Log no 10 – day 41 – Different kind of tired, stress, and phantom sounds mixed with tinnitus

Last 2 weeks I had a throat infection, giving me sleeping trouble at night, due to irritation in the airways causing a lot of coughing. But two interesting discoveries emerged from this condition.

energy The first thing was that since I got my CI, I am, of course, still tired from the strain of learning to hear again. (I’m working regularly every day at improving my hearing skills!) BUT, having this throat-infection was a revelation to me. Before CI, I’d be out of play, so to speak, ready for decommission, not having enough strength to do much more than just cope with everyday chores like making food and taking care of my own basic needs. This time I felt as if my tiredness was different. It wasn’t so all-consuming and forcing me into life-support mode. It was as if my brain got enough oxygen this time, compared to before CI where my cognitive skills took a severe hit when suffering very mild conditions like infectious throats or other normal mild seasonal illnesses.

Recently I have come into contact with people suffering from CFS – Chronic Fatigue Syndrome (aka: Myalgic Encephalomyelitis (ME)), which is a bit of a mystery illness, but a very real one, where those who suffer from it experience severe fatigue. The symptoms concerning the fatigue reminded me very much of my own condition prior to the CI-surgery. Not to the same extent, of course, but the effect of the fatigue that affected cognitive skills, memory and other important brain-functions that has an impact on social life, among others, reminded me very much of my own condition…

I felt a wee bit sick, due to the sore throat and coughing,  of course, but still had the energy to do things! And energy to take better care of my son and myself. It is still unclear whether this is a trend that will continue, or a one time experience. But I certainly feel hopeful, and think that this can not be a coincident. I believe that this was the first real sign that I am about to bounce back to good old me 🙂Sore_Throat

It also leads me to new questions such as, how bad did the “recruitment” really affect me? I guess the future might or might not tell me a bit more about that… I’m having a growing suspicion about it affecting me a great deal…

The other thing was the “new” tinnitus in my implanted ear. I discovered that every time I coughed, the sound increased in strength, and a little while later, it subsided back to it’s former level. A very noticeable phenomenon. I did a test while being very relaxed and about to fall asleep. I hyperventilated, and yes, the phenomenon reoccurred! I hyperventilated even more, and the event occurred even longer and stronger. That leads me to the conclusion that the tinnitus, if I can call it that anymore, in my implanted ear, is caused by an increase in either oxygen in the blood, or an increase in the blood-flow itself. That plays pretty good into what is generally known about tinnitus, that stress causes tinnitus to get worse. I believe stress is a condition where some glands in the body produces hormones that triggers certain reactions, such as elevated heart rate? Link to a Washington Post article on the subject of stress and what it does physically to the body.

Anyway, these are exciting experiences that I think, given time, will turn out to be advantageous to me. In other words; good news 🙂 The “tinnitus” in my implanted ear will eventually disappear, and my fatigue tendency is dissipating it seems…

phantom soundOh, and this other thing I experienced: while in my car, hearing aid taken out of my other ear, relying only on my CI, I turned on my car-stereo and increased the sound level including the sub-woofer which has it’s own volume control. I listened to the music for some time, receiving the deepest end of bass sounds in my non-implanted ear (which is the only sound that ear is able to perceive these days) and all the other sounds in my implanted ear. Not too bad to listen to, actually 🙂

Later that night, I got phantom music in my head. It was not very distinguish music, but sounded like it was really loud from my neighbors apartment. (I checked by touching the wall, no such sounds from my neighbor, who never plays that loud ever anyway). And the music was pretty constant. It was like Scandinavian dance music, and I enjoyed the tunes. But knowing it was from my head was weird… It was physically impossible to hear it through my CI-ear, since I took that CI off, and the music kept playing. I link the car-session with a lot of natural bass to this phantom-music event. I guess there’s a lot going on in my brain these days 🙂

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Log no. 9 – day 37 – Progress, progress and future bureaucracy

When going uphill you eventually get to the top!Motivation

Recent CI-moments:

* Had a family dinner with only the CI the whole time for the first time ever. First time I didn’t feel totally wiped out after a family congress 🙂 I could follow the conversation somewhat by also utilizing lip-reading (which I’m very used to)

* Had my first lesson at audio pedagogue (learning to understand speech better), and I could hear almost all the historical dates that she spoke (it was a simple test). I have troubles with distinguishing between certain vowels and between certain consonants. But a pleasurable first lesson with a very encouraging result. But still, a lot of work to do, and plenty of potential.

* Music is developing nicely. I practice every day for several hours. Highlight was “Smoking in boys room” by Mötley Crüe, where I keep being able to separate new instruments. I took a weeks break from Mötley Crüe, and could really tell difference from last time! This time I could single out some guitar riffs. That was a nice feeling, and left me with a big grin on my face 😀 I’d say my music interpretation is now up to somewhere around 30 %

spotify  * Coolest and most unexpected CI-moment in recent days is dedicated to Spotify :-)  I just needed to find various types of music fast, in order to train my CI-hearing. I thought Spotify would be ideal for that purpose, and indeed it is. But, pleasant discovery; the commercial breaks in between features various voices, both male and female, and I have started to be able to understand some of the messages! Every time the commercial break is due, I sharpen my ears and try to decode the message. It’s a little competition with myself 🙂father&son

* My son had the greatest remark today; “Dad, it’s so nice when you can hear me better!” We were in the hall outside his classroom, I was there to pick him up. A lot of other kids and everybody all talking and making a lot of noise. Amidst all this, for the first time EVER, I was able to have a conversation with my son :-D  ) We continued the talking in the car, which is going better and better every time 🙂 It’s hard for me to rely only on the sound, but I have a feeling that it isn’t that far away 🙂

mfg_pillar_of_the_earth_box * I have engaged in an audio book; “The Pillars of the Earth” by Ken Follett, in English. I had read a few pages before I put on the audio book, and tried from the beginning at first. That went really well. I then wanted to fast forward to where I was, and tried the next audio-file. I had to listen for cues, and I FOUND the corresponding text! Not only did I do it just one time, but THREE times! 🙂 I’d say I hear about 20% of the words now… Give or take, depending on type of voice and other ambient sounds present at the same time.

* I decided yesterday that I am going for CI number two. YES, I want stereo too! Just like everybody else! So, have already started the process by setting up an appointment with my physician. I expect to be denied in the first round or two, but I won’t rest until I have reached my goal. I have many means of dealing with this situation, and last word has not been said, far from it!

* I’m having tinnitus issues, on both sides. My CI-side comes and goes, and I guess it has to do with “repairing” the neural network in my brain. My HA-ear has the same old tinnitus, only now it is coming more to the forefront, since my CI-ear is working better and is occupied in dealing with real electronic impulses rather than imaginary ones 🙂 I’m worried how it will develop in the time to come, since I will rely less and less on the analogue ear, and turn my hearing aid off, more and more…  Time will tell. I’m thinking about seeking professional help concerning the tinnitus…

* I discovered that I had huge problems talking with someone who sat on my hearing aid-side, away from my CI, while my CI-side was easier to hear on… This was a clear head-shadow experience!

CI-activation log no. 8 – day 25 – Unbalance

The ever constant dueling between my two brain halves… See the summary at the very end of this post too 🙂

Hearing aid hearing

CI-hearing

The sound waves produced by my hearing aid triggers the few remaining hair-cells in my left cochlea, forming sound sensations in my right brain half I got CI-electronic impulses entering my right cochlea, thus forming the sensation of sounds in my left brain half
My hearing aid provides me with ,as yet, my “normal” sound world. The hearing aid sounds are very familiar to me, even though I know that the last innermost part (estimated less than 20%) of the hair-cells in my left cochlea does the job that’s supposed to be done by the dead 80% that has no functioning hair-cells. This is called “recruitment” (follow the link for explanation). The CI-sounds are very high pitched, unfamiliar and as yet rather unintelligible, since the electrodes covers the part of my cochlea where the hair-cells has been all inactive for a decade or three.
I do not sense high pitched sounds like “S”, “SHH”, “T”, “K”, “P” and so on (aka fricative sounds (voiced sounds are easier, but also very difficult to distinguish; “D”, “B” or “G”)). Neither can I hear alarms from smoke-detectors wristwatches, or home invasion alarms. Most mobile phone ringing tunes and pings and beeps from various electronic devices (alarm clocks, microwaves, stoves, are also out of reach. This is due to the physical limitation of my cochlea. The innermost part simply isn’t able to pick up the vibrations that have higher frequencies. (which was supposed to be picked up by the outermost part of the cochlear if it was still functioning) I can perceive almost all sounds now, from bird twitter to ground shaking bass, but they have very little difference. All sounds have a high pitch-quality so far. This is going to improve in the coming time. And there are so many sounds I still have to learn what is. I get them all into my cochlea, but do not understand them, or rather; my brain isn’t able to interpret them for me automatically yet.
The speech frequencies (the middle part of the cochlea) is pretty much outside the still functioning part of of my cochlea, and I’m relying greatly on various forms of supplements in order to understand speech. Those supplementary strategies and techniques (subprograms) involve lip-reading, body posture interpretation, preparation (gathering intelligence prior to, or after a conversation), greater skills in observance, more used to put myself into other peoples ways of thinking (even almost telepathic, sometimes!), knowing the context and subject of talk, and then there’s the good old fashioned “doing the guessing”. I have to “depress” my “subprograms” in order to learn to use my brains’ capability to break down audio information. This is a frustrating experience, since it is counter to all the learned and honed skills of my subprograms. I’m sure I will learn to become good at that, given time. But now it’s plain painful. Imagine the hearing sense has a representation in normal peoples brain processing at about 35%. Mine is probably down to 15% or maybe even 10%. In other words, I have a “learnt” disadvantage in my auditive sense that I have to train on, and compensate, in order to comprehend the massive amounts of information being fed into my cochlea electronically these days.
I10-85-cochlea2 lobot.3
Music is almost impossible to listen to. The harmonies and cooperation between instruments and and voices are gone. It just sounds flat and dull. Boring, lifeless and soulless. Musical harmonies has already begun to come through. I can sense three or more voices working together in a backing choir in a rock song! I can also hear the vibrato that the lead singer puts into certain parts of a song… I’m almost certain I have never been able to hear that before…
Noise is… well, just forget about it! I can’t even be in a car without having to turn off my hearing aid. It’s just terrible. Distorted and garbled sounds. To the point of torture.
On top of the fact that the noise toleration is zero, it is also perceiving more sound environments as toxic. So much, that in cooperation with my “old” right ear, I have programmed myself to avoid things I need to face now with my right-side CI ear. This issue is worth a whole separate blog post later!
Noise is next to impossible… But! Voices have a tendency to break through better, using my “higher pitch” program (especially out in a street, where the background noise is quite different from voices. Haven’t tried it in a party situation yet). I have expectations to improve in this field using just one CI, but dream of what it could be with two CI’s and proper localization possibilities (and 3D “lock on target” which is possible with two similar ears, aka stereo).
Anyway, hope to exceed any pre-CI era level of my performance in noise even with only one CI.
My left ear used to be my submissive ear, but is now definitively the dominant one. I have great difficulty in perceiving speech if the CI on my right ear is turned on too loud. Frankly it kills any information coming from my left ear, which is where I get the most useful information so far. I’m still 50% audio and 50% lip reading (give or take 10%) when understanding speech. My right ear is now at a level where I can begin to use it for speech purpose. But in order to use my CI-ear, I have to turn off my hearing aid. So at this time I am probably 80% lip reading and 20% hearing for speech purposes.
Look forward to this ear becoming more than 50% hearing for speech purposes.
The left ear is the ear I want to become less dominant now. I want my dominant right ear back in business. I’m turning the sound level on my hearing aid way down most of the time…
I have a feeling it’s overachieving somehow. It’s as if even the sound quality is already inferior to my right ear, my brain prefers the well know sound world with mostly bass and deep sounds available. After all, you don’t deprogram an almost 40 year old brain in less then 3 weeks, right?
I’m training my right bionic ear both individually and in cooperation with the left hearing aid ear. The individual training is the most fun, because I sense so much progress and have high hopes concerning it’s potential.
The cooperation-training is exhausting and frustrating. The sounds are so different, and my brain isn’t even close to be able to use sound information from both ears at the same time. At least not as far as speech is concerned.
Music, maybe, for a short time, but not speech.
A lot of bass, it sounds “true”, but misses a lot of information. Very high pitch, sounds “glassy”, but gets most information.
I don’t want to loose this ear, after all there’s some information left, and I need all audio input I can get.
But give me CI, and I won’t even think twice about it. I need and want duality and balance restored! That can only happen with this damaged ear being re-fitted with electrodes!
Finally, after 4 years of waiting, something new happened. I got my CI. It’s still scary and difficult, but I have confidence in the process and myself, that I am able to transform difficulties and challenges into victories…

It is unbelievably complicated to have both ears running at the same time when they are as different as they are now… 
Imagine having one eye with the world as it is, while the other eye have to see everything upside down! One normal and one upside down, at the same time! Then try to pour yourself a glass of milk, or let alone, drink it!

It’s as if a very fast, tall, and slim lightweight boxer is fighting against a very strong, sturdy and slow heavyweight boxer. They are so different, but both lethal in their own way. I have to endure this uneven fight between my two brain halves all the time, when having conversations with people and need to find balance soon. It is a very exhausting experience…

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Hearing Loss Demonstrator

I wish I came across this many years ago…

HearLoss is an interactive Windows PC program for demonstrating to normally hearing people the effects of hearing loss. With HearLoss you can replay speech, music and noise under a variety of loudness, filtering and masking conditions typical of hearing impairments. Best of all you can interactively change the settings and demonstrate their consequences.

hearloss

Description

The HearLoss program plays back pre-recorded audio samples of some speech, some music and some typical background noise, either singly or in combination. As it replays, three sliders control a simulation of the effects of three common consequences of hearing loss: loss in amplitude sensitivity, reduction in frequency range, and loss in spectral detail. Changes in the amplitude sensitivity slider changes the loudness of the sound, changes to the frequency range slider changes the upper frequency limit of the sound, while changes to the spectral detail slider changes the amount of fine structure present in the spectrum.

http://www.phon.ucl.ac.uk/resource/hearloss/

Suggestions for Use

This is one way you might use the program to demonstrate the effects of hearing loss to normally-hearing people:

  1. Start the music playing and adjust levels so that the audience can hear it clearly. Stop the music.
  2. Explain that deafness is not just all or nothing, but that hearing impairments come in various degrees.
  3. Play music and demonstrate loss in amplitude sensitivity to mild, moderate and severe losses.
  4. Repeat for speech. Point out that difficulty in hearing speech affects our social interactions – we can’t follow what is going on in a group conversation, for example.
  5. Explain that if hearing loss was just a loss in sensitivity, then we could restore peoples’ hearing with just an amplifier.
  6. Explain that most hearing loss is not just a drop in quantity but also a dop in the quality of sound perceived. In particular the kind of hearing impairment asoociated with old age has associated changes in frequency range and spectral detail.
  7. Play music and demonstrate what a reduction in frequency range means: at mild, moderate and severe levels.
  8. Repeat for speech. Point out that even if the speech were loud enough, the loss of high frequencies makes it harder to understand.
  9. Play music and demonstrate the consequences of a loss in spectral detail. The effect of this slider is like looking at an out-of-focus photograph – you can’t see all the fine detail. Get the audience to listen as you bring the slider back to normal – you should hear the signal getting "clearer".
  10. Play speech and noise simultaneously with sliders set to normal. Point out that the speech is still fairly easy to understand.
  11. Add a moderate loss of frequency range and spectral detail. The speech is pretty unintelligible now, although it becomes a bit clearer when the noise is turned off. Hearing impaired people find listening in conditions of noise far more difficult than normally hearing people.

Copyright

HearLoss is not public domain software, its intellectual property is owned by Mark Huckvale, University College London. However HearLoss may be used and copied without charge as long as the program remains unmodified and continues to carry this copyright notice. Please contact the author for other licensing arrangements. HearLoss carries no warranty of any kind, you use it at your own risk.