"Do You Hear That?"

My name is Jackie, and I've had tinnitus since August 2012. I remember lying in bed and saying to my husband, "Do you hear that?" (Spoiler: He didn't.)

This is my first post, but I've been reading a bunch of the posts here over the past week or so. Just knowing there's an active community of people who really, really get it is enough to keep me from feeling completely overwhelmed and lost. I'm so sick of sympathy. What I've been hungry for is understanding, because even though I've got incredibly supportive family and friends, I've been feeling terribly alone. So before anything else: Thank you. Deeply, truly, thank you for understanding.

Since that night in August 2012, I've heard a high-pitched whine in my left ear nonstop. And I do mean nonstop. There's no break in the whine. It doesn't come and go. I read on a blog post (not on this group) somewhere that one person likes to think of it as "the sound of the universe." There are times (like now) when the universe is too damn loud.

I hear my tinnitus over the shower. I hear it over loud music. I hear it over the television and movies and traffic. I seem to hear it over everything -- almost like there's an impenetrable cone around the whine that slices directly into my brain. I hear what other people are saying; I hear the sound of birds and my keyboard as I type this and my cat cleaning his face. But I also hear the high-pitched whine. It's distracting as hell. And at times, it's so distracting that it's upsetting.

And then there are times that I feel borderline panic, because in the past few months, the tinnitus has gotten worse. More noticeable. Louder. And it now happens sometimes in my right ear too. Up until a few months ago, the tinnitus was there, a background whine in my left ear, that was a bit annoying when I thought about it but was manageable because it was just a background whine. But now, my tinnitus is my constant companion, my steady sound of the universe piercing my brain.

Sometimes, when I'm lying in bed at night, trying to go to sleep, I hear the whine in my left ear and a different whine in my right ear, and I feel like I'm tap dancing close to insanity.

Recently, I went to an ENT and had a batch of tests done. Minor hearing loss in both ears (age-related, apparently; who knew that 45 was old enough to have "age-related" anything?), and cochlear damage in both ears, much more in the left than the right. But everything else works. No tumors or anything scary like that causing the tinnitus. The ENT said that I need to learn how to cope. I wanted to punch out the ENT's teeth.

I used to think that having chronic Raynaud's was the worst thing that I'd have to ever cope with. If you're unfamiliar with Raynaud's, it's an autoimmune disease that causes vaso-spasms (constricting of the blood vessels) in the fingers and toes (and in some cases, nose, ears, and other areas). Temperature change and stress are two known triggers of Raynaud's episodes. I'm one of the few who gets Raynaud's episodes every day. (One of my doctors simply couldn't believe that I had daily episodes. "It's August," he said to me, like I was pretending that my fingers went white and then blue, because it was the summer in New York and obviously I couldn't have Raynaud's in the summer. Some doctors get annoyed when you don't fit neatly into a box of symptoms.) I've had Raynaud's for about two decades, and it's gotten significantly worse in the past few years. I've tried medication for it, to no avail (actually, a bad reaction to the medication -- constant tingling in my fingertips, lips, and tongue). I've tried modifying my diet and exercise in a variety of ways, with no change.

My husband and I think there's a correlation between the Raynaud's and the tinnitus. My doctors haven't ruled that out, but they don't know what to do with that possibility. My rheumatologist ran tests and says that the Raynaud's isn't causing the tinnitus, that the Raynaud's is "primary" and therefore not indicative of an underlying condition. I still believe that the two conditions are related.

I get that there's no cure for either of these conditions. But I want to understand what caused them. I want to know that the Raynaud's and the tinnitus didn't just happen. I want to understand. And yes, I want a method to help me with the tinnitus, because I feel like I'm slowly going crazy.

Not related to any of this: I'm a black belt in taekwondo (along with my husband and sons). Over the past six weeks or so, I thought I had broken my big toe or had gotten a stress fracture on my left foot. My orthopedist said it was severe arthritis, complete with bone spurs. I haven't been able to do TKD properly or regularly in weeks. One of my stress relievers, gone.

Yeah, woe is me. Can you feel it?

Please forgive the long and somewhat rambling post. Lately, I feel like there's been a perfect storm of crap -- the tinnitus, the Raynaud's, the arthritis -- that's been affecting my quality of life. I could handle the Raynaud's -- I have arthritic gloves (both full-fingered and open-fingered for typing) that help, and I have Hot Hands with me at all times, plus a space heater at work. I could handle the background tinnitus. I could handle previous TKD-related injuries, including a torn ACL that required surgery and eight months of daily physical therapy. But the combination of the worsening tinnitus, the new arthritis affecting my TKD, and the Raunayd's has sent me spiraling down. I'm drinking a little more than I used to. I'm crying a little too much. I don't feel sorry for myself, but my God, I'm so tired of constantly having to cope. Does that make sense? I'm tired.

Anyway, hope is not lost. I've got an appointment with an audiologist on May 19, someone whom my primary doc highly recommended because she specializes in tinnitus. Maybe she can help me find a masking frequency that actually works instead of making the tinnitus even more noticeable (which has been my experience with white-noise generators so far). I have an appointment with an orthopedist who specializes in the foot on May 10, so maybe I can get a definitive ruling on whether I've got bone spurs that need to be removed or maybe just a dinged-up ligament or tendon that's temporarily making it hurt when I flex my toe, or if it really is arthritis, how I can learn to live with it and return to TKD. I'm going to read about the Autoimmune Protocol and give it a go -- I love eggs and bell peppers, but if giving them up has any impact at all on anything, so be it. And I've got my trusty Hot Hands and spiffy arthritis gloves, so the Raynaud's is bearable.

But those dates feel like they're a long time away, and the sound of the universe is too damn loud.

I've started seeing a therapist (last week, so too soon to tell if this will be a long-term commitment). And I'm trying to be positive. I began a new job (after getting laid off of my job of 17 years) seven months ago, and I love it. It's stressful, yes, but "good stress" because I enjoy the work so much. I'm flourishing there. And that carries over to being a happier person at home, so I feel like I'm a better wife and mother. I even joined Toastmasters to help me conquer my discomfort with public speaking and presenting, and it's going very well. I'm still trying to find time to get writing done -- I'm also a novelist but I haven't had time/energy since starting the new job to focus on my writing -- but I believe that balance will come. I just have to be patient and proactive, and try different things until something works and I can become productive with my writing again. And most important, I have an amazing family and wonderful friends.

So it's not all woe is me, not by far. Things truly could be worse. I know it. I feel it.

I just wish the universe could be quieter.

Thank you for reading this, and for understanding.

 

Hi Jackie - a black belt! Whoa! Way to go girrrl! I loved your line "I wish the universe could be quieter". That made me laugh! My hubby and I hike a lot, especially in the winter when we are the only ones on top of a mid-Atlantic 'mountain'. It's a post apocalyptic feeling. He treasures the silence - I pretend to. But the smell of the winter woods, the running streams, the cold wintry air all make up for the T.

Hey - don't stress over the noises. I also have different noises in each ear. One is static (my endearing name for THAT ear is "Radio Moscow", the other ear is undulating noises Like yours, they are always there but I've learned to push them to the background. Most times I'm successful. It takes personal training which YOU must be good at with your martial arts background. You have already mastered pushing your body to it's limits, now it's time to use that energy for your minds health. You are the master. While we all seek doctors for different things, my experience is that the more you look for an answer that more you are opening yourself up to disappointment. Wishing you strength and am sending you positive energy to overcome these surmountable obstacles.

Please let me know how you are doing!!! Hugs!

 

Thanks, @Rosie_Rose - I'm okay. Stressed, and really tired. Hopeful that the audiologist will be able to help. I greatly appreciate the strength and positive energy. ("Radio Moscow" - great name!)

I really appreciate the reply.