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…

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 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

In 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

My 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

http://m.hopkinsmedicine.org/news/media/releases/hearing_loss_linked_to_three_fold_risk_of_falling

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
If you want to know more about Cochlear-implants, click linked image below to read more…

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.

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

I’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.

Sound 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 ) 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 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.

I’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 ) 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.

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

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!

Well, 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

Great day, great experience

Happy Easter everyone!

Shy? Investigating 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.

Disclaimer/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

I 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!

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.

Tinnitus stress management and other things CI

Spring is right around the corner and the sun is shining upon us again This winter has been put to very good use by yours truly. I’ve learned to hear again!
I consolidated with my fabulous girlfriend, and we have purchased an apartment together  
I got a better relationship with my son, being able to really TALK with him. (and bringing the right responses, now that I’m not always tired out of my skull).
And I have taken up cross-country skiing again. It was more than 15 years since the last time I roamed the ski tracks in the Norwegian woods

6 month re-map milestone

I had a re-map a week back. That was my 6 month appointment. This time we increased the volume of all frequencies again. In addition to that, I have now one program with increased Dynamic range (70%) and one program with decreased Dynamic range (50%).

Dynamic Range is the range of frequencies that are accepted into the implant by the microphone and processor. 50% means that 25% of the frequencies are not used in either side of the frequency range. (meaning both very deep bass and very high pitch is reduced, keeping only the sounds in the middle.)

I had 60% the last few months. I use 70% mainly, find it much more pleasant to hear as much as possible. But it is tiring too, it takes time for the brain to develop noise filter skills. So the 50% program is used when I am tired and need to shield myself from some of the ambient noises around me.

Ambivalent regarding current sound quality

I am not happy about the quality of sound… After this mapping it feels like I took one step back in terms of speech comprehension. When I switch back to my previous program (yes I kept that one, think it was a good move in terms of motivating myself) it just sounds really, really bad. So the new adjustments are definitely a step in the right direction, but it seems like every time re-mapping frequencies are done, my brain needs a new time of adjustment… Tiring, somewhat de-motivating and a little bit frustrating. But these issues are, by all means, peanuts compared to what lies behind me at this point. I am simply super-impatient.

The speech of others are super crisp, sharp. It is hard to get used to, after decades of dull, watery “cottonish” mumble-jumble. It is kind of like touching an area of skin that has been burnt; very sensitive, painful and unavoidable. The nerves that receives the electronic impulses from my implant feels raw and exposed.

Tinnitus and stress management

I’ve come a long way with my tinnitus management self-study course. I’ve learned to control the level of stress in me, both psychologically and physically. Yes, the stress is there. the stressors will never go away. BUT, I can better control my own stress-reactions, and I can get rid of the worst tension, and hence tiredness, irritation and other related symptoms are lessened.

The self-study course works like this: (very boiled down)

First you learn to relax muscles “manually”. When you have relaxed many, many times, you learn to do it quicker and easier. It’s like learning anything else. At first it’s a little hard and awkward, but when exercising and repeating enough, the results start appearing.

The key-words are muscle awareness and relaxing, then breathing technique. Breathing while stressed is short, shallow and chest originated, whilst breathing from stomach forces and enables for longer and deeper breaths, thus tricking your body into believing you’re not stressed. When relaxed all our breathing is originated from our abdominal region, our chest does not move much.

The concept is quite ingenious: when you and your body start to remember how to get to the relaxed state, you can embed some memory techniques to invoke that memory really fast (ie. a code word while breathing out slowly). By bringing that memory to the front of your consciousness, the pre-programmed and previously learned and experienced relaxation kicks in.

Personal gain and experiences

These days I am much more conscious about my level of stress. Every time I drive my car, I notice the stress coming (traffic is full of stressors). I use the time while driving in the car for training to get my stress down.

I get stressed when playing an online-game, I train for getting rid of the stress then as well.

I feel like I’m getting better, psychosomatic. Less pains, more rested, I am healing faster (I dislocated my shoulder, and a week later I am almost without pains!) Last time I dislocated my shoulder, I needed physical therapy and did months of training to get painless again. (of course the damage was much more severe back then, but a dislocated shoulder is still a major pain   )

I feel like I can endure more, but I am not sure if that is due to my stress management training alone. I guess it’s part that, part CI sound improving, part more daylight, sunshine and warmer temperatures

Things are improving, I’m penetrating the dark clouds slowly and surely, the blue sky is closer than ever

Tinnitus management course step 1

As promised, I will write about the tinnitus management course I’m following. First of all, this is not a miracle cure. The tinnitus will not go away. It is a way to provide me with the mental skill to control the tinnitus through relaxation and focusing on mental images in order to suppress the tinnitus to the back of my consciousness. It takes weeks. But it’s only like 20 – 40 minutes per day. When I have learned the skills, it’s supposed to be an automatic part of me.

It is a training regime I have started on, which is important to follow, because the training slowly will give me the ability to “turn off” the stress in my body, thus making it less likely that tinnitus dominates my thoughts. It has a lot in common with yoga. Nobody learns to ice-skate in one hour, it is an exercise that takes hours and hours of trying and falling. In the middle of this training, I constantly remind myself, that the goal is to control the tinnitus, rather than the tinnitus controlling me. By following this regime, I believe I will be able to do just that. My motivation is strong. You will need motivation to see this through. It can seem pointless and without effect. But I have chosen to believe that this really IS something, and that it IS working

The first step is about learning how to relax my muscles. It is done by sitting undisturbed on a chair with a straight back, head up, resting on the neck. The goal is to sit as effortlessly as possible. Soles of your feet should be 100% in contact with floor or ground. It is very much as the man in the picture I have included here. It is also important to be in solitary, i.e. disturbances are not welcome in this exercise. It is just as much a physical one, as it is a mental one.

The point is to calm down. The details on Step 1 follows…

Bad “hear” days and other things

Happy New year everyone!

I am a bit frustrated these days, and that frustration has several sources. I feel a bit stagnated and stuck, I can’t track any sound improvement. On the contrary I feel like sliding backwards every time I’m a bit tired. It is like this: when I’m tired, my brain has less energy, less stamina, and the automatic sound processing deteriorates noticeably. I’m having some of those bad “hear” days, these days.

Other reasons for frustration are personal reasons due to me looking forward to move together with my girlfriend, but have to wait for other parties (paper mill stuff) in order to realize it. And the last prime reason for my frustration is that it is absolutely freezing these days (below –4 F / 20 C), and I can’t find all my winters garments as I’m living at two locations simultaneously and both are a mess at the time.

Alway look on the bright side of life!

But on the bright side of life (as Monthy Python likes to sing about   ), chaos and challenges is almost always a good thing. A new order rises from it, bringing new perspectives and a feeling of a fresh start.

I’m not constantly working as hard as I used to, in order to understand speech. (I think I manage that part about not working too hard quite well these days, partly due to the seasonal darkness and feeling of powerlessness.) I’m focused on resting up…

A big life altering decision – a new career

One big important thing that I recently decided upon, was that I’m going to pursue a new career. I’m going to put the IT-career on the sideline, keeping it as a bi-income via my own company, and as a hobby. The IT-knowledge will be useful to me no matter what.

This new career involves me first going back to school for 3 or more years. That fills me with both anticipation and fear. Looking forward to new input, knowledge, making new acquaintances, experiences and fearing the situations where I can’t cope in terms of lectures, meetings etc. Will it, as before, be too much for me to overcome?

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

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.

CI-activation log no. 1 – day1 1st impressions

OK, finally activated!I’m only one hour into my CI-era, and I sit at a hospital canteen-table next to my good girl, Mette. Her hand is lying warm on my thigh, relaxing me.

I start off very easy, all my sound settings on the Advanced Boinics computer programme “Soundwave” are set at the bottom. It seems I’m able to pick up auditory nerve signals very good. Meaning that I’m sensitive to them. That’s a good omen in my book.

I’m very conservative in terms of setting the sound too loud, many thanks to Abbie who wrote a post about overdoing that part meaning to be offensive. It ended up with her getting an overload.

But in the 15 minutes from my audiophysicist said that now was the time for my first venture out in the audioworld with my new cyborg ear, I discovered that I had maxed out the volume already. So before we went out the door, he made a second programme with an overall higher volume. I have now had that programme on and the volume wheel has been cranked to max. Looking forward to get back to adjusting in more details at noon today (45 minutes from now   ).

Will be exciting to see if all frequencies are just as good, or if some frequencies will need more/less amplification.

Sounds I get now is just morse-code. It literally sounds like morse code. My own voice is like bip-bip-beep-bip-beep-beep.
Sounds I have received as morse code so far are voices. My own voice, Mettes voice, and the audio physicists voice, and faintly other peoples voices. Cars, trucks, trams and buses don’t give me any sound sensation through my auditory nerves. When I closed my eyes I could sense the sound of the powerful sit-on-top-drive-like-a-car lawn-mower 10 meters away through the air-vibrations hitting my body… No auditory response there.

I had my first-CI-moment: I detected the sound of my own shoes! It came through like this beep – - – beep – - – beep…..  I stomped my feet, and yes, there it was; beepp — beepp.

It’s a strange sensation, it’s almost like a submarine sonar giving off it’s ping sound: PING! ——  (and the weaker echo comes back: bip). Feel like I hear what’s NOT there instead of hearing the actual sound… I know intellectually that it’s my brain trying to make sense of the input, but I have a need to express these sensation in words, I want to remember them and share them…

I found other CI-users  explanations and variations in sound sensations very interesting. And because I read them, I have been very well prepared today. I’m not afraid, I’m just curious on how my adventure will turn out to be, and I enjoy every new discovery, such as the beep-beep of the chairs being moved here in the canteen. I had morsecode telling me that some sound was being emitted, and I looked up at the guys at the next table  and they were laughing loud.

Yes, my CI is already doing me a service. It can tell me that there are sounds out there.

The tinnitus is roaring constantly, but the morse-code is louder.

I’m tired already, every bip-beep makes me feel slightly nauseous, on the verge of making me dizzy. Think I’m doing pretty well so far. Beeps come in from all sorts of sources, and I detect the beeps and bips.

Time to give myself a little break.

Day 5 – From dull to sharp – in many ways

Day 4 and 5 post surgery has been real “improvement” days. The worst pain from the incision has given way to more itching. It feels good in the way that I can feel it healing up nicely

The first pains was kind of all-over-pains, now they’re sharper and more precise and local.

The nights are a bit restless, since I wake up several times because of the pain both from the wound itself, as well as pain from the inside of my ear and discomfort from lying in unfamiliar postitions (more pillows etc). BUT, I sleep thorougly well, and even quite long into the morning. Usually I wake up when my girlfriend gets up or her son (4 years with ants in his pants) comes into our bed (very early!). Not so these days. I guess I sleep quite heavily. That is so nice, it’s been years since On a sidenote; usually I sleep with a mouthpiece in order to prevent sleepapnea and common snoring (gives me sore throat). That has proven too painful these post surgery-nights, since one of the muscles attached to the skull and jaw-bone has been cut in 3 places (parallell to the muscle fibres as I understood it, in order to make room for the receiver underneath the muscle). It has been no problem using it for chewing, but the muscle has been swollen and therefore shorter than it usually is, thus resulting in too hard a bite and too much strain while using the mouthpiece. I slept just fine without it, no problem there

Yesterday (and the days before) I found some strenght to do a little “chores” on my new over-the-top-bought-for-the-occasion-laptop (Norwegian link here), getting up to speed on both the Tour the France (watching live camera transmission of the last stages on the internet) things near and dear to me (Facebook etc) as well as catching up on e-mail and such. I planned before the surgery that I could be staying in bed for quite some time (up to weeks all depending!) and needed a decent tool for getting back into work while being bound to bed. (it is also very nice to watch movies on   ) It was a smart decision on my part. I’m feeling I have purpose even though I’m “chained” to bed. I do as much as I can. And I can do much more with this tool than I otherwise could have… It’s kind of what makes us human; the ability to foresee and plan something    (feeling very clever now hehe)

First decent walk outside was yesterday in the evening, but a 100 meters and then sitting on a chair for an hour or so playing a boardgame was too much. I had headache (like normal headache) and throbbing pains on the side of my head when I went to bed. It took a considerable amount of time and a couple of painkillers before I drifted off to sleep… I didn’t take a walk today. Last nights experience scared me a little.

It dawns on me that I have really undergone major surgery, even though I suspect the eminent professor Claude Laurent who operated on me has used a new incision technique which is less intrusive and traumatizing method of inserting the implant (than the previous C or S-shaped incisions).

The incision is straight and goes right behind my ear. The magnetic receiver underneath my skin has been placed almost directly above my ear. I expected it to be placed further back, but after pondering the “new” location I have come to the conclusion that it is probably better than having it further back. Real-life experiences will tell in time  

(the image to the right has been taken from otosurgery.org and shows an implant that is located slightly further to the back of the head than it is in me (I believe))

These days I feel as if the reciver part of the implant (the biggest piece) is pressing my skull (above my ear) to the extent of being uncomfortable. I have no doubt, however, that this sensation will disappear given time.

Right now I have a rather sharp pain inside my ear. This pain emerged on day 3/4 when the pain from the fleshwound (incision) subsided slowly. I guess it’s two-sided pain; one part from the hole inside my inner ear (the surgery and the insertion of the electrode) and the other part from internal pressure due to swollen tissue, clotted blood etc. (I was snotting blood the first two days)

Tinnitus is back to “normal volume” (which I’m kind of used to) after having rather load fits on rather frequent occasions the first days. The only thing tiring now is that I have to lsiten to the tinnitus all the time. Look forward to activation! (waiting for letter from hospital about date for that one!)

Dizzyness is unchanged, I can’t turn my head much in any direction before everything “swims”. Just changing the weigth on my two legs is enough movement of my head and the vestibule in my inner ear for things to become “fluid” for me. A nasty feeling. I guess I have a slightly better understanding of what sufferers from Ménière’s disease have to endure… It’s as if I’m severly drunk without the effects of alcohol… Kind of…

Right now, the dizzyness is the biggest issue for me, hindering me in everyday chores.

I was off the painkillers from day 2, but have taken them as needed, not much anyway.

Patience, understanding and love

When I started this blog in late 2006, I had a feeling it would be a long journey (that’s why I started the blog in the first place). That suspicion became stronger after receiving a letter from the hospital saying that they had an obligation to operate on me before 2010. What I had ahead of me back then, has been more or less as expected. I was prepared for a long haul.

“To exist is to change, to change is to mature, to mature is to go on creating oneself endlessly”. ~Henri Bergson

My every day life has changed a lot. More activity, never a dull moment. I wish the day had more hours   I’m not “waiting” for the CI anymore, I let that struggle go this winter, focusing more on my own life and people around me. (Mind you, I still need the CI desperately!) I’ve had enough of trying to understand why Rikshospitalet are not able to operate more than 50% of what the Health ministered ordered last year (see some of my previous posts). I don’t think my engagement into this issue has any meaning or bearing anymore. I’m sad to say this. (I hope I had a little impact, but I have achieved no real results, to my knowledge anyway.)

Waiting, waiting and more waiting. In fact, it has been so much waiting, that life happened during the waiting

And life is what everything is about, isn’t it?

In retrospect I can with great certainty conclude that I did all the right things back in 2006 and 2007. (You have to read the past posts on this blog in order to know what has happened to me and what I have done    )

I have managed to get my life back. I am in a place that is brighter and better, even though it has it’s challenges. I am where I want and need to be.

I am able to cope with life, and take care of my loved ones and myself (somewhat).

But I’m walking a fine line. Experiences from every day life tells me that I have very little to go on. Only thanks to the slow process of acknowledging that I’m by definition deaf, I have come to understand better what the process of loosing one’s hearing does both mentally, physically and socially. And take some precautions in order to preserve myself from exhaustion.

I am deaf, I use hearing aids to take advantage of the very little hearing residue I have left and thus suffer from a rather severe case of “recruitment”. I have tinnitus on both ears, get tired really quickly in general (and then the tinnitus really howls!) and have no chance of keeping a regular job. I need all my strength to take care of my son, my dearest girlfriend and her son, and last but not least, myself.

I had to fight to get my life back. I had to fight with my willpower in order to do all the right things in many areas of my life. I changed a lot in my life. I changed myself in many ways. I changed how my family perceived me. I had to get them to understand me better. And it helped.

In a way I had to try NOT to fight, too! By accepting my fate and my condition (it is by no means a surrender, mind you!   ) I have learned that my mind and willpower can work against me as well. Rather than standing tall in the strong wind, risking to break something or get hit by flying debris, it is better to bend over and lie down on the ground and survive. Sometimes it is much better to accept fate and accept conditions, rather than opposing the facts and use a lot of energy trying to get things my way. The consciousness of this “bend before you break” is helping me in many areas of my life.

This blog will remain active at least until I have received my first CI by the end of this year, but it will be less active due to lack of time and energy to keep it updated.

I have learned to suck things up. Take a punch. Even though life is hard when it comes to my health right now, I have so much to be grateful for. I will not allow myself to turn sour or negative. What happens happens. I’ll do my best and want to keep a positive mind about everything. All is good until proven otherwise

I’m going to use this experience to improve my own life in the future. No matter what. There is another day tomorrow!

“If we don’t change, we don’t grow. If we don’t grow, we are not really living.” ~Gail Sheehy

Promising results for tinnitus treatment

With the use of magnets, in so called “repetitive transcranial magnetic stimulation” (rTMS), a trial run has showed promising results in the treatment of tinnitus.

Read more about it here:

http://www.thedeafblog.co.uk/2009/02/magnets_stop_the_nightmare_of.html

Status update IV – early autumn 2008 – epilogue

You people must become fed up with all these “Status update”-posts, no?
After this rather long and 5-way split Status update, I realized there are some other health issues that needed addressing.

It also serves as a reminder to myself that the purpose of this blog is mainly to be like a medical journal (for myself and others who might need the info).

Status of Tinnitus: rather unchanged.

It is still sounding the same as it did when I started being bothered by it, with a rather constant “UUYYUUUUYYYUUUUYYYUUUUUYYYUUUYYYUU….” around 1 to 1,5 KHz. It’s worst on the right ear, and it varies in intensity (or strength/volume) according to how tired I am. I don’t know if that means that the tinnitus is worse because it’s actually louder or if it’s because my tiredness makes my brain more susceptible. It is a matter of perception I think…

General health, back to regular training

I have started training again, after a whole year without any training regime whatsoever. The body seems to respond well to the exercise as opposed to one year ago when any exercise gave me pain and aches in both bones and muscles. My goal is that my little overweight shall become less during this winter instead of becoming more as it usually does during the dark season.
The chronic pain in my knees is fading. This is a little miracle for me, because it was troublesome to just take the stairs at times. I thought the chronic pains was a one-way ticket into some sketchy knee-surgery-history. I’m glad I was wrong
I have become conscious about the fact that I can not and should not run anymore in order to save the knees from more wear. So my focus has been switched to alternatives like kayaking, biking and swimming. And that is all right by me.

High permanent stress levels leads to immune system deficiency?

I have a theory that the level of stress in me the latter years made my immune system turn on my own body as a warning mechanism (the signal being: slow down!). I don’t know if this makes any sense, but what if the immune system reacted so strong to the state I was in that it actually attacked parts of me it was not supposed to attack? I know, it’s a wild theory, so if anyone has any views on this I would appreciate any comment. I googled on the term “autoimmunity”, but those articles where mainly oriented toward causes for arthritis and diabetes. I didn’t go deep though…

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

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.

Status update II

Where to begin??? Well, since my last “Status update from Nov. 6th 2007” (where everything is still valid, I won’t repeat everything) some things has changed.

Overall everything is a little bit worse. Tinnitus is loud, perhaps more constant, fatigue is a bit more severe. I get tired a lot faster from a lot less sound. Headaches are frequent.
It’s gotten to the point where I can’t stand the sound of pretty much anything. Even faint fan-noise is uncomfortable. I’m pretty much intolerable to any sound now.
Less than a year ago I was able to listen to music, now I have my hearing aids turned off more than they are on… I rely more and more on my lip-reading skills…

Bilateral CI-operation is still my number one priority. Other than that I continue to take care of my 7 year old son, my fantastic girlfriend (so grateful to have you in my life, honey!!!), family and myself as best as I can. My psychologist has helped me to be able to be comfortable with the fact that there’s not much more I can do. So instead of feeling lost in a black hole, filled with despair, I relax as much as I can, think positive as much as I can and so on. But I have to admit that some times I get the blues and wished that CI-operation could be in the past instead of in the future. But then again, that’s something to look forward to, right?

I am now at about number 60 on the waiting-list for the CI-screening. About 4 months ago I was at the 100th place. If that pace holds, it means about 10 patients a month, which means I could be looking for an appointment at around 6 months from now… Say august… I certainly hope so!!! I really shouldn’t complain, because I’m a lucky guy, really, who live in Norway and these kind of operations are funded by our health-care system… But things can always be better! If not for me, than maybe for the future post-linguistic-deaf person who need CI…

It will be interesting to see how the hospital will respond to my request for doing both ears simultaneously…. It’s not at all standard procedure, I know. It’s just that there’s really no alternative for me, so I might as well get both ears done at the same time…

I think the technology is ripe (Advanced Bionics Harmony with HiRes90K implants that can do 120 frequency bands), the surgery-techniques have developed and are pretty secure. Besides, operating one ear at a time is less cost-efficient than doing both at the same time. 300 000 NOK for one, and 500 000 NOK for two. That’s a whopping 20% saving! Or 100 000 NOK in plain numbers. Not to mention, my recovery will be over once and for all, and I can get back to the workforce sooner.

If the surgeries are done one at a time, I guess it will be almost 3 more years before I’ll get through it for good. In total that could be 6 years (!) of my life dominated by this CI-process…

The long walk…

If I also take into consideration the time I spent dealing with the fact that I slowly lost my hearing, I would have to add a few years to those 6 waiting for CI. I also struggled with work since 2002. I’m up to almost 10 years of my life!!! If everything had been optimized, it could have been as short as 2 maybe 3 years….  Something could have been done a lot better by the health-care system and by the governments…

I hope that I will be able to work and function even with one CI, but I know it will take more strain on me. I know how it is to be deaf on one ear, too (all those times with defect HA, no good battery etc. etc.). And remember, CI is not fixing my hearing to a 100%, but maybe 30% of perfect hearing. Those 30% is certainly a lot more than the 0,5% I have now…. In fact, it’s more than I ever had. All my life I had approximately 20% residue hearing… And if I get more sound from all over the frequency-chart, I will be a very happy normally functioning deaf man!

Other than my deafening, my knees are shot, I’m still waiting to hear from the hospital after the initial response that my request has been recorded and acknowledged… I’m not able to do any physically challenging things like running (forget it), ice or in-line skating, swimming(!) or long walks…  I’ve been gaining kilos all throughout this winter   More of me to love

Last night I finally got through the sleep-registration for detecting if I’m suffering from sleep apnea or just plain snoring… Something I decided needed to be ruled out as cause or bi-factor of my relentless fatigue…. Report is due in the mail sometime soon…

I have to thank all my blog-friends here: Thank you for sharing your experiences with the world, thank you for reading my blog and for encouraging words and support! I salute you all! You are indeed a well of good information!

Beautiful Butterfly Jen, Bionic Woman Abby, Running Crazy Sam, Michael is writing Chorost, Metal in his head Jeff, Great Cochlear Kids, Roberta from Italy (where’s your blog?) and many more!

Technorati Tags: postlinguistic deaf,cochlear implant,deaf

Unconditional condition

I just sat very comfortably in my favorite chair in front of my computer for two hours, doing some work that requires concentration. I had no sounds to distract me, since I turned my hearing aids off for the work-session.
I can’t stand the sound of the fans, even though I have water-cooled most of my rig, the hard-drives give off too much heat for the whole thing to be able to run without fans… I think the sound can’t be much more than 17 – 20 dB (according to fan specifications), and that’s a faint sound, really. But my hearing aids are the most powerful there is (to my knowledge) and they’re cranked to the max. (Widex Senso Diva). So I turn them off more and more these days…

The recruitment is killing me if I don’t turn them off.

The tinnitus is there as always, but not really bothering me concentration-vise. It’s sort of comforting, since the sound now has a rather steady tone. (before it was a chaos of frequencies and variations in strength/volume)
Anyway, I sit, my head is not moving, my eyes are only fixated on the screen, and my concentration goes to the task at hand. The first hour goes fine, no problems.
The second hour I start to get physical sensations in my head. It is like pressure building slowly up.
I had a good night and I’m not tired. I have no stress to complete the work I do, and have no deadlines for anything. It’s Sunday

Then suddenly I get these auditory sensations, it’s like a silent storm. I can feel it somehow. Not like pain, it is not unpleasant, it’s just a sensation of very weak electric current in my brain. Like a blanket of electricity sliding back and forth like the radar screen image.  It’s like a soft “wooosh” inside my brain…
The sensation that I have are connected to my ears, and at the same time they affect all of my brain (at least it feels like it does). I have no control of this sensation.

I wrote about this sensation before, connected to a pre-sleep phenomenon. This is very much the same, only now I get it during daytime too…

Seconds after this “wooosh”-sensation I feel dizzy (I guess there’s some kind of activity affecting my Vestibule where the balance-nerves are situated). It’s a weak vertigo, even though I sit still, are at peace with no stress. And I know I don’t have Meniére, thank goodness…

After this my ability to concentrate is worse. It’s difficult to keep a thought for as long as I like. My mind has always been a multitasking one; while doing one thing, my mind has been working out what the next thing I should/want to do… This is impossible in the state I’m in after only two hours of working effortlessly… It’s frustrating for me, because if I’m doing something that gives me a thought that I want to pursue, the short-term memory isn’t working as I’m used to. So when I complete the task I worked on, I KNOW that there was something I thought of doing, like searching for a special kind of information, or look up a certain fact etc. etc. But it’s gone… Sometimes I sit for 10 minutes of more, pondering what it was that ignited that thought, trying to reconstruct the idea for myself… Sometimes I get it, most often I just move on… I can’t let it get to me.

In short it makes me feel like I’m cognitively amputated… The SUDOKU-thing helped me understand this better…

And by writing this now, and concentrating on the subject and all the aspects of writing, I feel I’m pushing myself… I’m starting to get a headache now… This is the part I do not understand at all…

I haven’t heard a sound all morning (it’s now 12.30, I started working at 9.30). I know my hearing is disappearing, and the tinnitus is singing it’s tune. But why is it a strain for me to do something that doesn’t affect my hearing? Why do I get this dizzy feel, why the headache, why the memory-problems, why the multitasking problem, why the feeling of fatigue? Can it be that the optical-nerve also lies close the the nerves of the auditory nerve and the balance-nerve? It is all connected somehow…

My jaws feel like they had a punch (they’re sore, like I chewed gum for a few hours). My temples hurt a little bit. The dizzy feeling is there (but I’m not having trouble with the balance, though).

This state/condition will last all day, until late at night, then I feel better again, but the paradox then is that I need to sleep. I might me tired, but want to stay up because the world feel somewhat more vivid to me. Is it connected to me originally being a B-person? I’m not extreme, have no troubles getting up in the morning whenever… (but used to)

Technorati Tags: recruitment,tinnitus,deaf,cognitive,vestibular disorder,senses,bteha,vertigo,fatigue

Vestibular disorder symptoms I have experienced

I came across an interesting website for an organization called VEDA (VEstibular Disorder Association).  I found this list of possible symptoms that is very interesting.

Image copied from “vestibular system.” Online Art. Encyclopædia Britannica Online. 23 Jan. 2008
Here is an explanation of the Vestibular system.

I did not initially place all these symptoms into the same category (i.e. having to do with my hearing), but maybe I should have??? I exctracted the whole list and will excempt (a strikethrough line) those not experienced by me. If commented, the comment has been marked like this.

This list was a revelation to me… It all fits, kind of… Seems it connects to the wiring of the vestibulo-cochlear nerve: the nerve that carries information from the inner ear to the brain. Also called the eighth cranial nerve, auditory nerve, or acoustic nerve. If the “recruitment”-theory in my previous article holds water, the information about these symptoms could also have some bearing on the subject of my condition.

Vision

• Trouble focusing or tracking objects with the eyes; objects or words on a page seem to jump, bounce, float, or blur or may appear doubled
• Discomfort from busy visual environments such as traffic, crowds, stores, and patterns.
• Sensitivity to light, glare, and moving or flickering lights; fluorescent lights may be especially troublesome Very much so!
• Tendency to focus on nearby objects; increased discomfort when focusing at a distance
• Increased night blindness; difficulty walking in the dark Yes, have to find walls or points of support in order to be able to move, get a complete feeling of immediate disorientation
• Poor depth perception

Hearing

• Hearing loss; distorted or fluctuating hearing Well, that’s not exactly news…
• Tinnitus (ringing, roaring, buzzing, whooshing, or other noises in the ear) Very much so!
• Sensitivity to loud noises or environments Especially high pitch like childrens voices
• Sudden loud sounds may increase symptoms of vertigo, dizziness, or imbalance Yes!