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.
As of today, Dave is in his third week of treatment and so far he is doing really, really well. He hasn’t had any side effects beyond the ones he noticed right away – the dry eyes/skin, and being tired later in the day as well as the day after he takes his PEG-interferon shot. (In other words, we don’t plan big activities for Thursdays!) He was a little disappointed not to have the weight loss side effect; he was joking with me about a week after his treatment started, saying he was probably going to be the only one who gained weight while doing the treatment! Seriously though, he’s maintaining his weight and eating well. We never had bad eating habits to begin with (fast food once in a blue moon, otherwise we make all our meals from scratch with very, very little processed food involved). Now that the weather is warming up we can start taking our daily walks again. So all in all, this is going much better than we imagined it would!
The next monkey wrench will be when he adds in the third (and final) medication, Victrelis (boceprevir). I suspect this medication tends to give people rashes, because the Nurse Practitioner, Mita, mentioned this more than once. If he adds in the Victrelis and still doesn’t have any bad side effects, we’ll both be very relieved!
We went down to Hines VA hospital on Wednesday for Dave’s first official labs since starting his treatment. He doesn’t have diabetes, but the medication tends to raise blood sugar so Mita wanted him to fast just for this lab so she could check his fasting blood sugar. The lab opens at 7 and we live about 45 minutes away (by car) from the hospital. Dave usually takes his Ribavirin at 6 am, but he has to take it with food (to prevent stomach upset) and that meant he couldn’t take it until after his blood was drawn. We didn’t want to get his meds too far off schedule, so we headed out early in order to get him in right away for his labs. That would give us the chance to have breakfast in the hospital cafeteria so Dave could take his meds, and then he had an appointment with Mita at 9 am.
Dave was up around 4 am, and I slept in (!) until 4:50. Neither of us ate (he was fasting, I was fasting in solidarity with him) and after catching up with things online and getting an eBay order ready to ship, we were out the door a little after 6 am. We made good time and they took him right in when we got to the lab. After that we headed over to the cafeteria to get some much-needed coffee and some breakfast.
After we finished eating, Dave handed me the receipt for safekeeping. I noticed it had a little grid on it, so I took a closer look. Every item we ordered had the calories listed! I thought that was really cool, especially if you were an employee that ate at work every day. It’s so easy to overeat, but if you know ahead of time how many calories you’re consuming, it really helps. Of course, I didn’t notice this until after we were done eating, but it’s good to know for the future. I also belatedly realized that the calories were listed next to every item on the sign they had at the station we ordered from. I didn’t realize that at first; I thought they were numbers you could use to quickly order. (Kind of like when you go to Burger King and order a #5 or whatever.) Wouldn’t that have been hilarious if I ordered my food using the calorie counts?! Luckily I didn’t finish all of my food, and I gave my toast to Dave, or I would’ve ended up eating more calories than him (definitely not something I need to be doing).
Then we proceeded to walk off every single one of those calories…I should’ve worn walking shoes that day! We spent the next hour and a half walking all over the hospital, exploring. It is seriously huge! We even walked past a door ominously marked “Weapon Cleaning Room.” (!)
Mita had Dave’s test results, all except his viral load count, by the time we arrived for his appointment. His blood sugar was what it normally is, and his platelets went down a bit but they were still over 100 so they were still at the low end of normal. His hemoglobin was also lower than his baseline count from last month. She said if those numbers go down further, they might adjust his Ribavirin dosage. That also explains why he’s been more tired than usual. Other than that, his numbers were okay and she didn’t change his meds. We go back in two weeks, on May 8, for the third and final class and also for his next set of labs (not fasting this time). He’ll get his next month’s worth of meds and we’ll learn about Victrelis and its side effects.
I guess the viral load number takes a while to process, so Dave is calling on Monday to find out what it is. Hopefully it will be much lower; this will show that the medicine is working and clearing the Hep C virus. The goal is for the virus to be cleared by week 8…if that happens, his treatment will go on for another 20 weeks and he’ll be done. Much better than being in treatment for almost a year!
After the appointment, we headed down to a health fair the VA had going on in their auditorium. It was very, very loud (as those types of events tend to be) but if you got 15 signatures from various booths, you were entered into a raffle…and Dave was determined to enter! We had a good time going around and talking to everybody. Back in the day I would never try to make small talk with so many people in such a loud environment; I would hang back next to Dave and just listen (and smile).
We stopped at a booth dedicated to both colonoscopies and Hep C treatment. Mita was supposed to be manning the Hep C portion but she was still running her clinic, so we chatted with the colonoscopy fellow. I snagged a book, Colonoscopy for Dummies, and when we got home I left it in the bathroom for some appropriate bathroom reading. Dave came out that evening, waving the book at me (he does not ever, ever want to be reminded of his colonoscopy prep, which he claims was worse than going through chemo). He said, “Why is this in the bathroom??” and without a beat, I said, “Well, it’s the most appropriate place in the house. You can read it and it will scare the shit out of you.” It caught him off guard and I must say, we got a long, much-needed laugh out of that!