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!

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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).