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.

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

How am I doing, 8 days after bi-lateral surgery

A lot of people asks me how I am doing, so I better post an update Smilefjes
If you want to know more about Cochlear-implants, click linked image below to read more…

pic-cochlear

Compared to the first surgery I underwent in 2009, this operation was a walk in the park. My surgeon specializes in gentle surgery, and I can tell you, my first CI-surgeon was a butcher compared to Dr. Med. Marie Bunne.

Some of my blog posts from the days after my first surgery (listed by date of publishing): day 3: Feeling beaten up… , Day 5 – From dull to sharp – in many ways , On the operating-table , Post-Surgery and The Day after , Tinnitus maximus terrorismus and some of the other posts from 2009 mentions the problems with balance (Oct., Nov. and Dec. 2009).

The upside

I have been up and about ever since day two. Today, 8 days after, I’m starting doing the annual accounting work for my company, nageldata.no. In other words, back to work, even if it’s just tedious easy work… First surgery had me bound to bed for two-three months!

The surgery-wound dressing fell off two days ago, and I didn’t bother replace it, since the wound is dry and looks beautiful. I mess as little as possible with it. It is itchy from time to time, but I just rub the skin close to the stiches, that’s enough.positive-attitude

Sleep has been good, except for the pain. The first nights I was, just like after first surgery, just deep into the sleep (medication plus recovering from surgery trauma). Bliss. Now it’s slowly getting back to normal, that is; waking easier by smell, light or movement. I expect pain from pressure from head lying on pillow on the “wrong” side disappears in a day or three.

I’m looking forward to a much quicker recovery this time, and that is not wish-thinking. I have plans to take up swimming as soon as the wound is healed and stitches are gone. That will speed up balance-recovery as well as improve the tinnitus-situation.

Speaking of tinnitus, there has not been much difference in tinnitus this time. The first surgery was followed by an explosion of tinnitus, mostly in the operated ear. But also in my left ear, due to the sudden silence (I could not bear to use the hearing aid, it wasn’t of any use. On the contrary, it was outright painful. This time it has been a few episodes in the newly operated ear, but they have been mild, like they were before the surgery. And there is the same constant sound it has been the last two years, sounding like a power relay station, that humming sound.

The downside

negative-space-9I’m dizzy, on the verge of nauseous. It’s quite constant, but I can’t move my head too much, or it’ll get much worse fast. Especially looking up/down, is a movement my balance-organ doesn’t like very much.

The suspected migraine aura thing is just around the corner most of the time. It feels like pressure behind my eyes, and the eyes feel very dry and almost as if it has been overexposed to direct sunlight (the words snow blind comes to mind). I have become much more vary of the symptoms now, and make precautions such as turning lights off, resting or taking time-out. The surgery didn’t make it worse in itself, but the dizziness combined with this migraine aura is very tiring and debilitating.

glassy_soundSound in my first CI is different these days. First i thought it was because I had a flu-bug since 3-4 days before surgery, and finally got rid of it on day 6-7 after surgery. But the “glassy” sound is still there, and makes me a little bit annoyed with speech-sounds. I isolate rather quickly these days. (Sorry about that, wife Trist fjes ) While writing this I’m force feeding myself with Pearl Jam, even though sounds make me feel dizzy. I just want to give it massive amounts of sounds in order to get my brain to get over being seasick. It’s really exhausting work, listening to something I really like, while the sound itself makes my head spin Trist fjes Something has changed inside my head again, that’s for sure. I think the pressure from the fluids inside the newly operated ear has an effect on both the vestibular system, as well as my inner ear. I suspect the situation will normalize sooner or later.

Tired, or constantly near-tired, is my mainly prevalent condition these days. I’m somewhat used to it, but after being on my road to (very slow) improvement the last 12 months, I realize that it comes with a rather significant mental price.

grumpyI’m back to being grumpy, quickly irritated. Having said that, these mental symptoms are milder this time, compared to after the first surgery. I think being aware of the above mentioned is half the cure. Also previous experience helps. I know somewhat what is happing, the anxiety isn’t as strong because of that. The rest of the cure comes when my physical condition improves and I’m going back to cognitive therapy in February again. Well timed, and I hope it will not be too many sessions. I hope to be finished with it for good before summer 2012.

Family life

My wife (we got married December 18th 2011 Smilefjes ) is my greatest support. I might have days where I just want to be left alone and not have to relate to anyone, especially in these recovery weeks. Having a family, including a 10 weeks old baby: Joanna, is more a boost than a burden. It reminds me of what I really want in this life, and how it could have become: without CI and the chance to hear again, I would be in a very dark place. Sure, I would have found a way to be happy and function, but it would probably been a much longer and harder road.

Ulf_091010_0204_biggerNow I get to be a father of a wonderful baby girl (not forgetting our two boys eitherSmilefjes), I have a great deal to look forward to, and I have the special one to share it with Smilefjes and her family as a new branch of my social network as well Smilefjes

I feel I have beaten the odds (of my life) in many ways, but half of that victory belongs to my beloved Mette too… Without her never ending patience, her loving care, her endurance, her positiveness, her stubbornness, her dedication and all those other things, we wouldn’t be where we are today.

Thank you for your love, love!!! ♥♥♥

Something wonderful happened today

I am having Easter with my parents, and have my son with me too. The weather is just incredible, with temperatures over 20°C and sunshine. It’s almost like summertime!

Since my first CI surgery, I have had a steady progress with both learning what sounds means, and understanding speech. Of course, my tinnitus makes it a little harder, given the fact that I’m still unilateral. It is hard work to hear with one side only, and at the same time “fend off” tinnitus that seems to have an endless variation to it, especially when listening scenario isn’t optimum. To put it short, I’m struggling, but coping, and getting better at utilizing what I after all actually have been given, through the miracle know as CI!

dozeoffWell, the wonderful part, is this: sitting in the sunshine, listening to birds chirping and tweeting and singing away. Last year it was almost too much, so many sounds and melodies, crisp clear and I had no clue as to what birds I was listening to. But today, I dozed off! That was a first for me, post-surgery, WITH CI still active!

To me this signals yet another level of adaptation that my brain makes. Slowly adapting to the new sounds, and getting used to them, rather than getting tired from them. In other words: a very good felling and a little bit like good news when I realized what had just happened Smilefjes

Great day, great experience Smilefjes

Happy Easter everyone!

Shy? Investigating social phobia…

Social-Phobia Social phobia, also know as social anxiety, is the third largest psychological problem in the world today… This diagnosis has a higher representation among people with hearing difficulties (and other populations segments), than in the average population. This site offers more information: http://www.socialphobia.org/

Background: Katharine Cecilia Peterson (Kate for short, brief presentation further down) has asked me (and others) to join her as a co-therapist for a research project looking into social phobia and the effects of cognitive therapy.

social_phobiaDisclaimer/personal experience: I can not claim expert clinical knowledge regarding social phobia, other than that I have experienced it on my own. To what degree I experienced social phobia is also a subjective matter. Also I am not an expert on cognitive therapy either, other than that of my own experience with such therapy, and it’s effect, regarding my tinnitus (reference to earlier blog posts relating to this matter: No cure for tinnitus, Life gets easier, Difference btw recruitment and tinnitus, Tinnitus cognitive therapy) I was open minded about the cognitive therapy approach, and did all the training by myself, in addition I had three hour long sessions with a professional advisor.

The text after the double line has been copied, translated and adapted from http://katharinececiliapeterson.wordpress.com/ , she writes her blog in Norwegian.

She is a psychologist, and has been a valuable contact for me personally through the years, since I have met her on various occasions/courses, and she works at the place where I received psychological therapy: Nasjonalt Senter for Hørsel og Psykisk Helse. She played a small part (HUGE gratitude on my part!) for my mental wellbeing today, as she helped me get in touch with the right people when I needed it the most. Currently she is heading a research project I will write more about in the time to come (since I am a part of the project, obviously)

Ok, let’s get down to the business at hand :-)

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Life is getting easier

transorbital_bilateralCII feel less commitment to this blog now, and for that I’m sorry. But as things develop in regards to the CI, so does my life. The hearing falls slowly into place, and I can start to concentrate on other more “mundane” (but still very important!) things :-)  This is a good thing for me, not so good thing for this blog. But, as CI 2 comes through, I’m sure I will get a need to make more blog material for myself and the world to ponder upon :-) More will surely follow soon enough.

It’s now around the 8 months post-activation milestone. The 6 month adjustment gave me a small bump into distress and psychological reactions, mostly due to the fact that I raised the overall sound-levels, AND increased the IDR from 60 to 70 %. IDR stands for Input Dynamic Range, and determines how much of the full sound spectrum I get delivered. 100 is a full spectrum, while 50 probably has 25% cut of from both the low and high frequencies.

(not totally sure about those last numbers concerning IDR, but I believe it to be the case. Please correct me if I’m wrong.)

I still struggle in noisy environments (looking SO forward to getting bilateral again! Hence the x-ray picture :-)  ), but now utilizes a preprogrammed setting that uses IDR 50%, which cuts down some of the high consonants from speech, BUT reduces “destructive noise” (in terms of speech comprehension) even more, making it possible for me to last a little bit longer in a multi social context (ie. larger groups of people).

Despite the aid of the IDR at 50%, I get really tired. I need one or two days of recovery after a 4 hour big-family session. This is a big improvement from before, mind you! But it’s evident that I still need more time to adjust and learn how to cope in various situations.

Tinnitus stress management conclusion: better!

lake The tinnitus stress management course I attended really has paid off! I recommend it to everyone with hearing problems, as having a bad hearing causes so much distress and problems.

For me it has led to a better life. Just as all the other small things I have improved/changed in my life, stress management has lessened some of the burden on me being deaf and enduring the torments of tinnitus.

Tinnitus now gets less attention by myself. The techniques I learned has somehow taught me to primarily prevent tinnitus to get started due to high levels of stress and fatigue, and also to stop it and react in a positive way when it rears its ugly head. It’s a mere notion of that the tinnitus is sounding, and I utilize the relaxation technique and think about something else. I’m so happy that the mini-course gave me such great effect. I feel like a better and calmer person too.

It was some effort invested, but totally worth it, take it from me!

:-)

The difference between “recruitment” and tinnitus

I just want to be very clear on the difference between these two phenomena.

They’re both auditory sensory related, but have some significant differences.

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