First Post, 5 Months In...

Hi everyone,
My name is Katie and I’m 21 years old. I’ve had tinnitus since November 28th, 2019. I’ve been reading this forum for a while but I’m finally deciding to post. The past 5 months have been very confusing and turbulent. I’m a known hypochondriac and tinnitus could possibly be the worst thing I could be faced with. It’s not that it’s actually too loud or too intrusive, I’m just scared of it and fearful of what’s to come (Will it get worse, will I habituate)

I’ve let go of the whole will it go away thing. I know I’ll be okay if I have this forever, but I’m unsure of how to get to the point where it doesn’t dictate my life. So I have a few questions ready and if anyone could help answer from there experience I would really appreciate it

1. How do I stop relapsing? The last few months have been filled with 1 good month, two bad weeks, 1 good months, 2 bad weeks and it’s basically been that pattern. Is this normal? It’s strange to me how sometimes I hear this sound and I just shrug it off and some days I hear it and it terrifies me and sends me into 2 weeks of anxiety.

2. How to stop obsessing over other sounds? I become afraid of all sounds around me sometimes and trick myself into thinking they’re my tinnitus. For example, my fan creates a low tone and sometimes when I’m in my room I become so uncomfortable with the sound because I think it’s coming from my head. Then I leave, and realize it wasn’t. How to I stop becoming so fearful of these everyday sounds and tricking myself into thinking they’re coming from my head?

3. How do I learn how to relax again? Before all of this, I loved nothing more than to lay in my bed and watch a show. But now I get so afraid to do it, psyche myself out, and barely pay attention to my show and focus on the tinnitus. How do I get out of the habit to prepare myself to hear my tinnitus?

My biggest fear is that I won’t enjoy alone time anymore and won’t enjoy to relax and unwind. Keeping busy helps so much, but it’s not practical. When I stay too busy, I feel as though I’m running from it. My tinnitus sounds like white noise and feels as though it’s coming from my neck and back of my head, kind of like a popcorn popping sensation. Again, I’ve had some really good periods in the last five months so I know that I will get to a point where this is not an issue in my life. But these are just some questions that I need a little help with.

Thanks everyone

 

lol sorry.

 

When you say relapsing, do you mean that the tinnitus sound goes down and then gets loud again?
Or do you mean that you lose your habituation?

 

I mean I lose my habituation and tolerance to the sounds I guess. It does fluctuate in volume but usually stays at a pretty calm rate.

 

It's really a tough situation. Unfortunately, I can only suggest that you try and do things to take you mind off of it.
When mine would bother me while trying to relax I would drink to excess and that is very unhealthy and not sustainable. Have hope knowing that there are many people working on a cure and that you are still young. Pushing through this and continuing to live your life despite this will inevitably build adversity.

Best of luck.

 

When you say would, do you mean that in the sense it doesn’t bother you anymore?

 

It used to, sometimes badly, then about 10 months in I went to South Korea and got a medical procedure that is not acknowledged to exist by the medical community and has not gone through the normal channels of animal testing and government sanctioned clinical trials and it greatly improved my hearing (I will post my audiograms soon) and my tinnitus started to disappear. Then I was exposed to another loud noise and my left ear is experiencing a little setback but I am confident that it will go back down.

 

What is the medical procedure?

 

Posture unbalance and not being relaxed - forward head bending or maybe using a cell phone with neck turned down to one side. The synovial fluid between your joints lubricates movement. When the pressure changes in this fluid or when tendons and ligaments move over bone as you move your joints can cause the popping sensation and white noise that you describe. Pressure changes where tensed neck or face tendons have involvement can cause mild tinnitus, but should go away with posture improvements.

 

Hi @katieo

I feel kind of obliged to reply as my tinnitus started the same time yours started and I do find myself asking the same questions that you asked. My early days were very very tough, I was admitted twice to ER, was given a jab to calm down twice. I barely slept for the first 10 days, was feeling and looked like a zombie. I must say that my tinnitus is much better than my early days however I’m still quite anxious about the whole thing. Replying to your questions...

I don’t think that relapsing is a thing when it comes to tinnitus. I believe users speak more about having spikes. There is obviously nothing much we can do about them but at least try to track what changes your tinnitus. In my case for example, having Nutella drives my tinnitus crazy. I also have a couple of good days and bad days, I guess we have to appreciate the good days and try to learn from bad days. Also if you are having days not freaking out with your tinnitus then that may be a good sign as those I believe are the early signs of habituation.

Regarding obsessing about sounds, that actually happened to me yesterday, I was watching TV and suddenly I started to hear this humming noise which I was sure it wasn’t my tinnitus. At first I panicked until I realized it was only a light fitting that was emitting this sound!!!

Regarding relaxing again, it’s easier said than done but we need to try to get our mind off it. Have you tried making your tinnitus while watching TV I do that even at work. This clip works wonders for me.

MOST POWERFUL TINNITUS SOUND THERAPY 1...

I was also afraid that I wont be able to relax with tinnitus and I am a bit of a ‘drama queen’ but I am managing, like for example having a hot bath and turning the bathroom into a spa environment. Throw Epsom salt in the bath and maybe turn on some candles and soft music. I also relax when I go for a jog in nature.

On a general note. Having tinnitus sucks but we need to be hopeful. There are a lot of companies out there working on research, they know we are willing to pay big money to get rid of this so they want to crack it. Just FYI Otonomy are in phase 1 / 2 of a drug trial and this year Neuromod are expected to launch a device for treating tinnitus.

I learnt quite a lot from this forum. There are some people that know their shit quite well when it comes to tinnitus.


Take care,

Clint

 

@Clint Azzopardi I relate to your story so much! I am so much better than I was when this first started. I’ve done things I didn’t think I could do, I actually just finished studying abroad for 3 months in Paris. So in reality, tinnitus isn’t stopping me from doing amazing things. But my biggest concern is not not being able to do things like these, but I’m scared I won’t be able to enjoy my downtime the way I used to. I also fear quiet places, but in reality when I go to these quiet places nothing horrible happens. So I just need to keep teaching myself that my biggest issue to tackle is not the tinnitus but my response to it and the limitations I’m putting on myself because of it.

But back to relapsing, the reason I say relapse is because the tinnitus actually doesn’t change. It’s the same tinnitus I’ve always had. I would definitely describe my tinnitus as more of a sensation than sound majority of the time. So in reality, my tinnitus isn’t spiking, I’m relapsing in the fear and anxiety I had in my early days. I’ve pulled myself out of these bad 2 weeks or 3 weeks each time, I’m just getting tired of having a good month followed by a bad 2 weeks anxiety and attention wise. But I do agree, I think I show a great hope for habitation because of these good periods of time so early on in my experience. I read a quote on this forum and it really helped me and I think it can help you too. “If you know you’re going to be okay in a year or so, why worry?” There’s no reason to believe that you, me and everyone else here won’t feel better with time.

Thank you for your response ❤️

 

@Clint Azzopardi also side note, about that video, I actually don’t think I could listen to it if I tried. When I first got to Paris I was only a month into my tinnitus and was struggling with horrible HORRIBLE thoughts and anxiety. I remember trying to fall asleep to that track and failing miserably. I listened to it about two months ago again out of curiosity and it brought back such terrible memories, almost like PTSD. But it’s a good reminder that I’ve come to far since those days that I can fall asleep without masking and allow myself to hear the sound much more than I used to.

 

You basically wrote the story of my life after tinnitus onset last year. Unfortunately i don’t have any better answers for you since i try to figure out these things for myself

 

Hey Katie!

First off, I’m so sorry to read your post. Not because I don’t appreciate it, because I wish you didn’t have to be here or deal with Tinnitus, it’s a tough condition and I’m truly sending the biggest hug to you right now.

I just want to chime in and try to answer some of your questions so you can gain some hope and guidance that things will be ok, in fact they could even be great!

Tinnitus it tough as nails and my heart goes out to you because I developed my tinnitus also very young (24 years old, now 27) and it really does have such a huge impact on your life and you see a very long life and long road ahead at this age.

To answer some of your questions:

Relapsing: I can honestly say this will become farther and fewer between, I was terrible for 12 months before I even had days apart filled with hope but trust me as time goes on they will become so far apart you will enjoy your life! Truly you will! Time is everything with this condition.

Obsessing over sounds: Once again, time. I was holding my head inside my closet listening day incase and day out trying to figure out if the sound from the security monitor or fan, or power plugs were in my head. The obsessing will ease as your anxiety and response to the T does.

Relaxing: This is a huge one! Now I was the same as you, enjoyed nothing more than to lay in bed for hours and just enjoy the nothing. I went from that to springing out of bed shaking and trembling at the fear of the T that I hadn’t slept for 12 months properly.
This changes! It really really does! I now lay in bed for HOURS enjoying what is now my relaxation, sure the silence is now filled with my tinnitus, but my response has changed as the safest place and most relaxing place is my bed!


All I can say and all I can personally testify it to TIME. It changes so much, I’d be lying if I said that my Tinnitus still doesn’t bother me at times, that I don’t have to make lifestyle changes, because I do. But that I can live my life with Tinnitus and be ok. The changes are challengingly at times, we all have ups and downs! I still have downs.

But! It gets better! You will enjoy your life again and the beauty in doing nothing, relaxing, not obsessing etc etc.

I hope that you find some sort of peace in knowing that so many people on this forum are doing ok and that you have so much support here. I found my greatest strengths in the people on this forum and made a lifelong friend who lives only one state away!

It will get better, challenges will arise, time will become your greatest alli, life will be your life again.

Love Stacey. X

 

Since it isn’t loud or intrusive you should be able to habituate to it fairly quickly. Don’t try to feed into it with emotion because when you become emotional about it your perception of it increases.

It is normal for tinnitus to fluctuate so when it does don’t panic and let anxiety feed into it.

Use hearing protection in loud environments going forward, but don’t over protect in moderate to low noise environments if you don’t want to make your sound sensitivity worse.

Over time things will get better and it will fall into the background of your mind. Just be smart about protecting your ears.

 

@Stacey427 The putting your head in the closet thing really got me I was doing that all day yesterday in my sound proof closet!! When you say you still have bad days, would you say these days are bad in the sense the tinnitus is intrusive or bad in terms of your anxiety and stress? And when would you say you started returning to normal life? Your post helped so much... seriously thank you so much!!

 

Hey @katieo
I’m 23 and the same as you. I tend to read the forums instead of posting!
If you need a chat/rant I’m on insta - lorajones4
X

 

Sorry to hear you have joined the tinnitus club.

Do you know what the source of the tinnitus is? If you don't figure it out, hard to know why the relapses are occurring.

 

How come?