A Message to Frightened 'Anxious Newbies'.

Hi all,

So here I am 6 months in.

When I first developed tinnitus I was so frightened and anxious I thought my life as I knew it was over. HOW WRONG I WAS.
And I did the worst thing I could have done, I Googled tinnitus = BIG mistake ! Before I could say 'OMFG' I was having very dark thoughts indeed. I bought into all the doom and gloom shite that is out there about this condition and completely freaked out !

So there I was - my world had ended.
I then discovered this website and a couple of others - The British Tinnitus Association and ENT UK, and I got some proper, intelligent, supportive, experienced and knowledgable information and advice.
And so began a turning point. But :

In the early days was I a mess = yes
Did I end up on medication = yes
Did I think my life was over = yes
Has that all changed = yes

So here's how it went. I was so stressed and frightened when I first got T it was unbearable, I wanted to die - I needed to calm down, pronto. Why, because the more anxious and stressed I was the worse my T was. That is the same for you. So if you're not coping - you need the help of meds - go see your doctor and get some.

After 6 weeks on diazepam (valium) and beta blockers I felt calm and in control. I decided to wean myself off the meds. Was it all 'sunshine and roses' - no. But I knew I had to cope with this thing unaided at some point.
Did things start to improve - yes. The calmer you are, the better your T is, the better your T is the calmer you feel, the calmer you feel the better your T is and so on and so on . . . . . you get the picture. This takes weeks/ months but it gets easier/ better - much better I promise.

Now I know you're probably reading this and thinking 'this will never get better for me, it's so bad'. Well so did I when I first got T and read the success stories. I thought, no way does this apply to me, it won't get better, how can it, it's so noisy, so intrusive. But mark my words, in 6 months time you'll be posting a story just like mine !!!

What has helped me :

1. After reading reputable information and advice I truly believed things would get better. You have to truly believe this . . . because it's true.
2. I haven't stopped doing anything I did before, I socialize (bars and restaurants), I work, I go swimming, I drink red wine, I eat chocolate, I drink tea and coffee, I LIVE MY LIFE. The only 2 things that have changed since developing T are that I wear ear plugs in noisy places (which everyone should do regardless of having T or not) and I sleep with nature sounds in the background at night.

The facts I have learned about tinnitus since developing it are this :

1. For the majority of people who develop T, it reduces significantly or disappears completely, usually within a year (I understand the stats for this are 75-80%). I know a year sounds a long time but it's better than believing tinnitus never goes away, right ?
2. However, if it doesn't go away, your brain habitituates to it eventually. Yes this can take a while (usually 12-18 months) but it ALWAYS happens unless there are things that interfere with the process - read Dr Nagler's 'Obstacles To Habituation' in Doctors Corner on this site which is very interesting and informative. So, your brain just tunes out the noise in the same way it relates to your nose - did you know your eyes are always looking at your nose ? Well it is ! But your brain recognises that your nose isn't a threat and just tunes it out. You're not constantly seeing your nose, right ?!! That's how your brain will eventually react to your T.

I still have T but rarely notice it these days and when I do it doesn't bother me at all - this is key . . . and you will get there too - yes you will, just give it time ! I still have days were it's more noticeable than others but after a good night's sleep it usually settles right back down again. It used to take quite a lot to distract me from my T - it consumed my thoughts all day long, now almost anything distracts me from it ! My usual (before T) everyday thought processes now distract me from my T and I'm not aware of it at all 85-90% of the time. I'm convinced this is because I was always determined to just live my life as always - yes it wasn't easy at first but it gets easier and easier week on week and becomes kind of natural.

I know everyone's T is different but I truly believe the principles are the same for us all - protect your ears when necessary, don't stop doing anything you did before, take meds if you need to until you are calm and in control and truly believe it will get better, because it will - there was no-one more sceptical about this than me I can assure you.

There is no cure for tinnitus yet but there is more going on to find an effective treatment/cure than there has ever been before so who knows what's round the corner ! There's no cure for the common cold either but we don't get a cold and worry it'll never go away do we ?!! Remember most tinnitus disappers within a year and if it doesn't your brain will tune it out eventually, it just takes time. The brain is a wonderful, complex thing and has the ability to adapt/heal to almost anything.

Hang on in there guys, give it time, live your lives as always and trust it will get better because it will - you can't speed it up but you can't slow it down either, it will just happen.
Right I'm off for a glass of red wine and some ginger infused dark chocolate - always been my favourite ! Xx

 

Thanks for this post..i needed that. Where did you get those statistics? ! I really hope that is true..that within a year 75-80 show improvement. I realize that most turn to forums and chats that are really looking for help and that the ones that are cured you dont hear how long it lasted and how they got their T. Ive basically thought that only 10-15% of people will improve..but thats what i got from looking online.

 

Hi Shantelle, I can't remember exactly where I got the 75-80% stat from (I've done so much reading around T since I got it!) but I know I have read this many times from various reputable sources. Also, a direct quote from ENT UK is this "many people think tinnitus will never go away. This is incorrect and, with time, most tinnitus lessens or disappears".
I have also read on here that for the majority of people who develop tinnitus it largely or completely disappears, usually within a year. I personally know 4 people who developed T and for 2 of them it disappeared completely after a few months and for the other 2, it hasn't disappeared but they have habituated and don't hear it at all unless they actively listen out for it. I think the key is that you have to trust that it will get better - the T will either go away or your brain will tune it out in time.

So take heart Shantelle, it isn't all doom and gloom, you will be ok honey. Xx

 

Hi Jill, great post I'm just coming up to 3 months. I'm still having dark days but digging deep when I get them. I'm also on diazepam at the moment, but don't want to be on them forever. Thanks for posting a positive message it's helped greatly xx

 

Hi Ashleigh, yes the dark days are horrible but if you can try to stay focussed on the fact that your T will improve as time goes on it will help. It was at about 3 months that things really started to improve for me and gradually the bad days became less and less and the good days started to outnumber the bad ones ! Between 3-6 months it's got better and better - by that I mean my reaction to the T is neutral, it doesn't scare me, worry me or make me sad. I have no reaction to it any more and so I'm calm and in control of it. I think because of this my brain is getting 'bored' with listening to it and just doesn't register it much anymore. I guess this is habituation - whatever it is, I like it !!!
Stay positive and optimistic Ashleigh, get on with your life as always and do the things you enjoy and slowly you will notice youT less and less.
Best wishes. Xx

 

Great story Gill. I am almost 4 months into T now. Things slowly starting to getting better although the noise is still annoying me from time to time.

In the morning it is really queit and cant even hear it properly but later on the day it starts getting more and more loud.

Hope one day it will go away completely or at least reduced cause it is very loud.

 

Your story is a true inspiration, I signed up to this site literally 10 minutes ago and seeing this really helped me relax. Although in really hoping mine goes away considering I'm only 19.

 

Hi Beessie,
Yes mine is the same, very quiet in the mornings and during the day. It's the evenings when I'm watching TV or a film that I tend to notice it most - that's been the case since I developed it. What I have noticed in the last couple of weeks tho is that it's starting to be hardly there in the evenings too ! I guess this is the natural progression of habituation. If I'm out in the evening or I have friends round I don't notice my T at all because I'm distracted from it.
What's really weird is that if I'm away from home for a couple of days with work or visiting friends I don't hear my T for all the time away ! The brain is a mysterious thing lol !!!
All I can say is that, although I'm not out of the woods yet, things seem to be getting better week on week.

Billington, have you thought about CBT or TRT to help you habituate ?

 

Thank you so much..your words and positive attitude help so much. How did you get your t? I hope those stats are also for noice induced.

 

Hi Shantelle,

I'm pretty sure my T developed because of a long period of quite intense stress - now gone I'm pleased to say. As far as I'm aware the percentage of people who's T lessens or disappears eventually is regardless of whether their T is noise induced or not but I'm no expert so you might need to ask that of your audiologist or one of the Drs on here.

 

Mine was also stress-induced stress is gone now but the Tinnitus is still here. It is just because of the noise is having big impact on my limbic and nerve system which is just hard to control. Currently waiting to have Tinnitus therapy in Hoensbroek, which is a very good one although the waiting time is long.

Do you have any pro tips to not let the T control of you? I am most of the day thinking about it even in the morning when it is queit. I just cant let it go from my mind even when I am in the gym or doing other things.

 

Hi Beessie,

I know what you mean about tinnitus always being on your mind ! It used to be the first thing on my mind when I woke up in the morning and the last thing on my mind when I went to bed at night !! It's hard not to keep focussing on it isn't it. For me, I found that as time went on and I just got on with my life I seemed to have periods of not thinking about T. At first this might only have for a few minutes then it would be for half an hour and before I knew it hours would pass by and I'd realise I hadn't thought about my T at all ! This is when things really started to get better. The less time you think about your T the calmer you become, the calmer you become the more you 'forget' about your T.
Don't get me wrong - I'm not fully there yet but compared to a few months (even weeks) ago this is nirvana !!!
It was the evenings when I was alone watching TV or a film that I used to notice my T the most. Now, even in that situation I hardly notice it - I can now concentrate fully on what I'm watching and T isn't a problem.

We're all different Beessie and it will take different amounts of time for each of us to get to those milestones but if you believe it will happen I'm sure it will. This condition takes time and patience - a lot of both ! And we have to go through some pretty dark times to get there, tinnitus is awful. But hang on in through those dark times, brighter days are round the corner. Xx

 

Hi guys,

I forgot to say, something that helped me through my dark/anxious moments was this - if I read something that I found comforting and reassuring I would write it down and read it at those moments. Also, I read loads of positive stuff on this and the BTA and ENT UK websites so I would screenshot them and look at them when I needed to, this helped drag me out of my anxious times - it really worked for me. It also helped me stay focussed on the positives and helped to keep me calm - and we know how important that is ! Try it guys. Xx

 

Thanks Gill for your kind messages.

I agree with you, not thinking about it, is very hard although one of the most important things!
Yesterday was a great day for me, barely noticed my T it was so queit.

It is great to see you handling so well with your T, congratulations with that and keep strong!

I' am sure one day will be the same for me, things already improving but sometimes you can;t get those negative thoughs out of your mind.

 

Im also coming to 3 months in few days. I used diasepam for 10 days but i wont anymore, i dont want let T affect my life. Today im scheduled to MRI and tbh im super scared. Thank you Gill for sharing your thoughts, i have a little hope now.

 

Take earplugs with you. MRI can be very loud and increase T (it cause T in some people anecdotally). They should give you earmuffs as well so ask about them too. Better to be overprotective with hearing in this case.

 

Although I'm really struggling with this, particularly today I'm glad to hear there is hope for the future. Has anyone tried any kind of Therepy?

 

Thank you for sharing your story, and for being so encouraging.
Just wanted to point out that for those at the 1 year, 18 months, 2 year plus mark, tinnitus and hyperacusis can still fade, and habituation is possible further down the line too. Our brains do not have marked and matching calendars. Doctors agree that there is no statistical evidence recorded of these timeframes. It is unusual for patients to also stick with the ENT/audiologist past these timeframes. Plus, don't forget, everyone's tinnitus is different, and we all hold different healing potentials, stresses, scenarios.
The very meaning of plasticity is "change". Our brains are changing all the time.
Go to Julian Cowan Hill's page on youtube re his recent video phantom tinnitus anniversaries.

 

Absolutely lisa88 - I've read that Dr Nagler knows people who's T has gone completely at 3 and 10 years ! And, yes, habituation can happen at any time no matter how long someone has T. I guess I wanted to quote the best average and usual time scale in order to reassure newbies for whom I was posting the above message. We are all different and everyone's T is different and as you say there is no hard and fast rules with T.
Thankyou for your post lisa88. Xx

 

Hi patwalsh,

No, I haven't tried any therapies. The best therapy for me was reading as much reputable information about tinnitus as possible, getting reliable answers to my questions from Drs experienced in tinnitus and just getting on with my life. I did however make the decision early on that if my T didn't resolve itself or I wasn't habituating how I would like at 10-12 months then I was going to try TRT. As it's turned out (so far) I don't think I will need to.

I'm sorry to hear you're having a bad day patwalsh but bad days are 'parr for the course' with T especially in the first few months and until things settle down. The bad days will become less and less as time goes on and eventually the good days will outnumber the bad ones. Hang in there, things will improve but you've just got to 'weather the storm' in the meantime. Xx

 

Thanks Gill, I will have to learn to be patient for once !

 

Overall I'am feeling better after 6 months. However I have GAD (Generalized anxiety disorder), which I was able to handle. But now my sleep is disturbed due to the Tinnitus; the GAD thing is hitting me again.

The last two weeks my sleep became better (thnx to myself, cycling and herbals). However since the weekend sleep is again a issue. Didn't get any sleep last night. I know that both habutating to Tinnitus and GAD has ups and downs. And overall I'am getting slowly back to normal; but the sleep thing is getting annoying.

Last week I was reading your story and thought "Ey, that's my story" but I didn't fixed sleep.. Do you have any tips and advise on this?

 

Hi MatthijsDj,

Unfortunately I don't have any tips re: sleeping. I'm very lucky, in that, even when my T was at it's worst I've always slept well. I do now sleep with nature sounds in the background but I'm sure you'll be doing that already.
I know there is a section on the British Tinnitus Association website all about sleep - it's entitled "Sleep Hygeine". It might be worth you checking it out.
Sorry I can't be of more help honey. Xx

 

Nog problem. I Guess that my sleep issues are more related to stress and gad

 

Thanks for sharing your story and being so positive. When I go online I truly get freaked out! I saw your statistics and wondering do you know if this is only for people who got T due to ear wax issues or is this just in general?

Thanks again for some positive notes as all we read is usually grim and scary!

 

Just a bit more than 7 months in and I think you nailed it.

 

I for one had T related to noise trauma. 6 months to the day I had a significant drop in T volume. Then, Habituation seemed to begin coming on. I like to point out that I did not have a gradual T volume reduction. For 6 months was quite steady and loud. I learned to cope pretty well. Then, the volume drop. I felt I got my life back. So, keep the faith that yours will drop at some point before too long as well

 

did you do any sound therapy or home pink noise? or was it just time that fixed you?

 

Hi Parissa, I believe the stats are for T in general no matter what the cause. So hang on in there, I know how horrible it can be at times but do what you can to get through until things settle down and start to improve.
Stop surfing the net. Stick to this site, it has all the information you will ever need ! But when you have the answers to your queries get off the site and get on with your life - don't spend too much time on line regarding your T. All this does is focus your mind on tinnitus, what you need to do is quite the opposite !! Xx