Trouble coping with tinnitus

[Nannybee]

Just need to vent to others who know what I'm experiencing. The tinnitus in my AN ear has increased dramatically since my SRS treatment, and there's now a second sound intermittently in that ear. I'm coming up on the 1 year mark of my diagnosis and am having a very difficult time coping with the noise in my head. Distraction techniques and masking are no longer working and I would now rate it as a 9 on a scale of 1-10.

I understand the mechanism of tinnitus and realize that some will say it's my attitude towards it that needs to change, but it's impossible to ignore anymore.

[Karenk]

Just want to express my support and sympathy for you. It sounds really horrible. I have bad tinnitus too (not as bad as yours),but no AN. I can't imagine the stress you must be feeling.
I really hope it improves, or gets easier to live with.
Wishing you the best

[moeson]

Nannybee, please see my post in the pulsatile tinnitus subject. You can't let the tinnitus take over your life! I almost lost it when I couldn't get any significant sleep for almost a month. Once I was able to get over that hurdle, it made a world of difference.  You have to accept the tinnitus as the new normal. Unfortunately, there is no way around that until research finds a cure.   

[mesafinn]

Dear Nannybee,

Let me validate your post to the fullest.   Sometimes I just want to vent and be frustrated, too!  By and large I accept my tinnitus (also about an 8 or 9) but sometimes it can get the best of me, too.

I get it, I get it, I get it---and I hope you find some peace when you can.  In the meantime, I join in your frustration in solidarity!

P.

[Islandgirl]

Nannbee I just wanted to say I am in exactly the same situation.  Coming up to 1 year post SRS on 8th January and the tinnitus seems worse than ever and is agonising.  I also get pains right in my ear as if something is crawling around in there.  Can AN's grow more into the ear canal and not the other way ? I don't know.  I would rate mine at about 9 also and I pray it doesn't get any worse because it destroys my quality of life.  My tinnitus noise machines are on day and night because I can't live without them and I can still hear the hissing in my ear and the horrible microphone left on sort of sound.  I can assure you that it is nothing to do with your attitude because it is actually impossible to ignore. I consider I have tried everything and the one saving grace for me is that I do sleep pretty well, sometimes leaving my hearing aid in so that the tinnitus machine which I have right by my bedside drowns out the noise or trys to.  I believe I sleep well because I am exhausted with the daily trial of putting up with this.  I am thinking my AN must be getting a lot bigger but my first MRI after treatment is not until 31 January (am in the UK) so will have to wait and see.  I sometimes wonder if surgery would have taken the noise away but have read that it's not necessarily the case.   

[Alison]

Hi,
and hello again Islandgirl ! Sorry to hear you're suffering.

I'm around one year post Linac, awaiting MRI. Along with imbalance, tinnitus is my constant friend.

I hardly had any before treatment. But what I did have was more pulsating. Now I'd describe it as constant white noise, like the inside of a conch shell against your ear but 100 x louder. I think there must be a car engine turning over outside my window, or check the radiator valve for hissing and realise its in my head, not external. I think I read that someone had a decrease, maybe Paul W, who often posts in the Radio section.

Maybe if we've got swelling, the irritated nerves increase the tinnitus and it may recede, but maybe a knowledgeable poster could help with that point. It may be wishful thinking, unfortunately.

Keep on keeping on.

Alison x

[Nannybee]

Thank you fellow tinnitus sufferers for your support. Islandgirl, my MRI in September actually showed that the tumor was beginning to die, so your symptoms don't necessarily mean it's growing. Alison, my ENT actually told me that this second sound I've been having is a result of the nerve being irritated from the radiation and that things may eventually settle down, so you may be on to something. I had pretty much gotten used to the constant tinnitus I've had for years, but the addition of this new pulsatile one in a different frequency has tested my patience for sure.
Thank you again, it's just nice to be able to vent and actually have others who never, ever have complete quiet understand my frustration.
NB

[Islandgirl]

I agree that sometimes it does help and give you hope just to know others do understand what you are putting up with with bad tinnitus and that it's not just a case of using your mind to overcome it somehow or the other.  If only it was that simple.  I am sure you are right Nannybee that the louder tinnitus doesn't necessarily mean the AN is growing.  You wonder what is going on though because like someone else has said on the forum today, my AN seems to cause great discomfort or pain right in my ear just as if I have an ear infection which I don't.  As the AN is so much further back in my head or I think it is I don't understand why my ear should feel like this.  As Alison said we just have to keep going and hope things improve.  All the best to everyone.

[Anne S B]

I am four months out from Cyber Knife treatment, and am experiencing the same symptoms.  I've had tinnitus (sort of a low static noise) since before my treatment, and for the most part have been able to block the noise out.  But this new variable noise, overlaid on the overall static, is what is causing problems.  I'm okay as long as I am distracted by everyday noise, but the hardest time is at night.  The first night after the second noise began I couldn't sleep.  My solution has been to turn up a sound machine to the highest white noise setting.  I have also started wearing an ear plug in the affected ear.  Not perfect, but it helps.  I'm hoping that this is not a permanent condition.

[elsie]

I am 25 years post-op.  The only thing that made me at all look forward to my surgery was getting rid of the tinnitus that entertained me all day long with random musical notes on top of the buzzing and white noise (my son is a clarinetist and my tinnitus would mimic his practice sessions - makes no sense, I know.)  Unfortunately the musical notes vanished along with the buzzing, but the white noise in both ears got worse - definitely a 9.

You just honestly have to learn to live with it and not think about it, otherwise you drive yourself mad. I do find that when I am busy, or listening to music, watching TV or engrossed in a conversation it recedes to manageable levels - I live in an apartment and probably drive my neighbors nuts!

It most definitely is horrible to live with, I completely agree with all of you.

[opp2]

I find my tinnitus used to help me sleep. And if I remember too, putting ear plugs in before mowing the lawn or a loud concert or any exposure to loud noise helps. It truly is a case of getting use to it. I have constant white noise, and high pitched squeal when I look left or right.

I do get some pretty funky noises in my head that I know are coming from inside my head. Loud banging sounds, sounds like someone scraping a rock across at sewer grate, loud enough to wake me from a deep sleep. I am also into peri menopause so between the racket in my head and the hot flashes, night time is a real treat....

That being said I feel for those who have a loud constant tinnitus that draw their attention away. It must be so hard to adapt to. All the best.

[TexasSprinter]

Nannybee--hang in there!  My internal white noise / tinnitus machine started after my first AN surgery in Dec. 12 when I became SSD. I completely hear what you're saying (pun intended) about how it can drive you bananas and exhaust you. Still not used to it and don't know if I ever will. Venting is a good thing so keep us posted on how you're doing.

[Kristena]

I have to remark on opp2's comment on the squealing sounds when looking left and right. I get a high-pitched squeal when looking left (my tumor is in the right ear canal). How bizarre! What kind of nerve or muscle movement would cause that?

And then I just had to add the sounds of running water, bubbles popping, and cicadas about every other minute--on top of the constant white noise. Isn't life grand?

[ampeep]

Saw this post about tinnitus + 'extra' sounds.  I had GK in early Feb, and things were going smoothly until late April when dizziness, headaches, increased tinnitus, metallic taste hit.  Fortunately, the headaches lasted a week, dizziness a little better & hearing went from zero to maybe 5%.  Had a MRI which showed some swelling.

So every morning I wake up & wonder what kinds of additional sounds will be with me that day.  Have had pinging sounds, birds chirping, swooshing & raindrops!  Today's sound is pinging. 

[stephanieH]

I am 5 years post-op.  The SSD has been tolerable; I can't hear in stero anymore, and I have to sleep with my iPhone by my good ear so that I can hear the alarm in the morning.  I have other AN-related physical issues (left eye won't cry tears, diminished taste) as well as non-physical issues (self-alienation due to deafness), but the tinnitus has been, and continues to be, the worst part of my condition.  I am not retirement eligible, so I still have to work to earn a living, but I am wondering how long I can continue to work.  The constant siren in my AN ear has never stopped, and I believe it is, for the most part, what exhausts me.  I swear, if I was just deaf in one ear, I think I could handle it.  But the tinnitus is killing me. 

Is there anybody out there who's had to apply for social security disability as a result of tinnitus?  AN?  What about while still working?  With what results?  I can apply for medical disability though my employer, but, like others have experienced, I'd have to apply for social security disability as part of the package.  I worry about backfire if I apply for medical disability.  I'm also thinking that they'd think, "If your condition is so bad, (a) you should have told us about it when we hired you, and (b) you should have done something about it right after surgery."  Actually, I did go to HR after my surgery to check out my options, but I was so overwhelmed.  What if social security benefits were denied?  It wasn't a risk I was willing to take five years ago.  Plus, the HR person advising me was undergoing chemo for cancer.  If she could go to work, so could I, right?  I've worked since before I was 16, and would like to continue to work - just not 40 hours a week, and not with the stress/conflict I'm currently experiencing.  I just don't know whether it's worth trying to make a social security claim five years after surgery while still working.  I'm really tired, and I don't know what to do. Thoughts?  Referrals?