My Seventeen Years with Tinnitus

[topaz]

I first got tinnitus in 1996. It started in one ear, progressed to the other, and then filled my entire head. Sometimes I had many overlapping sounds, other times a single air-compressor sound. I initially went to see an ENT, who prescribed steroids, which sent my tinnitus into the stratosphere for many months. I would wake up in the middle of the night with my ear blasting, and many times I would go down to the emergency room at 2 in the morning, nearly hysterical. As you all know, most medical people do not "get" tinnitus, at least not the severe kind.

It took me many years to learn to deal with my tinnitus, but I live a productive life now with lots of laughter and fun. Initially, my tinnitus was so bad I could not lie down because the noise would get so much louder. I couldn't nap, now matter how sleepy I was. I was always exhausted. I had to take medication to sleep at all, and I would wake in the wee hours of the morning and just lie there suffering. I was so very depressed. Antidepressants made my tinnitus unbearable after just a few doses. Xanax helped some, but too much can make tinnitus worse. Because of the severity of my tinnitus, I lost a career track job and had to go on disability. For three years I could not find relief, despite going around the country to anyone who said they could help me. Then I found the Moses-Lang cd, which helped take the edge off the tinnitus. The very high-pitched sounds of band 6 and 7, not available on maskers, seemed to mitigate my tinnitus. It was no panacea, but every bit helps.

I won't say that I'm not longer bothered by my tinnitus. It still can be difficult, but I manage all right. I no longer have the emotional heartache I had when I first got it. I accept it now. I deal solely with the physical symptoms. I have mild days and bad days, but I've learned to function well even on the days when the tinnitus is very intrusive. There are times when the bad days last for weeks, but then my tinnitus returns to "normal" and I am grateful. I don't stop my life on the bad days; I do whatever I had planned.

I use Bose noise cancellers for airplanes and going to the movies.

Once tinnitus made me so miserable I was ready to call it quits. Back then I would never have guessed that my life could get so much better. With tinnitus, time is one's friend.

 

[Emma]

Nice to "meet" you Topaz. So glad to see that you are dealing well with the tinnitus. Inspiring actually

 

[Karen]

Topaz,
Thanks for your inspiring post! I've had tinnitus for a long time, too, but it got worse around 3 years ago. I've just recently begun to notice some improvement; I can actually sleep again, which is good. I like hearing that "with tinnitus, time is one's friend"!

I haven't tried googling the Moses-Lang CD yet. Do you have a link to where it is available?

 

[stantheman]

Hello Topaz, I have had my tinnitus for 15 months. It is a high pitched squeal which morphs to swishing and then sometimes to crickets. I also get the "air compressor" sounds from time to time. It is horrid.

After having T for so long would you say that you are "habituated"? Do you believe in such a thing? I am having a hard time with it.

 

[topaz]

Hi Karen, I've always just ordered the Moses-Lang cd over the phone from the Oregon Health Sciences Center, (503) 494-7954. All the best! topaz

 

[Louise]

Stan, I have some of those sounds too. Plus dentists drill. I cant see how anyone could habituate to this type of sound when its changing all the time. Its so attention grabbing.

 

[topaz]

My tinnitus changes all the time, too. When I first got it, the sounds were very freakish. I was very traumatized. I used to tell people I felt like a walking sideshow. I couldn't relate to people who had predictable "ringing in the ear." People with mild tinnitus used to wonder why I was having such a hard time with it. Anyway, after seventeen years my tinnitus still bothers me at times, but I've learned to manage it. When I'm out doing things I don't notice it. I can be sitting in a quiet room, and if I am engaged with what's going on I'm not even aware of it. At night I take Ambien, because sleeping well is vital to functioning well. I also use a white noise machine at night.

I fought the tinnitus for about four years before I was gradually able to accept it. Tinnitus is tough. Now, however, the fact that I'll have it the rest of my life doesn't depress me in the least! I worry about money a lot more!

 

[Louise]

I guess thats comforting in part. But after 17 years no habituation? And 4 years fighting? I dont feel like I've got 4 weeks left in me never mind years. Even when I am out I am always thinking about it, always dreading when I will have to go home and be with that unholy cacophony. I wish it were one tone, like it was when it started.

 

[topaz]

Hello Topaz, I have had my tinnitus for 15 months. It is a high pitched squeal which morphs to swishing and then sometimes to crickets. I also get the "air compressor" sounds from time to time. It is horrid.

After having T for so long would you say that you are "habituated"? Do you believe in such a thing? I am having a hard time with it.

Hi Stan, I am as habituated as I'm ever going to get. I have a nice life, I travel around the country, I petsit, I do lots of social things with friends. Right now I'm going back to school, and I'm also studying comedy writing. Does my tinnitus drive me crazy? When it's moderate I don't pay attention to it at all. When it's exacerbated I absolutely notice it, I don't see how I couldn't. I don't get severely depressed over it as I once did, I just wait for it to go back to "normal." Life with tinnitus isn't the same as life before tinnitus. My point is that it can still be rewarding.

 

[topaz]

I guess thats comforting in part. But after 17 years no habituation? And 4 years fighting? I dont feel like I've got 4 weeks left in me never mind years. Even when I am out I am always thinking about it, always dreading when I will have to go home and be with that unholy cacophony. I wish it were one tone, like it was when it started.

Tinnitus can be very unlivable during the first few months or years, but it seems to calm down after that. My first few years were so awful, I couldn't even lie down because when I did the blood pressure in my head would rise and the tinnitus would sky rocket. If I fell asleep I'd waken to the sound of a thousand bees in my head. It was such a nightmare. And it didn't helpt that an ENT had gave me a course of steroids and that made a bad case of tinnitus a horrific case of tinnitus.

Louise, I think your symptoms will improve, but it's going to take time. Tinnitus is a tough thing to handle, but eventually everyone does handle it. It isn't all about willpower. The body naturally focuses on anything it deems unusual and alarming. It times time to adjust, to find something that will bring relief (it took me 3 years to find the right sound cd), to emotionally accept a condition no one would ever ask for. It's best to take one day at a time, or one moment at a time if that's what you need. topaz

 

[Louise]

Thanks Topaz. I know the bees now that it seems to have gone central. It is tough to handle and I'm not tough, not at this sort of thing. I know I'm not handling it well. The emotional part is very hard. I feel like I now have a disability. I'm just scraping by each day. (Maybe I shouldnt make these personal posts).

Thanks for your posts, I think you've been really strong, seeing how bad it was for you for years in the beginning.

I wish you well and wish you even more habituation than you have now. Good luck with your comedy writing.

 

[Emma]

And it didn't helpt that an ENT had gave me a course of steroids and that made a bad case of tinnitus a horrific case of tinnitus.

Was this a permanent effect? Did your tinnitus go down after you stopped the steroids?

 

[topaz]

Was this a permanent effect? Did your tinnitus go down after you stopped the steroids?

It don't believe it was permanent, but it took a year and one half for the extra exacerbated symptoms to calm down. That included wakening at four in the morning with the literal sound of an alarm clock in my right ear, and I'd have to pace the floor to get the blood pressure down in my head so the tinnitus could be bearable. As soon as I fell asleep again the same thing started all over. I went for nights without sleeping, and I soon lost my job.

 

[Mikie_Mike]

I had a viral ear infection and during the acute phase (about 1 month, while I was taking antibiotics - which of course didn't work) , my tinnitus would go from 0/10 to maybe a 3/10. The first day I took 60 mg of prednisone, it went to 10/10. It was intense, and not only that, I had a bad reaction to the prednisone (which might also explain part of the 10/10). I immediately got severely depressed, had high anxiety, muscle twitches, heart palpitations, and a tight chest. I never had any of these things happen to me before ... seemed quite odd. I ended up in the emergency room too, on day 5. They didn't find anything wrong, so I went ahead an continued to taper off, and started doing xanax about day 9. because of the anxiety. A number of symptoms improved as the dose went down, but it took me about a month to "get over" the prednisone. Anyway, a lot of people have this reaction to prednisone, or other bad side effects:

http://mentalhealthdaily.com/2014/06/10/prednisone-withdrawal-symptoms-how-long-do-they-last/

look at some of the comments below the article.

Now I need to get off the Xanax. My doctor gave me a prescription for 0.5mg 2x per day. I never took that much. Just started out using one 0.5mg per night to sleep ... and it worked great for about 2 weeks, then I started developing a tolerance, and started getting "ansty" before my next pill. In fact, after 4 weeks, I started getting antsy 6 hours before I was suppose to take my next one. Anyway, I ended up moving to 0.5 mg at night, and 0.25 mg during the day. I currently doing 0.125 mg 2x per day, and will be working to get off it in the coming month. the bad news is my T is going up (not horrible, but bugging me). I expect (hope) it to settle back down once my GABA increases, and I get off the Xanax for good ... but I'm guessing I need to slow down ... I started cutting fairly quick.