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!

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 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.

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 🙂

radThen 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)

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!

 

Read the rest of this entry »

Explaining the analogy: "Recruitment" of hair cells in cochlea

During my research into my own declining hearing- and health condition, I came across information about a phenomenon regarding hair cells in cochlea called “recruitment”. I strongly suspect “recruitment” is what happens to me. It certainly would explain a lot of the things that happen(ed) to me and my hearing and the fatigue…

(Most of the text that follows is copied from this page at hearinglosshelp.com and edited by myself for the sake of this blog and my readers.)

What is “Recruitment”?

Very simply, “recruitment” is when we perceive sounds as getting too loud too fast. How is it possible to hear too loud when the hearing in fact is vanishing, you may ask… Well, be patient with me and read on…

“Recruitment” is always a by-product of a sensorineural hearing loss. If you do not have a sensorineural hearing loss, you cannot have “recruitment”. In simple layterm this means that this condition only affects those who have a significant loss of hearing caused by haircell-damage in cochlea (mainly).

As a sidenote; there are two other phenomena that often get confused with “recruitment”. These are hyperacusis (super-sensitivity to normal sounds) and phonophobia (fear of normal sounds resulting in super-sensitivity to them). Both hyperacusis and phonophobia can occur whether you have normal hearing or are hard of hearing.

An analogy for understanding how “Recruitment” got its name

Perhaps the easiest way to understand “recruitment” is to make an analogy between the keys on a piano and the hair cells in a cochlea.

The piano keyboard contains a number of white keys while our inner ears contain thousands of “hair cells.” Think of each hair cell as being analogous to a white key on the piano.

The piano keyboard is divided into several octaves. Each octave contains 8 white keys. Similarly, the hair cells in our inner ears are thought to be divided into a number of “critical bands” with each critical band having a given number of hair cells. Each critical band is thus analogous to an octave on the piano.

Just as every key on the piano belongs to one octave or another, so also, each hair cell belongs to a critical band.

The requirements for “Recruitment” 

When you play a chord on the piano—you press two or more keys together but they send one sound signal to your brain. Similarly, when any hair cell in a given critical band is stimulated, that entire critical band sends a signal to our brains which we “hear” as one unit of sound at the frequency that critical band is sensitive to. This is the situation when a person has normal hearing.

However, when we have a sensorineural hearing loss, some of the hair cells die or cease to function. When this happens, each “critical band” no longer has a full complement of hair cells. This would be analogous to a piano with some of the white keys yanked out. The result would be that some octaves wouldn’t have 8 keys any more.

Our brains don’t like this condition at all. They require each critical band to have a full complement of hair cells. Therefore, just as any government agency, when it runs short of personnel, puts on a recruitment drive, so too, our brains do the same thing. But since all the hair cells are already in service, there are no spares to recruit.

Getting to the point – what “Recruitment” means

What our brains do is rather ingenious. They simply recruit some hair cells from adjacent critical bands. (Here is that word: recruit or recruitment.) These hair cells now have to do double duty or worse. They are still members of their original critical band and now are also members of one or more additional critical bands.

With only a relatively few hair cells dead, then adjacent hair cells may just do double duty. However, if many hair cells die any given hair cell may be recruited into several different critical bands, in order to have a full complement of hair cells in each critical band.

 

 

The results of the phenomenon known as “Recruitment” – the conclusion

The results of this “recruitment” gives us two basic problems. (notice the underlined parts!)

  1. The sounds reaching our brains appear to be much louder that normal. This is because the recruited hair cells still function in their original critical bands and also in the adjacent one(s) they have been “recruited” into.

    Remember that when any hair cell in a critical band is stimulated, the whole critical band sends a signal to our brains. So the original critical band sends one unit of sound to our brain, and at the same time, since the same hair cell is now “recruited” to an adjacent critical band, it stimulates that critical band also. Thus, another unit of sound is sent to our brains. Hence, we perceive the sound as twice as loud as normal.

    If our hearing loss is severe, a given hair cell may be “recruited” into several critical bands at the same time. Thus our ears could be sending, for example, eight units of sound to our brains and we now perceive that sound as eight times louder than normal. You can readily see how sounds can get painfully loud very fast! This is when we complain of our “recruitment”.

    In fact, if you have severe “recruitment”, when a sound becomes loud enough for you to hear, it is already too loud for you to stand.

  2. The second result of “recruitment” is “fuzzy” hearing. Since each critical band sends one signal at the frequency of that spesific critical band, when hair cells get recruited into adjacent bands, they stimulate each critical band they are a member of to send their signals also. Consequently, instead of hearing just one frequency for a given syllable of sound, for example, perhaps our brains now receive eight signals at the same time—each one at a different frequency.

    The result is that we now often cannot distinguish similar sounding words from each other. They all sound about the same to us. We are not sure if the person said the word “run” or was it “dumb,” or “thumb,” or “done,” or “sun,” or? In other words, we have problems with discrimination as well as with volume. If our “recruitment” is bad, our discrimination scores likely will go way down.

    When this happens, basically all we hear is either silence, often mixed with tinnitus or loud noise with little intelligence in it. Speech, when it is loud enough for us to even hear it, becomes just so much meaningless noise.

    This is why many people with severe recruitment cannot successfully wear hearing aids. Their hearing aids make all sounds too loud—so that they hurt. Also, hearing aids cannot correct the results of our poor discrimination. We still “hear” meaningless gibberish.

    However, people with lesser recruitment problems will find much help from properly adjusted hearing aids. Most modern hearing aids have some sort of “compression” circuits in them. When the compression is adjusted properly for our ears, these hearing aids can do a remarkable job of compensating for our recruitment problems.

What I hear (or what’s left)

It would be a good idea for me to put down some kind of status as to how my hearing is these days (as a baseline):

Without my hearing aids I can barely hear:

  • My son singing at certain notes at the top of his voice (gives me echo-effect on that frequency until I hear new sounds)
  • A tractor right outside my windows (5 meters away)
  • Only the bass from music

keep-silence With hearing aids in quiet surroundings I hear:

  • Well enough to understand spoken words with the aid of lipreading (better if my head is clear and rested)
  • When really silent: a noisy refrigerator, traffic noise outside the building, an airplane or helicopter in the sky. I get a “white noise” sound from running water.
  • My external hard-drive – the spinning disks vibrate into the wooden table.
  • Other peoples voices in the room, but cannot understand without lipreading.
  • Familiar voices on the mobile for short conversations and messages. I most often have to repeat and ask for confirmation. It’s border-line.
  • Other peoples footsteps in same building, maybe a slamming door.
  • Static noise from electrical FM-devices like my Phonak Smartlink

With hearing aids in a “quiet cafe” surrounding I can hear:

  • Spoken word if not more than 1 meter away, but I have to concentrate really hard
  • Other people speaking, but cannot make out what is said.
  • Music, but only in the form of unrecognised sounds…

 With hearing aids in noisy surroundings I hear:1728

  • All sounds are garbled and mixed in an impossible soup of noise
  • I can extract a voice from 50 cm away if noise isn’t too bad, and I know the subject and the person (if I’m used to lipread whomever, it’s a better chance of understanding)
  • Cars and trucks travelling at high speed close by me
  • Dogs barking loud

When waching a movie with sound directly into my hearing aids I am dependant on captioning. Environmental sounds like running water (splashing), wind blowing, birds chirping etc are lost completely. Spoken words are not understood at all without captioning (dialogue is most often switching and camera angles changing too fast for lip-reading to be effective enough).

Music has lost it’s magic during the last few years. I can sense the rythm, and hear most of the bass and drums. Percussion is completely gone. Perception of vocals depends on type of music and what tone the voice has. Guitar has disappeared slowly last few years, now it’s not “swinging” at all anymore…

I wrote down this, because I want to use it to compare later when I get the CI (my personal baseline).

Mentally drowned

Feeling of defeat is not a good feeling. Yesterday I attended my fathers 60th anniversary celebration and had some experiences with my hearing, or rather, the lack of hearing…

In the days up to his celebration yesterday, I had my son with me as I usually have every second (extended) weekend. This time I really had my hands full just dealing with my son. Not that he is raucous or anything. But my strengths go only to a certain level these days as demonstrated yesterday. I was supposed to bake a cake to the celebration, which I had voluntarily said I would bake. And I really wanted to do it, too. But the thing with my memory when fatigue hits is that it’s very similar to what happens when one has depression; performance is poor…

Luckily one of my brothers has gotten a knack for baking himself lately (as he is expecting his firstborn I guess his domestic consciousness arises 😉  ) and the cake supply was sufficient.

Family members who hasn’t seen each others for a few years have a lot of catching up to do. Usually I try to arrive a little early, in order to be able to have a few words with whomever gets in before there’s too many. This time the weather was bad with blizzard so the drive took it’s time…Cornered_20Kitten

I sat down in the couch in the corner (always try to avoid getting any sounds behind me) and could not distinguish anything that was being said around the table.

Being happy to see relatives, wondering what had happened in their lives lately, I guess I tried too hard in the beginning. I quickly got tired from trying to follow conversations.

My blessed super girlfriend sees right through me, and could tell how tired I became just by looking at me. She made me aware to take a rest by turning my hearing aids off. But in a situation like that it’s nearly impossible to be able to rest, because my eyes do most of the work. I scan the room to see if anybody has their eyes directed on me, if they are talking to me. And every now and then someone does talk to me, and I turn on my HA and lean forward to try to decipher what they ask me…

After a few hours I was shot… Simply shot….  No strength left, and I was on my “emergency battery”. I told everyone that I had to leave because I didn’t feel good, and I gave them a quick explanation. I’m lucky to have a understanding family.

But the feeling of defeat was quite heavy. I felt forced to withdraw before I wanted to. I hated it. But it was necessary…

Yesterday it was clearer than I ever have experienced… It is very difficult to describe the state of my condition then, but I’ll give it a try:

If you take a whole pack of chewing gum and chew on it a whole day you know you are bound to have an aching jaw, ok? This was quite a similar sensation: the side of my head felt like it had been pounded by someone with boxing gloves for a few hours. Headaches (on the sides, around my temples), a sensation of dizziness and all sounds was kind of like painful. The sounds were unpleasant and felt intruding and annoying.

Today, as I write this, my head still has this ring in it. I write this now even before I have gotten out of my bed, because I know that not before long, I will be mentally too tired to conjure any text like I want to…drown2

It’s a hellish place to be… Like being forcefully drowned mentally. And because the transition to deafness is so slow for me, I have fallen in some kind of trap, by not being able to protect (get CI) myself in time.

But here I am, and I have to take care of my son, myself, and keep on with my life. I know there is a solution for me up ahead with the CI, and it can’t come soon enough!!!

I have high hopes for 2008 to be the year when I either get word of when my first CI will be inserted…

I need it badly, as confirmed yesterday….

The sum of 2007 – Happy New Year!

As 2007 soon is history, I feel it is appropriate for me to sum it all up for myself.

Even though my hearing is coming to an end, there are, however, sounds to look forward to. And that is the CI-sound! Still have to wait for it, but in the meantime, I can take care of myself and prepare myself as best as I can.

The year 2007 gave me many good things:

  • I started really believing in a better life for myself.
  • I learned A LOT about myself and life in general.
  • I’m much more self-confident in my role as a father to my beloved son.  
  • I consolidated my relationship to my great, great super girlfriend. Thanks for being in my life, honey!!!
  • I had the opportunity to spend time with my girlfriend 😉
  • I learned a lot more about CI, and I’m even more certain that it is what I need.
  • My health improved a lot from reduced stress.
  • I did a fair share of traveling and had a lot of activities. I’ve been busy, all right 🙂
  • This blog has become a good thing for me, I also made new online-friends from it 🙂
  • I discovered that my knee(s) probably need surgery so I can exercise again. (too much pain lately). It’s a good time to fix such stuff now, as I’m waiting for CI anyway 🙂 Just hope I don’t have to wait too long for the knees to be fixed either…
  • I made a lot of new acquaintances in the CI-community, for which I am grateful…
  • My life seems to fall into place now, as opposed to a little more than one year ago, where I felt everything fell apart…
  • Took care of my eyesight (new lenses and new glasses)
  • Relationship with family improved overall.
  • I learned to cope with my tinnitus, it’s almost soothing sometimes
  • I’m reading books on a steady basis again! For many years I have been so tired/fatigued that my ability to concentrate was very poor. I used to be an avid reader of everything, and now I’m on my way back 🙂
  • I’m sleeping well again.

The year 2007 gave me a few downturns too:

  • CI surgery is still in the blue as for a fixed date
  • The music’s over for now. I get no more pleasure from it (only occasional glimpses), only more fatigue and “head/earaches” 😦 
  • Speaking of fatigue; my battery is still worn these days, it takes long time to charge and very short time to empty… But it has improved a little, and that is to me good news, really! I feel the tide turned in 2007.
  • Trouble walking stairs both up and down, thus disabling me to exercise rigorously, which was supposed to have been my project number one this year (in preparation to CI-surgery). Even swimming was painful… Will be fixed soon I hope…
  • The tinnitus became a factor that I had to deal with. It is slowly increasing in force (louder and louder), but luckily it’s a steady tone, rather than the chaotic concert it was at first…. It’s more prone to appear when I’m tired, so it’s a signal for me too, to slow down or turn off my hearing aids for a break…

All in all, 2007 was a good year for me. Happy New Year, everyone!!!

Making sense of the world through a cochlear implant

PET20YEAROLD_HIGH March 13, 2007 –  Scientists at University College London and Imperial College London have shown how the brain makes sense of speech in a noisy environment, such as a pub or in a crowd. The research suggests that various regions of the brain work together to make sense of what it hears, but that when the speech is completely incomprehensible, the brain appears to give up trying.

The study was intended to simulate the everyday experience of people who rely on cochlear implants, a surgically-implanted electronic device that can help provide a sense of sound to a person who is profoundly deaf or who has severe hearing problems.

Using MRI scans of the brain, the researchers identified the importance of one particular region, the angular gyrus, in decoding distorted sentences. The findings are published in the Journal of Neuroscience.

In an ordinary setting, where background noise is minimal and a person’s speech is clear, it is mainly the left and right temporal lobes that are involved in interpreting speech. However, the researchers have found that when hearing is impaired by background noise, other regions of the brain are engaged, such as the angular gyrus, the area of the brain also responsible for verbal working memory – but only when the sentence is predictable.

“In a noisy environment, when we hear speech that appears to be predictable, it seems that more regions of the brain are engaged,” explains Dr Jonas Obleser, who did the research whilst based at the Institute of Cognitive Neuroscience (ICN), UCL. “We believe this is because the brain stores the sentence in short-term memory. Here it juggles the different interpretations of what it has heard until the result fits in with the context of the conversation.”

brainxrayThe researchers hope that by understanding how the brain interprets distorted speech, they will be able to improve the experience of people with cochlear implants, which can distort speech and have a high homer-simpson-wallpaper-brain-1024level of background noise.

“The idea behind the study was to simulate the experience of having a cochlear implant, where speech can sound like a very distorted, harsh whisper,” says Professor Sophie Scott, a Wellcome Trust Senior Research Fellow at the ICN. “Further down the line, we hope to study variation in the hearing of people with implants – why is it that some people do better at understanding speech than others. We hope that this will help inform speech and hearing therapy in the future.” 

In sickness and health

Coming from a lot of resting and relatively no stress I can feel somewhat energized. But the feeling of fatigue is less than one hour away still, and that can be frustrating. But I have come to terms with the fact that this is how it is – for now anyway. And I feel that I’m getting better a little at a time. I hope it’s not just wish-thinking…..

Yesterday I came down with a regular cold. Comes with the season, and especially when you have kids roaming in germ factories like schools.

All hearing aid users probably know this: being hard of hearing makes you a extra deaf when being “stuffed” and having to blow your nose every ten minutes or so… But for people who do not know how it is to be hard of hearing and use hearing aids, it’s virtually impossible to understand the impact of a common cold on hearing aids users. This is what I want to try and explain now.

When common cold occurs, one is likely to get an increase in internal pressure in the neck/throat region due to various swollen glands. This in turn puts pressure on internal organs in the head, hence headaches, light-sensitivity and REDUCED HEARING. When the cochlear has more internal fatigue-736871pressure where the hair-cells are situated, the gel-substance that carries the sound waves to the hair-cells is a little less sensitive. That means that the overall amount of energy that reaches the hair-cells in cochlear is being reduced.

Then there’s also the impact of all the fluids that forms in the sinuses.
With reduced hearing in the first place, such an reduction on the hearing gives a larger effect on hard of hearing, thus making us more deaf.

Aside from the normal symptoms of common cold that makes you tired, feverish and so on, it also makes near deaf’s have to put even more energy into the business of communicating.

I propose that near deaf need an extra low threshold for sickness leave from work etc. It is also important that the employer understand the fact that common cold has a stronger impact of people with hearing disability.

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Battling tinnitus, headaches and fatigue

While living my life, with the absence of the working life strains, I still have to deal with stuff that is quite heavy.

First out is the tinnitus. Coming on strong in the evening and especially before sleep, I can feel the phase-shift as I have taken out my BTE HA (behind-the-ear hearing-aid) and the sound-world has disappeared.
After only a few minutes the concert starts with mid-level frequency sounds (where I have never ever had a sound chart reading above 110 Db) trying to find the right tune, just like violinist warming up before a show. The level of sound varies a little, and I have different sounds in the right ear from left ear. In short: a cacophony just as a whole orchestra is warming up before a concert…
Sometimes I get a spike of sound. A sound very distinct almost like the ping sound a submarine uses in it’s sonar just lasting a little longer. And that sound startles me every time, since it’s very loud. And it pops up in both left and right ear totally randomly.

Then there’s headaches. I get headaches almost daily for what feels like very different reasons. Sometimes it’s the overload of sounds either in loudness or in durability. Other times it’s strain headaches from stress from various situations, or just plain stiff neck. And the wintertime low sunshine on clear days can also induce headaches. Seems like I have a low tolerance for headaches. Just checked my brain with MR and x-rays and all results came back negative, which is good news. One less thing to worry about.
I have taken some actions to fight the headaches, and I think I’m on the right path. I have started doing exercises for my neck. And I’m doing it very slow and careful now in the beginning, as I get headaches from doing these simple exercises.
Most HOH and near-deaf people have one thing in common: we move our head forward as to signal to anyone that we need to hear better. I think it is also an instinct in order to make the distance between us and the source of sound as short as possible.
My neck is  very agile going forward, but back and to the sides, it’s as stiff as a stick…. So these exercises, bending my head back and forth, from side to side, and rolling my head slowly around are having an impact… I can feel the cracking of neck-bones and the headaches come bad right away, which I think is the rush of blood extending the blood vessels in my head. And my head isn’t used to those extending blood vessels, thus giving me headaches… I hope it’s temporarily, because if it is, I know I’m on track of doing something that will improve my day to day shape.

Then we’re on to the fatigue… Tinnitus and headaches clearly attributes to the fatigue, no doubt. I have also recently heard about a phenomenon called “recruitment” that could explain the sensations I get from my ears and the following feeling of fatigue and exhaustion. Will read more about that later, and research it too. See link to the article I found under the heading: “Special Subjects”.
Depression is also a common factor resulting in fatigue… Am I depressed??? I really am not sure… Sometimes, yes I would say I’m depressed, other times I’m as happy as a lark in the sky singing away… So, you tell me…

Fatigue epiphany

epiphany

Just back from a session with my psychologist, where I dealt with the matter of fatigue. I learned something new about myself, and I guess this knowledge could be useful to many who are hard of hearing or near-deaf.

The state of fatigue is the subject that I want to raise here. Of course fatigue can have many reasons, both external, internal, material and spiritual. I want to discuss the mental aspect of it that became very clear to me today: When I get the notion in myself, that I’m tired, it starts a whole range of other reactions:

Emotions:

  • anxiety (am I sick, is something wrong with me?)
  • stress (what did I do to become so tired??? why is this happening?)
  • sadness (the feeling of fatigue sort of disables me from being energetic, joyful and contributing to my surroundings)
  • hopelessness (damn, is this how my life has become? Is this how I’m supposed to live my life???)
  • and many more… (it is a little chaos of mixed emotions)

The emotions manifests into:

  • Stomach feels like a brick, hard and heavy
  • Neck becomes stiff
  • Sensations of pain are more prone (backache, headache, muscle and tendons)
  • A constant state of emergency (to put it short)

Last week, when I spoke with my incredifaboulofantastic girlfriend about this subject, we agreed that when I have the notion of being tired, I should simply say; “I need a break”.

This was the genius of it: instead of saying that:

“Oh, I am tired, I need to go by myself and be more tired” (thus pushing myself even further into the mental state of fatigue),

I can say, “Oh, my senses had a handful, they need a little rest, and then I’ll be fine again”.

By digging into the notion of fatigue, and really FEELING the weight of the emotions, I have also become more aware of what is happening to me in terms of thoughts, reactions and the results of those… This way; I can make a difference in myself by avoiding chains of thoughts that give me negative emotions and drain me even further of the precious energy I need to cope with the present situation of being near-deaf…

I hope this means something to someone, because it was an epiphany to me!

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Status update

Tinnitus is still there, disturbing concentration and sleep. The left ear seems to want to join the debate as to wether the hair-cells in my cochlears are about to wither and die or not… For the time being, the tinnitus is bearable because it’s inaudible during the time I wear my hearing aids (HA). But I have noticed times when the tinnitus breaks through even when I wear my HA. So the signs is that the tinnitus will not subside or fade, on the contrary…

Fatigue is still severe and limiting my activities on a daily basis. However, I have now organized my life in order to have less activities, and it feels good. I get more ability to initiate things I want or need to do. I still have to do a job regarding my own mentality towards the fatigue (how I cope with the feeling of being “empty”), but having said that, I have now eliminated most possible external causes for the fatigue.

Bilateral CI-operations are still my number one priority in the long term. In short term it is my son, girlfriend, family and myself. As for the CI, I do research, talk to people, evaulate back and forth. I have also checked out the status of stem-cells research of regenerating hair-cells in the inner ear, and the conlusion is that it is indeed exciting and promising, but not plausible to expect within the next 10 – 15 years. That rules out stem-cell therapy on my part. If I by getting bilateral CI-implants ruin the possibility of stem-cell regeneration of my cochlear hair-cells, so be it. I live now, today! That will be for the next generation of deaf and near-deaf.

Deaf I mentioned music in a posting yesterday; The music’s over – for now… Since I started this blog, the time spent listening to music has declined automatically and quite evenly as I started reducing the strain on my ears as an experiment. It requires too much concentration of me to listen to music anymore. Before I could get a kick out of music even when relaxing. Today I need to really focus and also have the lyrics in order to “get” something from the song I’m listening to… After a very short time it starts to feel like my head has been through the washing machine…

(Reminds me of “It’s all gone – Pete Tong” – a movie about a DJ who looses hearing)

Symptoms from too much sounds:

  • Pounding and pulsating sensation in head (brain?)
  • dizzy (I’m even getting troubles with balance if I overdo listening),
  • my counscious level is reduced (like I’m sleepy but I’m not),
  • concentration has diminished (harder to follow what people say to me, I concentrate harder),
  • cognitive skills reduced drastically (I know this thanks to my un-scientifically measurement method using Su-Doku)

and…  I suspect I’m getting mild migraine from time to time, even though that could be related to the fact that I quit nicotine permanently 18 months ago. My brain is perhaps still adjusting to the fact that my blood-vessels are getting sound and healthy again. The migraine-tendency could be caused by dilated blood-vessels in my brain, and if this is the case, those pains will subdue soon… Prone to light-sensitivity, I also turn down the intensity of lights.

On a personal level, my life is good, I enjoy being a father, and have a wonderful girlfriend with whom I can spend time. My family is close to me, and somewhat engaged in my condition. Friends still keep in touch with me. I’m feeling active and engaged, working on several “projects”, including this blog and fixing up my apartment and helping my mother and stepfather with their recently aquired small-farm. I keep in touch with former employers, and have moral support from them, have several contacts in the near-deaf-community and so on.

The importance of the eyesight when deaf part II – the conclusion

Getting used to contact lenses, and with the final adjustments just around the corner, I learned this:

My eyesight is as important to communicate verbally as my residual hearing with the hearing-aids!

With near 100% eyesight, I can tell the difference after a few weeks. Evidently I unconsciously strained my eyes to compensate for the slightly imperfect eyesight I had. This unnecessary strain has over time also contributed to the fatigue caused by multiple factors. Just how much strain is impossible to express in a number, but given my condition, I would say it is a quite significant strain that I now have eliminated…

I can tell from situations where people speak to me from a distance of a few meters away. I no longer have to walk toward them, since I can make out their lip movements from a few meters away. Earlier I would squint my eyes as much as I could possible do by using the muscles around my eyeballs, thus giving me strain-headaches and muscle-tensions in my face if I had do to it too much, say more than one hour in one stretch….

This experience is for me another evidence on how stretched my residual hearing has become, and how hard I actually work to participate in normal everyday verbal communication. I need that bilateral CI….

The importance of the eyesight when deaf

Three days ago I tried contactlenses for the very first time. I’ve been using glasses since the age of 13, so this was a new experience… Because of my reduced hearing I rely heavily on lip-reading as an aid to understand the spoken words.

My use of eyesight does a great deal of compensation for the lack of hearing since I learned lipreading techniques as a kid. The “IOWA”-test I did about a year back showed that with the hearing-residue I have, combined with lipreading I got a close to 90% score on understanding speech without ambient noise present. (I fill in the remaining 10% with qualified guessing) With noise present it dropped to 60% and without lipreading it was 0% perception of the spoken words… Conclusion: I rely heavily on lipreading.

Mother nature has given me eyesight that has declined throughout the years. Last time I got my eyes checked was three years ago, so it was long overdue. The new lenses give me much better sight without the hassle of scratches, fingerprints and greasestains from the frying pan.

It takes a little while getting used to, but after three days I can say that I wish I did this two years ago. I think some of my fatigue, headaches and general strain derives from the lack of following up on my eyesight. To be honest, I didn’t think of it before my girlfriend asked me to consider lenses since the glasses get in the way all the time when we want to kiss 😀

As with mye hearing, the eyes also degenerate into poorer performance so slow that it is virtually undetectable in everyday life. I’ve learned a lesson: do not assume that your senses are allright, go get it checked at least once a year!

So yet again, something that I have to thank my great fabulous girlfriend for!!!!

Thanks for being in my life sweetheart!

All senses alert

Lately I’ve been plagued with tension-headaches and extreme fatigue. The headaches I cannot pin down to one cause, same goes for the fatigue-episodes. It seems like all my senses are so alert that it’s on the verge of being hypersensitive…

That goes for mye hearing too….  I’ve had to stop listening to music, alltogether. Only a short time of music gives me headaches. And I turn off the hearing-aids as much as I can…

I will monitor my eyesight much more often and I will start to use contact lenses in the hope that it will lessen the strain on my eyes… It’s obviously very important for me to eliminate any cause for unneeded strain on my senses, since the fading hearing clearly does something to me.

I’ll report first impressions after contact lenses has been used for a few days.