Hello everyone! I've been lurking a bit in the shadows on this site since first getting tinnitus around 3 months ago. I finally decided to join because I feel like there's a real sense of community and encouragement (in the right places), and it's therapeutic not to feel alone. I've always needed ear plugs to sleep, and silence was a retreat for me until my brain decided that silence was the enemy. Music composition and mixing has always been a strong hobby and passion of mine, and I had been working hard to get enough songs completed for a CD until tinnitus showed up and screwed the pooch on that.
I suspect I've always had a level of tinnitus, but my brain was able to filter it out. I don't know how, and I don't know why, but around 3 months ago everything changed.
To give a brief medical background, since college I've developed intestinal issues and neuropathy in both my hands and feet, and had thought that I'd been dealt all I could handle. Due to this, the medication list I was on at the time includes:
1. Amitriptyline 50mg 1 X day (neuropathy)
2. Gabapentin 600mg 2 X 2day (neuropathy)
3. Loperamide 2mg 1 X morning (IBS)
4. Smattering of supplements that never really felt like they were needed
3 months ago I decided to try and wean myself off of the poisons I was putting in my body, starting with Amitriptyline and Gabapentin. I never really felt like they did much for my nerve pain, so it seemed like a good idea at the time. I halved my gabapentin and cut down my Amitripyline by 10mg (20%, which was probably too much too quick). At the same time I got a really bad sinus infection, so I was put on Amoxicillin and later Prednisone.
A week later I woke up in the morning with what sounded like Morse code in my right ear. I thought it was something electronic in the house firing off, but upon investigation found out if was originating from me. Over the next week it spread to both my ears, sounding like a fire alarm going off in my head + electronic generator zaps that I could literally feel happening in the back of my head. It was terrifying and I couldn't sleep for days, putting my deeper and deeper into depression and hopelessness. I had multiple nervous breakdowns leaving me bent in the fetal position and sobbing, wishing a stray bullet would pass through the house as my amazing wife was helpless but to watch. After four weeks of it, I finally had had enough and saw my primary, who worked with me for over four hours to try and put together a thorough line of attack to address the anxiety and depression.
I was prescribed Hydroxyzine and Clonazepam... when I took it I felt like my brain was numbed of the fight or flight it had put itself in. I truly believe it saved my life. I have since stopped using them as it's not a long-term solution, and I find the anxiety creeping back in again. My neurologist thought it could be due to Amitriptyline withdrawal, but after going back to the max dose for over 2.5 months it hasn't made on ounce of difference. I've long-ago given up on medical professionals saying to 'just wait it out', because it sounds a lot like 'uh no idea' to me.
My tinnitus has consistent elements and varying elements to it, including an oscillating super-squeaky wheel in my right ear that's going constantly and a ringing sound between 3-7 kHz that moves around on its own. There's also a high frequency, almost white noise going on all the time, similar to how it sounds when you can hear electronics turned on. The ringing is the worst, and often the electronic sound I can 'feel', like vibration in my head. Every now and then the sound goes out in one of the ears, there's a lot of ringing, then sound comes back. I've been tested at the ENT and show no hearing loss. The worst part is the hyperacusis, especially in the 2-4K range. Sibilance, and S's in general are really painful. It feels like I have an inner ear infection despite all doctors saying 'nope don't see anything'. It's one thing to hear the noise...it's another to feel pain on top of it.
If I move my neck and jaw, I can change intensity and pitch. I'm currently working with a chiropractor and pulsatile tinnitus to reduce the stress load on my neck and jaw. I've always lifted weights, and found out that some muscles are compensating for others not doing their job, so perhaps there's a muscular issue causing this - who knows? I'm so tired trying to figure it out.
It's so hard when the hobby you love, the ability to create music and feel a sense of accomplishment, is ripped away from you while you're left trying to pick up the pieces and figure out why. Did I expose myself to too much noise with headphones? Was it the sinus infection triggering things? Did stopping Amitriptyline break my brain's noise filter? Was this something that was going to happen anyways? The more I think about it, the more I start to go crazy. It's not worth it, and the pain put on my wife and 1 yr-old daughter due to this is something I have a hard time forgiving myself for.
I am encouraged by reading all the kind words and messages of hope - this is the one life we have, and it sucks that we've been dealt this hand - but we also have a chance to work on ourselves. I've started meditating if only for the calming effect, inspired by the quote I'm sure we've all heard at least once: "You can't calm the storm...so stop trying. What you can do is calm yourself. The storm will pass".
I look forward to our future interactions.
I suspect I've always had a level of tinnitus, but my brain was able to filter it out. I don't know how, and I don't know why, but around 3 months ago everything changed.
To give a brief medical background, since college I've developed intestinal issues and neuropathy in both my hands and feet, and had thought that I'd been dealt all I could handle. Due to this, the medication list I was on at the time includes:
1. Amitriptyline 50mg 1 X day (neuropathy)
2. Gabapentin 600mg 2 X 2day (neuropathy)
3. Loperamide 2mg 1 X morning (IBS)
4. Smattering of supplements that never really felt like they were needed
3 months ago I decided to try and wean myself off of the poisons I was putting in my body, starting with Amitriptyline and Gabapentin. I never really felt like they did much for my nerve pain, so it seemed like a good idea at the time. I halved my gabapentin and cut down my Amitripyline by 10mg (20%, which was probably too much too quick). At the same time I got a really bad sinus infection, so I was put on Amoxicillin and later Prednisone.
A week later I woke up in the morning with what sounded like Morse code in my right ear. I thought it was something electronic in the house firing off, but upon investigation found out if was originating from me. Over the next week it spread to both my ears, sounding like a fire alarm going off in my head + electronic generator zaps that I could literally feel happening in the back of my head. It was terrifying and I couldn't sleep for days, putting my deeper and deeper into depression and hopelessness. I had multiple nervous breakdowns leaving me bent in the fetal position and sobbing, wishing a stray bullet would pass through the house as my amazing wife was helpless but to watch. After four weeks of it, I finally had had enough and saw my primary, who worked with me for over four hours to try and put together a thorough line of attack to address the anxiety and depression.
I was prescribed Hydroxyzine and Clonazepam... when I took it I felt like my brain was numbed of the fight or flight it had put itself in. I truly believe it saved my life. I have since stopped using them as it's not a long-term solution, and I find the anxiety creeping back in again. My neurologist thought it could be due to Amitriptyline withdrawal, but after going back to the max dose for over 2.5 months it hasn't made on ounce of difference. I've long-ago given up on medical professionals saying to 'just wait it out', because it sounds a lot like 'uh no idea' to me.
My tinnitus has consistent elements and varying elements to it, including an oscillating super-squeaky wheel in my right ear that's going constantly and a ringing sound between 3-7 kHz that moves around on its own. There's also a high frequency, almost white noise going on all the time, similar to how it sounds when you can hear electronics turned on. The ringing is the worst, and often the electronic sound I can 'feel', like vibration in my head. Every now and then the sound goes out in one of the ears, there's a lot of ringing, then sound comes back. I've been tested at the ENT and show no hearing loss. The worst part is the hyperacusis, especially in the 2-4K range. Sibilance, and S's in general are really painful. It feels like I have an inner ear infection despite all doctors saying 'nope don't see anything'. It's one thing to hear the noise...it's another to feel pain on top of it.
If I move my neck and jaw, I can change intensity and pitch. I'm currently working with a chiropractor and pulsatile tinnitus to reduce the stress load on my neck and jaw. I've always lifted weights, and found out that some muscles are compensating for others not doing their job, so perhaps there's a muscular issue causing this - who knows? I'm so tired trying to figure it out.
It's so hard when the hobby you love, the ability to create music and feel a sense of accomplishment, is ripped away from you while you're left trying to pick up the pieces and figure out why. Did I expose myself to too much noise with headphones? Was it the sinus infection triggering things? Did stopping Amitriptyline break my brain's noise filter? Was this something that was going to happen anyways? The more I think about it, the more I start to go crazy. It's not worth it, and the pain put on my wife and 1 yr-old daughter due to this is something I have a hard time forgiving myself for.
I am encouraged by reading all the kind words and messages of hope - this is the one life we have, and it sucks that we've been dealt this hand - but we also have a chance to work on ourselves. I've started meditating if only for the calming effect, inspired by the quote I'm sure we've all heard at least once: "You can't calm the storm...so stop trying. What you can do is calm yourself. The storm will pass".
I look forward to our future interactions.
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