Sunday, November 27, 2011

Just when you think it's ended, it really hasn't

For some time now, I've thought I wouldn't have any issues with my CI. Nearly two weeks ago, after beating a cold, I developed vertigo and the nausea that comes with it, again. Totally unexpected. Granted, it wasn't as bad as it was when I had it after my surgery or back in January 2011, but it was bad enough that I had to leave work a few times or risk vomiting everywhere (or fainting, even). I had to go back to the doctor for some anti-vertigo drugs to subside it. One pill is all it takes for the worst of it to go away, even though I can always feel it lingering during the first few hours after waking up, for several weeks.

Supposedly, this might still be a sign that I still have Benign Positional Vertigo (BPV) which was somehow set off during my surgery. I did read up that it is a rare risk of the CI surgery, as some stones in our ears can get shook loose during the surgery. In January, my surgeon gave me some exercises to do to subside it, which I did for about two days, then felt better, and figured I'd not bother doing it for another few weeks. It's likely I just need to do those again and see if the vertigo never comes back. But with my luck, it'll be a recurring condition with no idea what sets it off.

Lame.

Other than that, the quality of sound from my CI shifts, mostly seems noticeable when I'm sick and when I've had caffeine. Caffeine is an enemy in my body, even in tiny quantities, and sets off my tinnitus, as well as fatigue, tiredness, and sometimes headaches. The sound shift with the CI is that I become really sensitive to it at the lowest volume and that just tends to aggravate my tinnitus even more. Other times it sounds garbled. Kinda like if you're sick and your voice is compromised but you speak anyway and sound ridiculous, that's what the sounds will come in like.

For the most part though, I'm still hearing rather well with the CI. I am overdue for another test and mapping, however, which I am probably going to need to schedule myself since my audiologist of the past year has taken a job elsewhere. However though, I still have no interest in going bilateral.

Tuesday, May 24, 2011

25% Auditory Improvement

I had a three month CI check up today. We started with the basic beep test... I'm hearing at the same levels I was three months ago, except my high frequency dropped a notch. In my defense, I've have tinnitus going off again this past week and it does affect my hearing tests because I'll assume some beeps are the tinnitus, so I won't click the button, and I'd rather I get that wrong than falsely correct, so I played it safe.

Usually when I do the speech test, there is a mans voice playing from a CD, but the CD player was broken today, so my audiologist did the vocals. This may have biased my results because she's a female, she speaks clearer and I'm familiar with her voice. Even though, the automated male voice is also clear, and males are easier to understand than females, so it might just be that I'm familiar with her. Either way, I got 100% on the speech in quiet and 84% on speech in noise. That's pretty much a 25% improvement from three months ago.

The future speech tests will likely fluctuate in the top 80% due to the way I process speech. For instance, when I hear these sentences, I'm never hearing every single word correctly, but I manage to repeat back the correct sentence by assuming what the missing words were based on the sentence's proposition.
Example: "The girl went to the farm." I may hear 'the girl went to the arm,' but obviously that sounds wrong, so I manage to process that the last word was probably farm.
Otherwise, there's just some sentences where I can't make out half of the sentence and can't even take  wild guess what it was, and that's what gives me a score of 84%.

I mentioned that I felt I might've needed the high frequencies raised due to not being able to distinguish certain sounds yet. She mentioned it's pretty common and there's not really much more the CI can do for me at this point. If I'm not telling them apart, then I just gotta rely on sentence structures and lip reading, which I do anyway. She did try to raise the high frequencies though, but ended up reducing it by 2 points because it was just too intense at the level it was currently at. But she did raise the decibels for high frequencies... which I think she said means she raised the amount of firing the electrode will use to help me hear high frequencies, while at the same time, not raising the depth of the frequencies. Something like that. It's over my head.

So now I've got three settings on my CI: normal, tv, and noise. I hardly ever use the noise one because I'm not really in public much and when I am, the noise isn't bothering me to the point I consider switching modes. Although I should test it out more often because it might allow me to hear grocery clerks better than I do with it on normal. The tv option is so I can increase the CI volume without dealing with the intensity of the high frequencies. This is cause I consider my husband auditorily bipolar. Whereas I like the tv volume at 28, for the same show, he would like it at 38. But if we're watching a movie, I like the tv louder because the vocals are typically reduced for movies so to enhance action sounds, but he likes the tv lower than I do in those cases. So in cases like that, I can turn my CI volume up and hopefully hear more of the vocals. They also have the sounds set like that in theaters, which even with the CI is STILL annoying.

Tuesday, May 17, 2011

Quails and updates

Over all, my CI journey has reached a standstill. There will not be much else to say about it unless I'm a victim of malfunctioning or some random ailment as a result of the surgery or implant (which is all unlikely). Or perhaps if I get a new processor or get to participate in a study... or have a kid or find a job... all, which is unlikely for at least 2-4 years.

As I was pulling weeds in our backyard all week, I was hearing this whining sound that made me think of a dog that is crying. But it was tough to imagine there would actually be a crying dog outside nearly every single day, several hours a day. So when Thomas came out one day and I heard the sound again, I asked him what it was. He says it's a quail. Which is odd because I have yet to even see a quail out here... but for the time being, I guess quails sound like crying dogs. Sad.

I do have another CI mapping in a week; my first one in 3 months. Then I won't have another one until mid August, I think. My CI has absolutely had no "growth" towards hearing low pitch. Everyone told me it would eventually adjust, but it's not seeming that way. I think I once read that the electrodes often don't reach those very deep areas of the cochlea where low pitch nerves reside, so if that's the case, that might be way I'm not hearing any. The only burden is it's tough to actually hear most music the way it should sound. But then again, since my non-implanted ear pretty much only hears low pitch, I seem to have some balance in sounds between the two ears. The only singers I am able to enjoy these days it's people like Celine Dion, Mariah Carey and Whitney Houston. It's all about the vocals and who can carry some pitch. My past taste of alternative rock has gone out the door cause none it sounds the same anymore. Totally bummed.

On the other hand, my ability to grasp high frequencies is still a challenge. I've had one setting on my processor for 3 months now and I have not been able to increase the volume on it by any means... which would have allowed me to hear even more high frequency sounds. So I expect a 5 point increase in high frequencies on my mapping next week and nothing else. But maybe the preset volume is just too high? I'll have to mention it.

My speech comprehension should be better than it was three months ago, despite the lack of practice over the entire 7 months. I have not been able to find any pre-set sentence programs online to practice with, and my husband seems to just always be too busy with something to practice with me. But at the same time, when we practiced for 5 minutes a few weeks ago, I was bombing the word distinctions in a predictable way, likely due to the high frequency settings still being set on the low side, making it hard for me to tell apart similar sounds.

There's news going around that there is a new AB processor that has been developed and is being used (I think) in Europe. It's called Neptune and it's suppose to be small enough to be worn while swimming. Not that I'd ever care about wearing a hearing device while I'm underwater, but IT IS SMALLER! If it spreads to the United States, I might be able to upgrade to it in about 5 years... unless I wanna pay chunks of bucks for it out of my pocket (naw). But my ear will be so excited!

Monday, March 28, 2011

Adventures with the insults of society.

I was talking to my husband a week ago about something and he pointed out to me how rude people in public have been to me. It was fascinating to discover because I've been completely clueless about a lot of it for nearly a decade. I mean, I'm aware of a handful of people that have been rude, but I wasn't aware of how many have actually been rude. Let me clarify what I'm even talking about...

I'm talking about the rude behavior deaf and hard of hearing people (and probably even blind people) experience from the people of society that work in customer service positions, or just society in general. Whether it be a grocery clerk, a fast food server, customer service rep for companies or amusement park works (to name a few). I'm sure many of you have experienced this and know what I'm talking about already.

I remember the first time I experienced something this ridiculous. I was 18, at Taco Bell with my best friend and boyfriend at the time. There were 2 guys at a table next to us just talking really loud, and while I wasn't aware at all what they were talking about, I noticed they just kept glancing at our table and laughing, so I just smiled in response to them. While, my best friend is giving them an evil eye and my boyfriend was acting uneasy. After about 2 minutes of this, my boyfriend snapped at them and walked away upset and me and my friend just went after him and I'm like "what's going on?" Apparently the 2 guys must've figured out I had a hearing loss so when I just kept smiling at them, they kept talking crap to me and I just kept smiling, and my friends just got really pissed off about what was happening and how they were taking advantage of me.

According to my husband, something similar has happened several times while he was in my presence. Once we were at Six Flags Magic Mountain gearing up for that thing where you swing in the air, and one of the workers was talking totally to the back of my head telling me what to do and so on. Of course, I had no idea he was talking to me because he was behind me, but apparently he got all insulting and was like "are you deaf or something?" which I didn't hear, but my husband did and totally yelled at the guy for being so rude because I WAS deaf (kinda). And then the guy felt like a serious douche and left. Again, I had no idea any of this had really happened til he told me the story. All I did grasp was that the guy was being somewhat impatient and rude with me, but it never occurred to me any of it had to do with them trying to talk to me and being unaware I can't even hear them.

Another story is we were at the grocery check out and the grocery clerk was asking me like three times for something, which I didn't hear, and she started to just speak louder and ruder to the point my husband is like "isn't it obvious she can't friggin hear you?" Yea, I guess that made her realize I was hard of hearing that she was being rude. Apparently, this happens to me most of the time I'm at a store and I'm not aware of it most of the time. Not even with my implant, because stores are pretty loud and I still can't hear when clerks are talking to me most of the time unless I'm looking at them before they speak.

After ten of years of stuff like this, I'm still a bit untouched by it all. I mean, I'm flabbergasted that people are seriously this rude to people like me and that I wasn't aware it was happening more than I realized, but I have never let it all affect me much. Quite possibly because it's not MY problem that so many people are rude. If anything, it's all a reminder that society DOES treat those with disabilities indifferent. Sure, they're rude because they think WE are being rude and they don't know why, and that once they realize we actually have a disability, they feel SO sorry as if we're suppose to forgive them, but seriously, it's a show of character on their behalf, and many of them are totally inconsiderate and ignorant and insulting. And it's a wonder I can't a job on my own when lots of you don't believe how seriously tough it is for someone like me to be viewed at an equal level of someone who can hear fine. It's rare and it rather requires connections or someone understanding to look past it.

So really, people, whatcha say ya'll grow more compassion and understanding of how different people are and quit being rude to anyone that doesn't make your life easier. Cause seriously, imagine how easy MY life has got to be. Stuff like this is right up there next to bullying and not everyone is going to react to such behavior as easy as I do. For those of you that have stood by me at some point and stood up for me, love ya'll.

What goes down, can only go back up!

Yep, you read that correct. My hearing may have seemed to decrease nearly 2 months ago, but after my last hearing test, a month ago, everything went back up. My test on basic beeps increased by 5 decibels for 250 hz, 10 db for 4000 hz, and probably 5-10 db for 8000 hz (it was not recorded on my previous test), and remained the same for the remaining hz. As of 2/22/11, I am hearing borderline right on the end of the spectrum of "normal speech level." With that range being 0 db to 20 db. My next test will be in May, and it should show slightly  more of an improvement, but it might not as I might be at my plateau, although improvements can go on for another year and a half, at the most.

My speech tests went back up to. Speech with no background noise was 68% accurate, with only 42% for speech in noise. If you'll recall, nearly 3 months ago I got about 53% or so on hearing in noise. A bit of a drop, but yet, a nice improvement compared to the actual drop I had 2 months ago. I basically got to keep working on hearing high frequency sounds, like "shhh, tsss, sss, etc," as I'm not telling them apart appropriately yet.

Any vertigo, nausea, dizziness I had 2 months ago, is now completely gone. I have been able to drink coffee and alcohol again and experienced no negative side effects. Which is kind of strange at the same time because one beer isn't giving me the buzz it use to give me, and one cup of coffee isn't making me feel fatigued and tired like it did prior to the surgery. Feels like there has been quite a shift in my brains reaction to both chemicals. Besides how great coffee tastes, I'm starting to think "what's the point?" of drinking either. They do nothing; they just taste good.

Other than all that, I am happy to say I can hear birds sing again. It is awesome. We have a handful of "song birds" and hummingbirds that fly around near our backyard because of all the trees in our neighbors backyard. I haven't heard birds sing in nearly 10 years. Also, I think we have pigeons living under our roof and they make a ton of clacking noises. I mean, it's either that, or we've got ghosts or something crawling around up there... but I'm sure it's the pigeons, because we've seen them. And we're going to kill them. (Naw, we're just gonna get them from being able to stay in our roof).

Latest annoyance I can hear: things rolling around in the car when I'm driving. Was a lot less worrisome when I couldn't hear bottles and trash rolling around when I turn corners, but now it's just really annoying that men can't throw their garbage out. (or girls, if you're messy).

How am I doing with conversations? Pretty well. In fact, for the first time in ages, I had a week long chat with my visiting stepdad and I didn't have to say "what?" a billion times or lean in really close to hear him all the time. I felt "normal." It was nice. Now, I can't wait to experience the same with my mom when she visits sometime this year because she's usually a lot harder for me to hear.

Thursday, February 3, 2011

Health improvements

So basically all that crap I went through (vertigo, nausea, headaches, etc) lasted an entire month. I would say over the past week I have noticed the BPPV is practically gone... and I have NOT been doing the exercises I was suppose to be doing. I was suppose to do some 10 min exercises, 3 times a day for 2 weeks, and I probably did a total of 3 of those 10 minutes over 4 days; I just wasn't very desperate to do them (and they're boring) and I felt worse after 2 of them. The only thing I've been feeling is some lightheadedness in the mornings and a few times over the days. And although this motion symptom I STILL have is a side effect with BPPV, despite the lack of vertigo, I've still had the motion blur when I turn my head from left to right. It's not as bad as it was a week ago; I can pull off driving without feeling like I might crash or something; but it's still here. Also, my jaw problems came back a week ago too; awesome.

Other than all that, I mentioned in my last posting how my hearing levels seemed to have decreased... the level of clarity I was acquiring from speech dropped. Until today. When I put the CI on a few hours ago, the voices on tv, and even my voice, suddenly sounded more sharp and clear. We'll see if this is just a day thing or not.

I suspected the caffeine and alcohol were contributing to my problems I've had all month; although it's not confirmed, I have not had either in 2 weeks and I can't help but wonder if that's why I'm feeling better. I have managed to start my 40 minute cardio sessions again and carrying heavy things. Although my balance can be weak at any moment, which is also probably related to the motion blur in my eyes, so we can assume I've got some balance problems now. My surgeon would say it's all part of the healing process. This whole thing has made me a little sad though because I don't think I will EVER go back on roller coasters anymore. To say that at 25 yrs old is depressing. But being able to hear certainly dominates roller coasters.

Monday, January 24, 2011

Previous and latest hearing tests


Dec 21 Audiogram




I had my last hearing test and mapping back on December 21st. I had some basic increases in my mapping as we are still trying to get me use to high frequencies. The following audiogram shows my test results a month after my activation (Nov 9) and the slight improvement I had a month after that (Dec 21). I do not have a copy of the audiogram from today, but only low frequencies increased slightly with my high frequencies remaining the same.
Speech test with background noise





This is a speech test from Dec 21st. I was to repeat 10 sentences as I "think" I heard them; one is done with quiet and the other is with noise added. As you can see, I did exceptionally well on both of these tests back in December, getting 65% accuracy in quiet and 53% in noise.

Speech test with no background noise
The bad news, today's speech test was pretty bad. I only got 22% accuracy on both tests. In my defense, the vocal level "seemed" quieter than it should've been and if this is so, it's likely because of whatever is going on lately that has been affecting my quality of hearing with the CI. For instance, I have been hearing voices sound "crackled" every now and then and just last night, the CI sounded really soft and i had to turn the volume all the way up to hear at where I should be hearing.




























Other than that, I saw my surgeon about my vertigo, nausea, headaches, tinnitus, and facial pain. At first, he was just ready to let me leave and said he thinks my symptoms are just because my ear is adapting to the implant and it should go away eventually. Then I mentioned that the vertigo seems to mostly occur when I'm laying down and he's convinced it's Benign Positional Vertigo. So to fix that, I have to do some really boring "exercise" for 10 minutes, 3 x a day for 2 weeks. There's a 95% success rate that it will go away, but there's a 33% chance it will come back and all I can do is repeat the exercises. I guess the nausea/vomiting just goes hand-in-hand with vertigo-like attacks?? Other than that, he thinks my facial pain and headaches, if not most of the symptoms, are related to my TMJ and that my right jaw is possibly inflamed. The end. He didn't even look in my ear or anything or suggest a CAT scan. What about how I feel "unstable" visually? Does this mean I now have an vision issue on top of everything else? I mean, the unstableness can be correlated to when someone has.. dizziness... my eyes could not focus on movement without giving me nausea and a headache and sometimes something as simple as walking makes my eyes feel like they are reseting themselves because of the thumping of my walk, or the thumping from being in a car. Make sense? I suppose my surgeon would say it's a balance issue and part of the healing. So, I guess all I can do is get a night guard (for my mouth) and practice the exercises and see how I'm doing in 2 weeks. If my attacks hit again, I just take the meds I already have, although the surgeon was specific in saying I should not take the drugs too often unless I really need them.

Guess what I'm hearing right now? Not sure really, but it's sounded like an air conditioner is going off IN my ear since I got the mapping increased. Another reason I'm sure I didn't do too well on the audiology test because the humming is distracting.

I've got another audiology test in a month as a precaution to be sure that my test today was only a temporary setback. If my test results next month are like they were today, then there's possibly something wrong the CI or the CI+my brain/ear/whatever.

Tuesday, January 18, 2011

Health Update

Since my visit to the doctor, I left with some anti-nausea and anti-dizzy pills to basically prevent me from dehydrating myself again, as that seems my biggest threat when I get vertigo and nausea cause I can easily go days without eating and sipping barely one cup of water/liquids. The pills worked for the most part, although I felt like either the anti-dizzy pills aren't working 100% or I'm having side effects from one or both of them that is just causing a small amount of dizziness. It's been two days since I've taken a pill and I feel like I don't need them lately. Lingering symptoms is mostly a deep feeling of lingering dizziness that will definitely come back full on eventually, headaches and tinnitus. Tinnitus use to not bother me very much cause I had it so often and it was usually short lived, but for the past two weeks it's been like a motor going off in my right (implanted) ear and its been always accompanied with a tension headache.

Another side effect, which is the most uncomfortable one, is this feeling deep in my arms, hands and legs that feels like something is insulting my nerves, or maybe my blood. I can't really explain what it feels like; it's just really uncomfortable, makes me shake my arms, take deep breaths, switch positions and wait for it to go away. It usually always kicks in when I'm laying in bed and the only other times I ever feel it, is when I'd drink more than one glass of wine at night.

On a side note, I've also noticed caffeine, in coffee or tea format, and alcohol are setting off the symptoms. Again, no idea why. It's all sudden and I have never abused using either drinks.

So far, I got called in to take a pregnancy test today to rule that out as the cause, because of the nausea and vertigo (apparently vertigo is a rare symptom in pregnant ladies and lasts up to 3 months), and I expect the test to be negative for several obvious reasons. Plus, if it required being as sick as I was to have a kid, I don't think I'm going to ever want a kid cause that's just a death threat. Also, apparently my surgeon is out of the country for the next two weeks, so I can't get a consult from him for another 2 weeks at least. And if my symptoms come back or get worse, I'm just suppose to call his nurse... and then probably go to the ER since they'll be my only option.

I expect to be called in for a few more tests, but I'll find out over the next week or two. Some research I did tonight suggested viral labyrinthitis, but again, dunno. Really can't find any information at all on possible infections post-cochlear implant surgery. All anyone reads about is Meningitis, and I doubt I've got Meningitis, as the symptoms don't match and I had the vaccine.

Another update- 2 hours later:
Uncomfortable pressure, tension and tinnitus in my right ear right now, radiating in the area in front of the ear, up to my temple. Also, I took the CI off for an hour because it's irritating my ear, and when I put it back on, voices are making a crackling sound... like when someone is sick with mucus in their throat and they sound all broken up. It also seems to make the tension and tinnitus worst. I experienced the same crackled voices a few days ago too, but it went away.

Monday, January 10, 2011

Sudden Vertigo and Nausea

I realize it's been a while since a post. My husband and I are in the process of a buying a house, and on top of that, I have my usual school load, which I am behind in. We also left town for a week and that put us behind a week in a lot of things. I will eventually post about my improvements during my last evaluation and audiogram testing, but by the looks of it, I will be back from yet, another, mapping by the time I post about that.

For the time being I wanted to post about my side effects. If they directly or indirectly related to the CI, I do not know yet. But I can't help but think they are.

Basically the day after we got back from a week in California, I woke up with vertigo that lead to nausea and throwing up 3x. Which of course led to not getting much food or liquids. That day was a softer version of the day after my surgery when I was stuck in bed with seriously bad vertigo for 2 days that lead to my being severely dehydrated. For the past week, I've had a little vertigo, a little nausea, and a LOT of sleep. I'm worried that any day I wake up I'm going to have another attack and it totally sucks. So I can't help but think it's related to the CI in some form or another, but I have no idea what is setting it off 3 months after my last episode.

My research shows I may have Benign Positional Vertigo, in which some calcium deposits have gotten loose and this causes vertigo when my head is in certain positions. Which completely applies to me as the vertigo sets in the most when I turn my head while laying in bed. Other than that, yesterday I was pretty normal for the first time in a week, until I was laying in bed watching tv, and it started happening again. Only this time I noticed my fist was under the back of my skull for merely 1 minute before the vertigo kicked in, so now I can't help but think I've got a blood flow problem with my brain stem. Again though, what is setting it off? The only other alternatives are basically, anything, electrolyte imbalances, dehydration, blood infections, etc., which I'm going to demand my doctor take some tests to at least eliminate them as causes on friday. If the doctor comes up stumped because she's going to automatically assume something typical, like dehydration, I'll be off to my CI doctor.

I could also mention I have had lockjaw for 2 weeks now. It is not as bad as it was a week ago, but it's not really opening all the way or being completely pain free when I eat something mildly crunchy. Again, this is another thing I can't figure out what set it off, although my dentist is assuming that if I had a tube down my throat for the surgery (3 months ago), it may have irritated my jaw and set off some inflammation. Again though, it was THREE MONTHS AGO. So ya, I'm stumped. Gotta figure out what is causing these problems all of a sudden.

If anyone else has had random episodes of vertigo and the like after surgery, please do tell me. Cause there is NOTHING about it online.

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