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Cemelia_03

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Posts: 7
Reply with quote  #1 
Hi. I'm new here.
I have severe tinnitus on both ears and severe hyperacusis that causes me to have excruciating pain in left ear.
The pain is 24/7 and so is tinnitus.
My ear pain is very extreme and unbearable to the extent that normal human speech or normal conversational tones hurt me more than I can ever express.
My pain is getting worse and too overbearing I need to quit school and stay in my room.

While I understand that exposing to sounds may be good for recovery...all the times the pain is intolerable that I need to cut out the sound.

Since I have these conditions...(it's been more than 9 months) I have depression and anxiety. I have chronic insomnia too as I couldn't sleep because of tinnitus on both ears.
Sometimes it's really DISTORTED and loud that I feel my whole head is ringing.

I have started TRT for about 2 months now but my pain flares up a lot of times which causes me to stop.

And TRT somehow makes my tinnitus on both ears spike up.
It's getting worse and more intrusive the more I listen to sound machine.
But that's the only thing I can do now.

I also listen to pink noise but there's no effects yet. In fact...listening to pink noise makes my ear twitch with pain.

Since I'm hypersensitive to sounds...low frequency sounds and high frequency sounds...my quality of life reduced a lot.

I often cry from the pain. Went to so many ENT specialists and audiologists but there's nothing they can do.

Ear pain has put me under a lot of stress and strained relationship with my family members. They couldn't understand what I'm going through at this moment and keep forcing me to go out.

Honestly...I don't find going out makes me better...my ear is really painful and piercing I couldn't do it. I need to protect my ear with earmuff but even that doesn't feel alright. My earmuffs can only reduce 20% of sounds I hear. But I'm still in pain.
And every time after going out...I'll cry in my room for long hours due to the extreme pain.

Since my hyperacusis is chronic and severe...the same shooting and piercing pain can last for up to 6 hours before it reduces to the normal pain.

So what should I do?
Can anyone help me or advise me.
I feel like I tried my best but even that is not enough.
Please can you give me a clue to overcome pain and tinnitus?
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Steve2017

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Posts: 145
Reply with quote  #2 
wow 15 years old and having to deal with all that... In my humble opinion tv's, laptops, mobiles aggravate H and T if overused - can I ask, it says on your profile you like reading, is this from a book or on a screen? If a screen try from a book with no tv on in the background, and check your screens are not over-bright when online. Other people will have other opinions and possible solutions, and they will reply in due time.  
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s simpson
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TrishB

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Posts: 5
Reply with quote  #3 
Cemelia
I’ve had severe Hyperacusis with pain for 8 years. TRT DOES NOT work for everyone and it can make people worse. If it hurts your ears you need to stop or all your doing is causing further damage. Do you wear ear protection? That can be very helpful. I wear Bose Q35 noise canceling headphones to block sounds and keep sounds to a minimum.
If you are on Facebook there is a great forum for Hyperacusis called Hyperacusis Support & Research. You should look into joining. We have quite a few young people with H on there and it’s a great place to ask questions and get lots of help.

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Trish Burckard
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rodmccain

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Posts: 218
Reply with quote  #4 
Hello all,

I can relate to the young lady that is having such severe issues.  Most of my pain is gone, and I had it all the time, not exclusively with sound.  I also had (still do) chronic T with kindling, and amplified hearing perception.  Most electronics make my T worse as well.

In all honesty, regarding Bose noise cancelling, it all depends on your symptoms, and the severity of those symptoms. I tried them for a very brief time, and it was NO GO. When I took  them off,  I had a setback with my amplified hearing issue   TRT can definitely make matters worse, for some a well.

With regards to Bose, the are not HEARING PROTECTION.  They cancel out frequencies using other frequencies,  to put it simply.  So I am thinking if you have a problem like  I do with frequencies that may be why they were not effective for me.

You can also try Peltor muffs alone, or with foam earplugs, particularly effective for people that do not have T or minor T issues.

You have not had this condition a significant time.  Most people do improve, on their own, or significantly to where they can resume a normal life....stay hopeful, don't give up!

I see you like reading, which is good.  I read quite a bit to pass the time.  I find it very helpful to engross myself in a good book!

 Kathy Mc

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Steve2017

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Posts: 145
Reply with quote  #5 
Cemelia, when reading a book take care what you choose while in recovery mode, avoid anything with violence or hatred in, choose nice books to read - as our bodies and spirit inside 'the real you' are made of 100% energy then it makes sense to put in positive energy, you can put in positive energy with nice thoughts and positive thoughts, which automatically removes some of the negative energy that can cause illnesses, so nice reads will help, avoid things like the tv/radio news while recovering, nice positive thoughts is what you're looking for, it will give your body good recovery chances; and help to heal.  
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s simpson
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Steve2017

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Posts: 145
Reply with quote  #6 
Can I just add to everyone, whatever life throws at us with discomfort we have to keep going, you hear of people making terrible decisions because they can't take anymore, its not the way! Work with positive energy and get stronger maybe just 1% per day, say to yourself when rising, focus and 'say/think' today is going to be a better day. 
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s simpson
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rodmccain

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Posts: 218
Reply with quote  #7 
I definitely avoid anything that will depress or upset me....still do.  My hearing has not gotten much better or T, but you do need to keep your spirits up.  Anything that brings you down,  avoid.  Please remember .....most people recover !!

Kathy Mc
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Cemelia_03

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Posts: 7
Reply with quote  #8 
Thank you everyone for your advice! It means a lot to me.😗😘
But since I have H...my definition of "loud" is way different than normal people. For them...it's concerts and cinemas that are considered loud.

But for me...sudden jarring movements or actions that produce sound( pen clicking...doors closing...turning on water taps) are really hurtful to my ear.😢
And especially human voices.
Oftentimes I cannot control people's voices. Sometimes they keep it low...sometimes they shout or scream. But either way...sounds...and I mean any kinds of sounds in general...hurt me very much.

I'm living in a very noisy household with babies and kids around so whenever they shout...my ear pain strikes.
It's so unbearable like gunshots at my ear. The pain is so deep within inner ear that it seems like thousands of knives are stabbing my ear.

Can I ask is it a good idea to continue TRT?
And listening to pink noise?
For TRT...I used a small speaker...kind of like a sound machine...and listen for about 3-4 hours daily.
But for pink noise...I listen from earphones...so I need to plug it in directly into my ears...and I did for 30 minutes to 1 hour...but it's actually very very painful and piercing since it's direct exposure to sound.

And do you guys think it's good for me to go out?
But the pain is nonstop and going out aggravates it to the max.

I try to stay really strong...just like you guys.
But being young and having to give up everything that I can do before...it's not easy seeing my family and friends living painless happy lives but I'm locked in my room crying and dreading from pain.

Of course I'm happy for them...but I kind of lose faith in my recovery.
Since I started to have H and T...everything is getting worse. I never improved. Not even once.
The pain is worse and so is my T.
I really don't know what to do and how long I could last...

And having to deal with depression and anxiety is another problem.
I'm afraid of sounds that I have mutiple panic attacks every day.
I really wished it could stop. 😢😢

I hope everyone will be so kind to reply and advise me on what to do again. Tq.💖
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Steve2017

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Posts: 145
Reply with quote  #9 
You ask about getting out - walks in the park are good for reducing stress and gets you away from the phone/computer which could be aggravating the problems. How many hours a day are you online?
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s simpson
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Naomi

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Posts: 10
Reply with quote  #10 
HI Cemelia,

My gosh I am so so sorry to hear what you are going through. It is just horrendous.

Do you have a G.P. That you are working with? FOr me this was what changed everything.

I was housebound and confined to my room for months over the winter (Sep to March last) and at times I found it impossible to believe that things could ever gert better, or that I would ever hear the sea again or play music or be with my friends,. But I have and I am and I got my life back, and so can you.

You are very strong and brave I have to say in how you are dealing with things and expressing yourself.

I have never been a big advocate of medication but my doctor, after some time, managed to persuade me to try two things. One is Amitryptyline, which is usually prescribed for neural pain, like for people with back injuries etc. My many sensitivities reduced a lot using this and through talking to other people who have suffered hyperacusis on this forum, I have learned that it has worked for others for ear pain also.

The other is Seraltrine or Lustral, which is an anti-anxiety/anti-depressant. Dealing with it all was so difficult and the tinnitus made me feel so low that I did need help coping and that is what Lustral does. It can oonly be taken in conjunction with your doctors advice and monitoring and I only take a pretty low dose but it has changed everything for me, and for others I have spoken to or read their posts.

May I ask you how did it happen?

Also I know that it’s impossible not to need ear protection when you are experiencing pain from sounds but using ear protection a lot will make your ears more sensitive to sound and so can make hyperacusis worse. Gentle, gradual sound exposure was what got me out of my room in the end, I worked with a CBT consellor and now I have my life back. I am just back from a week adventuring in a national park and playing music weith friends it was a miracle for me really.

I wish you the same and echo the other reply - you can get better, others have and you can too. The tinnitus can improve and the hyperacusis can improve and you can get your life back. AS my doctor explained to me though, the more you protect you ears, the more sensitive to sound they become, that is the science of it. I never wear ear protection now in normal life , i would only if I was in an unusually noisy situation like a loud concert etc.


I wish you helath and relief and I pray you find the right help that you need

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rodmccain

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Posts: 218
Reply with quote  #11 
Hi Cemelia,

I can relate to you except my pain was all the time for the first year.  I do understand the LOUDNESS issue though.  EVERYTHING IS ABNORMALLY LOUD.  I also understand the emotional trauma, depression and anxiety.  YOU ARE NOT ALONE. 

For now I would DISCONTINUE any type of in ear (like TRT) sound therapy.  Is there a quiet area of the house where you can be?  You need to have a talk with your parents, and a doctor that can discuss the serious concern of too much noise in the house. You really don't need to be subjected to it currently.  Your ears need to "rest." 

I am definitely NOT a"pill pusher," but I would also start some type of medication that can HELP you to cope.   You definitely need to calm yourself.  I know this is a very difficult thing to do, but you must do this.  It sounds to me that this is effecting your daily way of living in a profound way.  I understand completely.  As far as further sound therapy,  I use Pandora with Bose computer speakers in the den,  and one small Bose in my living room. Start out VERY, VERY slowly with volume, just so you can barely hear it. I use very soft acoustic guitar, piano.  It must be soft though. Do NOT listen to any music that has a lot of variation.  Gradually increase your volume and the length of time that you listen. If this does not help, try a brown noise CD.  It is much more tolerable, and softer than white or even pink noise. 

Take care  and God bless,
Kathy Mccain
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EDogg

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Posts: 167
Reply with quote  #12 
Hi Cemelia,

I echo everything that has been said by Steve, Naomi and Kathy!

You are a very strong young lady. This is a lot to go through at your age. You clearly have the strength and will to seek out help. As Kathy stated, you are not alone in this. Take heart that the vast majority of people who develop hyperacusis get better and get on with life. The odds are ever in your favor!

I also agree that you need some help, both with hyperacusis and with the anxiety and depression that inevitably comes with it. I also experience ear pain, although it is less often that it was at first. Although I am not entirely sure what exactly made it better, several things seemed to help.

1) Getting adequate sleep at night. When this began for me, I was getting 2-3 hours of sleep at night for the first 2 months. This was making ALL of my symptoms worse and was not conducive to living any semblance of a normal life. I am thankful for my primary care doctor, who has helped me with this and the ear pain with some medications. I now sleep very deeply, 7-8 hours per night, and wake up refreshed.

2) Being patient and kind to yourself. The ear pain and H spikes seem to happen almost randomly and can be very discouraging. Thing is, they eventually will calm down. It’s good to recognize this, don’t beat yourself up about what you could have, or should have, done better. H will do it’s thing regardless. Try to be at peace with that notion, knowing it will calm down eventually and it’s not your fault this is happening.

3) Be gentle with your ears. This kind of goes along with finding a helpful audiologist. If something you are doing to treat your H is making it worse, stop doing it. You should not subject yourself to pain. Desensitization is about changing your (brain) relationship to sound. You need to find a way to make sound less threatening and form a more positive association. There will be sounds you can tolerate and desensitize with. Everyone is different, so you will need to try different things. There are a number of ideas already raised in previous posts. Nature is a great source. Our ears were not meant to tolerate loud machinery, loud music, leaf blowers, etc. Nature provides sounds that our ears were intended to hear. Take walks in a park, away from city noise. Listen to the wind, or birds, or crickets or frogs. When I first got H and tinnitus I thought I couldn’t stand any noise. It wasn’t until I hiked in a field with crickets where I had an epiphany and realized these sounds don’t bother me!

4) Do not give up on (or retreat from) life, as much as you can tolerate. H will try and make you want to hole up in a quiet closet (and sometimes that is necessary when the pain is bad and you need to rest your ears). But try to stay engaged with friends, family, school, hobbies as much as possible, as you can tolerate. Do not let H and ear pain take over your life. Don’t give it that power. You are stronger than it and will outlast it. Although somewhat of a contentious topic, I think it is OK to wear earplugs, as necessary, in order to maintain your life. The goal is to wear them less and less as your ears and brain calm down. I find musicians earplugs to help quite a bit. They allow you to hear speach clearly yet bring down the level of sound to a tolerable one. I plan to stop wearing mine when I get to that point where I can tolerate without them. But until then, I will wear as needed (PRN) as they help me maintain my career and keep a roof overhead, pay medical insurance, etc.

5) Read success stories. Read them over and over. I cannot emphasize this enough. Many have been down this road before you. Learn about their journeys. See what worked (and didn’t work). Find encouragement that you can and will get through this.

You are a brave and strong person. You will overcome this. Hang in there.

EDogg



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smuth

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Posts: 11
Reply with quote  #13 
Hi Cemelia

I also had ear pain 24/7, Voices, tv computer hurts my ears. After a few years I have now recovered 90%. I can tolerate screaming kids, music, most sounds exept realy loud noice like alarm sounds, fireworks.etc...

My advice:

1. You need to rest your ears, try to not expose yourself from noices that make the pain worse. Use som kind of hearing protection when you go out of the house, and it is important to go out and meet your friends. I used foam ear plugs, i cut them in half to allow more sounds to go through them.

2. When you have the pain under control, when you can try to improve, if you use TRT, try it for 2 minutes, wait and see if the pain gets worse, if it is ok, try for five minutes the next day, then ten minute the day after, then you feel the pain getting worse , reduse the volume. Do it for a few weeks then try to increase again.

If the pain gets worse the first time you try TRT, try something else, nature sound from a speaker in your room..etc. I got pain from TRT so i had to use other sounds to improve.

3. When your hyperacusis is severe, you also get afraid of sounds, and your sound enviroment. This is a big part of problem and the ear pain, and it can slow down your improvement. So you need to protect your ears in these situations to reduse the stess. I actually got pain from situations when i expect loud sounds but it dos not happend, like if someone is about to drop a plate or a cup on the floor but it dos not brake so it not a loud sound or not a sound at all. 

4. Thinking about your hyperacusis all the time is not good for your improvement, so be with friends and try to forget it is very imortant or do other thing you like to do. I did not see much improvement then i stayed home all day long, i got worse.

5. Try to find out what works for you.

My experience:
To improve you need to slowly increese sound exposure, and you have to be relaxed, if you are afraid of sounds in these situations the improvement will take a long time or it may not be possible.

Setback is a part of recovery cause it is not possible to avoid, so do not be too afraid of that, because everyone has setbacks. But it you have alot of setback it will take more time.

Do it correctly i think almost everybody can improve a lot.

I hope this will help you....😉 If you have any questions i will be happy to answer...
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etrs

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Posts: 6
Reply with quote  #14 
My advice: Pray to God every single day. Be exposed to all normal noises, and don't wear ear muffs or plugs unless you're vacuuming or for a short period. Don't think about it. Check your spine alignment and teeth/jaw. Those are connected to your auditory (hearing) system, and can cause T/H. Do you have bad teeth? TMJ? Have you took a blood test to see if there's anything wrong inside your body? Do you have allergies/sinus infections? How is your posture? Does your neck hurt? One last question, do you have any health issues?
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williamsutkus

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Posts: 8
Reply with quote  #15 
HI CEMELIA
                 I'M GONNA GIVE YOU SOLID ADVICE.THESE ARE THE THINGS YOU NEED TO TAKE.START WITH HYPERACUSIS CONTROL.USE COTTON IN BOTH EARS TO LOWER THE EXTREME LOUDNESS.IN TIME YOU WILL SLOWLY ADJUST TO YOUR ENVIRONMENT.YOUR TINNITUS IS A RESULT OF ANXIETY THAT MOST PEOPLE DON'T RECOGNIZE.THE ONE THING THAT I FINE THAT REALY WORKS IS GABAPENTIN OR BUSPAR THAT YOUR DOCTOR MUST PRESCRIBE.I HAVE BOTH H.T.FOR OVER 5 YRS.AND I'VE TAKEN EVERYTHING BUT THE KITCHEN SINK.
                       THE BEST OF LIFE TO YOU  
                                                              BILL SUTKUS
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etrs

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Posts: 6
Reply with quote  #16 
^Does that help you, William? Like your T/H is lowered or non-existant temporarily?
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WhatHappenedDenis

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Posts: 46
Reply with quote  #17 
I advise you to get an adult member of your household to review these posts As most of us on this board know - you have an equal chance of getting good and not so relevant advise in a chat forum
And remember the best advice ever given for T and H - it will only get better as time passes
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