New Poster, Long-Time Sufferer — My Tinnitus Started Suddenly in a Restaurant

I was in a restaurant in Texas in 1987 when I thought someone had turned on a fan over my head. It was the start of tinnitus for me. We all experience different forms of this illness. Here are some of the facts I have learned about my version:

- The hissing/electrical discharge sound is in my head, not my ears. The level varies day to day. Most of the time I can ignore it. When it's bad it makes me very tired trying to ignore it.

- Initially I kept a comprehensive spreadsheet tracking all potential contributing factors (barometric pressure, weather, food etc.) and isolated sleeping as the prime activator (even a short nap) also yellow #5 food dye and loud noises.

- I think sleeping position may be a factor but I can't prove it yet.

- I have found nothing to turn it off.

- About once every 4 months I wake up with absolutely no tinnitus. Cannot identify why. Feel like a new person but it comes back as soon as I sleep.

I'm a retired nuclear physicist/international project manager and spent a lot of my career solving technical problems. No success with tinnitus!

 

Did sugar, salt or over eating affect it at all?

 

Hi @GeorgePhys.

Seems like you have been able to carry on without too much issue with tinnitus for a really long time. That in itself is inspiring. I hope things are at least stable for you and that you haven't sought us out because of any serious developments. In either case, welcome!

I am curious, did you ever investigate whether blood flow or any vascular issues played a role? I have similar sounding tinnitus to yours, based on your description, and sometimes I wonder if that is the cause. Naps can also mess with my tinnitus. Regular sleep, not so much.

Cheers!

 

Not that I could detect.

I never tested blood flow or vascular issues and wouldn't know how to do so. If you tell me how, I will give it a try.

Bad day today with tinnitus even though all allergens are low.

Is your ID a joke? A combination of UK initials for a John in the US?! Clever!

 

Hi George!

Sorry to know you've been dealing with this condition for such a long time. I was just 9 years old when you were in that restaurant in Texas. Sure the world has changed quite a bit since then.

I can relate 100% to the fact of sleeping being a switcher for my tinnitus. I wake up every morning to a different one. It has been this way since day one 8 years ago. Not that I have thousands of types of tinnitus but it's mainly the volume and tone changing. From almost silence to the sound of an angle grinder split chopping my skull. Macabre lottery which has made habituation impossible to achieve so far, although I can have weeks in a row I completely ignore it despite it sounding LOUD.

I'm aware cluster headaches work in the same way. There's something happening during the REM phase of our sleeping which seems to change our neurological mapping.

A tight hug for you and I hope we find relief soon.

 

Interesting. Much of Professor Susan Shore's research over at UMich has involved 'somatic' tinnitus, i.e. the kind that can be modulated with face and neck movements so I can see how something like neck position on a pillow during sleep might feed into the following day's bout with our unwanted friend.

 

Hi @GeorgePhys,

In your analysis and comparisons, did alcohol ever play a part in the change in your tinnitus after sleep?

Is it just the volume that changes for you after sleep, or does the pitch fluctuate between primarily hissing with lower electrical discharge to primarily electrical discharge with lower hissing?

Is your tinnitus sound reactive during the day, or you can do what you like during the day and it will only increase in volume or change pitch with sleep?

If the pitch changes, have you found anything you did - or didn't do - to encourage more hissing than electrical discharge and buzzing?

When you say 'loud noises' being a prime activator, do you mean +85 dB, or do you mean surprise noises that are a shock to the system?

Interesting you mention yellow #5 food dye, as there have been studies linking this to sleep disturbances!

Thanks!

 

Hi, @GeorgePhys.

For the blood flow thing, I have no idea. There is probably some horrible medical test for it that I can't be bothered with.

As for my ID, bahahaha! Sadly (not really) it's not a joke. John is just John, and WC stands for Western Canada. It only took me about two months to see the joke in it. I was wondering if anyone else caught. Congrats! If you're not the first, you are the first to mention it. If it gave you a chuckle, so much the better.

 

Hey @GeorgePhys - I can also relate to some of your timnitus characteristics. Like you and @El BUZZ, mine also changes drastically in my sleep. What I wake up to tends to be (with some exceptions which I can explain if you like) what I experience for the whole day. Some days are loud and some days pretty quiet. I've narrowed the switch down to the REM portion of my sleep.

I've had my timnitus for almost 17 months now, and Ive learned that it has a cycle actually. I didn't recognize it intil I started recording the kinds of days I was having. The cycle generally goes like this: loud day, mild day, mild day, quiet day, repeat.

There is one theory I've been exploring recently is my lymphatic system. I've noticed that I experience tenderness that comes and goes at the same cyclical frequency in areas around my right ear--my face, neck, and skull areas. It's at least a comorbidity. Perhaps whatever biological process is happening while dreaming (like cerebrospinal flushing maybe?) is affecting my lymphatic system too. Just a thought, since sleeping position tends to affect my timnitus--sometimes in miraculous ways (as in, having the ability to turn my tinnitus off sometimes), which I can explain if you like.

I'm curious how you pinpointed yellow #5 food dye. How did you learn that one and what kind of effect does it have on you?

 

I'm curious on this?

What sleeping positions have you found works the best or worst?

 

Hey there @DeanD, I can explain what I've learned about my sleeping position. I started toying with sleeping position after I became aware that my tinnitus switches in my sleep. So, I'd have a quiet day, for instance, then go to sleep, and wake up to a loud day. Once I realized this characteristic, I started experimenting with wake-up times and sleeping positions. I would try different sleeping positions, pillows, blankets, and I would get up and different wake-up times to see if anything made a difference.

And I'll just give you the TL;DR of the technique I learned. Since my tinnitus is cyclical, I can anticipate the days where I'm supposed to wake up to a loud day. What I do is this: on the morning of what's supposed to be a loud day, if I wake up around 3-4 am, I can catch my tinnitus ramping up. I roll onto my right side (the side where I experience tenderness on my face/neck/scalp, and also the side I experience my tinnitus) and lie in fetal position. I turn my head slightly so my face is pressed more into my pillow. Then I lie there and meditate (or even just look at my phone) for about 20-30 minutes, and my tinnitus slowly evaporates until it's gone. As long as I don't fall back asleep, it stays quiet for the rest of that day. If I fall back asleep, there's greater than 90% chance that I'll wake up to a loud day.

The above technique works about 75% of the time on the loud mornings when I bother to try to wake up early. I don't always try to wake up early because sometimes I'm just too tired (I tend to sleep poorly in general, so I'm often exhausted, I have sleep apnea to boot).

What I've learned is that I can go to sleep in just about any position, but on loud mornings, it greatly helps to roll onto my right side. I try to sleep entirely on my ride side, but I move around so much in my sleep that it's pointless for me. I could try forcing myself to sleep entirely on my right somehow, but I haven't tried that yet.

Also, I should mention that on any loud day after I get up for the day, if I climb into bed and lie on my right side and meditate so that I'm in a deep meditative state, like almost asleep, my tinnitus also dissipates while I'm in that meditative state. But once I get back up, the loudness returns.

 

Good info. I'll follow up with your reference to Susan Shore.

I identified Yellow #5 after I ate something for lunch that immediately affected my tinnitus level. I then was able to repeat its effect. I just try and avoid Yellow #5 so it's not a major factor for me. It's usually identified on the food package.

How did you connect REM sleep as being a causal factor?

I am a restless sleeper. I have been unable to correlate with sleeping position although I feel it's a significant factor.

When I awake with high tinnitus, I invariably have a stiff, crackling neck.

Like you, sleeping can turn my tinnitus on and off. Even a short nap can switch it on but never off.

I also suffer from sleep apnea.

 

So three people here with sleep apnea (including myself) and three people whose tinnitus is affected by sleep - coincidence?

 

That's interesting, I haven't run into any food-related triggers as pronounced as this. It's good that it gives you such a clear signal so you know what to avoid.

I did a bunch of trial and error on my wake-up times. I used an Oura ring to track what my sleep states were. Over a long period, I narrowed down the conditions in which my tinnitus would switch. For instance, I learned that if I went to sleep and woke up before I entered REM, then my tinnitus would not change states. The only sequence that appears to switch my tinnitus is: fall asleep, dream, then wake up.

That's interesting, I wonder if you can narrow down what aspect of sleep is causing the switch. It would be interesting if it's REM sleep for you too. For napping, my tinnitus obeys my daily cycle as its primary directive, so naps won't in general switch my tinnitus. If I'm having a loud day and I nap, I'll wake up with it still loud. If I'm having a quiet day and I nap, I'll wake up to it still quiet.

Ah, so do you use a CPAP machine? Although I've had sleep apnea for as long as I can remember, I only started using a CPAP after my tinnitus onset in hopes that it would help with reducing my tinnitus. But, I now know that it doesn't have much of an affect if any. But I do wake up more rejuvenated, so that's a small victory.

 

My tinnitus is similar and I too used to track it but finally gave up. I still get spikes after lunch and can't figure out why, so that's very interesting about the Yellow #5!

 

Good point!

 

That is interesting @DeanD. Has dealing with your sleep apnea helped at all?

 

My sleep apnea was diagnosed as 'mild' after having a sleep study @Joe Cuber, so my pulmonary doctor didn't feel it necessary for a CPAP machine or anything else at this stage - so I haven't really been treating it.

@GeorgePhys, is it just the volume that changes for you after sleep, or does the pitch fluctuate between primarily hissing with lower electrical discharge to primarily electrical discharge with lower hissing?

If the pitch changes, have you found anything you did - or didn't do - to encourage more hissing than electrical discharge and buzzing?

 

I tried the CPAP machine, but I toss and turn a lot and couldn't handle the hose.

Typically, I have no problem sleeping.

 

Were you still a university student when this started? If so, how did you cope with it?

I am studying math at university and I am cursed with tinnitus during my studies and I feel like it is simply over. It is impossible to concentrate on anything with this sound in my head.

 

I've been doing competitive math and programming all my life. Since my onset of tinnitus, I haven't solved a single problem. As you say, it's very hard to focus.

However, I still think this is possible with time. I think it would be a combination of two aspects: most importantly, good sleep; and an environment which lessens the perceived presence of tinnitus. You could use a sound machine, go to a park, or do anything else that works.

As a last measure, you could take a sabbatical year and resume studies later. You could use the sabbatical to study ahead at your own pace. You are likely still young and your tinnitus could resolve eventually, or you might habituate.

 

I have musical tinnitus. I have almost no success dealing with it. Sometimes focusing helps, but it depends on my emotions. Unfortunately, returning to places that I associate with deep experiences does not help me. The sounds are then unbearable. I admit that it is extremely mentally exhausting. Musical noises wake me up even during sleep.

 

The pitch doesn't change, just the volume.