New Sufferer

[Drone Draper]

Hello TT,

I'm a new sufferer of tinnitus, started the first week of December, so nearly two months ago.

I've got the typical 4kHz dip in my hearing from a life of sound abuse, although it was probably two concerts I attended at consecutive weekends that did the damage to push it over the edge.

I've been to see my GP, ENT and two audiologists.

GP - couldn't do much, although I don't blame them, they probably deal with diabetes and flu symptoms 90% of the time. They had a look at my ears and found some wax in my right ear that was removed, but that didn't make a huge difference.
ENT - did a hearing test, said I had hearing loss, gave me a decade old printout on how to habituate and said my symptoms should improve in 6 months and if not, come back to see him. I felt like he was basically saying "hey, if you haven't killed yourself in 6 months, come back if you want". He did refer me for an MRI, but having read up on people's awful experiences with this, I may turn it down. To be fair to him, this is probably not within his field of expertise.

Audiologist 1 - Gave me a hearing aid to try out. My hearing isn't quite bad enough to warrant a hearing aid normally (allegedly. -17db in my right ear), but he said it could help balance out the internal noise by turning up the external noise. It sometimes helps, sometimes doesn't. I don't know if this is worth keeping, I've got a follow-up appointment tomorrow to discuss it.
Audiologist 2 - Said I had a hearing loss and to get used to it. Gave me a few apps with various noises to mask the noise.

I've also seen a few counsellors, most of whom where sympathetic and well-meaning, but I've got an appointment with a third audiologist tomorrow who also offers TRT. I think this will need to be my path forward. Yup, crappy habituation.

In terms of my tinnitus, it's changing all the time. It's predominantly in my right ear and has gone from a whistle to a whoosh to an angry electric sound to whatever the hell. At one point it sounded like the introduction to "Lucky" by Radiohead - basically the sound of Johny Greenwood striking at the strings above the fretboard. For this reason, the second audiologist said he didn't want to offer me any of their (expensive) therapies as the sound would need to stay consistent for the treatments to work. I can't hear the T outside in the street or in busy cafes (e.g 70dbish), but I can hear it in quiet rooms (30-50db) and in the office (50-60db).

I've been taking tebonin and started HBOT. It's hard to say if either is making a difference, as the T is changing all the time. I can't do a double blind placebo study on myself, so I will stick with both. I've been recommended to do 15 HBOT sessions, I've done 6 already. I can't say it's the most pleasant experience, but I'm willing to stick it out.

My biggest problem is sleep. I can't seem to sleep without the aid of sleeping drugs, which will run out in a few weeks. My doctor has prescribed Zopiclone. I can't even get a full night's rest, I sleep maybe 5-6 hours broken up into a few sessions. Once they run out I don't know what to do. I also started sleeping with earplugs about a decade ago due to living in shared accommodation, so I'm now trying to adjust to not using them on top of the T. I tried sleeping with earplugs and... it was kind of better, but obviously the T was loud AF with the earplugs in.

My support network is not really very good. In this city, I pretty much only have my girlfriend to lean on and she's not really able to offer the level of support I need. She also made fun of the fact that I spent money to see my ENT privately (I couldn't wait the 8 plus weeks it would take to get an appointment via the public health service) and the HBOT. I found this very upsetting.

I am considering moving home to my parents as I have both parents and two siblings in my home city. They would offer me a bigger level of support - I've been speaking with them via facebook, they all think I should do it.

Ultimately, I'm worried at this stage. My obvious hope is for a full remission of the T, or at least a massive decrease in volume, which I've seen happen to some people on here. I don't want to do anything drastic like self harm - I don't even know how I would do it, to be honest. I don't even recognise the person I was 2 months ago, it literally seems like a dream that I had such a carefree, nearly silly life, worrying about things that seem completely immaterial now. My girlfriend keeps saying I don't have anything serious like cancer, but the complete inability to sleep is driving me crazy. Outside of a remission or decrease, I hope I can live with this T. I think if it just settled on a certain type of sound, things would be easier. It's the constant changing that makes it hard to actually know what to do. I go to bed with one sound, wake up with another.

Anyway, I thought I'd join this forum as I have been lurking for about 6 weeks. I don't know what I'm really hoping to achieve by posting here as I've learned a tonne from just reading, but I guess I just need to communicate with other sufferers.

 

[Bobby B]

The best strategy is to get busy doing things
You don't need support from others they won't understand anyway just like we did before T
It will improve over the years but it takes time

 

[Drone Draper]

Thanks for the reply. I always had a fear of T, I did have ringing ears occasionally from gigs, I always thought it sounded like hell. I think I'd be able to sympathise even if I didn't have it.

Has your T improved at all in terms of sound levels (perceived or otherwise)?

 

[Bobby B]

Yes it has improved a lot but it took 3 years
It's still here but only an issue at night where I use masking wirh crickets noise

Mine is from shooting high powered rifles and machine guns with inadequate hearing protection and military service, decades of loud clubs etc

 

[Drone Draper]

I see. How is your audiogram? Any measurable hearing loss? If so, did it change over time?

 

[PanM]

Ultimately, I'm worried at this stage. My obvious hope is for a full remission of the T, or at least a massive decrease in volume, which I've seen happen to some people on here. I don't want to do anything drastic like self harm - I don't even know how I would do it, to be honest. I don't even recognise the person I was 2 months ago, it literally seems like a dream that I had such a carefree, nearly silly life, worrying about things that seem completely immaterial now. My girlfriend keeps saying I don't have anything serious like cancer, but the complete inability to sleep is driving me crazy. Outside of a remission or decrease, I hope I can live with this T. I think if it just settled on a certain type of sound, things would be easier. It's the constant changing that makes it hard to actually know what to do. I go to bed with one sound, wake up with another.

Have you considered consulting with a psychiatrist to address the concentration-mood-sleep issues?

For me it did the trick.

 

[Drone Draper]

I've been seeing a psychologist for the last 2 weeks. The first session was just a general meeting, the second was a bit of the same. She said she would like to discuss my general personality traits and my childhood, but I think I will cut to the chase when I see her next, later today.

My GP also wants me to consider mirtazapine. I've been very reluctant to use any anti-depressants, but I'm warming to the idea. I know from my lurking that at least one user relies on it to get a good night's rest due to the drowsiness it creates.

 

[Bobby B]

The 4khz 40db dip improved to 25db but the over 8khz has not improved much I think
Hence the T
Not an issue in everyday life
I bought some nice horn tweeters from fostex to push these highs with more power and it sounds good

 

[Drone Draper]

I see. Yeah, I didn't get tested for over 8kHz. I don't think any audiologists here do them. Good to hear there was an improvement.

 

[Agrajag364]

@Drone Draper you win best username for a start. Tinnitus can absolutely decrease in volume or go away altogether. I had a really good look at the published literature on this when I first got it, spoke to clinicians and asked around. It's fair to say there is no consensus on just how common this is! @Bill Bauer started a good thread on this. I collected stories of it going after the 1 year point I will PM to you if you want. Otherwise, it appears to quieten down in the first year for many people. If it doesn't most people do "habituate" i.e. learn to tune out the sound. Sorry that your girlfriend is not being more supportive, you are not alone in really struggling with this thing at onset so do not think of yourself as weak.

 

[Drone Draper]

Thanks @Agrajag364 , I've seen your posts around! The first audiologist (hearing aid guy) said I could expect to see improvements in the first 9 months. I would french kiss a polar bear if I thought it could guarantee major improvements in 9 months. I've got a Notepad file with all the positive stories I've seen on this board, but I may have missed some. Please send on this list. I don't think I can habituate to what I have at the moment, the sound is just too volatile. How is your tinnitus at the moment?
I think my girlfriend understands a bit more about how I'm feeling today. We had a chat and I told her about my feelings of not wanting to go on like this. I really do wish I didn't live so far away from family.

 

[Carlos1]

@Drone Draper
Hi Drone My Doc also prescribed Mirtrazapine and it helped me with my anxiety and sleep.
Stay Strong keep posting this forum was a huge help for me in realizing I was not alone battling this T beast.

Take care

 

[Drone Draper]

Hi @Carlos1 . Thanks, I do honestly feel a bit better by posting on here.
I keep telling myself - and I think I read this on here first time - life can still be beautiful, even if it's covered in a layer of s**t.
I'm off to meet my GP in 20 minutes, I'll ask about starting the mirtazapine straight away. My understanding is that it's not otoxic like some other anti depressants.

 

[PanM]

I've been seeing a psychologist for the last 2 weeks. The first session was just a general meeting, the second was a bit of the same. She said she would like to discuss my general personality traits and my childhood, but I think I will cut to the chase when I see her next, later today.

My GP also wants me to consider mirtazapine. I've been very reluctant to use any anti-depressants, but I'm warming to the idea. I know from my lurking that at least one user relies on it to get a good night's rest due to the drowsiness it creates.

I think only psychiatrists can prescribe antipsychotics (in my country that's the law). Antipsychotics first and foremost help with concentrations issues, which then in turn helps with sleep, which then helps with mood (according to my understanding from my psychiatrist).

It's quite reasonable for absolutely any human being to have concentration issues, when he/she is compelled to listen to a 24/7 alarm going off. There is nothing to feel bad about.

Also consult with your doctor regarding meds and ototoxicity.

sidenote: be kind to your gf if she is not 100% empathetic. Humans can FULLY undestand an experience ONLY when going through it.

 

[Drone Draper]

Hi there,

I think it's the same thing in this country, actually. I'll ask my GP about the antipsychotics as I head off to speak to her to see if it's something only pyschiatrists can prescribe here.

I definitely am trying to be sympathetic to my gf's point of view. She didn't sign up for this and this is probably too big of a deal to ask just one person to support alone. I'm hoping the psychologist and audiologist that does TRT can help me and at least ease the burden of leaning on her.

 

[Kelvin]

At one point it sounded like the introduction to "Lucky" by Radiohead -

The quote above caught my eye...one of my top 10 songs on one of my top Ten albums !!

Anyway...Hi and sorry to read your re suffering so badly. Unfortunately its not uncommon.

Im Three year in with a high pitched Hiss.

It will get better...or you ( your brain ) will learn to notice it less.

The following have helped me : -

Try to eat well - sugar, salt and alcohol may make your T worse - but may not - everyone is unique.
Try to sleep well - even if that means medication - I used Melatonin and L Tryptophan.
Be fully engaged in life.
Tell those close to you what is happening - if they laugh they are ignorant - don't stress it !
Be as busy as you can.
Don't spend money looking for a cure - it simply does not yet exist.
Smile and be as happy as you can - there're folk worse off - although this is pretty uniquely shit.
Try and look at this new noise as an unwelcome guest - and do your best to ignore it.
Don't give it attention - it loves it.
De-stress your life - sort out things that may be worrying you - T feeds on stress.
Look after your hearing - use foam earplugs (sparingly) and if you find a situation uncomfortable.
Avoid any form of ear or headphones if you find they make it spike or ramp-up - they do for lots of folk.
Get out in nature - don't lock yourself away.
Come here to let of steam rant or offer support - but don't spend too much time reading doom.

You will get better days, less sensitive, less noisy days. Enjoy them.

By way of hope I now get more better days than i did Three years ago.

Oh yeah and keep listening to Radiohead (quietly...through speakers of course) maybe Moon Shaped Pool

I hope tomorrow will be a better day for you @Drone Draper

 

[Drone Draper]

It is a fantastic album, I don't know if they topped OK Computer. Or if anyone did. I remember thinking "this new tinnitus noise is familiar" and I remembered. The sound was only around for a few days, right now it's replaced by a high pitch not quite ringing sound.

Thanks for all your tips. I'm doing most of them right now, or at least trying to. The worst time for me is the night time at the moment. I'm trying to figure out the best way to sleep comfortably. I've actually stopped drinking alcohol completely just before the T.

How often is your T bothersome to you nowadays? In terms of days a month, say?

 

[SugarMagnolia]

Hi @Drone Draper Based on your post, you don't sound depressed or psychotic. You sound like a normal person dealing with an abnormal situation. They'll treat you with anti-psychotics and anti-depressants when what you need is anti-noise. (BTW have you tried sleeping with a white noise machine?)

I would personally also be skeptical of a psychologist who wants to talk about your childhood. What does your childhood have to do with the fact that you have this awful noise and can't sleep because of it? I believe psychologists can be very helpful, but if I told one that my tinnitus wouldn't let me sleep and his approach was "tell me about your childhood" I'd say auf wiedersehen Doktor Freud and find myself a cognitive-behavioral psychologist.

 

[Kelvin]

It is a fantastic album, I don't know if they topped OK Computer. Or if anyone did. I remember thinking "this new tinnitus noise is familiar" and I remembered. The sound was only around for a few days, right now it's replaced by a high pitch not quite ringing sound.

Thanks for all your tips. I'm doing most of them right now, or at least trying to. The worst time for me is the night time at the moment. I'm trying to figure out the best way to sleep comfortably. I've actually stopped drinking alcohol completely just before the T.

How often is your T bothersome to you nowadays? In terms of days a month, say?

Yeah one hell of a tune that...seen them live a couple of times. Awesome.

So Three years ago I would say I was having Three awful, Two not so awful and then Two much better days out of each week.
Now its more like One awful day, One not so awful, and Four much better days.
So a great improvement.
Its still there if I go hunting for it though.
Just ignore it a best you can.
It WILL improve or your reaction / relationship with it will improve.
Theres not much else we can do...keep on keeping on.
To quote a Radiohead - "Im not here, this isn't happening"
Better days are ahead @Drone Draper

PS I meant to mention that I found low level background noise helpful at night - like talk radio or nature sounds. I put my phone under my pillow so its muffled and fall to sleep listening to the World service or the sound of chirping Blue Tits

 

[Don Tinny]

Tinnitus can improve even after years. But you should be super careful. Mine was almost gone and now (since 2017) is back with full force.

 

[Drone Draper]

@SugarMagnolia - Exactly. I'm not the most balanced chakra worshipper in the world, but I'm overall a pretty well adjusted person, or at least I was, pre-tinnitus. I'm all for eventually dealing with other issues in my life, but right now, this is what should be dealt with, not my childhood.

My doc gave me mirtazepan, I will start that today, just to help me get some sleep, I think @TheDanishGirl (hope you don't mind the tag from a nubee stranger) swears by it. Only 15mg, which will be easy enough to get off, should I want to.

In terms of white noise, I have 4 different machines, I don't know which one I think works best. I'm generally a fan of "fan" noises, but none of the ones I've got seem to get it quite right for me. Please let me know if you have a recommendation.

@Kelvin - Thanks for your well wishes, good to hear about yourself as well. "I feel my luck could change"...

 

[Drone Draper]

@Don Tinny - I know your story from my lurking. Gene f**king Simmons. How has your T developed lately?

I'm envious of your ability to sleep through anything.

 

[PanM]

In terms of white noise, I have 4 different machines, I don't know which one I think works best. I'm generally a fan of "fan" noises, but none of the ones I've got seem to get it quite right for me. Please let me know if you have a recommendation.

I would recommend by pure intuition sleeping with no noise at all if you can to give your ears some rest...and not some fshshshshshshsh for hours long.

 

[Drone Draper]

I was considering that. When I was still trying to sleep with ear plugs before I had any of the white noise machines, I felt like my tinnitus, while intrusive, was lower in the mornings. I postulated this was due to the ears getting some rest, but then I thought "is that just broscience?".

Reading the forum, it seems there's somewhat mixed opinions on this, though not as mixed as on whether or not to wear headphones.

I may try no background noise - my bedroom is quite quiet, I've measured it at about 35-40db. I wonder if that's too quiet... hmm.

 

[PanM]

I postulated this was due to the ears getting some rest, but then I thought "is that just broscience?

Broscience is also my first ENT not giving me cortisone during the first 24 hours (after that its efficacy drops). Instead he gave me a nasal gel, without even looking through my nose. No sniffle.

I can go on and on with my little adventure coming from doctors saying conflicting things with each other and not knowing who to trust.

Go with what works for you better. Listen to your body.

 

[Don Tinny]

@Don Tinny - I know your story from my lurking. Gene f**king Simmons. How has your T developed lately?
.

Thanks for asking. Well...my good days are really good. Those days I read this forum with less interest. BUT it always comes back louder. It is still fluctuating. I guess it will continue like this until there is a treatment.

 

[Drone Draper]

@PanM - That's frustrating! I am reading about prednisone on this forum, my GP didn't suggest it at all when I came to her a few days after my onset. I really wish I had done my research before going. She said today that it may have some limited positive effects when given immediately after an onset, but she was skeptical.

I will try a no-noise night and see how I get on.

@Don Tinny - it's good to hear you have good days are really good. I hope yours effectively goes away again. Nobody deserves this crap.

 

[New Guy]

@Drone Draper

Welcome to the forum. I wish you weren't here.

If you need support this is the place for it for sure.

It sounds like we have similar levels of t. I have a noise induced hearing loss as well. My dip is around -40 around 4k. Are you saying your dip is -17?

I barely hear t outside and in the grocery store, showering and washing dishes is a non-issue, when it's dark at night and the house is quiet it reminds me of the first weeks.

Have you learned about masking yet? That makes a huge difference in keeping your mind off of t. I have Sound Oasis sound machines at my bedside, the kitchen table and my favorite chair in case I need them.

The noise in my head varies as well. It's a steady tone with crickets often underneath, or over, in the mornings and the intensity ramps up through the day. I sometimes get a warbly sound in my left ear that is barely audible under the other t. I have yet to figure out the reasoning behind that.

I wish I could say the t has gone done since I got it 11 months ago. I know I'm better at hearing it and not reacting to it.

Did you notice the t at one of the concerts? If not how many days after the concert?

I hope things settle down for you soon.

 

[New Guy]

I don't even recognise the person I was 2 months ago, it literally seems like a dream that I had such a carefree, nearly silly life, worrying about things that seem completely immaterial now.

You'll find many in the forum, myself included, agree with that statement.

 

[Drone Draper]

Hey @New Guy ,

Thanks for the welcome, and same.

Yes, my dip is supposedly -17 dB or 20 dB, depending on who took the test. I think with 40 dB, they would have definitely recommended a hearing aid. Did you get offered one? I think I would classify my tinnitus as moderate, I have read horror stories here of people who have dentist drills or jet planes taking off. I don't have anything like that, but I also know a few people who just have a bit of rustling in their ears. Most of my friends are heavy metal fans like me and have a little bit of white noise if going into a quiet room. That's definitely not what I have either. I did a THI survey and my rating was "catastrophic". I think a lot of the CBT and TRT I've seen aims to get you to change your feelings about the tinnitus, rather than try to do anything to actually lower it, which, given the limitations of our ability to deal with this problem with modern science, seems like what I should shoot for.

I'm trying to mask as best I can, the one place I really can't is in the office. I've tried restricting headphone usage and it's not really something I like to use anymore anyway, so I have to deal with whatever sound is in the office. It can be quite hard.

Glad to see I'm not the only one with a constantly changing cavalcade of sound, though I honestly wish it stayed the same. I think I could do a better job of habituating if I just had a constant (set) of sounds to deal with instead of not knowing what to expect when the external sound levels go down.

I noticed the tinnitus a little bit after the first concert (they were consecutive weekends), but it was after the second I knew something was wrong. I keep thinking about how I shouldn't have been at the concerts and maybe this could have all been avoided, but I quickly stop myself in my tracks, much like I know you have from reading your stuff. Things happen in life.

When I'm going for oxygen therapy, a lot of the other sufferers have very obvious physical ailments (MS or cancer), and I wonder if anyone else looking at us is judging me in some way. I don't look anything like these people, I'm able bodied and in pretty good shape physically. I'm not saying these people have it better than me or anything like that, but I would say that what we have is quite similar in terms of debilitation in the long term. Not being able to have a moment of silence or to sleep uninterrupted is quite dreadful. Tinnitus is less "irritant noise" for someone like us, more "Chinese sleep torture".