TTTS Advice

Dear Dr Nagler,

First of all I'd like to thank you for all that you've done for tinnitus and hyperacusis patients. Reading your website has given me so much hope when I've been feeling down.

I strongly suspect that I have TTTS. I experience aural fullness, a burning sensation around the ear, infrequent sharp ear pain, some pain in the TMJ area, and most notably loud tinnitus across several frequencies. All of these symptoms flare up when exposed to loud noise.

I'm writing to you because I really need advice on how much I should cut back my exposure to loud noise. Next week I'm supposed to be taking part in a rowing regatta (I'm a cox) which takes place over several days. I raced today and the 4-5 minutes of shouting during a race made my TTTS symptoms flare up considerably, even when I wore ear protection (I have custom fit earplugs). I believe that the noise I'm being exposed to shouldn't be damaging for my ears (no one else wears ear protection), however I'm worried that the worsening of my tinnitus might not go away.

Some background: I've had tinnitus for a few years following exposure at rock concerts. About 6 months ago I went to a nightclub and used ear filters rather than my usual silicone plugs (on the recommendation of an ENT consultant). The morning after my tinnitus had doubled in volume, and since then it has kept increasing and the range of sounds which I can tolerate has kept going down. For instance, two months ago I sat in a restaurant for an hour and the earplug in my right ear wasn't in properly - since then the tinnitus in my right ear has been very loud . I have now got custom fit earplugs which I wear almost constantly when out of the house, since I find the noise of traffic uncomfortable and am constantly worried about construction work/car horns, etc. I've had to cut back the range of places I go to - I find most pubs too loud - and almost always have to ask restaurants to turn down the volume of their music.

I've spoken to two ENT surgeons in London (both of whom told me there was no problem because my hearing tests came back normal, and they didn't take my concerns about noise exposure seriously - the second one simply told me to avoid all loud noise). I have been referred to a third ENT department but will not have an appointment for several weeks. When I get the appointment I will seek help regarding noise therapy etc. However, in the mean time I'm faced with a lot of uncertainty and difficulty decisions regarding my lifestyle choices. Previously I've erred on the side of caution and been accused of paranoia by friends. Over the last month or so I've taken a more relaxed approach, but my TTTS symptoms have got so much worse. Should I cut off as much exposure as possible until I start treatment?

Thank you.

 

That you for the kind words. I sincerely appreciate it and am glad to be able to help in some small way.

I read your question a number of times and have been struggling with how to respond.

TTTS is a challenging diagnosis to make and a challenging condition to have. It seems to me that you have not yet been formally diagnosed; rather you are in the midst of seeking a proper diagnosis and treatment based upon that diagnosis. So instead of calling it TTTS, for now let's just call it your condition.

And the bottom line is that at this point in time loud noise aggravates your condition and makes you absolutely miserable. Moreover, you cannot possible be an effective cox without making a LOT of loud noise ... and earplugs can only do so much to protect your ears from the loud noise that you yourself make!

If your friends accuse you of paranoia because you do not wish to suffer, they are not real friends. Indeed, if you were a six foot two inch muscle-laden 3 instead of a diminutive cox, my guess is that they would be taking an entirely different attitude. They have no idea of the burden you are carrying and have no right to accuse you of paranoia.

You are doing everything correctly. I would be critical if you had confined yourself to some sort of sound cocoon as so many in your shoes do - but instead of withdrawing you are in the process of getting a proper diagnosis so that your condition can be effectively treated. And if the third London ENT is of no appreciable help, that perhaps I might suggest that you see Jacqui Sheldrake at the Tinnitus and Hyperacusis Centre on Devonshire Place.

As to what to do on the short term ...

If you were that muscle-laden 3 and your condition were a broken arm ... you would take the rest of the season off, address the problem with the help of a knowledgeable and experienced medical professional, do your rehab, and come back better than ever next season.

I suggest you do the same.

All the best with it -

Dr. Stephen Nagler