Still Struggling With Tinnitus After Five Months. Is This Normal?

[Gabrielle]

Hello dear people all over the world,

I'm from Holland (Netherlands), born in Utrecht (nearby Amsterdam). I am a nice and friendly woman, age 49. Glad I've found this forum. I have two questions for you... but first read my tinnitus-(his)story:

Five months ago on May 3th, suddenly there was a sssshhh in my right ear and a high pitched sound. As anyone else I was very afraid, anxiously and in panic when the noise did not stop. The panic is not so bad anymore... but... I still feel like a newbie... I can not life with T yet... it's so hard for me....

Five months now. And every week it's like this:
Four days in a row very loud.
Two or three days a week a bit less loud.
One day a week (or half a day or one evenening.... complete silence.... it's quiet!

There is no pattern in it (I kept a journal). The sounds are there, every morning.
I am 'happy' when I may 'hear' silence once a week for lot's of hours. And thankfull. I know most people with T has it for 24/7.

In the next weeks since the onset, I've had several visits by an ENT and research. My hearing is good for someone my age, he said. My Ttnnitus is one without a cause. He said maybe it may have to do with ears syringing in March (two months before my T started). The syringing of my ear didn't go well. My ear canal is very narrow and the earwax was very very hard to move and it took almost half an hour! According to the ENT is it possible that my hair cells are damaged.

Well, I've spend a long time thinking of the cause, but... it has no use.... The cause doesn't really matter so much... I'm afraid it will never stops, my ENT says "you can better give up hope", so thinking about the cause is not usefull. But also he said "It's strange you have sometimes a quiet day... so maybe... your T will go away in the future. But when it goes, it will, so better is giving up hope and try to life your life".

He suggested to give me a MRI-scan but I will not do that. I'm afraid the T will gets louder. My ENT said that a MRI-scan will not make me better. "We only can see the place in the brain where the tinnitus is".

Now I've 2 questions for you all... Because I'm still so very sad about it, I loved silence so much. I'm afraid I never can live with it. I lost my pleasure of life.
But it's already five months now, and many people with T are a bit habituated after 5 months. But I am not... so I feel a bit like a looser.... I also feel still like a newbie. I still regularly crying and if it is so loud, sometimes four days and nights in a row, then I'm so tired and exhausted and sad. It is terrible.
The first question is: Is there still hope for me that I will ever be happy again like before T?
And... a second question: Are there more people out there who has one quiet day a week?

I was a very lucky woman, with great parents who are still living, great sisters (3), a very beloved partner (real soulmate), a very nice job (owner fashionshop), very nice house. Loved my life. But now... I am so sad...
I red a lot of succes stories and they gave me hope the first months.... but now afther five months I am realizing that it will never go away and so I am deep sad. Please help me a little if you can....

With love from Utrecht,
Gabrielle

 

[2131e]

Hi Gabrielle,

I'm sorry you are struggling so much with your T. I've had it for a couple of months and over the past week I stopped caring - but the only reason it happened is because I started getting intense jaw pain, possibly from something called TMJ. It was horrible pain and somehow, whilst focused on that, I just didn't care any more about the T. At the moment I got some good painkillers for the TMJ until I find out how to treat it, but I've noticed that since then, even when my jaw isn't hurting and I can hear my T doing its thing, I've just been thinking 'huh, that's still there.' Somehow I have habituated a little to it.

Also I'd also suggest going to an ENT who does TRT (tinnitus retraining therapy). Not even because I am an advocate/believer in it. But because I do believe that an ENT who offers that therapy is going to be someone who will care about how upset you are by your T and will be compassionate and responsive in treating it. I saw a TRT ENT and when I said that having T was 'killing me' and I didn't know how to go on, he said 'Ok. Then we need to fix this. Here's what we're going to do.' It wasn't what he suggested afterwards so much. It was that he cared. Also, he did tell me 70% of people go into his office saying the level to which tinnitus affcts their life is 'catastrophic' and that after TRT 70% of them rate its bothersomeness as 'low.' So that is hopeful. (Even though TNT doesn't stop your perception of the sound.)

I hope that you feel better soon.

e

 

[Visitor1538]

The fact that you have one day with complete silence is very "odd". And is a reason in itself to have this checked thoroughly. I've had this for 5 years and I can't remember what total silence even is anymore. I just remember being able to read in dead silence for hours, or listening to the clock on the wall, but I don't remember the actual feeling.

Mine has stayed the same for all this time, but it gets much louder if I stress or struggle. But the fact that yours is not consistent and with a whole day that you are free from it should be checked further upon in my opinion.

I've had several MRI-scans. It can check if you have trouble with middle ear fluids and what not. I didn't take any damage from using the MRI, but don't take my word on it. Ask someone if it can damage something.

Like the post above me said, TRT might be the answer when it can't be fixed. I'm thinking about applying for TRT myself now.

And about "how long until coping?" That isn't a fixed time frame. 5 months might be enough or not nearly enough. Some people have extremely high T and actually manage to cope, others with mild T can't cope at all. The thing often is that longer you have it, you just get more accustomed to it staying in the background. Since you are stuck with it, your brain starts to ignore it more. And after awhile you will start to notice that you aren't thinking about it as often as you used to. The analogy is that you don't mind the sounds around you as long as it doesn't affect you attention away. You don't usually mind the dishwasher, because you know that the dishwasher just makes that sound. But when you're listening to your T you think that it is something dangerous and you want it away.

You need to start thinking that that is just the sound my head makes, and stop worrying about it(easier said than done).

BUT If you are depressed and hate your T everyday and start obsessing about it, then you will not cope at all, and time will not help you. Been there myself, and it's not pleasant. But it will get better, much better : )

 

[Sjoerd]

Gabrielle,

Welkom. Als je nederland bekijkt op wereld schaal dan is iedere stad in de buurt van Amsterdam .

Back to English.Is is absolutely normal to not feel great after only 5 months. Compare the first day with with today, is that a big difference? It will keep on getting better/easier. You need to accept that it takes time. Do not drag yourself down just because you think you need a long time to get used to it. You will get obsessed and that will just slow you down.

 

[slipware]

I'm sorry you are still struggling, I've had my T for 2 years now, and to be truthful, I'm still struggling, though not as much. Mine is caused by a mini stroke, blood blot in the cochlear. I do have some 'quieter' days, though never, ever quiet. It has varying degrees of tone and volume, mostly loud! I wear hearing aids only on quieter days as my hearing is down and the T seems louder with aids on louder days. I think, as many people say, stress, worry, anxiety (mostly in my case about the T) can and does make it worse

Don't give up, just try and ignore it, it may not go away, but it need not bother you so much later. I also have nerve damage on my face, so have that to cope with too. Life sometimes sucks, but generally, folk can be, and are, much worse than I am. Doesn't stop me feeling sorry for myself sometimes though.

Good luck.

 

[Della]

Hello @Gabrielle, and welcome to the club no one wants to join! What a beautiful country you live in ... I spent some time in Bruges years ago, and it was one of my best experiences. I agree with what our friends above are saying. Don't feel any pressure to habituate in a certain length of time ... it's different for everyone. I'm starting my 6th month with severe T, and while I don't break down as much as I did in the beginning, I still grieve for the loss of quiet time. Like you, it was one of my big pleasures in life. I'm one of those who has T 24/7, plus I'm a musician and dancer so it has completely changed my life. So far I have refused to let it *ruin* my life, but it sure has changed it. The trick with any chronic condition is to come to a point where you can accept a new version of what's "normal" for you. It's not easy, but it IS possible, and you can do it. You CAN be happy again. Not happy in the same way, but happy and creative and productive, and you can live a rich full life!
With love from Texas,
Della

 

[Gabrielle]

I like to thank you all above for your responses. Today... there was a silence day again. Every day I wake up, the sounds are there. But once a week it's not so loud in the morning... and after a while... there is complete silence. I like to think that my haircells in my ear are recovering... and will get better. But I read once that damaged hair cells cannot be recover. Question is... why that silence days once a week? There's no pattern... the silence day can be on monday, but also wednessday or sunday... I am lucky to have this days.... The only bad thing about it, is that on those days my hope of recovering grows.... but the other day it's back and loud again... So I am soooo tired of living between hope and afraidness. I know, as you all above are saying... I will be Lucky again one day. Also with T, i just must accept it and like you Della said, your life will change but you will get an other kind of life, which can also be fine. The difficulty for me is that accepting is onpossible as long as I keep hope. Hope that T will stop. It's stopping ones a week, sometimes two days, really complete silence....But I know.. I must not thinking too much when the sound is there... just live my life, but when it's so loud... I really cannot ignore it, it drives me crazy.... so... still struggling. Hope one day I can write a successtorie on TT-website...

With love to you all, from Utrecht,
Gabrielle X

 

[kmohoruk]

The first question is: Is there still hope for me that I will ever be happy again like before T?
And... a second question: Are there more people out there who has one quiet day a week?

Hello Gabrielle!

I am sorry to hear that you're having such a rough time with your T. I wanted to just quickly answer your questions and share any advice that I can pass along from my own experience.

1.) Absolutely! I remember when I first realized that hissing in your ears is not normal (Yes, I found out once I talked with a friend about it, and was shocked to hear that he didn't hear sounds in his ears as well). I had just finished school and grew quiet upset and depressed. However, I had to move for a job (not far away, but enough to have some good space between me and my friends and family) and tried continuing on with my life. Soon, once I got busy with my life in my new surroundings, I soon forgot about my T and that continued all the wait up until this summer when I suffered a spike in it (thats another story).

The point that I want to drive home is during those 6 years I traveled, went to concerts, saw Bruce Springsteen live, went back to school, had wonderful relationships, worked at Apple and had lots AND LOTS of fun, and was pretty darn happy! I would still HEAR my T, often if I zoned out or when I had my headphones on and had no music was playing (and of course during bed time). But I just never really thought much about it.

It is possible! But it takes some work. But I would suggest trying to stay busy, stay connected with friends and family and maybe even try picking up a new hobby to get your mind off everything (Mine has been running, and I'm still at the point where its probably funny watching me try )

2.) I do not have a quiet day, even before I had this latest increase. Which is interesting in itself because I think for me, my quiet day would just be me not noticing it. Which to be honest, was at a point where I was living with one of my girl friends for a year, and she actually didn't find out that I had T until after we broke up!

I would how ever suggest that if you are still having issues with your T, then you should maybe look into something like TRT as @2131e suggested. I am currently trying to go that route as well and am looking at trying to gain some new tools to deal with this new spike.

The last thing that I would suggest, is just remember that your are going to have some "healing days" as I put it. While I am as struggling a bit as well right now, I am doing a lot better then I was 3 months ago. There are times when I sometimes get sad, or the hissing in both my ears gets to me. I just try and say to myself "well looks like today is going to be a healing day" and I just try and focus on how tomorrow will be a better day

I hope this helps, and welcome to the board.

Cheers,

Kris

 

[Gabrielle]

Dear Kris, thank you very much for your advice. I think you are very right by saying to get busy. When I am busy there will be a bit distraction of the loudness of T. Also I try to do what you wrote, about when I have a bad and sad day, focus on tommorrow and keeping faith that will be a better day. Thank you, thank you thank you.... Hope some day I don't see T as a big issue anymore and that I can life with it. Even if it's loud or not...

Best regards,
Gabrielle

 

[awbw8]

Hey there @Gabrielle, I think everyone here is right in their assessments for what that is worth. Don't put pressure on yourself to habituate in any specific period of time. It will come. I have had my T for a year and a half and am still continuing to habituate. I lead a pretty normal life now, but I keep getting better, which is nice and always a little surprising.

After reading your story, I would keep in mind two things:

1. Be extra kind to yourself and forgiving, because while those "silence days" may seem like a blessing, I bet they are making it harder on you, as you kind of pointed out. Having to move between hope of it going away and not, between silence and tinnitus, must be very difficult. I think in a way, while we all long for silence, if someone said I could have one day of it now and then my tinnitus would come back for good, I would say no. If not TRT, CBT might be able to help you a lot as well. Learning tools to cope with the unique process of adjusting to silence and tinnitus that you have would probably help. A psychiatrist and a CBT psychologist were life-savers for me in the beginning, truly. I was so bad off, but those tools help (mindfulness and in the beginning, medication). It might not feel like it at first, but the lessons of mindfulness sink it in ways you wont see for a while and later you'll be like "ah hah!" Having someone compassionate to talk to helps, too.

2. Success stories can still give you hope! Some success stories are about tinnitus going away, but most are about suffering going away, that's what mine was about and I was not sure 1.5 years ago if I was going to be able to ever write one, but I did! Your day will come I can tell just from the way you write that you have it in you, you seem very aware, thoughtful and compassionate. I think that awareness helps and that you are where you even with the silence from time to time, says mountains. I don't know if I would have done that well with your challenges, so you will be fine, I can feel it For me, tinnitus became a part of my silence. I sleep in a silent room now, and read for hours. It's just something that is there, it might take you a little more time since yours fluctuates, but you absolutely can get there.

 

[Gabrielle]

Thank you all and thanks to awbw8. You are right about the 'silence days'... it makes habituate a bit more difficult because the last five month's (the onset of T), I was full of hope that the T might go away when there was silence.

But now I am in a new fase... I've giving up hope. It sounds sad and ofcourse... I cried a lot. But also it makes me more 'peacefull' and give me more rest. Living without hope is better for me because now I will not be dissapointed when I have a silence day and the next day the T is ringing again.

Awbw8 you are so nice by saying that you feel it, that I will be fine. Your words kept me kind of calm. It's crazy... since two days or so I feel kind of better, in a way of I will become to accept it. Not habituate yet, but let the sounds in my head go, and not being afraid of it, and also not angry, or thinking STOP, I want silence back. Now I just let it go, well... I'm trying. And I think of all the other people in the world who has sounds in there heads too. I'm feeling not alone.

I can't sleep yet without medicins and also I use white noise on the laptop next to my bed. But maybe like you awbw8... there will come a time that i will sleep in a silent room and also can read in a silence room.

Thanks!!!!!!!!!!!

 

[Della]

Good for you, @Gabrielle! You are already making progress! It must sound strange to people without these kinds of problems that it's good to give up hope, but that's how it is for us. I remember so well when I developed fibromyalgia 25 years ago, the pain was terrible, but I would have some days when the pain was less and I would think it was going away. Then it would come crashing back and I would be devastated. It was only when I learned not to get excited when it got better, and not to get depressed when it got worse, that I was finally able to get on a path toward wellness. You are already on that path.
All best wishes to you,
Della

 

[TomT]

Best way is to accept it and do not look for improvements. If you re access your Tinnitus everyday, you are constantly reminding yourself of the problem. This will bring on stress, anxiety, depression, anger and disappointment. Acceptance is hard but it's the only way. We all know there are no cure for it. I was very angry at the doctor who said that there's nothing he can do about it and that I will have to learn to live with it. I was in a big denial. I was on a quest to find answers and a cure. Sadly, there isnt one YET, but you can still live an absolutely normal happy life with it.

 

[astronomer]

hi gabrielle,
it started for me from april 12 2013, its there and sometimes its there more,i love life and to make a long story short " be good to yourself " and those around you,i gave up on being down and choose to be positive ! its something you have to work on

 

[awbw8]

You are so welcome @Gabrielle! Your words warmed my heart and you will definitely get there. It takes time. I didn't sleep without sounds in my room for well over a year, but that doesn't have to be the goal. I read, watched TV, slept etc. with little cricket sounds for ages and if I'd had to do that for the rest of my life, it wouldn't have been bad. Not having to was just an unexpected advance.

All will be well

 

[Larry OT]

Dear Gabrielle,
I am new here and had bad T for 6 months. I also have some quiet days that rebound into very loud days and cycle. I find sleep patterns have a part. If I wake without T even after just 4 hours sleep I have to stay awake to avoid the T start up should I fall back asleep.
I know how you feel and those quiet times can be a false hope of future peace, but make the best of them and keep connecting with friends and family.
The journey is yours to write and I look forward to your progress.
Stay strong and breathe deep.
Love is everywhere.

 

[Gabrielle]

What a coinsedence! I did reply a minut ago on your post. And now i see you've been posting also on mine!

Thanks Larry, we both have to stay strong. Life has changed because of T.
I loved silence so much... now it's gone....

Know what you mean... sometimes i like to stay awake when the T is soft or silence. Knowing that when i go to sleep... the sounds are back by awakening....

Best regards,
Gabrielle

 

[Larry OT]

I hear you Gabrielle. I treasure the quiet days as well. Even though I am a musician and engineer I find listening to the leaves beneath my feet and the tiniest noises in the woods on my hikes with Max (my avatar) so embracing and more enjoyable than music. It's amazing what we under appreciate in our past "normal" lives.

I'm learning to lose my fear of sleep in the wake of what may be a troubling next day. Then I look for peace in my heart, love in my sons caring eyes and faith wherever I find kindness.
Silence is overrated in comparison.

We are so much more than that sound that hurts us.
Sleep well, stay strong.
Best,
Larry

 

[Clive Cottrell]

Hi Gabrielle, I guess i am one of the lucky ones as i too have days that are quiet, sometimes I will on the odd occasion have two days in a row. It's like getting your life back! Should i be enjoying a quiet time and doze off it will trigger my T and then I suffer maybe for three or more days. On the other hand I have been enduring T and dozed off and low its stopped it, How wacky is that. So sleep is a factor. It has been like this for four and a half years. I do not now expect to be rid of this affliction any time Soon! My sympathies to those whe are in the 24/7 Catogary. Will they ever find a cure? It's taking long enough.

 

[Gabrielle]

Thanks @Clive Cottrell

Nice to read that you also have quiet days and you are four and a half year in to T!
That gives me hope, because maybe I will for ever have sometimes quiet days!
It's exactly your words: it's like getting your life back!

I am 7,5 month's in to T now, and still have one, sometimes two quiet days a week.
For 3 times I had also like you, two days silence in a row (except when i woke up, everyday starts with ringing, but on quiet days it's turns low in a few minutes and then turns off). It's a crazy thing. I hate T, but I am glad with quiet days, feeling normal, as if T never happend.

Yeah, I know people with 24/7... they are more suffering then we do...
But still it's not easy. But I slowly going to 'accept' it, in a way that I want my life back, and not want T to control my life.

Gabriëlle

 

[Albert Savage]

Hello Gabrielle,

I'm relatively new here also, I have suffered from Tinnitus since the spring of 1972. My hearing was damaged in a training exercise when I was in the Army and stationed in West Berlin. For most of the time my T was only an irritant, with occasional days where it could be much more irritating. About ten years ago I started wearing hearing aids and it reduced the severity and the frequency of my episodes of T significantly.

I don't know if you have hearing loss or not. And I don't know if hearing aids would help with your T. I can only let you know what my experiences have been like.

While it may not always feel like it, you will survive this. This is a great group and you will find lots of support on this board.

In spite of the T, have a Merry Christmas and a Happy New Year.

Albert

 

[billie48]

Hi Gabrielle, the suffering of T is mostly from the mental side. We pay too much emotional price for insisting on silence. I just came back from a long trip to visit Hong Kong. On the long flight across the Pacific, my T could be heard above the plane noise inside in pitch but the sheer volume and intensity of roaring jet engine is everywhere. I imagine that anybody with T with that intensity and volume of the jet engine must be suffering much. But there go all the young flight attendants fully engaged in serving the passengers without much attention to this noise. They are exposed to all the noises all throughout their career for wages and they accept this as their reality.

And then in HK, I saw many people living right above those busy streets with traffic noises that can drown out most people's T. The noises never die down much with buses running none-stop. Then I saw people running powerful drills repairing pavements. I had to cover my ears walking by but I saw the workers not even wearing ear protection. These people live a normal life amid unbearable noises according to someone like me living in Canada. I guess they just get used to the noisy environment and have accepted it as a reality in their life.

So to me I learn something from observing how these people cope with noises. It is of course not to play down T and our suffering. It is not a perfect analogy. But I have been using this imperfect analogy to help myself cope with the ringing. Perhaps during the loud T days think of it like we are working a long 12-16 hours shift like a flight attendant on a trans-Pacific flight (like from Toronto to Sidney or Hong Kong). It was a silly thought of mine but it has helped me accept the loud T ringing a little easier.

Since a lot of our suffering from T is mental, so I play this little mental game with my brain to moderate its rejection of the T ringing. I just imagine I have a flight attendant or a driller job on a long shift on the spiky days. Treat the quiet days as a bonus, time you get a break from these long shifts of noisy jobs. People have been working like this without negative reactions for wages for life, perhaps I thought I can do like wise with my T, to accept it and the reality of it so I can get my life back.

Again my post is not to compare T to noisy jobs or to play down T suffering, but to hopefully lighten our suffering to our loud T by accepting its reality using a new angle to look at it. My humble 2 cents.