The second implant is now in place, and all went well. Today is 2 days after operation and I’m a little dizzy and not feeling great. Almost like a little hangover. I didn’t sleep much the first night, and avoided sleeping during the first day. I slept through last night, 9 hours.
Priority now is to just take it easy.
This second operation was performed by chief surgeon Dr. Med. Marie Bunne at Rikshospitalet. I was operated on in the “intervention” operating room. In this room they have a sophisticated kind of X-ray equipment which allows the surgeons to view the actual insertion of the electrodes on a live camera X-ray. So the whole idea was to give me special treatment during this surgery, given the fact that I had some bad trauma after the first implant. I struggled with balance for three months, and suffered severe/extreme tinnitus after the first implant.
Dr. Med. Marie Bunne specializes in gentle surgery (article at HLF about Dr. Bunne), and let me tell you: I can feel the difference!
After the first surgery in 2009, I could barely walk, balance was thrown, the muscle that I chew with was sore and aching for weeks. My head felt like a balloon. After THIS surgery, sure I am in pain, but I think I will, on day three, not need more painkillers. I have no notion of swollenness (barely visible below my ear), no sore muscles. All I can say regarding effects from surgery on day three is a slight metallic aftertaste in mouth, and some dizziness, which I suspect is due to pressure from fluids building up in my inner ear. Allthough I’m dizzy, my balance is fine. Slight feeling of vertigo.
They have taken imagery of my first implant in my right ear, which is due for analysis in a few months (tonnes of material, one guy to analyze… budget situation or something ) Will be interesting to hear what they find on those images, if the electrodes are badly postioned or what…
The currently used electrodes from Advanced Bionics are slightly thicker than the elctrodes from Med-El or Cochlear. Advanced Bionics are currently woking on getting approval of those new electrodes from US FDA. I found out I did not have the time to wait for those…
I’m now, FINALLY, bilateral. Can’t wait for activation and actually start to use both ears again
You people must become fed up with all these “Status update”-posts, no?
After this rather long and 5-way split Status update, I realized there are some other health issues that needed addressing.
It also serves as a reminder to myself that the purpose of this blog is mainly to be like a medical journal (for myself and others who might need the info).
It is still sounding the same as it did when I started being bothered by it, with a rather constant “UUYYUUUUYYYUUUUYYYUUUUUYYYUUUYYYUU….” around 1 to 1,5 KHz. It’s worst on the right ear, and it varies in intensity (or strength/volume) according to how tired I am. I don’t know if that means that the tinnitus is worse because it’s actually louder or if it’s because my tiredness makes my brain more susceptible. It is a matter of perception I think…
General health, back to regular training
I have started training again, after a whole year without any training regime whatsoever. The body seems to respond well to the exercise as opposed to one year ago when any exercise gave me pain and aches in both bones and muscles. My goal is that my little overweight shall become less during this winter instead of becoming more as it usually does during the dark season.
The chronic pain in my knees is fading. This is a little miracle for me, because it was troublesome to just take the stairs at times. I thought the chronic pains was a one-way ticket into some sketchy knee-surgery-history. I’m glad I was wrong 🙂
I have become conscious about the fact that I can not and should not run anymore in order to save the knees from more wear. So my focus has been switched to alternatives like kayaking, biking and swimming. And that is all right by me.
I have a theory that the level of stress in me the latter years made my immune system turn on my own body as a warning mechanism (the signal being: slow down!). I don’t know if this makes any sense, but what if the immune system reacted so strong to the state I was in that it actually attacked parts of me it was not supposed to attack? I know, it’s a wild theory, so if anyone has any views on this I would appreciate any comment. I googled on the term “autoimmunity”, but those articles where mainly oriented toward causes for arthritis and diabetes. I didn’t go deep though…
Up to a few weeks ago my whole body felt good and I was without any chronic pains for the first time I can remember in my adult life. Back pains are gone, and the last remaining symptoms with muscle pains in my thighs has disappeared.
Headaches, the severe light sensitivity (photophobia) and some other smaller symptoms related to vestibular disturbances also diminished this last year. Even my worn knees are improving painwise, ie. they don’t pain me as much as they used to. I can almost run and almost walk the stairs without pain. All in all, this summer was a great physical experience. This last year I have taking a break from any physical training, because my body told me in the fall of 2007 that it couldn’t take anymore. Even swimming gave me muscle and skeleton pains. Clear signals that I could not ignore.
This summer, part of my vacation was in Poland with good friends and together with my son. We went on a one week trip to an area with great biking trails. And we went on long bike trips every day. This time my body responded well, and I have now started training again. Swimming 1-2 times a week, and some bike trips in between. I look forward to loose a few kilos this winter, instead of gaining them. My knees, who are still protesting in stairs, will thank me for that.
I stated earlier here that I have regressed a little, and this reflects and manifests itself in my body physically. My neck has become stiff again, and my shoulders are constantly aching and uncomfortable.
I keep waving my arms and tilting my head in all directions in order to keep it “loose”. I suspect that these symptoms come from stress are related to the breakup with my girlfriend. She means a lot to me, but the long distance relationship we’ve had since the beginning took it’s toll on our love. She couldn’t bear it anymore. I don’t blame her and I’m not bitter. She made me feel much better a whole year in this very tough part of my life. I hope I made her life better too. I think so. Even though her breaking up with me is still a little mysterious to me. I wonder what would have happened if I had gotten that CI long ago??? Would I have become happier and have more humor and strength? The future will tell what happens to me after the CI-operation.
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…
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.
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.
I just sat very comfortably in my favorite chair in front of my computer for two hours, doing some work that requires concentration. I had no sounds to distract me, since I turned my hearing aids off for the work-session.
I can’t stand the sound of the fans, even though I have water-cooled most of my rig, the hard-drives give off too much heat for the whole thing to be able to run without fans… I think the sound can’t be much more than 17 – 20 dB (according to fan specifications), and that’s a faint sound, really. But my hearing aids are the most powerful there is (to my knowledge) and they’re cranked to the max. (Widex Senso Diva). So I turn them off more and more these days…
The recruitment is killing me if I don’t turn them off.
The tinnitus is there as always, but not really bothering me concentration-vise. It’s sort of comforting, since the sound now has a rather steady tone. (before it was a chaos of frequencies and variations in strength/volume)
Anyway, I sit, my head is not moving, my eyes are only fixated on the screen, and my concentration goes to the task at hand. The first hour goes fine, no problems.
The second hour I start to get physical sensations in my head. It is like pressure building slowly up.
I had a good night and I’m not tired. I have no stress to complete the work I do, and have no deadlines for anything. It’s Sunday 🙂
Then suddenly I get these auditory sensations, it’s like a silent storm. I can feel it somehow. Not like pain, it is not unpleasant, it’s just a sensation of very weak electric current in my brain. Like a blanket of electricity sliding back and forth like the radar screen image. It’s like a soft “wooosh” inside my brain…
The sensation that I have are connected to my ears, and at the same time they affect all of my brain (at least it feels like it does). I have no control of this sensation.
I wrote about this sensation before, connected to a pre-sleep phenomenon. This is very much the same, only now I get it during daytime too…
Seconds after this “wooosh”-sensation I feel dizzy (I guess there’s some kind of activity affecting my Vestibule where the balance-nerves are situated). It’s a weak vertigo, even though I sit still, are at peace with no stress. And I know I don’t have Meniére, thank goodness…
After this my ability to concentrate is worse. It’s difficult to keep a thought for as long as I like. My mind has always been a multitasking one; while doing one thing, my mind has been working out what the next thing I should/want to do… This is impossible in the state I’m in after only two hours of working effortlessly… It’s frustrating for me, because if I’m doing something that gives me a thought that I want to pursue, the short-term memory isn’t working as I’m used to. So when I complete the task I worked on, I KNOW that there was something I thought of doing, like searching for a special kind of information, or look up a certain fact etc. etc. But it’s gone… Sometimes I sit for 10 minutes of more, pondering what it was that ignited that thought, trying to reconstruct the idea for myself… Sometimes I get it, most often I just move on… I can’t let it get to me.
In short it makes me feel like I’m cognitively amputated… The SUDOKU-thing helped me understand this better…
And by writing this now, and concentrating on the subject and all the aspects of writing, I feel I’m pushing myself… I’m starting to get a headache now… This is the part I do not understand at all…
I haven’t heard a sound all morning (it’s now 12.30, I started working at 9.30). I know my hearing is disappearing, and the tinnitus is singing it’s tune. But why is it a strain for me to do something that doesn’t affect my hearing? Why do I get this dizzy feel, why the headache, why the memory-problems, why the multitasking problem, why the feeling of fatigue? Can it be that the optical-nerve also lies close the the nerves of the auditory nerve and the balance-nerve? It is all connected somehow…
My jaws feel like they had a punch (they’re sore, like I chewed gum for a few hours). My temples hurt a little bit. The dizzy feeling is there (but I’m not having trouble with the balance, though).
This state/condition will last all day, until late at night, then I feel better again, but the paradox then is that I need to sleep. I might me tired, but want to stay up because the world feel somewhat more vivid to me. Is it connected to me originally being a B-person? I’m not extreme, have no troubles getting up in the morning whenever… (but used to)
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.
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!)
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.
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.
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…
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…
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….
Still suffering from that common cold I reported on a few days back, I feel it takes forever to recover. I’m an impatient guy who hates to be slowed down. But I guess the years have given me at least a little more of that precious patience. When I grew up i was prone to get ear-infections and had more than my fair share of common cold and alike.
This time it has been a while since last round so I notice things more vividly. I am even more baffled by the impact the clogged sinuses and all other symptoms have on my hearing. Talking in a controlled environment is harder, thus giving me even more strain by communicating. Being in noisy environment communicating is virtually impossible.
I have become quite obsessed these last years about dressing myself properly to avoid getting cooled down and thus more vulnerable to catch a cold os something similar. I make sure to stay warm on feet, head and neck as good as I can. I can sense when I get bugs in my body, and mostly I feel I’m able to beat it down before I get sick. It takes a few hours sleep and a lot of heated beverage like milk with honey in it 🙂
Sometimes I wonder if I’m developing paranoia for illness, or if I’m a hypochondric…
Speaking of hypochondria, I remember when I was young I was often accused of being hypochondric, because I complained a lot. In retrospect I can understand that, and at the same time, I understand my own behaviour. What I didn’t understand was how I was affected when I had a cold. And being young and utterly impatient the feeling of increased isolation and deafness wasn’t easy to deal with.
Over the years I have slowly come to terms with all the issues concerning my state of hearing, and I have also developed this “smartness” in avoiding getting sick. I’m quicker to sense when the air is getting colder on the evening in the late summertime/beginning of fall. I know my own body better and treat it with more respect than ever before.
I do exercises on a daily basis to prevent back and neck-pains. I have gone a few rounds with my physician, and have been able to determine that my right knee has a injury to it that needs closer attention. I guess I’m simply more bodily aware than ever before, and that is a good thing, because I need to optimize (compensate) for the secondary impacts of my near deafness on my body.
For example, my back pains originate in the fact that I use my neck to protrude my head when I have trouble hearing (you know; putting my ear out to signal that I do not hear properrly). Over the years that have resulted in a neck that does not harmonize, thus straining my back further down, causing secondary symptoms.
A course with a psychomotoric therapist and advices from my girlfriend has taught me this.
The exercises I do now really feel beneficial to me. Amount of back pain is reduced to almost nothing. Headaches caused by stiff neck and stress is reduced. All because I won’t stop trying to figure things out….
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 pressure 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.
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…
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:
The emotions manifests into:
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!
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.
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…
Symptoms from too much sounds:
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.
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….
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.
Recently I have tried to explain to people close to me how it really feels to loose the hearing the way I do. And I have become quite inventive and in the light of my newfound inner strenght, I have also found the courage to be honest about it to myself as well.
In that aspect, I keep getting these epiphanies. Here’s one in the form of an allegory:Imagine a ordinary glowing light bulb. Most of us have experienced that sometimes they get this extra light strength. You know it’s a dying light bulb… And if you turn the light off and then attempt to turn it on again, it won’t be glowing anymore. The bulb had a glorious shine before it died.
The same way, only in a longer timespan, it feels with my hearing. I complain about my mother’s high voice, or when kids yell like they’re 20 meters away from me even though they sit next to me. It is close to painful, and it makes me quickly more tired. Other adults around me do not react
I think my hearing-aids creates sound that is a little too much for my hearing organ (the eardrum and the connected parts that form my inner ear) to carry. It worked for a time, but with every new generation of new hearing aids, I crank up the volume a little. Now it’s obviously enough. On top of that, I think my brain desperately tries to wring every decibel out of my ears. That gives a combination of cranked up hearing-aids and a brain running wild!
It might be that my brain actually overcompensates and give me a form of oversensitivity as the last remnants of my glion hair cells in the cochlea slowly are becoming unable to transmit the effect of sound vibrations…
T his is merely an attempt to explain how it feels and how it is. In time I hope I will find even better allegories or ways to illustrate the process I’m in….
I’ll keep searching for an understanding and an explanation…
I just read some of my former posts… And one thing suddenly occurred to me as a difficult thing to understand; the fact that I get tired of what could be best described as faint noises… How is that possible when I’m so hard of hearing and next to deaf?
Well, the explanation is that the hearing aids I use are tuned to it’s maximum, perhaps a little over the top too…. For me a tractor working on a field a couple of hundred meters away from where I sit is audible (and annoying). The refrigerator has been mentioned. I pull out my hearing aids and listen to the tinnitus instead, it is less tiring actually.
All the faint sounds represent sound pollution to me. Since I need to rest (my hearing) when I’m not communicating verbally or when I have the (nowadays) occasional music listening experience, those faint sounds becomes obsolete sounds. That is by definition noise, to me.
My brain constantly seeks better understanding of the sounds it receives, and thus drains my resources constantly. That is how it must be. But when almost all the hearing has gone, the brains tries to compensate by working harder. My eyes (aka curiosity) seek out visual confirmation of the audio-signals the brain receives.
The hearing aids are designed to enhance ANY sound it receives. It has no way of making a distinction between noise and needed sounds. THIS fact causes overload on my hearing organ and my brain, since this is a constant condition.
The brain is the most fascinating organ in our body, as it is able to compensate and change during our lifetime. Loss of hearing causes other senses to kick in stronger, and when sound is still present, the brain will obviously continue to make the most of it.
The problem presents itself when I, as a human being, are met, and lives with demands that is contradictory to the auditory loss. Add the strains of everyday life in terms of stress, work, rush hours, information overload etc etc, and you have the recipe for a brain blackout if one is not aware of the danger of it.
Plus, I have to work extra hard to communicate with everyone around me. In that I have no choice. It is not an option to isolate myself from the real world where people I love and care for are. If I do that I am certain that depression and darker days will follow. That makes things worse.
Oh yes, I have for a long time wanted to describe a re-occurring phenomenon that takes place just before I fall asleep. Obviously I have taken out my hearing aids some 10 to 20 minutes before…
It is like a switch is being flicked inside my ears and head. Difficult to describe, but I will try…
Imagine you are on a voyage in a plane or a boat which makes a constant high-pitched engine-noise. This voyage takes all day long, and the noise is there all the time. And just before you fall asleep, someone turns that noise off like magic. It’s like landing on soft cotton-clouds after being tossed and heaved around all day… I can feel a “wave” of electric current sweeping from the front of my head to the back, very quick. It’s like the shock of icy-cold water thrown on your head while lying down, only that this sensation is rather pleasant…. Does this makes sense?
This sensation occurs every night just before I fall asleep. When it happens, I know that I’m seconds away from sleeping…. Very pleasant and soothing.
If anyone has experienced similar, I would like to know. If someone has an idea something might explain this phenomenon, I want to know…. 🙂
A timeout for myself. My girlfriend has started her new job at a beautiful place next to the longest fiord in the world; Sognefjorden. The mountains surrounding us on all sides makes this a very special place…
My plan for this timeout is to simply chill. To take a trip within myself. I plan to take some long walks, go on bicycle-trips, see some of the Tour the France, develop some artistic skills in writing and drawing, and of course to help my girl get started at this new place and spend some quiet calm time with her… We need that now…
As for my condition; I still get quickly tired. Today I haven’t used my hearing-aids at all. I just sit here listen to my tinnitus come and go (I have noticed that the tinnitus disappears when I engange my brain into creative activities). The refrigerator here is making a little noise, it wears me out quickly and I don’t even notice it before it’s too late….
Lately I’ve been thinking that maybe I developed some kind of hyper-sensitivity to sounds as well? Is it possible? I mean, I’m loosing my hearing, how can I be hypersensitive for sounds? I read in a newspaper about a guy who had been over-worked, and he told the readers about how he couldn’t stand the sound of newspaper rattling or crumbling. That sort of things…. It makes sense: input overload gives hypersensitivity… It’s a natural reaction to excess input….
I try to listen to music every now and then. To my disappointment, I cannot endure for long. One year ago, I could listen to music for hours. Now I usually have to turn it off after 90 minutes…. And I have started turning the soundlevel down as low as I can. I can’t hear the music as well as with louder sound, but that way I can listen a little longer. Still it’s very limited. It’s just sad. I love music. I always did. Energetic music, moody music, love music, medtitation music and so on. The quieter and slower music doesn’t give me anything anymore. I loose too much of the whole soundpicture for it to be enjoyable. That leaves me with the energetic music with a lot of rythm. The rythm is good. My brain remember many of the songs and certain sounds I cannot hear, I can remember….
Jeez, tired already… I’ll write more in the next few days….. I have more news, but that’ll have to wait 🙂