Sharing My Story to Give Some Hope to Others

Hi there,

Just wanted to introduce myself and share my story in case it helps anyone else. In the early days of dealing with tinnitus, though I never posted anything, I read through these boards like crazy trying to find someone similar to me and found a lot of support and hope in many things that I read. So I hope this helps someone to! Let me start by saying what so many before have said: IT GETS BETTER!!

I'm a 30 something mom in the US. I developed tinnitus just a few short months ago, after attending a loud concert. In the early days, I hoped that it would wear off/go away... but after about a week, I knew in my heart that it was permanent. I went to an ENT to have it checked out, who told me to give it some time and told me to take lipoflavonoids. Great, thanks. She was really not a lot of help, though I realize now that many ENTs just simply aren't well versed in dealing with tinnitus patients. Anyway, in the following weeks, I fell fast and furiously into a hole like so many others have described--- anxiety, depression, constant obsessing about, not eating, and not sleeping. I woke up several nights on the verge of a panic attack. It was awful, and quite honestly in those darkest hours I couldn't imagine living the rest of my life with this awful sound. So I can completely relate to how so many people feel on here-- it truly is a terrible, vicious cycle of anxiety. Plus, I was filled with anger and regret about going to the concert, so that was hard to deal with too.

About three weeks in, I decided that I had to do something to make this better--- it was ruining my life. And this is where I think you really have to dig deep to take the bull by the horns and to get your life back. I decided I needed to be an advocate for myself and do whatever it took to get myself to a better place to deal with this. That included working with my GP to get on anti-anxiety medication and most importantly getting something to help with sleeping. I also did a bunch of digging and found an audiologist in my area who specializes in dealing with tinnitus patients. She even has a team, including a psychologist who works with you through the process. My first visit there alone did wonders to get me back on track-- just having someone who empathized, understood how I felt, and could explain the whole cycle of tinnitus (especially from a physical/emotional/limbic system) standpoint was immensely helpful. She presented the various options that I had for dealing with this, and together (with absolutely no pressure either way) we decided that Neuromonics was the best option for me. And honestly, I know that there is not a lot of positive feedback out there about this therapy--- I know because I searched a bunch before I decided to go for it -- but for ME, it has been a god-send. I am still early in the treatment, but it has been a great therapy for me (albeit very expensive of course) and I believe that again FOR ME it was the right solution. If you would like to talk to me more about it, feel free to message me.

In any case, I am about 4 months into dealing with T and I can honestly say I am doing a million times better than before. I mean, it still annoys the crap out of me when I hear it, but I am hearing it less and less and when I do, I don't panic, get upset or filled with anxiety like I was in the beginning. Now I just thing, well that's annoying, and then go along my way and live my life. I mean, you only get one life as far as we know, right? So I'm not going to let this stupid sound ruin mine.

So here are my tips to dealing with this in the early days and helping yourself to get better:

1) And I think this is one of the most important: Figure out a way to help you get the sleep you need!! Whether that is sleep aids, medication, relaxation techniques, whatever. For me, it was lorazepam for a month. But sleep is SO SO important, and once you are getting the proper amount of sleep, everything is a little better.

2) Get your anxiety in check. For me, it was a combination of medication and mindfulness (learned through therapy) to help work through the anxiety and not let it consume me. Work with your doctor to get on the right track for you (medicated or unmedicated).

2) Educate yourself on your options and advocate for yourself. Find someone in your area that can help you (ie. audiologist with tinnitus experience) I realize that I live in a major metropolitan area in the US, so this might be easier for me than some others, but really-- it makes a world of difference to find the right person to guide you through this awful journey.

3) Keep busy. This is so hard in the beginning, but it's so much a game of fake it til you make it. In the earliest days, I would try to hard to do my "normal" things and I was so full of anxiety that all I could do was be consumed by the sound. But gradually, day by day, I started noticing that I didn't hear it for a few minutes, then hours, and recently I went through a whole busy day and realized I hadn't thought about it once!! It just takes time.

4) Try to get away from catastrophic thinking. Like in the beginning, I kept saying.. my life will never ever be the same and I can't possibly live like this forever. It is true-- my life isn't the same, but that is not necessarily a bad thing. What I've found with dealing with T is that it really helped put some things in my life in perspective.. like how unimportant some things that I stressed out about so much were in the grand scheme of things, how life is a gift and you never know when things are going to change so live every moment for what it's worth. I am definitely a much more empathetic, sympathetic person than I ever was before.

5) Don't think you are alone in your suffering. You're not. There are so many others that are going through the same thing, and battle every day to get through it. And not only with T, but with a million of life's other challenges. In the first month of this, I had a very insightful conversation with a friend of mine who has MS (and whose mother died of MS). She is living her life to the fullest RIGHT NOW, healthy as she can be and happy as she can be. She said to me "I know I will eventually be debilitated and die from this, but what can I do? I can't dwell on that everyday. This is the one life I get and I'm going to live it, and not let a stupid disease take that away from me". That really helped me to put some perspective on my suffering and to move forward.

6) Keep hold of the notion that IT WILL GET BETTER. It does. It might take some hard work to get there, but it will. I promise

I realize that this is something that I am going to have to deal with for the rest of my life (likely) but I am truly in a place where I feel like I can deal with that, and have a perfectly normal life. I hope that this helps others who are suffering. Good luck to everyone!

 

There ya GO !!!! Well put, good for you.

 

@ShiningStar

Great post. Thank you reading this helps especially when I m struggling like mad to habituate. I hope more people read your post and take heart. As you've well put I hope to be able to deal with this too.

Thanks
Dhaval

 

Great post, great tips! So very thoughtfully presented. Clearly you put a lot of effort into it, and all newby T suffers here will benefit from such great information. Let me say thanks for them now!

 

Thank you Dhaval , good to read that.take care.

 

Great post, thank you so much, actually made me cry a little which is something I rarely do. I'm headed to the doc to day to figure what to do about my anxiety and lack of sleep, which is interested as before I read your post those were the two things I really feel like I need immediate help with in order to cope.

 

I swear, getting the sleep that you need and getting your anxiety under control are the first two things to manage to get on the road to getting better. You will be in a better place to deal more effectively. You can do it!! Honestly, when I first started on this journey, I NEVER EVER thought that I would feel like I do now, but it just takes time.

 

I agree that getting good sleep can help your tinnitus. When I use my CPAP for sleep apnea it seems my T is less the next day. Also, keeping your anxiety and stress levels low seems to help.

 

ShiningStar, I have wanted to tell you how moving and thoughtful your words were to me. I had an important visit with an out-of-town specialist last weekend and made sure I read them again the night before I saw him, to remind myself that no matter how the diagnosis turned out -- I would be ok.

I also have kept a print-out of your post, so I can go back to it on days when I am feeling low.
Blessings.

I will get better. Thanks, in part, to you.

 

I am so touched by this. I am so glad that it was helpful for you.

I know how scared, anxious and upset I felt when this all started-- it was like a living nightmare. And all I wanted was just a glimmer of hope that things would improve, because I really felt like they never would. At the time, all I wanted to hear was that it would go away because I felt like there was NO WAY that I could ever lead a normal life with T, and not having it was the only way I felt like life would be okay. But as time went on, and I fought to get better, I realized that it probably wouldn't go away, but that was okay! That I truly could live a happy life with this annoying condition. And I am! And I know you will too!!! Hang in there and keep moving forward. Feel free to message me if you ever need anything.

 

hope that someday I could get to the place where I can say the same but not there yet..

 

Thank you Shining star, appreciate that xoxo.

 

Thank you so much for sharing your story.

 

thanks for sharing..

 

@ShiningStar, thank you so much for sharing this. It's all wonderful advice and the kind of success story I feel is within all our power to achieve. I could see a lot of my own experience in reading yours and you just wrote it so well. The part that stuck out was "taking the bull by the horns", getting better is an active process in my opinion - there is so much we can do to be better, thank you SO much for saying that. Gives us all hope, I'm sure your post will be helpful and an inspiration to many!

 

Wow, thank you for writing my autobiography!! Your experience with T, especially in the early stages is identical to mine!! The first 3 months were SO bad!! Sleep deprivation, anxiety, panic, dread, hopelessness... But just as you said ShiningStar, it does get better! Take heart everyone who is in the early stages! I still am suffering from extreme chronic T (9-10), but after a rough year, I am finding more normalcy and joy in my life. Mainly due to many of the suggestions ShiningStar listed in this thread!! Take S.S's advice! Great tips!

 

What is or are Neuromonics?

 

Thank you for this encouragement

 

Your post was seriously so encouraging, thank you times a million♥