Major Improvement After 1.5 Years

I have thought about writing this “success story” many times over the past few months. However, it would seem that whenever I get to the point where I felt I should, I would have a bad day (or few) and then would back off. However, I finally feel I am in a place now to do so.

My tinnitus started in May 2017. I went to bed one night as usual and woke up the next morning and there it was. An ear-splitting high pitch scream that seemed to be coming from the middle of my head (not one particular ear). I had no idea why it was there. I hadn’t been around anything loud (I generally steer away from anything loud, including concerts, and have a quiet office job during the day). I hadn’t been under any unusual stress either. In fact I had been having a pretty good spring so far (the best time of year when you live in the middle of Canada and the snow is finally gone!). I had a sinus infection about a month prior but that had long been cleared up. At first I thought it would just go away and it just needed some time. It did go away after about a day. Then 2 days later it came back and was there to stay.

It would often be best in the morning and worst in mid-afternoon and late evening. To give you an idea of my tinnitus severity I matched it at 25db above my threshold of hearing at a frequency around 7500Hz (done with an audiologist). So yes, I had it bad. I also had hyperacusis, a strange buzzing from my left ear only that came and went and I would get these loud “pings” a couple times a day on average. What I call “pings” are when one ear suddenly loses most of its hearing and this loud “ping” hits me that sounds like a submarine’s sonar. This would usually last for about 10 seconds and then taper off for about a minute before going back to normal.

My distress on a scale of 10 was about an 8 or 9. I would sleep beside a loud dehumidifier to try to drown out the sound. Initially I couldn’t hear it while driving but the sound got louder and became “reactive” meaning it would just ramp up over any ambient sound there was. That was distressing as I felt I couldn’t escape from it.

The next year-and-a-half I spent trying to get rid of it. This included:

- About 30 chiropractor visits (a 3 hour round trip drive each time) to see an upper-cervical chiropractor specialist
- 3 ENT visits
- 5 audiologist appointments with audiograms
- Neurologist appointment
- Several family doctor visits
- CT scan and 2 x-ray appointments
- 2 different dentist appointments (focusing on TMJ)
- 3 acupuncture visits
- Several massages
- Joining a local tinnitus support group
- Reading Jastreboff’s Tinnitus Retraining Therapy book and others
- Easily over 100 hours of Internet research and over 130 pages of notes (although I generally avoided tinnitus forums to avoid negativity)
- And much more

I am the type that when something is wrong with my health, I research how to fix it and am obsessed with it until it is fixed. I love playing sports, working out and just being in good physical shape. Health is incredibly important to me. However, often an obsession around fixing health related issues is not a mentality that serves tinnitus sufferers well.

Beginning January 2019 I took a new tack on this. Based on online research I decided to take a two-pronged approach of diet change and cognitive behavioral therapy. My hope was that a diet change might be able to reduce the volume to a level where habituation could be achieved easier through CBT (I’m not saying you can’t achieve habituation no matter the volume but I figured a reduced tinnitus volume would make it easier).

Diet & Lifestyle:

My whole life I always that thought that I could eat whatever I wanted as long as I burned it off with exercise. So while my weight has always been fine (I’m 6’1” and have been between 165 and 180 pounds for about 25 years (since high school)) I did eat a lot of chips, deserts, chocolate, etc. My breakfast would be toast with honey and a glass of orange juice. I’d have a protein bar for snack and then leftovers or a sandwich for lunch which could also be high in carbs. Dinners could be anything (my wife is a great cook) but could also be fast food. Then back to the chips and chocolate in the evening. In sum, a high-carb diet.

A lot of my information on diet change came from Liam at Liam Stops Tinnitus and ketogenic diet sources. For those of you have seen Liam’s videos etc you know that some of his ideas seem pretty far out there and that his style may put some people off. However, I have incorporated a lot of what he has to say and I can say that I believe it has reduced the volume by 50% or more over the past 7 months. The 3 main things I implemented were fasting (I did a 40 – 48 hour dry fast about once per week for 5 months and fairly loose intermittent fasting between (i.e. no food or water until lunch)), cold showers and cut out about 90% of the carbs I had been eating. I came to the conclusion that the mid-afternoon and late evening spikes were from elevated blood sugar levels (after lunch and dinner). I would often be very tired in mid-afternoons after having eaten too big of a high carb lunch and this would coincide with when the tinnitus was loudest.

There are many other things that Liam suggests trying that I have not implemented so I cannot comment on those. Also, while Liam doesn’t advocate specifically a ketogenic diet there are a lot of similarities. I could have gone beyond 48 hours of dry fast but had fears (potentially unfounded) about health implications. However, going longer could be very beneficial as you can stay in a state of autophagy longer. Look up “autophagy” if you have questions. Lots of good, recent science on this.

In implementing these changes to my diet and lifestyle there was no downside as lot of these changes can significantly improve health in ways completely apart from tinnitus.

CBT:

I have met with a CBT specialist about 6 – 8 times. She has helped me with mindfulness practice and other strategies to try to help break the emotional connection to the sound. The ones I have found the most helpful include meditation and exposure. Meditation included focusing on my breathing and a body scan (such as at http://livingwell.org.au/mindfulness-exercises-3/6-body-scan). Exposure would include relaxing (as best I could) in a quiet room and focusing on the sound for 10-15 minutes (very scary at first!). I believe these practices have helped train my brain to treat the sound stimulus as neutral and therefore not set off the fight or flight response.

As of today, I believe I am closing in on my goal of reducing the sound and habituating to what is left. I don’t know if the sound will ever go away completely. However, if it stays at the level it is I am ok with that as it very seldom causes annoyance or anxiety. If that means I am habituated or nearing the mystical state of habituation we all seek I am ok with that. I still do have bad days from time-to-time but these are becoming less frequent.

I’m not saying that this approach will help everyone who has tinnitus. However, it’s worth a shot and even if it doesn’t help you, the diet and lifestyle changes as well as CBT has other positive effects. It could be that mine was caused by a bad diet so fixing it has had a bigger impact than if it was caused by something else. My distress was about an 8 – 9 out of 10 before and now it’s about a 1.

Sorry for making this so long. Even if this helps 1 person it’s worth the post. I don't know if I'll monitor this thread if people have questions/comments. I want to help (thus this post) but am still working on habituating to what tinnitus is currently left and feel I can best do that by not thinking about it.

Best of luck to you!

 

Congratulations!

I remember masking it all the time, or at least trying. This stressed me out more. I decided just being with it was the best way. After all trying to mask 24/7 is ridiculous. Especially for country folks. When you're out in the middle of no where there isn't an option. Though I do remember how painful it seemed being stuck with the T screaming in my beloved silent rooms.

 

@Davey998 Congrats. When you say it was an 8 and now is a one. Do you mean volume? Did the volume decrease to a 1? Was your tinnitus somatic?

 

MarkX, the 8 was the level of distress I was feeling whereas now it is about a 1. The volume itself is down about 50% from the average of what it used to be and is fairly consistent now. I'm hoping it will continue to decline but am ok if it stays as it is because this level doesn't bother me very much. The volume used to fluctuate a fair bit from one day to the next or within a day. Typically it was loudest mid-afternoon and late evening. I attribute this to insulin spikes associated with a high-carb diet.

The high-pitched ringing is somatic. Certain neck movements will cause it to increase. It increases in volume considerably when I tuck my chin in to put a stretch on the back of my neck around the C1 and C2 vertebrae (one of the reasons I went to a chiropractor for this as thought there was a link).

I also have a low pitch buzz in my left ear that comes and goes. It feels like there is actually movement in my ear causing this sound. This buzz is down in volume as well but I'm not sure if the diet changes are the reason for the decrease. I have wondered if this is objective tinnitus but I've never had that checked. My self-diagnosis of this is Tonic Tensor Tympani Syndrome (http://hearinglosshelp.com/blog/do-i-have-tonic-tensor-tympani-syndrome-ttts/) but I'm not certain of this.

 

I’m in a masking it obsessively 24/7 situation do you have any tips to get out of it? Whenever I go into quiet rooms I have major panic attacks

 

I think if you're having panic attacks when you go in quiet rooms I'd say keep masking. Especially if you can.

My issue was I would get very upset when I heard it in silent/quiet rooms. So I masked. Mine was super loud and to be quite honest the masking noises didn't help that much. It took a lot of them at very loud volumes to get there. So I could hear all of my T noises most of the time.

I ended up going on a cattle drive for a week. No signals of any kind or electricity. At first I was so upset and depressed. Because the silence and the beautiful nature noises have always been my home. Which were all being drowned out. Basically by necessity I had to give up masking. Because every time I went hiking/climbing, cattle drives, or whatever took me out the the middle of no where I'd mourn and get depressed about T all over again. For me the idea of giving up masking was a necessity. I realized for my lifestyle and sanity I needed to be okay with hearing it.

Sorry. I'm not sure if that gives you any help or advice. I think you'll know when you're ready, can, or are at a point that you don't want to mask anymore. You're not even a full year in. So don't put too much pressure on yourself.

 

I am so happy for you for all the progress you made! Can you tell us how many times it took of exposure therapy for the fight or flight symptoms to stop happening?

 

I've done an exposure 24 times of about 10 - 15 minutes each. I haven't done one for a couple of weeks now. I probably should have kept at it since fight or flight still kicks in occasionally (today being one of those). Not as severe as in the past though.

 

I have been trying exposure therapy with several other things in my life recently. It has really helped me. At first the "fight or flight" syndrome would kick in but I toughed it out even though sometimes it was extremely hard. I kept telling myself the emotions and feelings would eventually pass. The more I did exposure therapy, overall, the better I got. I also reduced sugar and chocolate and I think that has been very helpful for me to.

 

Hi Dave,

Hope you are still doing well and thanks for sharing your story. Could I ask you to share a bit more about the exposure? Did you start with a shorter time and then build up? Or did you just go for it? Did you do it every day? Did you do it regardless of whether you were having a good day or a bad day? Did you find that things got worse for you for a while when you first embarked on this? I feel I have made SOME progress in the last 6 months and life is bearable again – whilst I'm very keen to make more progress I also don't want to knock myself with an unpleasant experience.

Alos, I tend to find that the longer I sit in silence the worse I feel. I.e. the first few seconds might be ok, or the first 5 minutes, but the longer I sit the more and more overwhelmed and scared I feel. Did you experience this? Do you ride it out or do you get up when it gets too much? I'm worried about overexposing myself and causing myself more trauma and anxiety that will be harder to recover from.

Thanks very much in advance for your help. Like Shera, I love the outdoors and nature, and these are currently pretty much ruined for me because of T, so I'm keen to start decreasing my reliance on masking. I'm doing better than I was but even a year in I still experience really strong feelings of fear and anxiety when exposed to my T in a quiet room, and I'm starting to feel like enough is enough!