Ben Thompson, AuD.
Hello everyone, this is podcast episode number 22. I’m your host, Dr. Ben Thompson, Audiologist. Today’s guest is John Diehl, who is a hearing professional in Pennsylvania. John wanted to share his own positive tinnitus story. After two years of dealing with tinnitus and hyperacusis, John has a unique experience being a hearing professional, but then going through this condition, experiencing it as the individual. John, how’s it going? How have you been? And tell us, bring us back to the onset of when this all started.
Okay, well I’m doing great. That was not the case, two years ago. My tinnitus was, it was unique. It was like somebody flipped the light switch. I was doing a health fair. At a local facility. This is obviously pre-COVID. And again, it was like, somebody flipped the light switch. I had this loud screaming in my head. I was looking around like can other, anybody else hear this? There was, you know, really weird. Went outside because I thought it was coming from inside and realized that it was myself. And that started a journey that was not good. Again, this was two years ago when this all started. During the time, it was a stressful time. A lot going on, a lot of stress anxiety going on. And I believe that was the ultimate trigger that caused my event. I then went into a period of time of not being able to sleep because of the screaming. My tinnitus was more reactive than anything. It was, sound would make it worse. I turned the TV on and my tinnitus would get louder than the TV. I even did things like got in the car and turned the radio up full blast. And my tinnitus literally went louder than the radio, which is just seems crazy, but it’s true. Went many nights without sleeping. And of course that created an increased amount of stress and anxiety that was like never before. And you go for days on end with very little sleep. Then came the big one, hyperacusis. hyperacusis is cruel. It’s just indescribable. Things like my refrigerator running was painful to me. And that doesn’t make a lot of sense to folks, I’m sure. but somebody who suffers with hyperacusis can relate to exactly what I’m talking about. That refrigerator kicking on, you normally don’t hear it. But to me it became a painful event. I would sleep with earplugs when I did sleep. Certain voices would actually hurt me in pain, being that loud. So that sent me on a pretty bad path. I sought help.
Being a hearing care professional, I have a staff of hearing care professionals and an audiologist. You know, I had a lot of people at my fingertips that I could tell what was going on. And the standard, the starting point is, doing some sound therapy, which with reactive tinnitus, a lot of times is not, is not the answer, which, you know, thank God reactive tinnitus is very rare. I think it’s the last report it’s about 5% of the cases if that’s probably pretty accurate. So I started looking for alternative choices and I went down a road of just basic on a holistic approach, trying to get help.
I did find by going to some healthcare professionals that there wasn’t a lot of hope given to me. That’s where I think the discouragement and anybody who’s listening to this, be careful. You be careful who you go to, be careful who you listen to. I went down a path of doing Googling over and over and over, every symptom, getting on chat rooms and everything else. And that’s a dangerous place to be. Don’t go there because it just puts you in a more hyper state, and makes matters much worse. So until I finally got it through my head that I’m not going to do that anymore and look at it, the success stories, and that’s what gave me hope.
Ben Thompson, AuD.
And John, tell us more about being a professional. You had access to these great resources. You may have had a certain amount of knowledge about the hearing system that others didn’t. Talk us through that experience, reaching out to other professionals, trying to figure this out on your own. Maybe getting some help. I mean, I know that doesn’t necessarily make it any easier, but it can lead the path a little better than someone who’s tryna figure it out on their own. Bring us back into that state.
Okay, so that’s, whether it’s a blessing or a curse, I couldn’t tell you which way it would really worked. But obviously with in my own studies, and in my own practice, we dealt very successful with a lot of tinnitus patients using sound therapy. And when it hit me and, you know, it was just like, “Okay, well I know what to do.” Well, when it didn’t respond for me and it just seemed to make it not necessarily worse, but not any better, I didn’t fit the normal profile. And I did not share anything with my staff because I was too ashamed. It was kind of like the dentist that has tooth ache, you know? It’s, that’s his profession. Why does he have a toothache? Well, this is my profession. Why do I have audiological issues? And so at first I could not tell my staff what was going on. They knew there was something wrong with me, but they didn’t know what it was. I eventually broke down to a point where I did share it with the audiologist that’s on staff with me, who was very compassionate and kind. Basically told me that, you know, you’ve got to work through a couple of things. Let’s try a couple of things. And I can’t really say that there was any one particular thing that I know helped me. I think it was everything had combined. It was trying to find out what calms me down. Things, simple things like getting a massage once a week. It was a big player of calming me down because I was in a state of panic all the time. Learning to make friends with my refrigerator again. That may sound crazy, but I had to learn to make friends with that thing again, because it hurt me. And when that thing would kick on it, even to this day, when that refrigerator kicks on, I do take notice that it’s there. I don’t get upset with it anymore. I don’t want it out of my house. But it does bring back memories. And so being in the profession, yeah, it had a humbling effect having to reach out to other folks because I knew it was above my head. So I went to some, some professionals that I had hoped had given me would give me some hope.
Ben Thompson, AuD.
Well glad to know that things have improved and gotten better. Now we were talking a bit earlier. Tell us about what do you feel like were the big drivers, the big facilitators in your process? And then if you could right now just share, what was the volume at the beginning? And then what is the volume now? You said about two years later. Also to add, I forgot to mention that you and I had not worked together professionally. I have tinnitus services, but we didn’t work together. So I wanted to add that. Tell us a bit about what were the big facilitators to your healing process, and where were you at in terms of the volume of your sound at the beginning versus where you are now?
So in the beginning it was 10 out of 10. I literally, I would rate it 10 out of 10. I would have some cloudy breaks where it would go down like a six out of 10, or even a five out of 10 for a couple of hours at a time. Which was a welcome, very welcome change. Unfortunately, there was nights where it was just 10 out of 10, 10 out of 10. And just repeatedly.
At this point, I’m going to tell you, it’s like a three out of 10. If, you know, and it doesn’t bother me. It’s one of those things where, you know, everybody, if you think hard enough and concentrate hard enough, you’ll hear some sort of sound going on in your head. That’s a given. Where I was at and what gave me hope was about six months into it, I started to get these cloudy breaks that would last a day. Or a half a day. Or sometimes even two days. I get these periods of where it would go down to a level four. And that was after six months of eating a very clean diet, eating lots of organic foods, organic vegetables, no processed foods. I was coached through a dietician who was just a godsend to me. I did cut down on salt. I, no sugars, only natural sugars through fruits. And they had to be organic. Lots of eggs and proteins, lots of meats that came from a local butcher shop instead of getting it from the grocery store, ’cause I knew it would be fresh. And six months of that is when I started to see quite a bit of difference.
I did a lot of other things that probably didn’t help. But you know, when you’re desperate, you try anything. Any little tip anybody would give me, any tip I would jump on it right away. But really nutrition played a very big part. Finding something to calm me down, played a huge part in this also. The first thing that left was the hyperacusis. That was completely gone about at about eight to nine months into this thing, it was completely gone. That was the first thing that would heal. And actually I was told that would be the first thing to go as this process healed, which I find pretty interesting. I did do some alternative things like acupuncture for anxiety, and that seemed to help. So again, it’s all around just a bunch of different things trying to figure out what’s what helps you.
Ben Thompson, AuD.
And what kind of message do you have for someone who’s in those first eight months that you were in, where the tinnitus is loud, the hyperacusis is there? I mean, were you working yourself? Were you still engaged in work, family, society, or did you have to be separated to get space, to? Walk us through that, and what kind of message do you have for someone who is in that period where you were in?
I was in a very bad place. Very bad. I was able to work only maybe half days. I cut down on my schedule dramatically. My team had to pick up my slack. I’m blessed with a great team that did that for me. I was really not engaged ever with anything. It was just in a very bad place. The message that I would give to anybody in that place is please be careful where you go for help. Stick to positive stories and immerse yourself in positive stories. There’s a website that I went to a lot. It’s called Anxiety Center, which is a Canadian firm that was just absolutely a blessing because they have a lot of articles on the subject of what, you know, being in an anxiety state can do to a body. And again, that was a godsend. I read things like that. I would read things that showed a way out and, and again. But in the beginning I didn’t do that. In the beginning I didn’t. So I I’m sure I can, my suffering lasted longer than it needed to. So that would be the message I have; be careful.
Ben Thompson, AuD.
Thank you so much. We really appreciate you sharing this story. We were connected through another professional, and thought you had quite an interesting experience of being a hearing professional, living through this. Now, do you feel like you’re at the plateau of where you want to be? How do you approach the next months and years to come with this condition?
Okay. So where I’m at now, I’m two years into it. And I journaled to prove to myself how much better I was getting. I journaled every day for two years. And how I would rate it, it was real simple. I would just basically say, on a scale of one to 10, how loud was my tinnitus for that whole day. And if it was a three or below, it didn’t bother me, it was a non-issue. If it was anything a four or above, it was considered a day that was, a tough day. Just call it a tough day. And every quarter, every three months, I would increase more and more good days. So I knew I could prove statistically that I was getting better. ‘Cause when you’re having a bad day, you know, oh Jesus it’s just awful. But now if I have a bad day, I was like, “Okay, it’s okay.” Because the good day’s coming tomorrow, or it’s going to be the day after that. I’m going to have a stretch of good days. So journaling is fine. And I journaled everything I ate for a while to see if there was a direct connection. I never found that direct connection. It was a long-term connection. Finding that eating a clean, diets. So it was like some lifestyle changes, taking a day off of work, not working, you know, six, seven days a week, spending more time just chilling, take those few moments during the day, a stressful day is okay.
But take a few moments to just sit and chill for a minute. And I did do a lot of meditation. I did yoga. I did a lot of different things to calm me down. But I found for me the best thing was taking a little walk. And just if I can get out and, you know, walk around ’cause I live in the woods, it’s nice to get out and walk around there a little bit. And what works for me may not work for another person. What works for another person may not work for me. Yoga, I thought I would enjoy. And I did it for months on end and I realized, you know what, I didn’t enjoy it. So it really was not beneficial to me. But then I found out, you know, just taking a few minutes and chilling here and there. I got an exercise chair that, a massage chair, excuse me, a massage chair that really digs into my back and digs into my neck and that calms me down too. So it’s little things like that add up over time. And like you say, it’s not like I do this today and tomorrow I’m better. It doesn’t work that way.
This was a long-term lifestyle change and how I react to things too. I’m really trying to react rather than, I guess, trying to act, react more calmly to every event. Instead of being in a rush to go here to there, is like, say why am I in a rush? Learn to drive a little slower. I guess it’s a, it’s almost like I doddle a little bit, which I was never like that before. Like this hit me, so.
Now, just again, I’m going to say that again. Just be careful who you go to. I, you know? Folks that are close to you, they need to go see you. Positive success stories. And they need to talk to somebody who gives them encouragement that yes, you can heal from this. Yes, you can get better. It does not have to have to destroy your life. It does not have to be a lifetime curse. It doesn’t have to be that way.