The tinnitus I hear – all the time

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

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

tinnitus

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

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

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

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

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

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

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

Going deaf – twice

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

Learning sign-language at Ål – School for deaf

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

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

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The difference between “recruitment” and tinnitus

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

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

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What happened with the “recruitment”?

I got this question from a reader (Candy):

Kim’s post send me here, and I really like your post.  What gets me amazed is that I do have that problem some of the time and I never knew there was a word for it!  😉
Do you have implants now? and, if so, does it helps get rid of recruitment?  If it does, then it would be a good reason for me to get it and stop procrastinating!  😉

Instead of answering Candy directly, I think everybody who has read my original post about the phenomenon called “recruitment”, also deserves to see my response:

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Unrealistic Expectations from the World? Audism?

What do people expect from me? They expect me to participate in social activities and to be part of the “common consciousness”. That is a fair expectation in my opinion. In this blog post I want to take a look at some circumstances and  obstacles concerning these expectations. I think it will be wise to read the definition of some of the words I use, they are Prayer-no-expectationlinked, as the word “expectation” was just linked.. That way we will be on the “same page”.

In this aspect I am thinking about what we expect and when we expect it in terms of my hearing progress. This is also a sore and difficult point on my behalf, since it is much about social interaction and how I am perceived socially. How I am viewed as a person.

As I’m going the path of CI rehabilitation and re-learning to hear, I am doing some discoveries about expectations of my recovery from both myself and others near and dear.

Me, a social outsider

All my life I’ve been a part of the hearing world, and thus a social outsider. Even among my closest friends and family, I got and still get, remarks and comments that hurt to the core of my being. I’m sometimes left with a feeling that people suspect me of WANTING to be isolated or withdrawn from issues that are talked about. I often feel misunderstood and misinterpreted. For instance my withdrawal from social events is sometimes being interpreted as a lack of interest, or attempt to socialize. That is so unfair and sad. I’ll explain why…

The more people talking at the same time, the more impossible it is for me to interact in a meaningful way. Believe me when I say I really wish I was able to interact with others on their terms, but there is a huge damage in my hearing that makes that incredibly hard. There is a limit to everyone’s mental capacity and endurance. My limit is shorter than most in terms of social interaction due to the nature of listening and understanding.

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Bad “hear” days and other things

Happy New year everyone!

frustration3 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?

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Rewiring my brain – altering the language system?

brainscan

How a person understand and interpret speech is an extremely complex process involving the synaptic responses to the physics of sound, neural activity in the nervous system and brain, and ultimately the processing of those neural impulses in various regions of our brain.

Scientists have started mapping those regions of our brains by watching what happens inside the brain through MRI, PET or other means of scanning technology. Also, people who have had damage to their brains have helped us gaining more understanding about which parts of our brains does what.

Speech and language, meaning the vocal transfer of meanings, feelings, ideas, ideologies, experiences and everything else human beings exchange and communicate, are processed through various parts of our brain.

Some of the components of speech and language processing in our brains are about (I’m sure there are many, many more, each specializing in it’s own incredible way!)
1. acoustic processing
2. visual processing for lip reading
3. phonology
4. semantic processing (vocabulary)
5. short- and long term memory (previous context, experience, reference)
6. visuoauditory, meaning that the brain both processes and somehow merges each individual sensory input (bisensory – vision and hearing); keep in mind, we don’t fully understand everything about our brains functions yet.
7. contextual processing
8. “alternative contextual qualified guessing” (you might also call it fantasy 🙂  ) when all other understanding strategies fails, it’s the last attempt of understanding, and results in either a question, embarrassment or success

OK, that was the crash course in what we know about how our brains processes speech in a oversimplified manner.

Taking that info into account, think about what happens if the signals changes radically? What happens when a hearing-aid user, de facto deaf (unable to comprehend speech without the sensory aid of hearing aids, or contextual aid of sign language, lip reading or written text), is fitted with a CI or two?

In my case: what happens when I have suffered from “recruitment” while using my hearing aids for many years, and then suddenly both the recruitment is gone, AND the perceived frequencies have shifted totally out of it’s previously normal neural pathways starting with the hair cells in my cochlea.

My implant feeds electronic impulses to the part of my cochlea array of left-for-dead, broken hair-cells, while the previously still somewhat functional part now is left abandoned, not receiving any kind of stimuli anymore. (it’s like playing a piano on the octaves situated on the far left side for your whole life, and suddenly someone moves the entire piano so that you now sit on the far right!)

MEart1Well, obviously my brain has some work to do! The rewiring of the neural pathways are one thing, and the brains processing are another. I believe we can agree that the neural rewiring both in our nervous system, and in our brains (which I agree, is in fact part of our nervous system) is about new synaptic paths forming, adjusting our nervous system to the new sensory reality.

But what about the brains’ processing of these sensory inputs? The part of my brain that performs acoustic processing adjusts to the change in frequencies, the new auditory virtual reality slowly becomes THE reality, due to the lack of, and loss of the old auditory reality.

The phonology of all words have changed, how does my brain cope with that? Rewiring, relearning.

The short-term memory function now has to deal with input data that are totally new in appearance. It doesn’t sound like before. A streetcar doesn’t sound like a streetcar. A woman in high heels sound like a carpenter hammering down a nail. A kid laughing sounds like an animal dying. A kid crying sadly sounds like a anger fit.

Do you see where I’m getting at? The change in the quality of the sound perceived, also changes the contextual package, ie. what my brain interpret that specific sound to be, also decides my initial contextual and sometimes emotional processing. So now my contextual database also has to be reprogrammed.

The long term memory databank contains data that are now invalid. My mothers voice doesn’t match her voiceprint in my brain. All the people I have learned to identify by their speech patterns (how they pause, how they etc) now needs to be reprogrammed. It’s like having to change your entire music collection of vinyl to low quality compressed digital music (like computerized music in the MP3 format).

Borg I will forget the old information, and fill it up with the new. All as the “Borgs” in Star Trek says: “You will be assimilated.”

If the part of my brain that does the acoustic processing changes it’s algorithms, I assume it’s fair to expect a change in the output from that process, consequently leading to the fact that the part of my brain that is the recipient of of the processed audio, now being “re-digitalized”, also have to change THEIR algorithms!

In that way, my entire language system is presently under a complete and heavy and thorough modification.

I have noticed this in the following ways:

I can “hear” better, but I have problems remembering the first part of the sentence that I hear, OR I only perceive the first part, my brain skips the last part of a sentence. I deduct from this “brain rewiring hypothesis”, that my short-term memory is having trouble storing the strange sounding words in it’s flash memory. The input data kind of doesn’t fit properly.

The other parts of my language system also sometimes suffer from overload or fault, causing a crash. Like when ambient noise occurs, and the voice I listen to drowns in that noise, my contextual and visual processing brain part needs to take over, but since I have been so focused on the auditory processing (due to the new and strange sounding quality), the take-over comes just a little bit too slow to be able to follow the person talking…

Think of this last paragraph like trying to follow an intricate discussion about a complex issue while having two or three kids climbing all over you, demanding attention. Sometimes they DO get your attention, and what happens then with the discussion you were following?

That’s when my “alternative contextual qualified guessing” kicks into gear 🙂

And this time I won’t even get into the emotional and psychological aspect of this brain-rewiring process that I’m currently undergoing… 🙂  I think each and every one of you who reads this can imagine the psychological and emotional implications for yourself.

Some things are best left unsaid?

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.