The tinnitus I hear – all the time

I just came across some sound-samples that simulate my own tinnitus. I wanted to share them, so perhaps people around me better understand why I am tired or unable to participate in social activities.

  1. This is similar to the "quiet" tinnitus that I have all the time 24/7 
    (I can barely hear this sounds when I listen to it, so I guess it’s pretty close to my own)
  2. Also barely audible to me, meaning it’s similar to my own
  3. Whistling sound
  4. This one is totally inaudible to me, meaning that I have this as tinnitus for sure…
  5. Screeching
  6. I also have “white noise” kind of tinnitus, but all the examples I have found are too high i frequency, so “white noise” with deeper frequency is another example (you just hafve to imagine the sound)
  7. All these above combined, and you might have a sense of the cacophony that is in my head at all times…

tinnitus

The only time I don’t have tinnitus, is when I am so preoccupied with something else that I “forget” it, or when I sleep.

Tinnitus get’s worse (more loud and more “present”, harder to ignore) when I have slept bad, or when I am getting more tired or sick like with a flu.

Why do I have tinnitus, even with CI’s?

I have been thinking back, trying to get a clue as to the reason why my CI-operations didn’t “solve” or remedy the tinnitus problem, and have worked out this theory:

from bad comes goodFrom around 2000 and onward, I cranked up the sound volume on my hearing aids every time I had a control or new hearing aid or simply needed adjustments. The result of this cranking up? I walked around with an aproximate loudness of 100 dB to 120 dB and more for 10 years! This might have resulted in the development of recruitment (norsk), hyperacusis (norsk), even more hearingloss (aka more rapidly deterioriating hearing) and tinnitus.

Furthermore my theory is that all these years of unusual loud sounds coming from my hearing aid, resulted in my brain (the parts receiving and processing the electric nerveimpulses of sound) underwent some structural change or that my sensorineural system developed some kind of damage. I am not a neurologist or expert in any medical field, so these are a laymans theories…

I feel that the health services in my country failed in providing adequate help to me in a reasonable time-frame. Maybe I could have been without the tinnitus, had I been helped 5 years earlier… I’m not bitter, I just want others to learn from what happend to me. And to prevent others to have to deal with the same things, if it’s avoidable…

Going deaf – twice

beethoven-777x934In many ways, the process I have been in after the second operation has been about accepting that I am nowin fact deaf. Yes, I can hear with the CI, but I can’t use them (to hear) all day. In fact, two – three hours per day is my present maximum dose of sound. I have to learn to live a large part of my life as a deaf person. Also it’s not just me, but my family has to learn to have a deaf person around them too.

Learning sign-language at Ål – School for deaf

pMy wife has identified the need for us all to learn sign-language. I have been too stubborn to realize it or initiate it. At the same time I have always been open to it, thinking that refuting something that might actually help, just because I don’t want to be deaf, is a counterproductive thing to do. So I am open to it, and we actually went to our first week of school, for the whole family, to learn sign language just a few weeks ago.

It was an eyeopening experience, and we will learn to sign in our family.

Nedsatt hørsel? Sliten? Kurstilbud

Nasjonalt senter for hørsel og psykisk helse arrangerer mestringskurs for deg med nedsatt hørsel. Oppstart januar 2013.

Nedsatt hørsel innebærer for mange en kontinuerlig kompenseringsinnsats. Du må kompensere mentalt for den informasjonen du mister, du kompenserer for muskulære anstrengelser i nakke og skulder, for nedsatt balanse, du bruker energi på å lokalisere hvor lyder kommer fra osv. Stress og følelse av utmattelse forekommer ofte i kjølvannet av nedsatt hørsel.

I forbindelse med doktorgradsprosjektet “Mestring av psykososialt stress ved hørselstap” har vi utarbeidet en kurspakke basert på kognitiv terapi og erfaringer vi har samlet fra hørselshemmede gjennom studien.

Dersom du er interessert, nysgjerrig på dette kurset – eller kjenner noen kurset kunne være aktuelt for, nærmere informasjon:
Sidsel Haaberg, tlf. 22 92 35 02/951 57 782
Maj Volden, tlf. 916 20 315
Jenny Meling Hansen, tlf. 941 54 472

Kurset koster egenandel (for tiden 307,-) pr. samling – opp til frikortsgrensen.

Se for øvrig: her.

Hearing Loss Linked to Three-Fold Risk of Falling – 02/27/2012

CI-activation log no. 4 – day 5 – Initial shakedown

Wow, what a week! I’m very tired now, but need to put some impressions onto writing…

Have already had many CI-moments, here are the ones I remember now:

  • the dogs at my mom; when they walk on the hardwood floor they give off a ticking sound for every step. I can detect them moving with sound only!
  • I can detect the chorus in rock songs that I know well; like “Girls, girls, girls” by Mötley Crüe (I also hear the motorcycle revving in the beginning!)
  • I detect my son singing in the car while the window is open
  • Jingling of my key-chain
  • I hear mobile phones ringing in TV-shows (never heard that before, ever!)
  • I could detect my sons heavy breathing in the car (he had just been running, racing me to see how far he can get from the garage before I catch up with him, I have to wait for the gate to open first)
  • I detect the difference between –s and –sh

I10-85-cochlea2 All sounds are very thin, high pitchy. That is due to the fact that my hearing residue before the operation all were located in the innermost curves of my cochlea. (from 1500 Hz to 200 Hz in the diagram on the left) That’s where the bass is. The entire frequency range that my hearing aids could amplify, and the vibrations the hair cells were able to pick up, were dealt with by the hair cells in that that innermost curve. (Because of the limited number of remaining hair cells in the outermost areas, I experienced recruitment.)
Now, all those frequencies go to the previously almost dead outer areas of my cochlea (20 000 Hz to 1500 Hz). Which used to be the medium and high pitch range of sound vibrations were picked up by hair cells. Because of this radical relocation of sound information in my cochlea, my brain has to rewire all the frequencies through neurons forming new permanent pathways to the old brain-recipients cells who did the actual “hearing”. Until that rewiring has completed, it will continue to sound high pitched and heliumish.

I wonder if the brain would be able to do the job by itself without the aid of any other senses? Now I’m telling my brain what sounds should go in there when I drive the car, or listen to that rock music, or hear my sons voice. Because I SEE the sounds. But what if I did not see anything, just had to figure out the sounds? I’m thinking my brain probably works both ways, some sounds it’s rewiring by itself, some are helped by my thoughts… Anyone with insight into how this process might work?

As I stated in the beginning, I’m really tired! Today I had a 4 – 5 hour period where I did nothing active… (very unusual for me) Last night my son snuck into my bed behind my back without me noticing it before it was too late (he had fallen asleep). That’s never happened before. Usually I have a very sharp sense of sight, detecting any movement very fast.

All kids are really great about my CI. They fancy the magnet and think it’s way cool 🙂

The first 3 days of my CI-life, I suspect I was high on adrenaline. Everything seemed more crisp and sharp. Now I’m almost like I was before I got activated. Dead tired, numb in my bran (just not as “muddy”) and with some psychological reactions, especially very sensitive to any stress, which gives me this tremendous tinnitus again, only now it’s in both ears, and it’s has changed quality in my implanted ear… more low frequency than before, or it’s just my brain who has already started rewiring? Where does the tinnitus come from? Auditory hair cells in cochlea who are trapped in an eternal death scream, or is it from my brain which screams for those frequencies, and when it gets nothing it creates it by it’s own?

I have been avoiding the issue of tinnitus, partly because it’s has been my strategy, to ignore it away and to death, and that has worked quite well… If the tinnitus thing continues now after the CI-implant, I will have to read up on the issue… And I’m afraid the tinnitus on my left ear will take over the job since my right ear now gets plentiful of audio information….

I listen to TV-shows and movies with both the CI and the hearing aid most of the time, sometimes I turn off my hearing aid for a while. While I drive the car I only use CI, since I get too much recruitment from the hearing aid ear. While I’m walking around in shops, ore doing daily chores, I use only CI.

I need the hearing aid to communicate to everybody.

Status update IV – early autumn 2008 – part 3 of 5

Physical health

Up to a few weeks ago my whole body felt good and I was without any chronic pains for the first time I can remember in my adult life. Back pains are gone, and the last remaining symptoms with muscle pains in my thighs has disappeared.
Headaches, the severe light sensitivity (photophobia) and some other smaller symptoms related to vestibular disturbances also diminished this last year. Even my worn knees are improving painwise, ie. they don’t pain me as much as they used to. I can almost run and almost walk the stairs without pain. All in all, this summer was a great physical experience. This last year I have taking a break from any physical training, because my body told me in the fall of 2007 that it couldn’t take anymore. Even swimming gave me muscle and skeleton pains. Clear signals that I could not ignore.

This summer, part of my vacation was in Poland with good friends and together with my son. We went on a one week trip to an area with great biking trails. And we went on long bike trips every day. This time my body responded well, and I have now started training again. Swimming 1-2 times a week, and some bike trips in between. I look forward to loose a few kilos this winter, instead of gaining them. My knees, who are still protesting in stairs, will thank me for that.

I stated earlier here that I have regressed a little, and this reflects and manifests itself in my body physically. My neck has become stiff again, and my shoulders are constantly aching and uncomfortable.

I keep waving my arms and tilting my head in all directions in order to keep it “loose”. I suspect that these symptoms come from stress are related to the breakup with my girlfriend. She means a lot to me, but the long distance relationship we’ve had since the beginning took it’s toll on our love. She couldn’t bear it anymore. I don’t blame her and I’m not bitter. She made me feel much better a whole year in this very tough part of my life. I hope I made her life better too. I think so. Even though her breaking up with me is still a little mysterious to me. I wonder what would have happened if I had gotten that CI long ago??? Would I have become happier and have more humor and strength? The future will tell what happens to me after the CI-operation.

Status update IV – early autumn 2008 – part 1 of 5

Hello again, world! Sorry for my absence lately…

It is time to summarize my condition and status concerning the CI-process again. What has happened since last time and what is current approximate time schedule?

It’s now a rough period for me. Things are heavier and I struggle with a lot of different things internally. It began this late summer. Personal life hit a speed bump and for the first time since I “hit the wall” back in 2006 I have regressed somewhat. The positive in this rough patch is that this time I’m more aware of what is happening, and I’ve been strong enough to avoid depression and destructive “artificial solutions”. This is very much thanks to the ongoing psychological therapy I continuously attend. And of course, it has mostly to do with my inner strength and my own reflections and attitude. My therapist constantly reminds me of that. It is about time I remind myself too. I feel like I have finally grown up, at the age of 36! Way to go, I say to myself. Better late than never 😉

Life in general

I have projects to keep me busy. I’m fixing up the apartment these days. Painting doors white (they had this dreadful dirty greenish seventies retro color with dark brown/black frames. Some retro is cool, but these doors were outright depressing). I paint both the frames and the door blades white and give them new brushed steel handles which is much nicer. Maybe it’s new doors of perception I am making? I certainly will perceive them differently after this refurbishment and renewal process.
I also have a long “to do-list” hanging on the refrigerator, so when I have the money for it, I’ll continue on that.
My son is at my place a lot, which is a handful for me, but very rewarding and pleasing. We have a lot of fun. Maybe I’m too much of a weekend-dad, but hey, life is too short to be an uptight authority figure all the time… My son gives my existence a real meaning. A reason to keep fighting and to stay in there.

I just started my own company. Got it registered and already have one big client which is enough at the time. Since I’m a beneficiary of a government support arrangement, I’m only allowed to earn a certain amount extra, which suits me fine. I’m not able to work that much anyway. So this arrangement is perfect at the time being. I’m starting something new, I’m keeping busy, avoiding the couch potato depression and making myself ready for post CI.-surgery.

My familys place in Sweden is a resource for me. I can do all sorts of physical labor things there, at my own pace and only the stuff I enjoy doing. It is a sort of therapy, to do practical things. When I focus at the task at hand, I can forget about the whole world and everything for a time. Things I do is various tasks with our 1959 Fordson Power Major tractor, building a tree hut for the kids (will eventually have three floors and be the hut I dreamed about as a kid 🙂  ), maintaining a patch of forest wood as a lumberjack. We’re also currently trying to fix up a garden that had been dormant for 6 years or so. We’re making a rose garden with all sorts of roses. That includes trying to make a whole new lawn on a patch that is about 25 x 75 meters.

I take kayak trips, photograph, do some woodcarving, welding, fix my car and play around in this great workshop garage that we have, fixing boat engines among other things. I play with the idea of building a go-cart for my son with a lawn-mover engine…

Also I’m making plans for the future. The business and my new company is part of that. I am now able to try it out on a small scale, make experiences, and can then make a more qualified decision when I am going back to working properly again. I look forward to that. Get out, meet people, be social, and enjoy my home and free time with good consciousness.

Status update III – part 2 of 3 – Challenges of tinnitus

tinnitus2 The tinnitus is a relentless as ever. Recently I discovered a way to explain how it sounds. I came to think of the TV test signals with the one-frequency audio sound. That is on about 1000 Hz and is almost the same frequency as my tinnitus. In other words; I have a constant TV-test audio signal blaring in my ears. I have a suspicion that the tinnitus has changed a little in the frequency the last months. The sound is a little higher up on the frequency-scale than I imagine it was 1 year ago… Tinnitus is the sound of my hair cells screaming goodbye forever. May they be revived upon the insertion of the CI-electrode arrays…

Distractions necessary

In order to distract myself from the tinnitus I either has to turn my hearing aids on and endure the “recruitment” and hyperacusia and wear myself out quickly, or engage my brain with tasks like reading, sudoku, various forms of art (I like wood carving, metal work, drawing, writing, photography and the processing of photographs in Adobe Photoshop and alike. Furthermore I like to get my hands dirty working on

alpine and rock plants on my balcony, plants in my living room, various tasks on our small farm in Sweden. Also I enjoy the diversities of the computer world wether it’s playing a strategy game like Command and Conquer, driving rally cars in Colin McRae Dirt, being a hyper modern deadly soldier in Crysis, or simply surfing the Internet, staying in touch with friends and family via email and IM. The computer is a big part of my life, especially since it was and will be part of my professional life and career. Oh, and “house chores” are also a nice distraction from tinnitus 🙂

OK, got a little sidetracked, but what I meant to say is this: I have to constantly distract myself with mental activity in order to keep the tinnitus away from the “alert”-consciousness. That in itself is depraving me of the opportunity to really relax and to build up some sort of surplus of mental strength. The results of this never ending battle with “recruitment”, hyperacusia and tinnitus is first of all extreme mental fatigue. It doesn’t take much to wear me down these days.

Consequences of this condition is that it takes more effort to concentrate. The endurance of concentration is shortcoming. Even concentrating on a dialogue is a challenge. To keep my own thoughts in order at the same time I have to concentrate on comprehending the things being said to me is a challenge. At the same time, my short term memory is failing me, probably from the exhaustion of all the other tasks that my brain is occupied with, thus giving me another task I need to concentrate harder on.

Fatigue and effect on body

The extreme fatigue I often experience puts limits to the extent of how much I can pursue my interests. It feels very limiting and prison-like. But I focus on the positive and whatever gives me joy. Having said that, I know that pondering a lot about the condition I am in isn’t necessarily a good thing. However I am such a person that almost never take the easiest way. I tend to analyze and scrutinize the hell out of anything, and then meet it with countermeasures that are carefully considered and self debated. It is a way of dealing with things that goes well for me…

The physical condition is linked to my psychological condition. The stress fatigue is sometimes limiting my capability of getting myself into physical action. At the same time, I have experienced that last year most of my muscle and skeleton-related symptoms (mostly pains and discomfort) has subsided. I have a theory that my body was in a state of stress just as my mentality was (still is) in a state of stress. My body just didn’t respond well to physical exercises. So last winters absence of extreme training has done me well in terms of reducing pains and discomfort in my back and neck especially, and subsequentially in my legs and shoulders (which was the reason I had to stop swimming regularly, last fall). My focus now goes to light physical activity and just having fun while doing it. Pleasure-driven and not self-forcing hard exercise seem to do the trick for me now. I focus a little more on my diet since I no longer burn so many calories.