Five Months In — Things Are Starting to Improve

[PhilB]

Hi everyone - this is my first post but I have been an occasional visitor to this forum for a few months.

I've had tinnitus since a mild head injury (MTBI) in early December 2013. The first 2 or 3 months were a very
difficult time but things have definitely improved recently. When T first starts, it is distressing but you hope
that it will just be a temporary thing. When there is no change and no improvement in the T after a few weeks, you start to get worried - I certainly became very worried, to the point where I was unable to eat or sleep properly.

The first sign of improvement came when I started on DIY neuromodulation using sound samples downloaded from this forum. I put the files on an MP3 player and found that a few minutes of listening to ACRN would turn the high pitch tone into a slightly metallic hissing sound which (although not pleasant) provided some temporary relief from the tinnitus. I considered the ACRN treatment offered by the Tinnitus Clinic here in the UK but decided it was too expensive. My DIY experiments with ACRN have not produced any permanent change in the T but the temporary effect is encouraging and I still listen to the ACRN tones when lying in bed most nights. I find that it quietens the T for a while and helps me to sleep.

I was referred to ENT and then to an NHS Tinnitus specialist where I was given PureTone in-ear noise generators. I don't find myself using these very often but the white noise they generate is OK for occasional use when I need a break from T. I'd read a lot and heard a lot about habituation but it sounded like a fancy way of saying that the noise isn't going to get any better but you will get used to it. I was not greatly re-assured by this because I deperately wanted to get rid of the T and I felt that it would ruin my life if I didn't get rid of it. For the first few months, I felt that I couldn't enjoy listening to music any more because the T made all music sound trebly and tinny. This was particularly worrying because music has always been a very important thing in my life.

The good news is that after 5 months I am realising that I can still do all the things I used to do before T and I still enjoy all the things that I used to enjoy. The noise is still there but I am no longer troubled by it to the same extent. I find I am using ACRN and sound generators less frequently than before. I don't seem to need them so much now. My message to others who are going through the initial (most difficult) stages of tinnitius is hang on in there. You may find it hard to believe but things will get better if you have patience and maintain a positive attitude. Nobody chooses to get T but you can choose that you are not going to let it ruin your life.

 

[maccebu]

My friends and family will soon get tired of hearing about my T story, so at the end of the day, it's on me. I guess the best way to cope with it is to just accept it wholeheartedly. For starters, it's difficult but I'll get there

 

[citigirl13]

Hi everyone - this is my first post but I have been an occasional visitor to this forum for a few months.

I've had tinnitus since a mild head injury (MTBI) in early December 2013. The first 2 or 3 months were a very
difficult time but things have definitely improved recently. When T first starts, it is distressing but you hope
that it will just be a temporary thing. When there is no change and no improvement in the T after a few weeks, you start to get worried - I certainly became very worried, to the point where I was unable to eat or sleep properly.

The first sign of improvement came when I started on DIY neuromodulation using sound samples downloaded from this forum. I put the files on an MP3 player and found that a few minutes of listening to ACRN would turn the high pitch tone into a slightly metallic hissing sound which (although not pleasant) provided some temporary relief from the tinnitus. I considered the ACRN treatment offered by the Tinnitus Clinic here in the UK but decided it was too expensive. My DIY experiments with ACRN have not produced any permanent change in the T but the temporary effect is encouraging and I still listen to the ACRN tones when lying in bed most nights. I find that it quietens the T for a while and helps me to sleep.

I was referred to ENT and then to an NHS Tinnitus specialist where I was given PureTone in-ear noise generators. I don't find myself using these very often but the white noise they generate is OK for occasional use when I need a break from T. I'd read a lot and heard a lot about habituation but it sounded like a fancy way of saying that the noise isn't going to get any better but you will get used to it. I was not greatly re-assured by this because I deperately wanted to get rid of the T and I felt that it would ruin my life if I didn't get rid of it. For the first few months, I felt that I couldn't enjoy listening to music any more because the T made all music sound trebly and tinny. This was particularly worrying because music has always been a very important thing in my life.

The good news is that after 5 months I am realising that I can still do all the things I used to do before T and I still enjoy all the things that I used to enjoy. The noise is still there but I am no longer troubled by it to the same extent. I find I am using ACRN and sound generators less frequently than before. I don't seem to need them so much now. My message to others who are going through the initial (most difficult) stages of tinnitius is hang on in there. You may find it hard to believe but things will get better if you have patience and maintain a positive attitude. Nobody chooses to get T but you can choose that you are not going to let it ruin your life.

Glad to hear that things are getting better. I have had some rough moments, but there are still signs that I have a medical problem in my ear, so I am hoping that once it solves itself the T will eventually go. It's good to hear that things get better (I've nearly had T for four months now). I myself have had signs that things are getting better, and I am getting less bothered about my T than I used to be - optimistically I think it has gotten lower in volume which is a good sign. Either that or my brain is just very good at filtering it through!

 

[Tommy TuTone]

Hello everyone,
As others, this is my first post. I have been suffering severely for the last 3 months. I have had it on & off since my early 20's due to loud music, ( I played Rock music for a hobby for years). I ended up with an ear infection in February and the ringing has gotten worse. I discovered this Forum (Thank God) & everyone's conversation about Dramamine, Meclazine, and Bovine along with Niacin. I have not taken the Niacin yet (as it needs to be taken with Meals) but I have the slow release 500MG dose. I did take 25mg of Dramamine and this was the fists decent nights sleep I've had in months. The anxiety is terrifiying. The ringing is still there, but was not as severe when I woke up. Please share any advise if you can, about these various medication combinations. The DOCTORS, just blow this off and it is real and debilitating.
Thank you all for your help.

 

[Tommy TuTone]

Glad to hear that things are getting better. I have had some rough moments, but there are still signs that I have a medical problem in my ear, so I am hoping that once it solves itself the T will eventually go. It's good to hear that things get better (I've nearly had T for four months now). I myself have had signs that things are getting better, and I am getting less bothered about my T than I used to be - optimistically I think it has gotten lower in volume which is a good sign. Either that or my brain is just very good at filtering it through!

Hello everyone,
As others, this is my first post. I have been suffering severely for the last 3 months. I have had it on & off since my early 20's due to loud music, ( I played Rock music for a hobby for years). I ended up with an ear infection in February and the ringing has gotten worse. I discovered this Forum (Thank God) & everyone's conversation about Dramamine, Meclazine, and Bovine along with Niacin. I have not taken the Niacin yet (as it needs to be taken with Meals) but I have the slow release 500MG dose. I did take 25mg of Dramamine and this was the fists decent nights sleep I've had in months. The anxiety is terrifiying. The ringing is still there, but was not as severe when I woke up. Please share any advise if you can, about these various medication combinations. The DOCTORS, just blow this off and it is real and debilitating.
Thank you all for your help.

 

[Tommy TuTone]

Well Just when I thought things were getting better I ended up with worse ringing last night. I took my Niacin & Dramamine but the anxiety was terrible. I am a nervous wreck. I am hoping someone here can help me as I seem to be getting no where with Doctors. I think they are afraid of this. I heard several people outside of this forum talk about laying of of Gluten. I don't know what brought this on but it's terrible. I am finding that little to no noise helps to calm it. Otherwise the TV or background noise increases the hissing sound in both ears.

 

[Tommy TuTone]

My friends and family will soon get tired of hearing about my T story, so at the end of the day, it's on me. I guess the best way to cope with it is to just accept it wholeheartedly. For starters, it's difficult but I'll get there

I understand Maccebu, my wife is very worried. I don't know how to live with it. it's never ending.

 

[maccebu]

I understand Maccebu, my wife is very worried. I don't know how to live with it. it's never ending.

You're not alone.

 

[Tommy TuTone]

Hi everyone - this is my first post but I have been an occasional visitor to this forum for a few months.

I've had tinnitus since a mild head injury (MTBI) in early December 2013. The first 2 or 3 months were a very
difficult time but things have definitely improved recently. When T first starts, it is distressing but you hope
that it will just be a temporary thing. When there is no change and no improvement in the T after a few weeks, you start to get worried - I certainly became very worried, to the point where I was unable to eat or sleep properly.

The first sign of improvement came when I started on DIY neuromodulation using sound samples downloaded from this forum. I put the files on an MP3 player and found that a few minutes of listening to ACRN would turn the high pitch tone into a slightly metallic hissing sound which (although not pleasant) provided some temporary relief from the tinnitus. I considered the ACRN treatment offered by the Tinnitus Clinic here in the UK but decided it was too expensive. My DIY experiments with ACRN have not produced any permanent change in the T but the temporary effect is encouraging and I still listen to the ACRN tones when lying in bed most nights. I find that it quietens the T for a while and helps me to sleep.

I was referred to ENT and then to an NHS Tinnitus specialist where I was given PureTone in-ear noise generators. I don't find myself using these very often but the white noise they generate is OK for occasional use when I need a break from T. I'd read a lot and heard a lot about habituation but it sounded like a fancy way of saying that the noise isn't going to get any better but you will get used to it. I was not greatly re-assured by this because I deperately wanted to get rid of the T and I felt that it would ruin my life if I didn't get rid of it. For the first few months, I felt that I couldn't enjoy listening to music any more because the T made all music sound trebly and tinny. This was particularly worrying because music has always been a very important thing in my life.

The good news is that after 5 months I am realising that I can still do all the things I used to do before T and I still enjoy all the things that I used to enjoy. The noise is still there but I am no longer troubled by it to the same extent. I find I am using ACRN and sound generators less frequently than before. I don't seem to need them so much now. My message to others who are going through the initial (most difficult) stages of tinnitius is hang on in there. You may find it hard to believe but things will get better if you have patience and maintain a positive attitude. Nobody chooses to get T but you can choose that you are not going to let it ruin your life.

Thank you Phil B. Your comments are reassuring. At this stage it is terrible & causing debilitating anxiety. I am encouraged I need to find where to get the sound devices. Thank you TommyTuTone

 

[PhilB]

Haven't checked the board much recently and it is a while since I've posted on here but just wanted to say hi to everyone. Some of you may remember that I was trying very hard to get on the Autifony trial back in January. At my initial screening visit, they pretty much told me I was good to go but I was eventually ruled ineligible to due high blood pressure. The trial doctor referred be back to my own GP who prescribed Lisinopril for hypertension. They warned me that it may cause a dry cough and this turned out to be something of an understatement. I developed the worst cough I've ever had in my life. I was then prescribed a short course of steroids (Prednisolone) for the cough and they helped to some degree but I began seeing blood in phlegm from my nose. I'm continuing to experience a nasty cough and blood in nasal phlegm even now, three weeks after finishing the course of steroids. Apparently, the bleeding is a known side-effect of Prednisolone so not necessarily anything to be too alarmed about. Even so, I am struggling to stay positive at the moment because these symptoms can sometimes be indicators of serious illness.

Looking on the bright side, all this has distracted me from worrying about T. After about 17 months, I feel as if I am over the finish line in the sense of having gone through the cycle of negative reactions to it and reached the point where it is just there all the time and part of who I am. In my early days of T, I often wondered if habituation meant that you no longer hear tinnitus. It doesn't but it does mean that you no longer really care about it. For most of us, I think this is the best that we can realistically hope for.

Since developing T, I have been surprised by how many other people I know (work colleagues etc.) also have the condition. Out of around 15 people I work with, there are 4 who I know to be T sufferers and possibly more that I don't know about. I don't want to sound disrespectful to all the people on this forum who are involved in promoting research into T and raising awareness of the condition but I guess most of us reach a point where we just shrug our shoulders and try to get on with our lives. So I now think to myself that I am stuck with this condition for the rest of my life but people endure worse things than T.

I wish everyone all the best and I hope you all manage to stay strong but I can't help thinking of something I read on this forum that an ENT had apparently said to a T patient: "Those who never stop trying to find a cure are the ones who never get better." Maybe the point where you stop wishing for silence is the point at which you start to recover from T.

 

[Danny Boy]

Hi everyone - this is my first post but I have been an occasional visitor to this forum for a few months.

I've had tinnitus since a mild head injury (MTBI) in early December 2013. The first 2 or 3 months were a very
difficult time but things have definitely improved recently. When T first starts, it is distressing but you hope
that it will just be a temporary thing. When there is no change and no improvement in the T after a few weeks, you start to get worried - I certainly became very worried, to the point where I was unable to eat or sleep properly.

The first sign of improvement came when I started on DIY neuromodulation using sound samples downloaded from this forum. I put the files on an MP3 player and found that a few minutes of listening to ACRN would turn the high pitch tone into a slightly metallic hissing sound which (although not pleasant) provided some temporary relief from the tinnitus. I considered the ACRN treatment offered by the Tinnitus Clinic here in the UK but decided it was too expensive. My DIY experiments with ACRN have not produced any permanent change in the T but the temporary effect is encouraging and I still listen to the ACRN tones when lying in bed most nights. I find that it quietens the T for a while and helps me to sleep.

I was referred to ENT and then to an NHS Tinnitus specialist where I was given PureTone in-ear noise generators. I don't find myself using these very often but the white noise they generate is OK for occasional use when I need a break from T. I'd read a lot and heard a lot about habituation but it sounded like a fancy way of saying that the noise isn't going to get any better but you will get used to it. I was not greatly re-assured by this because I deperately wanted to get rid of the T and I felt that it would ruin my life if I didn't get rid of it. For the first few months, I felt that I couldn't enjoy listening to music any more because the T made all music sound trebly and tinny. This was particularly worrying because music has always been a very important thing in my life.

The good news is that after 5 months I am realising that I can still do all the things I used to do before T and I still enjoy all the things that I used to enjoy. The noise is still there but I am no longer troubled by it to the same extent. I find I am using ACRN and sound generators less frequently than before. I don't seem to need them so much now. My message to others who are going through the initial (most difficult) stages of tinnitius is hang on in there. You may find it hard to believe but things will get better if you have patience and maintain a positive attitude. Nobody chooses to get T but you can choose that you are not going to let it ruin your life.

Glad to hear you're getting better! The mozart sonata helps me relax and cope with my tinnitus.