Grrrrrrrr, sometimes I could scream

[Rick Everingham]

I don't post a lot but I need to share with people who understand.  I am 4 1/2 years post surgery (trans lab) and I still fight (as we all do to some degree) SSD, tinnitus, depression and cognitive issues.  At times the ringing is so bad I could just scream, I hate restaurants and being in crowded rooms with lots of noise (makes the ringing worse).  Went to a Valentines banquet and had to leave mid-way through because the ringing was so bad.  I still fight cognitive issues, having a conversation and complete drawing a blank on a word in mid-sentence, I have to proof read everything I type carefully for incorrect words and my memory sucks.  I am simply not the same person I was before and I hate the changes.  But of all it, the ringing is the worst, I would give a million bucks for silence.

[pattibobatti]

Hi Rick,

Like you, I don't post much but I felt so bad for you when I read about your noise going on in your head.  When you wrote, "I would give a million bucks for silence", I understood how bad it must be for you.  I was just thinking biofeedback might be helpful.  It can't hurt with depression either.  I don't have tintinnitis but I have other post surgery junk that I have to deal with daily.

I really just wanted you to know that I wish you did not have to have that awful noise in your head all the time.  Don't give up, though.  Nothing wrong with a good scream..

Patti

[lori67]

Rick,

We'll all cover our good ears and you go ahead and let out a good scream!  You've earned it!

Wish I had some words of wisdom to offer or, better yet, a solution.  Just know that you're not alone and we feel your pain.  I hope you get some relief soon!

Lori

[tony]

I saw your note
- and yes a bit like the "need to vent" thread ?
which now will reach around the globe (surely ?)
anyhow there are things you can do
- if you want an offline chat I am happy to send
you some of the cognitive stuff etc
Finally make some notes re the ringing
basically caffeine and similar are said to make it worse
excessive noise/traffic exposure does not help
and general tired-ness is often a trigger
plan (where possible) ways to reduce these
and the noises will ease
wishing a quiet week for you ?
best regards
Tony

[LADavid]

Hi Rick
I've had Tinnitus for 25 years.  I fully know the frustration you are feeling.  For years I was a corporate marketing exec.  The ringing and hearing loss created such a disruption in my ability to function, that I was eventually "retired."  I found some relief in the acting business.

Resturants and Clubs are just about impossible.  I gave up on clubs and in restaurants I do a lot of lip reading.  I do wear a hearing aid in my "good ear."  It helps somewhat but unfortunately it also amplifies the surrounding noise -- and I have the top of the line aid.  It's gotten to the point where I will carry on conversations with people that speak clearly and loud enough for me; but I will ignore the mumblers and tiny-talkers.  It doesn't have to be your frustration.  I always wanted to design a t-shirt that read: Hearing loss is a disability; mumbling isn't.  Speak up, damit!

As far as the ringing -- I have no suggestions.  Over the years I got used to it like it was a part of me.  I rarely notice it anymore unless writing like this brings attention to it.  It does help when those around you understand what you are dealing with.  At one time I found this website that had the various Tinnitus sounds that you could play for others.  When they heard mine they were a bit more understanding.  Mine sounds like a steam kettle.

And here's the misery loves company part -- Tinnitus suffers include, Pete Townsend, Bono, The Edge, Neil Young, Ted Nugent, David Letterman, William Shattner, Steve Martin, Bill Clinton, Sting, Cher, Trent Reznor, Phil Collins, Brian Wilson, and of course, Ozzy.  And that's just to name a few.  The list is very long.

There are some that say white noise helps them in quiet situations like trying to go to sleep.  And I do know that coffee, cigarettes and stimulants tend to make the ringing louder.  I sympathize with you.  My only suggestion is pick the places where you are comfortable.  Avoid the ones where you aren't.  And when you are in those situations like the Valentines Day banquet -- I just keep telling myself it will be over with soon.  I realize that is sort of fatalistic -- but over the years, it's the way I learned to cope.

If you ever want to vent, please feel free to write me.
Best Wishes
David

[Jim Scott]

Hi, Rick:

I'm sorry to read of your continuing post-op problems.  Unfortunately, like the previous posters, I don't have an easy remedy for your SSD, tinnitus, cognitive issues and resulting depression.  We've all suffered in varying degrees.  The reality is that once having an acoustic neuroma tumor, even four years post-op, can result in life-altering changes that are difficult to simply adapt to.  'Head noise' is maddening and can be debilitating, as you well know.  As you also know, there is no simple fix.  I wish it were not so.

Those who surmount these challenges usually begin by accepting them as now a part of their life. That doesn't mean liking any of it, just accepting the reality that your hearing in the affected ear isn't coming back and the tinnitus isn't going away.  The cognitive issues can be 'worked around' to some extent but that requires effort and determination.  Most things worth doing have a similar requirement.

Mourning 'the old you' is perfectly normal, as is resentment for your losses, but at some point one must at least try to face and accept what cannot be changed and move on with a determination to improve what can be improved and to adapt to what cannot, which is always difficult - but achievable.  While you have the aforementioned issues to deal with, others have facial paralysis, pounding headaches and  other problems, including a loss of equilibrium, that you don't have to battle.  That knowledge may not resolve any of your problems but it should help to remind you that AN tumors can and often do leave all sorts of 'scars' that we have to face and eventually either adapt to or conquer... preferably the latter.

Rick, I'm glad you posted and I certainly understand your frustrations.  I'm gratified that you chose to take the time to post your feelings here, among those who do understand, often from their own experience.  I would mention that there are some medications for some of the problems you've mention so I hope you'll present those issues to an understanding doctor who may be able to prescribe something that can alleviate your various problems or at least lessen their impact on your life.

I trust you'll stay in touch with this site and forums and of course, we all wish you better days. 

Jim

 

[ixta]

I've found that excercise helps me a bit. I have been running. Regarding cognitive issues-ya alot! Feeling of floatiness, memory, attention, fatigue, depression, anxiety, impending doom!. re: attention-For instance, I wanted to heat up some tea the other day and refill an ice tray in the freezer. I grabbed a cup of water placed it in the microwave, then grabbed the icetray, put water in it, then placed it in the freezer... THAT IS WHAT I PLANNED AND SHOULD HAVE DONE...

What I actually did was remember taking the cup of water and placing it in the microwave to heat, but there was the icetray with water inside the microwave!, I had put it there without realizing it and It was a blank to even remember what I did.

this happens in speech to, hearing and enunciating words, like aphasia or something. I may replace words that don't belong and my grammar is crooked. depersonalization, derealization, and of course my neck twitch that I brought up in another post.
I do not dream hardly anymore. Psychosis and dementia coming on early I do not know.. maybe the Dr planted something inside while I was under- HAA

[Rick Everingham]

Thank you all for letting me vent, I really appreciate it as only someone who has experienced this can fully understand it.  Let me say, that overall, I have been blessed by my outcome and do not suffer many of the problems I see other people with in here.  Just lately for what ever reason, things have really gotten to me and I needed to scream. 

Part of the reason is some symptoms have returned such as facial twitching, I had a lot of facial nerve involvement, but my facial nerve was not severed or damaged during the surgery and in fact the twitching had went away, but it is back. So is the dry mouth and tinny taste, but an MRI at Thanksgiving did not show a tumor so now why are they back, docs are trying to figure it out.  My right eye (AN side) has since went dry and I must use artificial tears daily, but this did not happen until about 3 years after surgery, go figure.

I think the my biggest frustration is I look normal, but I am not.  My family doesn't really understand, they try, but they don't get it.  I used to be outgoing and loved to be around people, but no anymore, it is just too darn difficult.  Speaking of mumbling, my wife has five brothers and they all mumble and speak with an accent that is unique to this area of Virginia (had trouble understanding them when both ears worked), now it is virtually impossible to have a conversation with them, kinda kills family outings.

[yardtick]

David,

I want one of those t-shirts.  I look good in jewel tones and white.  You can express post to Canada.  Pay Pal, Visa or Master Card?


Rick,

I understand your frustrations.  I get "You look so good, that's your problem."  Yeah I look so good because I work so hard at it.  My smile doesn't reach my eyes. 

I too still have the tinny taste, dry mouth, numbness and awful pain at my temple that shoots behind my eye, like right now. 

The mumbling drives me insane.  We need David's shirts.  The shirts could be very lucrative

Take care guys,
Anne Marie

[GM]

Rick,

Vent away, it will make you feel better.  Hope you have a better week...we're here for ya.

Gary

[4cm in Pacific Northwest]

I am in - can you send me one of those t-shirts to Oregon? 


Rick,

RE “ringing�

The only thing that works for tinnitus in noisy environments, for me, is an ear plug.  I have tried every brand under the sun

We bought a case of these (my most successful brand) and I have an ear plug in more often than not.
http://www.howardleight.com/family/index/1

So basically I walk around with this new fashion statement - of a “deaf left� pin on the AN side and a florescent orange earplug in the good side.


I wear the earplug in restaurants, stores with air systems, driving ... and it does reduce my ringing- tenfold.  (Why input in the good ear causes the dead ear to ring so – is beyond me.  ) The other thing I do to reduce the tinnitus is stay clear of salt… (and I would have to agree with Tony about too much caffeine can be an additional factor)

I got my ear plug in the good ear- so ok ...scream (just not at someone) … until it leaves your system.

HUG

4

[lori67]

Send one of those t-shirts to Nashville, please...

[LADavid]

Hmmm.  Seems like I hit on a new business.  Hearing impaired t-shirts!:-)

[Gennysmom]

Rick...I'm so sorry....I feel very lucky, I've had tinnitus for 20 plus years, and even though it's loud I've conquered ignoring it.  Thank goodness for that. 

I complained a lot about the same symptoms as you to my doctor, and every time he would come back with, "Have you thought about getting a BAHA".  I always said no.  I didn't think getting a hearing device that would just add more sound to my head would make that big of difference with those other things.  I've had a TransEar for two months now, and it's helped me a lot with my quality of life stuff post surgery.  In ways I could of never imagined, but mostly my speech discrimination and the feeling of displacement in groups because I don't understand or get things that are going on.  My doctor was right.  So think about trying it.  It's not a miracle, but I'll take anything that improves my quality of life. 

Good luck!  And David, I'll take a t-shirt!  I still don't get why people think that being deaf in one ear isn't a disability, but I get that all the time. 

[tony]

Note to Rick : no longer dream ?
Dream states usually occurr in certain states of sleep
- not the"deep" sleep but in the "half awake half asleep mode"
maybe your sleep patterns have been changed slightly
(brain stem changes can change these)
- or maybe you dont remember the dreams ?
(I used to like my dreams- the cheapest DVD rental
I ever got...)
Best Regards
Tony