and wore plugs a lot initially - the whole world sounding 'wrong'.  I also have found since that there have been a couple of times when my tinnitus has spiked up - dodgy hearing test and very noisy MRI - and I have found that also has increased the sensitivity of hearing in my good ear..  Each time it has eventually settled down but made me pretty miserable whilst doing so, I still wear plugs to the cinema and such like though.

[pjb]

I am so sorry to hear of your tinnitus I too started with it after almost 2 1/2 months after my surgery for a 1 cm., AN and I was totally shocked to have developed it months afterwards my neurosurgeon said it was from the scar tissue forming ? I too cannot imagine living with this noise but people say you do get use to it, we just have to do research to see if there is anything out that can help right now it is driving me crazy....

Another tinnitus sufferer,

Pat

[GM]

Amy,

I'm sorry that your going through this...  You'll probably hear this a bunch of times but honestly its the truth.  Redirection is the key...don't concentrate on it.  I compare it to having children playing in the next room.  They fight, scream, holler, etc...but eventually you can tune it out and still make dinner with your sanity.  

We all have days that it just gets to us...me included.  I find that when I'm really tired, or stressed out..its worse.  For me I try to redirect it.  My personal belief is that the tinnitus is from our loss of hearing, its our bodies way of replacing the input that used to be there with this white noise.  

Although I still have some usable hearing in my AN ear, I do have loud tinnitus...as I'm typing this I can hear mine now.  Try reducing caffeine, taking decongestants and drink plenty of water.  I read a bunch about hydration in our AN area and how that could affect the tinnitus.  Since caffeine dehydrates, it make it worse.

I would also suggest getting out of the house and getting in some noise when it gets bad.  Go for a car ride and play some of your favorite music.  Go to the beach and listen to the waves, buy some sound Cd's to listen to...

Hope today is much better...at least know that we can relate.  

Gary

[CHD63]

Amy .....

Gary has some excellent points about redirecting your focus.  The tinnitus, sadly, will probably always be there.

I had virtually no tinnitus before surgery and very little immediately post-surgery.  I mistakenly thought I was one of the "lucky ones" to have escaped it!  Alas, it became worse and worse for about six months and since then has leveled off to a constant annoyance.  Like Gary, when I am tired it is much worse ..... my thinking is when I am tired I lose my exterior focus on other things.  Most of the time I can put it to the background of my conscious thinking ..... until I am in a noisy environment, e.g. restaurant.

My best way to deal with it is to keep myself busy concentrating on other things ..... many times it takes a conscious effort to redirect my thinking.

There are several places offering brain retraining to deal with tinnitus, because it is a function of the brain, not the ear.  Perhaps you could check into that if it stays unbearable.

Clarice

[Mickey]

 I`m presently W+W having tinnitus for 30 years now and finding out that I had AN a few years ago. There are times where tinnitus will be very bothersome. I`ve done everything there is to do. Neuromonics has helped subdue the noise to what I believe is very bearable. Other than that you must keep a healthy lifestyle which I have stated in the W+W posts here. Please don`t get to discouraged. Over time doing whatever you can to not inflame what you have and you will adapt!  Best wishes, Mickey P>S> American Tinnitus org. will hopefully someday understand and be able to treat this phenom.

[moe]

Hi Amy,
So sorry to hear about the tinnitus. You are still pretty fresh post op so give it some time.
Unfortunately I woke up with total deafness and increased tinnitus from before the surgery.
That was the first thing I noticed when I woke up. I didn't even notice that they had to cut the facial nerve. That is how annoying tinnitus is!
Do you have some hearing in the AN ear? I can't remember. 
This morning I just read my ATA newsletter. There are a lot of studies going on, someday there WILL be a cure.
I can't muffle or distract the sound, because it is in a deaf ear.
I go outside as much as possible (hard to do now with winter in the NW), keep an ear plug handy for the good ear and have NO problem wearing it! The ear plug in the good ear helps muffle the extraneous noise.
I can still hear what's going on around me.
It's just that if I don't protect the good ear, the tinnitus gets worse as the day progresses.
I've been suffering from this for 20+ years, and since the AN removal, have been to psychiatrist who has tried different meds (anti seizure, since it is a brain thing, not an ear thing, neurontin, and something else).
The only thing that helps is XANAX which I take two times a day, a very low dose. Docs don't like prescribing it, but it is the only thing that helps tone it from a scream to a shrill (like the EMS sound on the TV or radio stations-
"This is a test, this is only a test....."
I don't even know if they do that any more, but yep, it is a test of my sanity level!

Hang in there, how is that darling baby doing?
Maureen

[newmommyLA]

I spoke with the doctors about possibly cutting the hearing nerve.  I know for some people their tinnitus went away after hearing nerve was cut.  For others here, tinnitus got worse.  I can't imagine mine getting any worse.  I'm wearing ear plugs all day and night and I can't go into public places.  Being at House yesterday in waiting room was madness.  I'm desperate here and willing to try anything.  For now, the docs have me on meds and want to wait.  I don't know how long I can go on like this.  I miss my baby boy and don't get as much time with him as I'd like these days.  Mommy is often upstairs with earplugs staying away from all noise (including his).  I'm praying for a miracle.  By the way, hearing test confirmed I am SSD.

Amy

[pjb]

I cannot imagine what you are going through with having a baby and the tinnitus and trying to cope with it all,  my heart goes out to you.  I am in a quiet house and it does get loud but I have no one to have to worry about.  I previously replied that I am also going crazy and I read xanax helps some people with this I am on it and I am not sure if it really works I think it just takes the edge off.  I do know that if it is past the next dosage symptoms are more severe so I make sure I take it exactly when I am suppose to.  But everyone reacts differently with medication so I am not sure if you would be a good candidate for this medication with a baby but it is something to discuss with your doctor. I hope you find some relief.

Pat

[Denise S]

Oh Amy  am so sorry to hear that there wasn't any kind of better news.    They didn't have any other offers?

It is so nice what others have to offer here on this site too!     I feel like I'm wearig the ear plugs a lot too.

Tomorrow is my follow up in Novi , so we'll see what I hear!

THINK and  praying for you and family
Denise S

[loose screws (tightened)]

Hi Amy.

Wow, thats terrible news. Anything that can drive you crazy like that has to be so frustrating. I feel bad especially for the wedge it's put between you and your baby. That's time that can never be replaced. You may disagree with me and I don't blame you if you do. But I think the doctors advice would be smart to listen to. Don't forget that even though we are all different in our recovery, they've seen and dealt with it all before. I know it's gonna get better for you.

Wishing you relief.
Mike

[GM]

Amy,

I reread your posts and realized that you seem to have pain from your tinnitus....could possibly have hyperacusis?  I worked with an active duty U.S. Navy Sailor that had hyperacusis and wore hearing aids in both ears to reduce sound volume.  She had worked on ship engines her entire career and had both tinnitus and hyperacusis.   Have you considered this?

Here is a site on the topic:     http://www.hyperacusis.net/

and another:   http://en.wikipedia.org/wiki/Hyperacusis

Gary

[lawmama]

Amy,

I'm so sorry.  I can just hear the frustration and desperation in your post.  I truly hope that your tinnitus eases as your body adjusts to being SSD.  I'm still pre-op, so all I can offer you are my thoughts and prayers that this will improve.  From the way you describe it, it is practically debilitating.  I believe one of the worst things about AN side effects are that they sound somewhat benign to others, but to us they are sometimes very severe and can really impact our lives.  Again, you will be in my prayers.

Lyn

[4cm in Pacific Northwest]

Amy,

I have tinnitus and hyperacusis. Seems the sound goes in the good ear … and then rings louder in the dead ear (crinkling plastic bags are torture to me  )… I am one of the few that this did not get better for. Flesh tone earplugs are part of my daily wardrobe. I hope yours improves and you will NOT follow my path.

On my recent MRI it was noted that although the tumor remnant, left on my facial nerve, is dormant and not growing (phew)… sinusitis and Para nasal sinus disease was noted.

I agreed to have a CAT scan of the sinuses (in hindsight I have mix feeling about exposing my brain and tumor remnant to radiation  ) … that revealed that the maxillary sinus, which is supposed to be filled with air, (on my non AN tumor side)… was full of fluid.

•   First I tried the 12-hour Sudafed. (Interestingly noted:instant reduction in tinnitus & hyperacusis noted within an hour)
•   Nasal spay Nasacort & Afrin combined (hyperacusis down more)
•   Prescription Prednisone (from allergist)- big reduction in hyperacusis and tinnitus and got away with wearing NO earplug in most (not all) situations.
•   I am now off the prednisone and sadly some of the symptoms returned.
•   Now I just use the nasal spray ...seems to keep this down… (I use just before bed)


I have heard many “theories” about why I woke up with hyperacusis:
•   Stapedius nerve &/or muscle damaged leading to the good ear
•   E-stim for facial nerve at surgery could cause this
•   Confusion with the cerebral cortex being now SSD…

None I am totally 100% convinced about.

I have seen a: PCP, and ENT, a oculoplatsic surgeon, a vestibular therapist, a neuromuscular facial retraining therapist, a neurtologist, and neuro ophthalmologist (who is also a neurologist certified) and not one of them has a definitive answer for me.


Now I am thinking I have a blocked maxillary sinus that is magnifying the sound. (As on the CAT scan)… maybe  accentuating the hyperacusis and tinnitus.


I am just suggesting what I noted worked for me… might for you

•   Try the Sudafed 12 hour formula over-the-counter stuff that has the pseudoephedrine HCI in it (In Oregon you can only get this with prescription… Washington State it is available over the counter) I only take it at daytime as at night I have a sleeplessness side affect from it. http://sudafed.com/#adult/12h/tablets

•   Try 12 hour Afrin nasal spray… before bed http://www.afrin.com/
•   Do this for a couple of days. (But if you are on any meds check with your doctor and or pharmacist 1st -so there is NO drug interaction issues.)

This is a quick over-the-counter approach … and just sees if this changes your hyperacusis. You may have an underlining sinus issue that could be affecting the sound in your good ear.

I have finished a round of 20-day antibiotics and do feel better. ... Cured?    I am not sure yet… I am not in the mood for more surgery (ie sinus surgery)… and will just put up with it and monitor symptoms closely for now.

This is what the Merck Manual says about sinusitis etc
http://www.merck.com/mmhe/sec19/ch221/ch221i.html

I know I picked up an infection when in hospital for AN tumor dissection… I wonder if was not completely treated and it has been hanging around my system ever since ( 2+ years  )… and this round of antibiotics might have attacked it… hmmm not sure… only theory… I am back to more energy than earlier this fall. I had a bad flu/cold in late summer so who knows what caused the blocked/filled sinus cavity.

All I know is when I took the Sudafed and nasal spray… the hyperacusis I have been suffering with for 2+ years (since I woke up from AN surgery) … for the 1st time- it was reduced.

I guess all you can do is try.

Hope it works!

DHM

[4cm in Pacific Northwest]

I am just suggesting what I noted worked for me… might for you

•   Try the Sudafed 12 hour formula over-the-counter stuff that has the pseudoephedrine HCI in it (In Oregon you can only get this with prescription… Washington State it is available over the counter) I only take it at daytime as at night I have a sleeplessness side affect from it. http://sudafed.com/#adult/12h/tablets

•   Try 12 hour Afrin nasal spray… before bed http://www.afrin.com/
•   Do this for a couple of days. (But if you are on any meds check with your doctor and or pharmacist 1st -so there is NO drug interaction issues.)

AMY
Ok I just had an after (post) thought ... that you might be nursing your baby and that HOUSE may have you on meds. PLEASE discuss this with your physician before you try this over-the-counter approach that "sort of" worked for me.

My youngest is age 11 ... I am WELL PAST the nursing stage.  

DHM