1. Hi Andrew, tell us a bit about your condition. How long have you had tinnitus? What symptoms have you been getting? Is the sound you hear there all the time, or is it intermittent?
Hi Tal, I developed Tinnitus in January of 2010. It’s only in my left ear, and yes….it is constant. I have had a couple of rare instances in the last 12 months where the hissing in my left ear has ceased altogether and switched to my right ear…weird I know. But it goes back to the left after several seconds.
2. How did you actually develop tinnitus in the first place? Has anything in particular triggered it? Can you tell (or guess) what the underlying cause is?
This is an interesting subject to me, and yes I definitely have some theories. The first and most obvious would be that in the 1980’s I was a Heavy Metal Guitar Player. I never really played live very much, but I was exposed to high volume music at various concerts over the years. Most notably a Metallica concert in 1986…second row, it was excruciatingly loud, and I knew that being exposed to that kind of volume without hearing protection couldn’t be good. It was so loud it actually scared me. The second reason would be that up until about 15 years ago, I really enjoyed hunting birds…so during the fall exposure to shotgun blasts were common place. The weird thing is that there was a tremendous amount of time that passed between the last of those events and the onset of Tinnitus, at least 15 years. During that time I had at least one hearing evaluation with my ENT, and my hearing was actually really good, which of course I was thankful for given what I had been exposed to when I was younger. What I really think triggered my Tinnitus was a sort of perfect storm of stress triggers in my life couple with a heavy genetic predisposition for anxiety disorder and some possible damage from an ear infection. In Jan. of 2008 my wife and I had our only child. I didn’t get married until a little later than most, and didn’t have become a parent until 2008. It was a monumental change for me…everything became very VERY real in terms of responsibilities. I had been self-employed for several years, which was stressful enough, but the thought of a child being totally dependent on me was a huge shock to my system. It scared me to death. Don’t get me wrong, I welcomed it and love being a parent, but it was a big change. Secondly in late 2008 I had an opportunity to sell my business. It was a good time to let it go, because my wife wanted to be a stay at home mother, and I could sense the impending financial collapse that ultimately did happen here in America, so I sold it. But it was hard because my identity had been wrapped up in building that business for 11 years…it was very, very hard to let that go. About a year after I sold the business I began having these emotional upheavals. I would get really sad and depressed for no reason, started to cry a lot, engaged in a whole lot of self-evaluation and reflection about the direction of my life, and regrets from the past etc…I just kind of wrote it off to the winter blues or a mid-life crisis or something and that I would get past it. About that same time I contracted a severe sinus infection that went into my left ear and completely blocked it up. I went to the doctor and they gave me a couple of prescriptions for the congestion and infection. They also noted I had a tremendous buildup of wax in both ears and wanted to irrigate them….one of them was almost completely closed off. So they irrigated my ears…no problems. Once the infection and congestion cleared I could hear this very low hiss…it was very low but it was there. I began to get worried, because as a former musician you hear about all the Rock Stars with Tinnitus and how horrific a condition it is. Two days later I woke up about 2am and it felt like a train whistle was going off in my left ear…it scared me to death. I frantically paced around the house trying not to completely lose control of myself. Long story short, I experienced my first real panic attack. I couldn’t breathe, couldn’t sleep, huge rushes of adrenaline flowed through me…it was horrific. For several hours I sat in my son’s room, clutching a bible and praying this would end. When my wife woke up and saw the shape I was in, she actually started to hide the firearms in the house because she was afraid I was going to commit suicide....those were very dark days.
3. How did it used to affect your day-to-day life when it started? What impact has it had on you in the past?
For the first couple of months I was a WRECK, a complete wreck. I couldn’t fathom how I was going to live this way and retain any sanity. How was I gonna be a father or a husband when I can’t stop crying and obsessing about this sound in my ear? I would constantly monitor it by sticking my finger in my ear to see how loud it was…was it still there etc….I was in a constant state of high alert. I could barely hold it together at work, and often times had to excuse myself to go to the restroom and just let the fear envelop me, and just pray that this would somehow go away.
4. Have you had somebody to diagnose it? Have you been to see a GP, audiologist, or any traditional health care providers about it? What treatment did they offer?
I visited my ENT, and he blew it off like it was no big deal, which in retrospect was a shame because I had known him since I was a kid. I remember having my second real panic attack in his office where I almost fainted and vomited at the same time. I vividly remember him telling my mother (who was with me at the appointment), “I am infinitely more concerned about his mental well-being than I am the ringing in his ear”. The Nurses Aid there was really sweet though…assured me they have dozens of people every week who come in with it, and that it was very common. That didn’t help my emotional state at all though. He prescribed Xanax to help with the anxiety, and another drug whose name escapes me at the time, which was a sort of blood thinner to promote circulation in the inner ear, which by the way never worked. I didn’t really have a family doctor at that point, so I found a new GP I had never been to before. When I went in his office his nurse could see how bad my emotional state was. She asked me what was going on, and I told her about the Tinnitus and the anxiety associated with it. She then asked me if I was suicidal and I responded that yes…I felt very close to wanting to do harm to myself. She looked at me and said “You know…I have Tinnitus in both ears, and sometimes it gets so loud I can’t even think”. That was my first little tiny glimpse into the fact that this condition may be more common than what I thought. When the Doctor came in, he again was very unconcerned. When he looked at the chart and saw that my anxiety was associated with Tinnitus, he said to me “you’re going to have to figure out a way to get past this because there are many other things much more serious that could happen to you” I swear I almost responded “More serious than suicide?” Anyway, he put me on the SSRI Lexapro, and I continued to take the Xanax as needed. I actually went back for a follow up to the ENT appointment a couple of months later. This time I saw the Physican’s Assistant, who was a great guy…really nice. I came in armed with all this knowledge about the Jastreboff Neuropsychological model, TRT, etc….I really took them to school. It was kind of funny because they casually joked that I had recovered so well, that if I could go become certified in TRT they would like to hire me on staff.
5. Have you tried any alternative treatments, dietary/lifestyle changes, or treatments not offered by traditional health care providers? Have you had any success with of them?
Other than that blood thinner that the ENT gave me, no not really, I have never been a heavy consumer of sugar, caffeine, aspirin or other stimulants that could potentially cause something like this. I never used Aspirin either which is known to cause ringing in the ears. These days I exercise a lot. I have also changed my diet to exclude grains, excess sugar etc…but that was more to lose some unnecessary weight, rather than to affect the Tinnitus.
6. Have you sought counseling or therapy? In particular, have you looked into sound therapy, tinnitus retraining therapy, or cognitive behavioral therapy? Did any of them help?
Well, shortly after my experience with the ENT and GP I began to attend weekly sessions with a therapist for Anxiety and Depression. The first session when I unloaded on him, he looks at me and goes “Hey, I have Tinnitus also…got it in the military from being around airplanes.” He was a tremendous help, not with the Tinnitus so much, but with exposing some underlying factors like childhood trauma and what not that were pre-cursors to the development of my anxiety disorder. I still see him a couple of times a year…he has become a great friend and counselor. I am also looking into CBT as an adjunct to help with any anxiety I may deal with in the future. I think the CBT protocol has a ton of merit to it for anxiety, depression, panic etc…
7. How did you eventually start to cope with it? Do you manage it better now than when it first started? What impact does tinnitus have on you today?
This kind of relates to one of the previous questions. The first thing that happened was that I began to open up to people about my condition…two people in particular who were highly instrumental in me regaining my sanity: My great Aunt and Uncle and my Fishing Guide. I had remembered my Uncle telling me years previous to this that he had Tinnitus. I contacted him and went to his house for a visit. He and I and my Aunt had a very emotional conversation about his experience with Tinnitus and really about life in general. Talking to the both of them was very helpful. A couple of days after that I was talking to my Fishing Guide and he could tell something was wrong with me…when I unloaded on him, he too admitted he had Tinnitus in both ears and had got it from years of riding at high speeds in boats with no hearing protection from the wind. Those two people who were willing to share their story with me kind of started to open my eyes that this could be dealt with in a rational manner and that life could be lived normally as before.
But the monumental turning point was when I stumbled upon Pavel Jastreboff and Jonathan Hazell and their research. I can remember so vividly standing at the computer at my office and reading about how Tinnitus was a natural phenomenon, and how the ringing is not really the problem, but rather your reaction to, and perception of the ringing that causes the problem. I remember reading about TRT on Dr. Hazell’s website, and all of the testimonials that he had posted from people who had gotten better almost immediately from the relief of the anxiety if nothing else. Tal, I swear to you it was like the GIANT weight had been lifted off my body. I felt like I had been suffocating in a buried coffin for the last 3 months, and somebody finally dug me up and gave me some air. I can’t begin to describe the effect that the Jastreboff model and Dr. Hazell’s website had on my well being….it totally saved my life. I remember that very night, I went home put the Xanax bottle in the cabinet, shut off the sound generator and went to sleep in complete silence (except for the Tinnitus of course) for the first time in months. From then on life moved forward at an exponential pace. The more I opened up about my condition, the more others around me admitted they had it also. In fact at one point on Friday afternoons myself and another guy at my old office used sit around and compare what ours sounded like “Hey…mine sounds like Locusts what does yours sound like? Crickets? Oh yeah…ok” It was fun to make light of the condition that way.
8. These days, what do you do to manage your tinnitus? What do you do when it gets particularly bad?
I don’t do anything conscious to deal with it, it is what it is. I try to keep my stress level manageable so as not to aggravate my anxiety, but that’s more about struggling with Anxiety than it is struggling with Tinnitus. Mine never really fluctuates too much, but sometimes it’ll get a bit louder…sometimes it’ll get real low. To be honest I really don’t attach much if any emotion or meaning to it anymore, other than to reflect on what an amazing journey this has been, and will continue to be in spite of how incredibly dark those early days were. I can hear the hissing 24/7 if…IF I LISTEN FOR IT. The point is to deal with the panic and anxiety, so you DON’T constantly obsess and listen for it. Tinnitus isn’t really an auditory issue, as much as it is an emotional and psychological issue in my opinion. I read an article one time where they interviewed a guy who had lived with Tinnitus since he was a child…and thought everyone had it and that it was normal for the ears to ring. It never bothered him a bit!
9. Do you believe there's a single “silver bullet” cure for tinnitus? Do you believe there will ever be one?
Hard to say….if you believe in the Jastreboff model, which I do, it’s a bit absurd to try and fix something that’s not really the problem. Rather than focus on fixing the ringing, I think the mental health community would do well to get HEAVILY involved in TRT. The number of TRT trained Audiologists is far too low for the amount of people that need that service. And the fact that most of the ENT’s and GP’s have NO idea this therapy even exists is a travesty. Had my ENT and/or GP told me that there was some sort of hope to come to grips with this in a therapeutic setting, I wouldn’t have lost 3 months of my life. And there needs to be some sort of outreach to make sure that the medical community and the public is aware that this is available. I think that if an actual “cure” is found it will come from the Neurologists and not the ENT’s. Folks like Dr. Jastreboff have WAY more of a handle on this than do the ENT’s or General Practitioners. Having said that, there is some groundbreaking work being done here in Texas by a guy named Dr. Leslie Dalton. I spoke with him a year or two ago…ironically he has had Tinnitus for a very long time as well. He’s an Audiologist up in Amarillo at a company called Dichonics who was doing some sort of research on Autism and stumbled upon a way of cancelling out or greatly reducing the Tinnitus signal with a headset playing a special signal. Unfortunately the Tinnitus comes back when you take the headset off…but there is a residual effect. The longer you wear the headset playing the signal, the longer the period of silence is after you take it off. Last time I checked his website he had one individual who was up to something like 5 or 6 hours of silence after taking the headset off….pretty impressive. There is also another team of individuals in Dallas Texas at a company called MicroTransponder I believe, doing work with Vagus nerve stimulation to decrease or eliminate the Tinnitus signal. I think both of these are the real deal, and not some scam artist selling herbal supplements to get rid of the ringing, that stuff is just snake oil. To be honest though, and I know this is going to sound completely ridiculous to folks who are new to this struggle, I don’t think I’d get rid of my Tinnitus if I had the chance…it’s become part of who I am. It has become a constant but gentle reminder of how strong I can be in the face of adversity. I still deal with Anxiety in my life, and I probably always will to some degree. But the fact that I reclaimed my life from what was truly a complete and utter living hell is something I can always hold onto as inspiration when adversity strikes again.
10. Anything else you’d like to tell us that we might have left out?
Learn to live your life….life happens in front of you and outside of you….not inside your ears or your brain. The longer you choose to live inside your ears, the longer you will struggle with Tinnitus. It’s excruciatingly difficult; no doubt about it, but there is no other way. I truly believe that in life there are no accidents, and that everything happens for a reason. Tinnitus put me on a path that I am so much better for having walked. Yeah, the first several hundred miles of that path was littered with some incredibly difficult terrain to traverse, but I am a much better man for it. Tinnitus forced me to become a much different individual than I would have been had I not been forced to deal with this condition. I am much more open emotionally to everyone around me, especially my wife. Most importantly I have been blessed with the opportunity to help others because of my condition. About a year ago a lady from England emailed me because she had seen a post I had made on a Tinnitus bulletin board about my recovery. She wanted to thank me for making that post on a public board because it really helped her get through some very bad times…she had been suicidal like me at one point. Just last week on Easter Sunday a member of my family and I were having a conversation and the subject of my Tinnitus came up. She admitted that she had had it for years along with severe bouts of anxiety. We ended up talking for 2 hours about the Jastreboff model, TRT, how to get past the anxiety of it all by understanding that Tinnitus as much as anything is a problem of perception and reaction to sound, and not something that is going to kill you. She sent me an email a few days later saying how appreciative she was that I was so “open” about my Tinnitus and my struggle with Anxiety. So, you know…you think about those things and how blessed you are to be in a position to be used to provide comfort and understanding to those who are hurting and in need of some hope, and it makes any sort of adversity really worthwhile.
Thank You so much Andrew - Your Tinnitus story is extremely inspiring!