One thing I haven’t talked about here in a long time is tinnitus. I’ve always had tinnitus in varying degrees; it ramped up quite a bit when I lost all the hearing in my right ear in 1993, and then settled down again after a while. Usually it would go away when I put my hearing aids on. My brain seems to just go a little crazy when there’s no sound coming in, so it likes to make it up, I guess.
If I had tinnitus when I was wearing my hearing aids, then it usually signaled an impending illness or it was a side effect of stress. I’ve never had tinnitus as a result of something I ate or drank (caffeine, for example) or from medication. All the advice floating around on the internet regarding changing your diet to eliminate tinnitus was useless to me. If I was sick, or about to get sick, I got tinnitus and nothing stopped it except becoming healthy again. If I was stressed out, I could usually count on the tinnitus fading away once I introduced sound via my hearing aids. At night, or any other time I didn’t wear my hearing aids, I had tinnitus again. (Sometimes I could keep a fan running at night and the white noise would keep the tinnitus at bay, since I still had some natural hearing before 2008.)
If you’ve never had tinnitus (ringing or sounds in the ear) then it is really hard to describe. You definitely hear the sounds, but you can tell they aren’t coming from an external source. It always sounds different to me – sometimes it’s a low hum, sometimes chirps and beeps, and I’ve also had tinnitus that sounded musical. It roars, it clicks; some days it’s like Morse code, some days it’s like a train rushing through a tunnel.
Whenever I imagined being deaf, I always imagined dead silence. Hearing nothing. Just a big void, if you will. When I actually lost all of my hearing, I was horrified to have sound replaced by tinnitus. It was loud and constant. There was no way to make it go away, because there was no way for me to hear. I couldn’t introduce sound like I used to.
If I dwelled on it too long, it would’ve made me truly crazy. I mean, I had noise in my head all day and night long; the only time I got relief was when I was sleeping. For me, being deaf meant being locked into a prison of constant, hellish internal sound.
Since I knew there was nothing I could do about it, I tried to embrace it as much as I could. I took comfort in the fact that at least it gave me the semblance of hearing something. It wasn’t like someone just flipped a switch and my world suddenly went quiet. Knowing I was at the mercy of this noise, I just did my best not to fight it and, when I could, to find humor in some of the crazy sounds tumbling around in my head.
In those early days, it was just TINNITUS, in the middle of my head. I couldn’t have told you which ear it was coming from; it just was there, everywhere, not one side or the other. Now when I get tinnitus (very rarely), it’s easy to pinpoint which ear it’s coming from. I have it a little bit as I’m typing right now; my CI processors are off while my wet hair air-dries. I have a very low, constant hum in my left ear, and my right ear has a high pitched whine that sometimes turns into chirps and clicks.
The difference now is that I know once my hair is dry, I’ll put on my CIs and the tinnitus will melt away. I’ll hear the sounds of my environment and not the sounds in my head.
Getting cochlear implants completely took away my tinnitus. I had tinnitus after surgery (sometimes very VERY loud, like a roaring train) but once I was activated…poof, it was gone. The first time the house was quiet and I was wearing my CIs, sitting there in actual silence, I actually got teary-eyed from relief. It was so nice just to hear nothing at all.
Now I hear silence all the time. If it’s quiet and I have my CIs on, there’s no tinnitus. If I have my CIs off, I usually don’t have tinnitus. It might sneak in, very quietly, but not enough to bother me and definitely nothing like what I used to experience. If it does ramp up and get crazy, then I know I’m either stressed out or getting sick, just like before.
If you suffer from tinnitus, I know how miserable it is. Believe me. For me, the only cure has been sound…either through a hearing aid or cochlear implant.
Well, The Week is here. I thought I’d sit down and write this morning because I may not get a chance to again for a few days. Sometimes I try to have a coherent theme for my writing, but today it’s going to be a little of this and a little of that.
Dave and I had the house to ourselves on Saturday so it was just us for dinner. The kids don’t like anything with barbecue sauce so the only time we have it is if they aren’t here. We decided to pick up dinner from a local BBQ place and were discussing what to order. After Dave called the order in, he turned around and told me, “Oh, I changed my order. I got the combo, with catfish and …bullshit.”
I said, “You got the Catfish and Bullshit Combo?” (cracking up)
He laughs, says “NO! (trying the word again) Bullshit!”
I shake my head and tell him, “It still looks like you’re saying bullshit. What??”
So he thinks for a minute, then bends his arms and starts dancing around, flapping his arms like a bird. OH!
Me: “Chicken! Pulled Chicken!”
Dave: “Yes! Catfish and Pulled Chicken!”
I’d been watching his lips intently and I realized even though I now knew what he was saying, it still looked like he was saying “bullshit”. (Sorry for all the swearing!) So I pulled him into the bathroom and told him, “Say both words, and watch yourself while you’re doing it.” It’s hilarious – they really do look amazingly similar! Even though chicken has two syllables, you don’t really see them if you say the word casually. (I suppose you could really, really enunciate to make it noticeable but most people don’t talk that way.)
Very funny and very strange!!
I did it! I have been sleeping in my bed for the past week or so…three weeks of recovery seemed to be the magic number. (Thanks, Abbie!!) First I used Karen’s suggestion, and used the neck pillow Dave had bought me. I couldn’t use it the way it’s meant to be used, kind of hooked around your neck from the back (it’s shaped like a horseshoe) because it was too big and pushed up against the backs of my ears, which was painful. So I laid it flat on top of my regular pillow. Then I laid my head on top of it, so my ear and the incision was kind of suspended over the open part of the pillow in the middle. This worked well for the first two nights; the only downfall was a slight ache in my neck from holding my head in a specific position all night long.
Then I decided to look for a really soft, fluffy pillow. Mine is a pretty firm foam pillow and it was just too painful to lay my ear flat on it; the pressure of my head against the pillow was too much. Paige and I went to Costco and I found the perfect pillow! It’s super, super fluffy and you can bunch it up any way you want. Best of all, I can sleep on this pillow with no pain at all, on either side. So I am highly recommending this pillow to any recovering CI surgery patients who are having a hard time with a regular pillow. It’s called the Cuddly Comfort Pillow and the package I bought has two pillows in it.
I just did a search to see if I could find a link to the pillows and apparently they’re only sold at Costco. (I can’t find a link anywhere, but they’re made by Sleep Innovations, the Memory Foam people.) It looks like they recently had a recall (in July) for possible metal fragments that might be in the pillow due to a mechanical breakdown, but I’m assuming they pulled all the suspect pillows because mine doesn’t match the recall number. (Nobody was hurt from these pillows, thank goodness!)
In any case, I’m still recommending them because they are awesome! My son got the other pillow to take to college with him and he absolutely loves it – he is a big fan of soft pillows. My daughter will get mine when I’m done with it and can go back to my regular pillow. Normally I like a little more support than this gives, but for right now, nothing feels as good on my ears as this does. It’s so nice to sleep on my side again!
I have to give a shout out to Miss Petunia, my stuffed animal that was so graciously sent to me by Roxy. Roxy and I were chatting one night at Hearing Journey and she told me that she found sleeping on a stuffed animal was the best way to keep pressure off either ear. The support is just right on the back of your head. It sounded funny but kind of logical, and she offered to mail me a stuffed animal! So sweet.
So Petunia arrived, and seriously, I could not have slept without her. Now that I’m in bed, she has a place of honor in the bedroom but has been retired from active duty. But for those first few weeks, every time I lay down I would lay on top of her. She was the perfect amount of support! I would lay with her head peeking over the top of my head, so I’m sure it looked pretty hilarious.
I don’t think I’ve read about anyone else having to do this, so I’m going to mention it in case it happens to other people who have surgical glue instead of stitches or staples for their incision. I assumed this glue would just…I don’t know, dissolve after a while or something. When I went for my post-op check, the doctor mentioned putting peroxide on the incisions every now and then. I think that was supposed to help get rid of the glue, or maybe to keep things healing well…I have no idea. There were still big sections of glue that I could feel and it was kind of freaking me out. When I washed my hair, my fingers would bump up against this big barrier and it just felt really strange. Once the 3 week mark arrived, I decided it wasn’t necessary to still have this glue on my head…after all, other people had their stitches removed long ago! So I asked Dave if he would do the honors.
It took about an hour to get the remaining glue off both ears. It was a little painful at times because my hair is growing back, and had started growing over the glue. Dave was really, really gentle though and it didn’t hurt nearly as much as I thought it would. Once it was all off, there was a lot less pulling/tugging/tightness and it really did feel a lot better.
Dave took some pictures at that point, so we could see how I was healing. The funny thing was, he gave me his camera so I could download the pictures into my computer. As I was cropping them later on, I was slightly horrified because my ear really still looked kind of bloody and raw. I thought, “Wow, I don’t think I’m healing as well as I should be.” It was bugging me, so finally I mentioned it to Dave.
“Honey…do you really think I’m healing well? I know the doctor said I was, but in these pictures my ear still looks gross and bloody.”
He said, “What?! You can barely even see the scar! What do you mean?”
So I showed him the pictures and he cracked up. It turns out he still had pictures in the camera from the day we took my bandage off and first took photos of the incision. Those were the pictures I thought were recent. Way to give me a heart attack!
Here are some actual recent photos, 3 weeks after surgery:
My tinnitus has changed a lot in the past week or week and a half. It’s coming equally from the left and right side now. There are still periods of it being very, very quiet and other times I get this screaming, extremely loud sound that makes me want to clutch my head in agony. (Thankfully it never lasts for very long.) But the biggest change has been the actual sounds, or noises if you will.
My tinnitus used to just be vague sounds, like the ocean roaring, beeping or buzzing. Now it’s beginning to actually sound “real”. Somebody knocking on a door, and I mean, it sounds exactly like that. I hear the plucking of guitar strings, and it sounds like actual music (although not a whole song). The main thing I hear right now sounds like an organ, very bass sounding. I hear what sounds like something dropping into the water, or drips of water. And jungle noises. Seriously. It sounds like a National Geographic special, with animal noises! I’ve actually laughed out loud over my tinnitus recently, because it’s just so ridiculously lifelike and weird. Sometimes I wish I could record this, so people can experience what goes on in my head all day long.
I can’t believe I’m saying this, but I think I’m more nervous and scared about activation than excited. People will say, “Oh! Aren’t you excited?? In a few more days you can hear again!” And no, I just haven’t even really been thinking about it. It’s actually the furthest thing from my mind right now. I think I’ll be more focused on it after activation, once the kids are set as far as school goes. Then I can focus on what I need to do for my hearing.
I just have no idea what to expect, and it’s hard to let my mind go there for very long. Since I had such a vibrotactile response to my hearing test during the CI assessment, I’m worried that the CI’s will just vibrate my head to the point where I can’t tolerate it. Those hearing aids they had me wear were like torture devices. I couldn’t hear anything but my head vibrated so much I couldn’t even keep my eyes open. They made me completely dizzy and nauseous.
So I guess I’m just avoiding thinking about it, and I’ll let the experience be whatever it is. Once I know what I’m dealing with, then I can move forward and work on the areas that need work as far as hearing goes. There’s just too much unknown right now for me to know how I feel about it all.
I’m going to finish this off with pet pictures. Who doesn’t like to see pictures of cats and dogs?! These are the furry members of our family:
So, life is slowly returning to normal. For a while there, it felt like I’d be in recovery from surgery forever. Like a new mom who feels she’ll never again sleep through the night, I felt like I would never again be able to walk down the hall at anything other than a slow shamble.
Well, I actually power-walked down the hall today. I even half-bent my head down to blow dry my hair after my shower! All these little things that are like mini victories…the first time I sneezed and it didn’t feel like my head was going to explode. The first day I only took one nap, and then…gasp…no nap at all! The first day I went without taking any Tylenol. Every day things slowly fall back into place.
I recognize the face in the mirror now; no more swelling. Even the sides of my head (where the implants are) are starting to go back to normal. I can turn my head a little faster, without worrying that it’s going to make my head spin.
The only real reminder that I’m still recovering, besides the glue and tightness by my incisions, is the fact that I’m still sleeping on the couch. I never did figure out how to keep myself from rolling to one side or the other in my bed. Abbie mentioned being able to sleep on her implanted side after 3 weeks, so I have hope that I’ll be back to my bed within a week or so. I think I’m just going to wait until I can comfortably sleep on my side before I do that.
Now that I’m not focusing constantly on recovering, my mind is starting to wander to the next big milestone…activation day. As strange as it sounds, considering that is the whole reason I went through this surgery, I just couldn’t even begin to think about the day they turn the implants on. It didn’t even matter to me – I just wanted to heal and feel like myself again. Now, though…I can’t help grinning a little every time I realize it’s only 2-1/2 more weeks!
Of course, as things always seem to go, there’s all kinds of drama involved with the day because it’s also the day we have to register Paige for freshman year of high school. This is a huge thing – the day she gets her schedule, her books, her locker assignment, and apparently a t-shirt and group assignment for the freshman orientation program that she has to attend the following day, August 21. I really wanted to be with her for this – we had planned to walk her schedule after we got her books so she can see where her classes are. The problem is that they scheduled her for the 12:00-12:20 slot. We have to leave at 12:00 to get to my activation appointment, which is at 1:00 (and will last for 3 hours).
We called the school, explained the situation (to two different people, in fact) and they refused to budge. So the next best thing is to have my mom take her. This means that neither my mom or Paige can come with to the activation, which was really disappointing for both of them. And I’m really disappointed that I have to miss her registration day. I do have a plan – I’m going to take her up at 11:30 and play dumb, like I didn’t realize we couldn’t go early. 😆 There’s a chance they might just pull her schedule and send us through the line. We won’t have time to walk to all of her classes like I’d like to, but at least I can help her through the book buying stuff.
I’ve been thinking about my attitude once I get activated. I know better than to get my hopes up, so I’m not expecting to understand speech right away. I know it just sounds like beeps or buzzing for a lot of people. I’m hoping that the novelty of hearing any sounds at all will be good enough for me. I just hope that I’m able to have a good attitude about how bad things will probably sound at first.
When my hearing aids would need repairs and I’d get a loaner, it used to drive me crazy. I would have to really concentrate on not snapping at people and just generally being crabby because everything sounded so bad and not like what I was used to. I like to think that having lost all of my hearing since that time would be enough to change my attitude. Instead of feeling entitled to hearing at a certain caliber, I hope that I’ll just be happy to hear at all. I know my brain needs time to learn how to hear with a CI, and the only way that will happen is for me to wear it all the time and practice. There’s no way for me to know ahead of time if I’m going to be gritting my teeth and thinking, “Argh! It’s driving me crazy!” while outwardly smiling and listening and trying to keep a good attitude.
So I wonder about that. I wonder if the external processors will hurt my ears at all or if it will just be like when I was wearing my hearing aids. When I tried them on during my CI assessment, they didn’t feel any heavier than hearing aids. Still though, I’ve heard a lot of people talk about them hurting or needing to use moleskin to make them more comfortable.
Besides the voices of my loved ones, one of the first sounds I can’t wait to hear is the meowing from my cats. They all have such different meows and I’m curious to see if I can detect that with my CI’s. I always joke that the cats are the easiest ones to lipread around here! 😀
I can’t remember if I’ve talked about tinnitus yet. The first few days after the surgery, it sounded exactly like oil popping in a frying pan. It was actually not very loud the day I had the surgery, but either the next day or second day, it did get extremely loud. The super-loud tinnitus didn’t last for very long, not even a whole day. Then it really settled down. I’ve noticed I now get the tinnitus in both ears fairly equally; before, my left ear had constant tinnitus and my right ear (which has been totally deaf for 15 years) was just recently chiming in every now and then. So I have usually 3 or 4 different sounds going on in my head, from both ears, constantly. I don’t know why it doesn’t make me insane, to be honest. For some reason though, maybe because I’ve had tinnitus for as long as I can remember, I just don’t really get bothered by it. It’s just what I expect to have, I guess.
However, it really quieted down after the surgery. I realized that there were many times the tinnitus was so soft, just like a low humming, that it was almost as if it were gone. It’s the closest I’ve come to actual silence since I lost all of my hearing in April. Before, the tinnitus always went away as soon as I turned my hearing aids on. I’m wondering if that will be the case when I get my CI’s activated, or if the tinnitus will still be there. It will be kind of weird to try to listen to sound over the tinnitus, since that’s not something I ever really had to do. I’m used to just having tinnitus sounds and nothing else, or hearing regular sounds without tinnitus. Combining the two will be new for me.
That’s where my mind is wandering to these days. It’s a welcome change! 😉
I think it’s been happening for about 2 weeks now. The first time it happened, it startled me as much as it would if I could suddenly hear again.
Have you ever used one of those metal noisemakers they give out at New Years parties? The ones I remember were rectangular with a little spinning handle on one end. You held onto the handle and with a flick of the wrist, the metal part would spin around, making a weird kind of clicking noise. It used to remind me a little of the sound it makes when you put a playing card in the spokes of a bicycle wheel and ride around.
Well, lately my right ear, which has been completely deaf for over 15 years now, comes to life at times with short tinnitus bursts that sound exactly like one of those noisemakers. It never lasts very long, but it’s very loud!
I never really thought about which ear I was hearing tinnitus in. It just felt like it was in my head in general. But now it’s very obvious that the musical constant tinnitus is coming from my left ear. My right ear has only recently begun chiming in. Now I have tinnitus in stereo.
There can be 3 or 4 different sounds going on at once. I get the constant sound from my left ear and periodic “boop”, “whirrrrr”, “click click” from the right. It’s so amazingly obvious that it’s coming from my right ear that it was almost exciting the first few times I heard it! It makes me realize how long it’s been since I heard things from both ears at the same time.
Even though I was an adult, in my 20’s, when I was wearing a hearing aid in my right ear and my left ear was unaided (even though I had a moderate hearing loss at the time), I can’t remember hearing sounds in both ears. I really can’t imagine hearing in stereo.
…oh, how I miss it! I used to really enjoy just sitting in a quiet house, with the absence of sound. I’m sure there were sounds there but with my level of hearing loss, I didn’t hear them. It was just nice, peaceful and relaxing. Around here, the phenomenon of a quiet house didn’t happen often but when it did, I always enjoyed it.
Now, there is never silence. It’s like I’m living inside a noise machine all day and evening long. The only break I get is when I’m sleeping. All day, constantly, my head is filled with noise. Twittering, whistling, roaring, beeping, whooshing…I hear pipe organs, engines revving, phones dialing, modems booting up, ghostly moans and sounds like a UFO is landing on my lawn.
When I first lost my hearing, I welcomed the tinnitus because at least I was “hearing” something. Anything. It kept me from panicking completely. But now…well, it’s been over a month. I’m a little tired of this crazy racket my hearing nerves are producing. I know I can’t escape it so I try not to dwell on it and frustrate myself. But geez! A little peace and quiet, please?! What I wouldn’t give to be able to put in my hearing aids like I used to, turn them on and “hear” the tinnitus fade away.
Is it crazy to say that when (when, not if!) I get my cochlear implant, the first thing I’m going to look forward to and hope for is some blessed silence?! I wonder if that’s how it works. On activation day, does the tinnitus disappear when you’re wearing the CI?