I come awake but I keep my eyes closed as I wait and listen. For a few moments, there is nothingness—and then it starts.
First a hum, low at first but becoming higher in pitch as a deep rumble starts, giving me two sounds that don’t even have the courtesy to harmonize.
Then, with a slight shift of my head—or perhaps it’s the panicked realization that another day of noise is about to start—the whoosh sweeps in. Not like waves on a beach—more like a waterfall but without the grandeur, the beauty or the pleasure. This whoosh is high frequency and sometimes it lasts for only a few seconds and sometimes longer. Then it disappears for a while until the next time a sudden noise—anything over, say, 60dB—or head movement sparks it again. Sometimes it’s just random.
The noise comes uninvited and unwanted. Dorothy Parker, the famed American wit, would exclaim at the sound of her apartment doorbell, “What fresh hell can this be?”
I can tell you that this fresh hell is head noise—the sound of my tinnitus. I’ve had it before, but infrequently and in short bouts; only once was it even very bothersome. But it has been my companion now since early June, more or less constant in my right ear, which is the one with no real usable hearing and with which I scored a measly 8% word recognition at a recent hearing test.
“How many words did I get right?” I asked my audiologist.
“Two out of 25—you did better than I thought you would.”
“Which words?”
“Sight and keep.”
“I guessed right with those, did I? Yay me. I knew ‘keep’ was in there somewhere. It always is. Like my tinnitus.”
What Caused My Tinnitus?
Apparently there are a million or so reasons that could cause this fresh hell. Blood flow disorder, caffeine, salt, alcohol, high blood pressure, something growing on my acoustic nerve, cochlear hair cells waging war or some serious confusion between the inner ear and my brain. Oh yes, and stress. It’s always stress, isn’t it?
Once, when listening to someone describe their horrible tinnitus, I remember thinking, “Boy, am I ever lucky I don’t have THAT!” But now that lightning bolt has hit me and I admit to feeling a little outraged. But did I honestly think I was immune from it? That I’d paid my dues with a lifelong hearing loss, that things wouldn’t (or shouldn’t or couldn’t) get any worse? Did I expect a reward for becoming Ms. Hearing Health Advocate—like being spared the ear-thunder?
I guess I did.
Last week, during a particularly noisy period, I decided to donate my cochlea to science. But I want to do it now—before I’m dead. Take it, please, and perhaps replace it with an artificial one. Friends with cochlear implants say they no longer have tinnitus, but is that true of all CI users?
The other option is a snip-snip of the nerve, but I read in the latest issue of Canadian Hearing Report (Vol. 10, No.3 2015, page 9) that of those people who seek relief by having their VIII nerve surgically severed—30% still suffer from their tinnitus! OK, forget that, but if this head hell doesn’t go away, I will ask for a CI and I promise never to complain about it.
I would shave my head and wear a magnet with the manufacturer’s name flashing in neon lights. But even with that level of commitment, I doubt I would qualify in my province for an implant, because I function so highly, they say.
But for now, what can I do about it? I’ve checked some of the standard suspects: my blood pressure is normal, I go light on the alcohol, caffeine and salt, I’ve started increasing my water intake and I take deeper breaths. (I don’t know whether the last two are supposed to help, but they sound restorative, don’t they?)
I need to stay calm and seek help. I have an appointment tomorrow with an otolaryngologist (ear, nose and throat specialist) and hopefully he’ll say something more reassuring than learn to live with it. Maybe they discovered a miraculous cure while I was away camping last week. Failing that, hopefully he’ll suggest an MRI to see if anything nasty is visible and fixable. He may suggest tinnitus management therapies which work differently for different people.
Surely one of them will work for me? I’ll keep you posted.
Oh, Gael, I am sorry you are suffering. Like, you I have been blessed with minimal tinnitus (so far, knock-on-wood.) I have a CI, but I know many CI implantees who continue to have tinnitus in spite of their CIs. They say it’s better with CI, but it doesn’t completely eliminate it. There’s no easy answer unfortunately. (And, by the way, my CI is lovely, with a bright and colorful Skit-it on it and no brand name flashing at all!) Hugs and prayers for relief.
Thank you Bonnie!
Gael. So sorry to hear of the suffering you are having. Wish I could wave a magic wand. But..alas …I have no powers. Sending you hugs. It might help. Lol
Dear Gael:
I also suffer with tinnitus mostly in my left ear and some in my right ear. I thought that a Cochlear Implant would relieve this roaring sounds in the implanted left ear but it has not. My audiologist said that I retained residual hearing after the implant. So , that must be the reason I am still getting this deafening sound. The extremely LOUD sounds I hear are 2 separate noises. One is a flat line sound that I can match on the piano and the other varies from cricket- like sounds, massive frog croaking to a jet plane engine revving up. Sometimes, I take a mild tranquilizer so I can at least get some sleep since I mostly notice it at night when it is quiet.
During the day, the t.v. extraneous sounds seem to block most of it out. It still drives me crazy! If you find something that works, please post it.
Take care & a cochlear implant will not necessarily take care of tinnitus.
I have had tinnitus since I was a child in my right ear. It is masked by my CI but sometimes it’ll flare up once in a blue moon. My left ear had the tinnitus only after the implantation of the device and it went away when I was turned on! By the way I only scored 14 % bilaterally with hearing aids and I considered myself an excellent lip reader.
Thanks for sharing, Gael! The Tinnitus Treatment Toolbox is a wonderful, short book that touches on the topic. Worth the read!
My roaring tinnitus in every frequency started 45 years ago. I gave just had to learn to live with it. It can be worse at times-so loud i think my head will blow off. And then i had my first Cochlear implant. For the first time in 20.years I could hear and understand speech and enjoy music. And wonderfully tinitus in that ear isn’t present when I were my Cochlear processor. I had my second ear implanted 7 years later and suffered some debilitating tinnitus episodes. But 5 years later, while I do get tinnitus in that ear even when wearing my processor, I hear so much so well that it doesn’t matter
hi Gael,
Thank you for sharing. I also have tinnitus, for about 30 years in fact. I went to an otolaryngologist once and she laughed at me, since I am an audiologist and said, “you know, you need to live with it”. I do some pre CO testing, and I don’t know the insurance rules in Canada, but I would think if you only had two words correct you would qualify. In the U.S. It is less than 50% of words in sentences. Good luck!!
My implant actually caused tinnitus for me. Never had it before; now I get it intermittently, and very loud. 🙁
Indeed, what fresh hell is this. So many questions and so many without answers! The reality is there seems to be no real understanding of the physiology of the inner ear and what factors affect its function. I too have been struggling with sudden hearing loss and tinnitus of the left ear. And even though the hearing is still good in the right ear I had it tested recently because it also has a low ring in it as well. Why oh why does this have to happen. Idk. Somedays I get along just fine and other days I sink into a funk remembering what it was like to hear well before all this happened. I hate it when people like my husband who is an ENT tell me to get use to it. I do not want to get use to it dammit. I want my hearing back. Oh well now I have my own personal connection to outer space as I joke about it to my kids to lessen their concern. If it is any consolation there are people out there who share your dilemma and frustations such as myself. I will hold our collective hope in my heart and prayers.
Hi Gael,
Just thought that I would let you know that I am thinking about you and hoping that you can find some relief. As a tinnitus sufferer for the past 25 years first in the left and three or four years later in both ears mine being a steady low ringing sound pretty much even in both ears I have been “making the best of it” so if you come up with anything that is not just another empty promise it would be great to hear about it..no pun intended.
All the best, Ron
Hi Gael
I am sorry to hear about your flare-up. I get tinnitus flare-ups too and it is no fun. So far they have always come to an end eventually. I know people say to cut out caffeine, but I actually find caffeine helps prevent it for me. Odd, right? Best wishes for a return to quiet soon.
Gael,
You have to know this is the third time I have sat down to write a few lines about how I lost my ability to hear in my left ear. So now the truth is out. Not only am I hearing impaired, I am technologically impaired as well. Oh great, if I ever muster up the courage to get a hearing assist device I won’t be able to use it!
I lost most of the hearing in my left ear last March while riding my bicycle in a fundraising event. Yup its true do not pedal your brains out or you will blow your ears! Just kidding! I love my bike and I am still pedaling. Actually at the time I did not realize how serious the problem was as I had never had ear problems before this…….ever. I remember the ear seemed to plug and unplug over the next few days. I mean what does one do with that right? We have all had our ears do that for one reason or another. I feel so stupid in retrospect sometimes because I feel like I should of done something as soon as it started and might have spared my ears. As it is I have very little usable hearing in that left ear and my own personal connection with the New Horizons satellite. I always dreamed of having super powers. But you know they are overrated. …..you know these super powers. It would be real nice to just have normal hearing.
High pitched ringing in my left ear. At times, my whole head rings. 24 hours a day, 7 days a week. Wish I had an answer for all. Know that you are not alone when you say how frustrating it makes life. Tyonal helps me at times. Have a hug and take care.
Hi Gael, I started to get tinnitus when, after working in a noisy factory on night shift, after it was time to sleep during the day. I would lay in bed, close my eyes, and assign a different instrument to each sound I heard in my head. This self-created ‘symphony’ gave some meaning to the otherwise scattered, random noise – and this helped me to fall asleep. Daytime tinnitus was probably there as well, but hard to know, what with all that factory noise happening.
I question the perception you have about being too high functioning to be approved for a CI. If that is your true wish, Sunnybrook hospital has lowered their threshold hearing loss that makes people eligible. For myself, in 2008, with about 35% hearing at the time, I was allowed to have an implant. I did have to push them for a year and a bit, because back then (~ 2006) they wanted candidates that had profound, long-standing low-quality-of-life circumstances. I had to reason that nerve damage caused hearing loss can never get better, and that my quality of life would only decrease as well. Today, I believe that due to greater government funding, more and more CI operations are happening, and the candidate criteria has lowered. I highly recommend a conversation to investigate your candidacy, and to get a realistic appraisal of whether your expectations for improvement with a CI are sound. Also, Sunnybrook has a networking program, where CI recipients allow those considering the operation to contact them and discuss how is was for them.
Wishing you all the best,
Laura
Gael,
I am so sorry to hear about your troubles.
Like you, I started hearing these noises in my “deaf” right ear in early June after a head cold that lasted 3 weeks. 16 years ago, I had experienced a sudden hearing loss in that ear that left only minimal residual hearing, but very rarely was I bothered all those years by tinnitus. And now this! It is a constant low humming sound, with occasional clicking or something like whistling. Fortunately, I sleep well, but it drives me crazy during the day and makes it so much harder to hear clearly with my still functioning left ear. I am due to see my ENT in a few weeks – but after all I read I don’t expect much help there. Still, let’s hope!
Tinnitus is hell. The only absolute solution I can see for it is suicide. There are days when it feels like that would really improve the quality of my life. Lol. However I’m not ready to take that step. After a catastrophic first year with tinnitus and hyperacusis, I did manage to improve with tinnitus retraining therapy, acupuncture, AyurVeda, hypnosis, Klonopin, tai chi, yoga and homeopathic remedies. Oh yes I forgot the dental work to even my bite, the dental guard and also craniosacral therapy. All this is cost more than $100,000. And things got seriously worse about six months back. Life is a real struggle. I am once again wearing the white noise devices and of course I play an ocean sound and music as background. At least I know that life is not eternal and that someday I will be out of this misery. Sorry to be so grim but this is a hellacious condition.
I feel so bad for you ! Sending you hugs ! Wish I could help !
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Hi.
I know this is 5 years too late but I’d like to know what happened? Did you get a CI? I’m too late to tell you I didn’t get tinnitus until after the surgery and implantation of my cochlear implant.
My life is hell! Can’t sleep! Deaf without it and the noise! The high pitch sounds/ screams! The engine sounds and humming! The whooshing sounds! Sometimes all 3 at once!! I wake up as tired as I go to bed. This is awful! Any help?!
I had tinnitus way before my actual hearing loss. My dad had it and described it as crickets. Mine is different levels of tones or humming type sounds. Right ear only for many years. Then I lost my hearing on that side due to a virus I had. Hearing aid first then almost total hearing loss and cochlear implant. Neither eliminated the tinnitus but by hearing better, I focused more on what I heard and learned to tune out the humming. Now some hearing loss on left side and tinnitus there too. I use the TV playing, or music, as distractions and a fan at night for white noise. I focus on the sound they make and not what I hear in my head. The more you listen to the tinnitus the louder it gets. But ignore the tinnitus and it gets quieter. I promise you it works. It just takes diligence on your part. Good luck and God Bless.
Me too!!! I hate this. Wearing my device only amplifies the sounds. I’m constantly on the verge of throwing up the sounds make me so sick. I. Hate. This.