To You — New Tinnitus Sufferer

I've been meaning to write this letter for you for the last few months. I know you're scared. I know you're having sleepless nights and long days that seem never ending. I know you've cried and begged for silence. I know you've been browsing every article and forum online for a cure to this new battle you're fighting. I know about the weight loss, anxiety and constant feeling of frustration and hopelessness. I see you. And I want you to know, you're NOT ALONE. I also want you to know you will be okay.

Let me tell you about me.. I have had tinnitus about 7 months. I developed it just before Halloween during my third pregnancy. Mine sounds like a high pitched electrical static. Lucky me, I also seem to have extreme sensitivity to sounds (even my own voice hurts my ears sometimes). I remember the exact moment it started and feeling mildly annoyed but sure it would go away once I slept. The next day, it was still there and the panic started. I started googling 'ears ringing' and realized it had name. Tinnitus. I immediately made appointments with doctors and had hearing tests done. I cried. I stopped eating. The only time I had relief was when I was asleep so I longed for bedtime. I felt alone, isolated. At some points, on my lowest low day I didn't care what happened to me because I was so miserable. I lost weight because the doctors told me to avoid sodium and sugar. I ate nothing. No one could possibly understand what I was going through. I found this forum and started reading . All day, all the time looking for support.

After several doctor's appointments I realized there was nothing that could be done and I fell into a depression. I couldn't take steroids or medication to calm my nerves since I was pregnant. I couldn't do anything but try to overcome this. The dr's told me maybe it would go away when I delivered my baby. Maybe it would stay- forever. So my battle began.

It has been a LONG 7 months of hoping the tinnitus would go. Just trying to make it another day. I delivered my baby in January and maintained hope that it would go away. It's been 4 months since delivery and I still hear my tinnitus everyday. But, what I want to tell you is that, although I still have tinnitus- I am okay.

I never thought I would say that but I am. I am okay. I hear my tinnitus throughout the day about 50-75% of the time but it does not cause my the constant anxiety that you're feeling now. It's just there. An annoyance. I guess you could say I have habituated somewhat to it because when I am preoccupied I don't notice it but as soon as I listen for it its back . I still have good and bad days. I even have a mix of good and bad some days-- but mostly, I'm okay.

What has helped me overcome this?

1. Support. Support from those in this page who have been through it and understand the fear. I found a few friends on here who I'm hoping are lifetime friends who are there to pick me up when I'm having an extremely rough day.

2. Mindful based mediation practice to reduce stress and anxiety.

3. Acceptance. Yeah, I know. It sucks so how can you accept it ? Well, you just do. Accept that it may go away and it may not go away.

4. Distraction. Distraction is key. On particularly bad days, go outside and busy your mind! My tinnitus doesn't respond well to masking or background sounds and I tend to do better when my surrounding atmosphere is quieter but I found that keeping my mind busy helped me a lot.

5. Stop googling, stop searching this web forums 24/7. Just STOP. Look, I get it. This group of people understands you! They help you and support you. I relied on them heavily for about 5 months. I browsed online all day, but some of the posts are scary and can lead to even more anxiety . Stick to the success stories and try not to spend all day on this website. The more you spend thinking about your tinnitus the harder it is to habituate .

6. Time. As I've been told, habituation is not linear . It is one step forward and two steps back. I have had so many set backs where I feel like I'm starting all over at the beginning (which is why I've waited so long to write this letter to you). I'll be doing really really good and then the next day have a really awful day and have to struggle to make it through. So is the life of tinnitus. Time is your biggest alley in this.

7. Control your anxiety. Whether with medication or meditation. Excersise. Whatever. Control it. Tinnitus responds directly to stress/anxiety. The quicker you can control this the better you will feel.

8. Sleep. Try to get as much sleep as you can.

9. Control. I still struggle with this one, but the sooner you stop letting your tinnitus control your life the faster you will habituate to it. I was told this by a tinnitus specialist. Stop giving your tinnitus priority in your life and it slowly will stop becoming one. Yeah, it's hard but it is possible.


Remember. You WILL be okay. Here I am, a busy working mother to three young girls with tinnitus and you know what? I am okay. I wasn't though. But I am now. Does it suck? Yeah it sure does. But I am okay. I want to see my daughters grow up! I want to live! Tinnitus will NOT control my life anymore. I still am hoping my tinnitus goes away, but have accepted that it probably won't. And I'm okay. Hang in there. You will be okay too.

 

@Natalie Roberts .Hi. A very comforting letter you have written here on this forum . I'm sure it will bring comfort and calm to many who read it. Also I'm very pleased to here that you are a lot better and that you are coping better with yout tinnitus.

 

@Natalie Roberts thank you for sharing your experience , i am too 24 weeks pregnant and T started to effect me badly as i just got out of a very bad cold - the doctor said it could be related to that and it would go away when i am better- well it did not and since i am lacking night or even day sleep from 15 days i started to have panic attacks even when i try to calm my self down , i joint the forum yesterday as as you mentioned i am googling possible cures or remedies i can take on to make my T go away, you are brave to have gone through it and i hope i can do the same.

 

I've read from several women who have developed tinnitus during pregnancy. For some of them it went away after delivery and for others (like myself) it has yet to go. If you have a very bad cold that chances are high I think your tinnitus should go away when you recover. For me, they think mine was caused by my hearing loss (I didn't know I had hearing loss until my audiogram was done after my tinnitus started). If it is due to my hearing loss it will never go away and all I can do is hope for habituation. I was about 26 weeks pregnant when I developed mine and suffered from extreme anxiety both before and after developing tinnitus. It's awful, I understand. But have hope, it does get better. Honestly I think my tinnitus is actually worse now then when it started overall but it affects me less. It's all about your reaction to it. Only read the success stories! There are a lot of posts on this forum that are negative and scary but try to stick to the ones that show you there is life after tinnitus!

 

Thanks Richard I was so hoping my tinnitus would go away but since it's not I guess I'm just making the best of it. I still have my bad days mixed in there but still, I'm doing alright. I just want to help others now since I know how hard it can be.

 

@Natalie Roberts . You will habituate to it . I never thought that I would . It's kind of weird because my tinnitus has been a constant nightmare for me for the past three years and one day I woke up and it didn't bother me any more. It's as if my brain has excepted it. The tinnitus is still there but it just doesn't bother me. You will get there Natalie I'm sure of that just give it time. Wish you and your family the very best.

 

For me it was the best text I have read in the "success stories" section.
Anyway, I found it closest to what I think and feel. Congratulations, Natalie, for writing, IMO, the most realistic success story.

Yup, Natalie, same here.

Your advices are spot on, too.

 

@Natalie Roberts great story and advice. I'm at 9 months and can totally relate to your story. I have two young daughters which made me stress even more in the beginning because I didn't know if I'd be able to take care of them. But like you said and others have, I'm getting used to it. I hear it pretty much all the time but it doesn't bother me as much as it used to. It's not ideal but what can we do right? Fretting over it only makes it worse. Yours is the second success story I've read recently that talks about control. That's a huge thing as most of this time I've felt like I'm not in control and that may be the worst part. So these last couple days I keep saying to myself "I'm in control. Sure T you're here but you won't control me or take away from my enjoyment of my girls and my life. Like so many others I may get to the point where I don't even hear you but if I do that's ok."

Ok I've rambled enough. Excellent success story--even if like mine it's written with still a bit of doubt it's ok--we'll get there.

All my best.

 

I believe I am definitely on the right track to habituate because I don't hear it all the time . I'll forget I have it then all of a sudden my brain focuses on it and it's back. But either way, I'm on the path.

 

Thank you Dana. Your support and kind words have always meant a lot to me! I'm glad it was able to resonate to you a little bit. We're all in his fight together!

 

Control is a huge thing! For a long time I let tinnitus control what I ate, what I drank, my activities, what medication I take, ETC. after I had my daughter I kind of stopped letting it have control and realized there Was more important things to focus on. Since then I have made huge bounds and leaps in my recovery! I still have bad days where panic threatens to overcome me and I still hear it usually most of the time but I am doing so much better then I was! I believe we will continue improving as time goes on!

 

So true. I never thought I could amass in me so much strength. No matter how hard it gets, it seems that I find somehow the resources in me needed to overcome.

Together we are in this challenge, indeed, having to live our only life with T, which only us know what that means (with the hope of a miraculous cure one day, of course), even trying to be happy again while having T , exchanging advices, encouraging one another, to be able to get to the finish line, when we will get old, being proud of ourselves when looking back at our lives, cause we did a good job.

 

Curious did u have H too @Natalie Roberts ?

 

I more question, did u have hearing loss?

 

My audigram revealed mild hearing loss in the high frequencies , yes. However, I was unaware I had any hearing loss as it is not severe enough to actually cause me to struggle to hear or require hearing aids. I also have no idea why I developed hearing loss at 31. No loud noises/concerts..

 

I honestly believe I have a mild form of hyperacusis as well although my audigram did not show any sensitive to high frequencies. My ears are super sensitive to sound and even my own voice irritates my ears sometimes. Like nails on a chalkboard. It comes and goes so when it's really bad I try not to talk. I also do not enjoy masking my tinnitus and prefer quiet environments. My t is also reactive and worsens to certain sounds like The tv especially.

 

This is so true as well, the same for me. If I'm occupied with a task that requires a lot of brain power or busy with the kids on the weekend I'll almost completely forget about it. Happened on Sunday I was putting my little one to bed and was like where is it? Haven't thought about it in hours. I actually had to make an effort to listen for it. Then the week starts and I have a long commute and it's quiet at work and my brain zones in on it because it's bored. I've gone back to masking at work because there's no sense in sitting here listening to it and stressing all day.

I know I'm habituating too but sometimes my brain doesn't want to hear it and wants to get all negative. My audiologist has T as well and has for 13 years. She's habituated and reminds me that I will be too (she's awesome about communicating via email). Eventually I (we) will get over the hump and our brains will get bored and say to hell with it. It's not important.

Also like you I have a high pitch loss. My hearing at speech level is completely normal. No real explanation for it either other than maybe listening to my music at the gym too loud or from going to the occasional concert.

We're on the path and we know it. Just have to keep our brains pointed in the right direction. (Which of course is the hardest part )

 

Natalie,

Great post, you know all the things you mentioned every bit of detail (except pregnancy and the Hypercusis) are all the things I went through and I find that all those things are common with people that develop T. I went to my ob/gyn last week and was telling her about my T abd she told me about a patient that developed T during pregnancy and it never has gone away. Thank you for sharing this post , it was dead on to my experience and recovery .. Glad you are doing better

 

Hello Natalie,

Wow!! What a fabulous story, thank you so much for posting this. Our situation is very similar, I have 3 daughters too and am terrified how tinnitus has snatched my hopes for my future. I've had t for 6 months and had eventually habituated but ear wax removal has increased the noise and given me sensitivity and pain in my ears too. Your read was a real boost to me as I'm not coping too well just now, only bedtime offers respite but we don't feel the benefit because we are asleep. I'm hoping I can get some normality to my once much loved life again.

THANK YOU for sharing your story, it's really helped me! Good luck to you on your journey with it ❤️ Xxx

 

Tinnitus can control your life if you let it.. I have bad days still too. Just yesterday I had a really loud fleeting T episode which lasted several hours including a muted feeling, very loud ringing and sensitivity to sounds. It CAN be awful. But, I try to reassure myself that it usually passes with time (sleep) and returns back to a normal, coping level. I worry about my future occasionally too, but right now we can't do anything about it so I try not to think of it too much..

It is what it is and all we can do is take it one day at a time and try to protect our hearing and ears. It can be very hard on bad T days with children making so much noise etc.. I find they do help me distract my brain though and allow me to focus on them and tune out my T. I've had my tinnitus for about 8 months I guess and it has gotten a LOT easier to handle and deal with. Don't give up. Each day we get a little bit stronger.

 

Hi Natalie my name is Kim. I have also developed t during my pregnancy, I am only 13 weeks pregnant. I also have 2 other kids and they are the only reason I can make it through these tough days because I have surely thought of giving up. Thanks for the encouragement I can use any positivity right now

 

Do they know what caused your tinnitus? I have good and bad days. Currently I'm in the middle of a rough patch (going on about a week) but I'm hanging in there .

 

No no doctor knows because of the pregnancy it complicated treatment. I did have an earwax impaction that was removed that kind of started the downhill spiral.

 

How did you get through the anxiety and depression that t brings while being pregnant

 

I'll message you

 

Amazing story, @Natalie Roberts. I remember your first posts here, I felt so badly for you. It's stressful enough being pregnant. Your experience is very similar to mine (although I never have had a child) -- you put it so simply but so eloquently. I am sure many will draw strength from your words.

You express my feelings exactly: Does life really suck sometimes, when you have tinnitus? Yep. But like you, I want to LIVE and experience all the goodness and joy life still offers me. Congratulations on your lovely new baby and making your way back to the light. Shine on.

 

Hello
First I do thank you for your post and will take your advice.
I am new to this tinnitus it started after being exposed to a fire alarm & AED alarm within two days at work. I also have 32% hearing loss in the left ear. I can't hear anything but the noise ringing, static, tones and at times tin like sound of clapping. It definitely gets worse around noise. I feel like I am going to scream make it stop. I am on prednisone I get very dizzy and nauseous when I put my head back. I cannot believe the medical world cannot find a cure to make the noise stop. But I guess that should not surprise me I am a nurse!! LOL

 

Thanks for your kind words ... I wrote this post after many good weeks but unfortunately I'm having a bad week this week. not sure what has caused the 'spike' (if you will call it that) but I am feeling a little down! I'm still hanging in there and have hopes my t will return to baseline soon. Thanks about your kind words about my baby! She's now 6 months and my 3 kids are the reason I get up everyday even though sometime I don't want to!

 

I'm sorry to hear you're having such a hard time. I have my periods of rough patches too (currently going through a spike of sorts) . I have a hard time hearing above my T in certain situations and I only have mild hearing loss from an unkown cause.. I am hoping science comes up with a treatment plan which is better then what's out there now!

 

Yea being a mommy gives you so much strength even when you think u can't make it you know you have precious little ones that need you to survive in order for them to survive