New Member in Istanbul and Long-Term Sufferer Is Giving Up the Fight

[Simon Johns]

Hello All,

I am a long-term sufferer (35 years). I think I first noticed my tinnitus after a tonsillectomy when I was 6, although it could have been brought on by a couple of high-volume episodes around the same time.

Concert going and a career as a musician has over the years increased the level of my tinnitus and has knocked out my 6kHz range, making it hard to make out conversation amidst moderate background noise. I have to stare at people's lips these days, which is getting me a reputation as someone who can't make eye-contact.

The level of my tinnitus is high. I can hear it most of the time. I avoid silence as much as I can, preferring to sleep with a radio on, which of course irritates my wife. Also, like many here I guess, I self-medicate with alcohol to help get to sleep.

The ringing itself is a high-frequency whine much like the sound emitted by an old cathode ray tube TV when you first turn it on - white noise with a distinct dissonant overtone. Sometimes - and quite randomly – the level will suddenly increase in one ear for a few minutes. These episodes are sharply painful and block out all sound in the affected ear (usually the right one).

Lately, my perception of the volume has increased greatly. What was just about tolerable is now unbearable. It's making me very depressed not least at the idea that I may lose my hearing altogether only for the tinnitus to remain.

Apologies for the long introduction, but this is the first time I've laid it all out in one place.

Looking forward to sharing stories and strategies.

 

[Fiore]

I'm sorry to hear about your suffering simon, 6 is a very young age to deal with that (sigh) I really don't know what to say. I have been with T since Feb,2 2015 and if you read the support thread you'll see that I'm just all over the place. Kids get their tonsils removed all the time, it surprises me that it caused your T....

This is how I deal with mine until I find out what caused this aside from it starting after an impacted ear wax causing my T from pressing up against my ear drum then being syringed out.

-cats claw tea before bed
-breathing exercises when I know an anxiety attack is about to come (developed this because of this T)
-no sugars no caffeine.
-sleep with a fan on
-AVOID loud noises
-AVOID meds

Still thinking about the whole 6 yr old thing, I think its just cruel for a child to go through that.

 

[Mark Beehre]

Hey Simon, have you been to see any health professionals about your tinnitus?

 

[Simon Johns]

Hi Mark. Thanks for reaching out.

I would go to regular hearing tests at my local hospital to monitor any loss, which there wasn't until recently. One clinician said I actually had sensitive hearing. I was offered a session with a therapist offering relaxation techniques, but the waiting list was a year. That's the NHS for you.

Most of the advice I got was that there is no cure or even effective therapy so I didn't pursue things further.

Since living in Turkey, I have seen an ENT specialist who detected my 6kHz loss and balance problems. He prescribed Nootropil for the vertigo (I think it actually makes it worse) and simply advised avoiding in-ear headphones, which I do, and all the usual – no caffeine, alcohol, stress, etc.

I'm ashamed to say I've hardly been proactive for a problem that has gone on for so long and has been so debilitating.

 

[billie48]

Welcome Simon. You are a brave man having to deal with high pitched loud T for a big part of your life. That takes some stamina of character to do so. Hopefully your recent spike will settle down. When T hit new or increase to a new level, the body usually takes a while to adjust to the new condition. We need to give it some time and change our attitude a bit to help the body harden to the new level of ringing. I hope you don't despair. Many people who have high pitch loud T (and/or hyperacusis) and still manage to recover & enjoy life again. Even celebrities have loud high pitch T. William Shatner (Capt Kirk of Star Trek) has suffered greatly initially and he said he was suicidal at one point. Here in this video he & David Letterman (who has 2-toned T himself) talked about their T in a 1996 show. Shatner recovered and eventually became the spokesperson for America Tinnitus Association (ATA):




I am one of those unlucky souls who a few years ago, besides bad tinnitus, also suffered severe hyperacusis. My T is an ultra high pitch dog whistle which can be heard above the jet noise in flights and above the horrendous roar of raging rapids while fishing. My H turned all normal sounds glassy and piercingly hurtful. I couldn't stand the sounds of TV, dishes, driving, conversations, even the soft voice of my wife hurt when spoken close to me. Gosh! H is actually more limiting than T in the sense that I had to withdraw from all social events and life became lonely. No eat outs, no parties, no movies, no concerts. I was in a 'prison' of sort. I had to wear earplugs but the plugs blocked all outside sounds making my ultra high pitch dog whistle T so unbearable & dominant.

H and T are two mutually exclusive tyrants. There is no lesser choice between them. They overwhelmed me and turned me into a wreck. I was in deep depression and had a hard time sleeping. Worse, I also suffered from anxiety and panic disorders prior to T & H. So these two alien beasts literally opened the flood gate of hell of relentless anxiety and panic attacks on auto mode the minute I woke up. No amount of will power or things I learned from internet could stop these A & P attacks initially and their own sets of horrible symptoms are even harder to take. People have been known to be house-bound for life or refuse to fly or even go shopping due to the horror of panic attacks. And I was dealing with these unbearable sensations w/o any choice, daily and hourly. How does one live with such unbearable and unlivable condition? Often the tired and stressed out mind was floating the big 'S' word to me as it saw no way out of this 'hell' of a life. For how long? The thought of the future could send chills through my spine. The only way to cope initially was to take meds, benzos, ADs, sleeping pills, herbal supplements and what have you. I never thought I could recover from this nor ever see my good life back again. I was in a long dark tunnel with no end in sight.

But never say never. Today I live a normal, productive and absolutely enjoyable life. T is still the same loud high pitch dog whistle which cuts through most sounds including jet noise & river rapids, but my brain is hardened to this ringing and doesn't give a dime to it. The same sound used to overwhelm me. No longer. It has lost its tyranny over me over time. It is now just a paper tiger.

I am not alone in this. The success stories here and on other forums such as Yuku are filled with people who get better over time and after some help one way or another. So read over them to give yourself some hope and learn some valuable insights how to get better even for loud and high pitch T. In general, time, acceptance, positivity and patience plus some strategy will lead one to improve over time. So remember to give Time enough time. Hope you will improve. Relax and don't despair.

 

[Mark Beehre]

Hey Simon,

There are ways to desensitize your hearing, you may wish to consider treatments like TRT. Can take a year to work effectively, but if done right can help with the habituation cycle. The important thing to realize is that you can get through this and return to your normal life. The only thing is it takes time. Success stories like Billie's above just reinforce that point.

I would recommend you see an audiologist about TRT.

 

[Simon Johns]

Thanks for the detailed post Billie. The Shatner-Letterman clip is very sweet.

And thanks Mike for the tip about TRT. Since finding this forum, I've come across so many posts with more info and treatment advice than I know what to do with.

Lots to read and catch up on.