How Do You Adapt to / Live with a Very Reactive Tinnitus?

I'm struggling with my 6 weeks old tinnitus.
Unlike many tinnitus here, it seems to follow a pretty standard pattern.

The more sounds I'm exposed to during the day, the louder it gets. Doesn't matter how loud the sound is, a day with a very low PC-fan wearing earplug and T will eventually scream at the end of the day.

At the opposite, if I manage to stay over a day in almost complete silence (avoiding all sounds for a day then sleeping in silence), I reach a T level so low it's hard to find in silence in the morning.

On the other end, if it's raining during the night and rain falls on the window all night, T is screaming in the morning.

I don't know how to deal with that, I am becoming scared of anything involving sounds.

If I watch a movie with low sound, T increases, if I take a shower, T increases, if i brush my tooth, T increases, if i speak to people, T increases, if i drive my car, T increases, if I'm in a place with ventilation, T increases, if I'm outside in the wind, T increases. Masking it increases it as well.

Yesterday, i went from almost silent T in the morning to a T level that was as loud as people talking in the late afternoon, without leaving the house (a new record).

It was slowly going down this morning but it started raining outside so it's going back up again. Rain, I'm to the point I fear rain...

I'm terrified because there doesn't seem to be a limit to how high it can get. Each time it gets louder to a new high, I'm scared it won't get down this time.

I'm not able to restart my life, I'm trying but every single time I do something normal i used to do, T gets so high I have a panic attack and have to take benzos.

If that reactiveness doesn't stop eventually, i don't know how I'll ever be able to leave my home again. I feel like a complete prisoner right now.

So far, the only exit is benzo, not much of an option with the long terms side effects. But benzo give me silence and make me normal again for 8 hours each time.

I already made a deal with myself to wait a year and see if it heals. But so far, it's no going in the right
direction.

Three weeks ago, I could drive my car without an effect on T, no longer.
Two weeks ago, I could take a shower without an effect on T, no longer.
A week ago, I could brush my teeth without an effect on T, no longer.

The way it's going, soon enough, even walking will have an effect on T.

The thought of just taking benzo everyday and slowly up the dose as tolerance build up is more and more often in my mind.

Funny, at 28, I thought 2 month agos that life was forever. I feel right now that signing up for a single year of normal life (or maybe more if I'm lucky) until a benzo overdose is not such a bad deal.
Dying at 30 after a final, meaningful year where I'd do everything I ever wanted to do seems way better than 50 years of that hell if things do not get better.

 

@flobo

Tinnitus with hyperacusis can be very debilitating as you have found, and no matter how one tries it feels like an up hill struggle most of the time. Though it’s difficult try not to fear it because things often improve. As I have mentioned to you before try and get some counselling with a Audiologist or Hearing Therapist whose trained in the management and treatment of tinnitus.

Providing you are monitored by our GP, on the amount of benzos taken and how often you should be okay and find they can be of help to get you over this difficult period. They don’t have to be taken long term. I think you are putting a lot of pressure on yourself and it’s unfortunate that tinnitus often does this to people in the early stages. If you are able to spend time with family or friends just for a little while then it will help you not to feel so isolated.

With time your hyperacusis, which is a result of your auditory system being hypersensitive to sound will improve. In many cases (such as mine) it can be cured using sound enrichment or professional help using white noise generators as part of TRT. Try not to become too dependant on ear protection.

If possible continue using sound enrichment at night.
All the best
Michael

 

Thanks michael, I have appointements with various specialists over the next month, but those take time, especially in the summer months where many are in vacation.

I'm trying to see some friends, but the fact that i come home with a worse spiked T each time after talking for too long doesn't help me want to do it "too often".

I know it's stupid, but so far, it's like everytime i want to go back to my "normal life", T "punish" me for it.
On the other hand, if i live like an hermit with no sound whatsover, T goes down to the point it almost disappear eventually (after quite a long time still).

About reactive T / hyperacusis, i'm still not sure they are 100% the same thing.
A month ago, half the sounds i heard hurt. Now, only glass sounds (doing the dishes) still does, i experience no more disconfort at any daily sound apart from that one.

Yet, all sounds still spike T, even though they do not hurt anymore.

 

@flobo

Careful with those benzos. They are not for frequent use. Tolerance builds and then the opposite effects occur during withdrawal. Keep it occasional.

 

@flobo
Your auditory system has been affected by noise trauma. Whether one wants to call it: Reactive tinnitus, hyperacusis it doesn't really matter. The solution or treatment for the condition is to use gentle sound therapy which comes in various forms: white noise generators. Sound machine and being exposed to normal everyday sounds. It will take time for your auditory system to recover. Try not to be too hard on yourself and just do what you can manage.

All the best
Michael

 

White noise is a definitive no for now.
A few seconds of white noise and T spikes to never seen levels.
Other daily sounds, i can listen to only moderately, else it always spike T as well eventually.

It was prescribed to me 6 mg a day (bromazepalm). I took it that way the first week before i knew what benzo were.

I'm now managing spreading that "daily" 6 mg to a week and a half so far (i'm basically taking one either when i have to spend time outside and T start to spike or if T spikes like crazy during the evening and i need to sleep).
The main issue is that i don't dare go outside to much since i'll spike T and need benzo in the evening.
Hard bargain.

 

@flobo
If it is of any comfort. Most of what you describe happened to me when I first got tinnitus and hypercusis 21 years ago. It will get better but takes time. Try not to keep away from sound, even if you have to wear noise reducing earplugs. It's important that your auditory system is supplied with sound regularly, even if this is at a very low volume. It is sound that will help to close the auditory gateways or valves that have opened up in your auditory sensors in your brain. The only way to close them is by using sound therapy.

Michael

 

Hi Michael , does white noise at night help to reduce spike? I am having spike now because of noise exposure .
I do use white noise app when I am having spike and it relives my anxiety and help me sleep . Does it actually help to subside the spike ? Thanks

 

@Michael Leigh you often advise people to use sound enrichment at night. Is it because you believe that it eventually that might actually help to reduce the volume of T?

 

HI @Bill Bauer
You are a great contributor to this forum and some of your advice is really helpful, so please keep up the good work. It is actually a fact that using sound enrichment especially at night, helps to lower tinnitus and will also treat hyperacusis. I am using my tablet PC at the moment so cannot get full access to my posts and paste certain information here. Please go to my "started threads" look in the list and you'll see posts on "using sound enrichment"and the benefits. In my article: Tinnitus, A Personal View, there is a document in it tiltled:Sound machines. It explains all about using sound enrichment at night. I will add information about sound enrichment to this thread when I'm using my regular PC.

Audiologists and Hearing Therapists, advise their tinnitus patients to use sound enrichment at night. If the brain hears silence while we are asleep, it has the ability to increase it's internal gain, rather like a volume control and search for sound. Whilst increasing its breakground activity the tinnitus will also be increased, making it louder and more intrusive.
More about this is to follow.
All the best
Michael

 

HI @Bill Bauer,
Please see the post below.

The Sound machine

When the brain hears tinnitus for the first time it can feel threatened, as it has never heard this strange new noise before and because of this, it latches onto the sound and doesn’t want to let it go. It is similar to someone moving home and relocating to a new area where trains or motorcars might frequently be passing near their home. The brain is not used to hearing this amount of background activity and starts to focus on the sounds and in doing so they are given importance and thus become louder. The brain is capable of doing and adapting to many things. As time goes by, it no longer interprets these sounds as threatening and slowly pushes them into the background of the mind where they are now seen as unimportant.

Tinnitus and the way the brain reacts to it are a little similar. Most people with mild or moderate tinnitus adjust to it quite quickly. Although, we are all different, it’s natural to expect some people will take longer than others, so there is no definite time frame. However, the outcome will usually be the same for people in this group. After a while the brain will perceive the tinnitus as unimportant and gradually push it into the background where it becomes less noticeable and this is called habituation.

The same does not always apply to anyone with loud intrusive tinnitus. People affected in this way should try to avoid quiet rooms and surroundings during the day and especially at night, as it’s quieter and the tinnitus will appear to be louder and more intrusive. It is a good idea to buy a sound machine that plays nature sounds. They are often recommended to people with tinnitus that have difficulty getting off to sleep. Anyone new to this condition I advise to buy one. The sound machine can be placed by the bedside and also used during the day. For night use some people prefer to connect it to a pillow speaker particularly, if they have a partner that might be disturbed by it; although most people find they can drift off to sleep easily when listening to the soothing sounds of nature. If you decide to use a pillow speaker then make sure the sound machine that you buy has a 3.5 audio output socket fitted that will enable the pillow speaker’s cable to connect to it. The volume of the sound machine should be set just below your tinnitus and not at a level that will completely mask it. The same also applies when a pillow speaker is being used.

When we are asleep, the auditory pathways and brain are still active. If the brain hears silence it has the ability to increase the level of the tinnitus making it louder and more intrusive during waking hours. The sound machine with its low level non intrusive sounds, will gently deliver sound enrichment to the brain while we sleep which will, over time help it to push the tinnitus further into the background of the mind making it less noticeable during the day and helps the habituation process. Anything new that we bring into our lives takes time to get used to. Most people are used to sleeping in their bedroom at night in complete silence. Therefore, please remember the sound machine takes a while to get used to but once the benefits are realized you won’t want to be without it.

Natural environmental sounds

Some people find natural environmental sounds to be very therapeutic for their tinnitus. The opening of a window or the sound of traffic and even the rustling of trees has been mentioned. It’s as if all one has to do is turn to mother nature to find all the answers. A personal favourite is to be by the sea and listening to it lapping against the shoreline for it creates the perfect ambiance for relaxation.

CDs and MP3 downloads

Not only is tinnitus experienced differently by each person, the type of treatment that one uses to get relief from the condition and make life a little easier can be different too. Some people find listening to relaxation CDs through a portable cd/radio player beneficial or downloading MP3 tracks from the Internet and listening via their mobile phone or MP3 Player. Listening to music through a mobile phone or MP3 player is usually fine, as long as they are connected to a docking station that has speakers attached.

The sound therapies mentioned above come under the heading of sound enrichment for tinnitus. My advice is to experiment and see what works best for you, including household items such as a fan or ticking clock. Most people with tinnitus prefer non-intrusive sounds such as white noise, sound machine and environmental sounds. Music on the other hand tends to draw attention to it and evokes emotions, which probably isn’t the best source to use for sound enrichment.

It is important that people affected by noise trauma don’t deliberately keep away from sound as this can make their sensitivity worse. With hyperacusis the auditory sensors or gateways in the brain have opened up, thus causing this over sensitivity to sound. It can be painful and become a big problem if one isn’t careful. The only way that I know of correcting this, is by using gentle sound therapy or to give it is proper name sound enrichment.

A person with acute sensitivity to sound caused by noise trauma, may need the help of white noise generators and regular counseling with an Audilogist/Hearing Therapist. Just wearing white noise generators alone to treat the over sensitivity without counselling might not be beneficial. I have covered counselling and tinnitus, with or without hyperacusis in other posts. Please click on the links below.

Whether one wants to call the over sensitivity to sound Reactive tinnitus or Hyperacusis, I believe they are the same thing and therefore, will not be participating with those that disagree as I can’t see the point for I have covered this before at length. I believe it can be cured in most cases. It may or may not need professional help. I wore white noise generators for up to 10 hrs a day and had regular counselling with a Hearing Therapist. The TRT treatment lasted 2 years. The tinnitus reduced to a very low level and the hyperacusis was completely cured and has remained so 21 years on. The hyperacusis was so severe I had to ask people to please lower their voice during conversation as my ears hurt so much.

Michael

https://www.tinnitustalk.com/threads/can-tinnitus-counselling-help.22366/

https://www.tinnitustalk.com/threads/tinnitus-and-mental-health.21978/

https://www.tinnitustalk.com/threads/the-habituation-process.20767/

https://www.tinnitustalk.com/threads/what-happens-in-trt-sessions.18195/

https://www.tinnitustalk.com/threads/tinnitus-a-personal-view.18668/

https://www.tinnitustalk.com/threads/hyperacusis-as-i-see-it.19174/

 

is using a fan classed as zone enrichment and can provide the same benefits? I've been using a fan since the first day of my tinnitus whenever I'm at home or in bed

 

A fan will suffice as sound enrichement providing it doesn't mask the tinnitus. In other words, make sure you can hear your tinnitus above it. The problem with a fan is that the volume cannot be controlled.

Michael.

 

@flobo , My T is also so very reactive. Wish I knew how to live with it....

Saw a prominent ENT who runs a T clinic.. he said that about 20% of the patients he sees have "reactive" T and he does not believe that it is H. I don't know what to think other than my ear is totally fucked and that i'm going down.

Sorry to not inspire you, i'm so in the shithole. Just protect yours ears as much as possible. You're 6 weeks in and really a lot can change (improve) for you. Don't be around loud sounds though. Only wear foam or earmuffs. For someone like you, don't even try the musicians earplugs that some here recommend. I learned about that the hard way.

 

The ENT doctor that you saw may be an excellent physician and knows all about the anatomy of the ear. He will be able to treat it medically or surgically. If he has never experienced tinnitus or hypercusis (sensitivity to sound) he won't know what they are like. My belief is that some in the medical field are trying to make "reactive tinnitus" into a seperate but treatable medical condition that is different from hyperacusis. First, they want to treat the Reactive tinnitus then the hyperacusis. I think there is a hidden agenda here an ulteria motive. The term Reactive tinnitus was made up in tinnitus forums and I believe some in the medical profession has caught on to this buzz word and thought: what a good idea.

Protecting your ears as much as possible is one of the worst things that you can do. You will make your auditory system more senstive sound and make the hyperacusis worse. This is not the solution. You need to introduce yourself to normal everyday sounds. You can start by using "noise reducing" earplugs that have filters in but try not to wear them too often. Use sound enrichment at night using a sound machine by your bedside. Please read my post: Hyperacusis, As I see it. You
will find it on my "started threads" There is information in this post how to desenstise your auditory system. In severe cases specialist treatment may be required using white noise generators, under the care of a Hearing Therapist.

Michael

 

@Michael Leigh, if I had to choose I would have to say that there is definitely a phenomenon of reactive tinnitus that is different from hyperacusis. This is from my personal experience and reading what others have shared. There is likely an physical reaction that is occurring in the ear but I don't know enough to go further than that. Also, I'm not at all interested in arguing about the topic. I've seen you express your views on said topic numerous times and I'm not going there further than what I said. I think some of the arguing here totally goes above and beyond. One size does not fit all. The world is not black and white.

Also, since you brought it up, I'm sorry to report, but the noise reducing earplugs with filters that you recommended have gotten me into a lot of trouble. They did not protect. (They don't fit my ear canal at all and leak in sound, plus they don't offer a high enough decibel protection.) When someone needs real protection from harmful noise, they need to use foam (or earmuffs.) And, I get plenty of normal everyday sounds and know with 100% certainty that exposing my ear to harmful noise is detrimental for what I experience with MY tinnitus.

 

...just want to add to this ..."When someone needs real protection from harmful noise, they need to use foam (or earmuffs.) " Though, earplugs (foam) don't always protect in all situations. Learned that that hard way too.

 

Can you please be more specific as to how you learned this and what some of us should be careful about?

 

@Zinnia

Thank you for your detailed reply. All I will say I have had tinnitus for a long time and habituated and once had very severe hyperacusis that has been completely cured. You are correct one size doesn't fit all and I also agree the Reactive tinnitus and hyperacusis topic has been debated and explored to the hilt in this forum and quite frankly I'm now exhausted discussing it. People at other forums also share the belief the term "Reactive tinnitus" was made up in tinnitus forums so I'll end it there.

I will just like to add that you are new to tinnitus and since you have had "noise trauma" to your auditory system I understand it quite well having had the same. I also understand the reasons you want to protect your hearing. However, based on my many years experience with tinnitus I'm advising you of this. Protecting your ears in the manner that you are doing especially using foam earplugs, I believe will make your condition worse if they are used too often or used to suppress normal everyday sounds. I have helped many people with hyperacusis/ sensitivity to sound . You need treatment and this is best done under the care of a Hearing Therapist or Audiologist that is trained in the treatment and management of tinnitus and hyperacusis. You can also do a lot to help yourself by following some of the advice in my post: Hyperacusis, As I see it. Start by using sound enrichment at night to help desensitise the auditory system.

I wish you well
Michael

 

This is already an old thread.

Tbh, i'm finally on my way to habituation from my RT. I realized it's not that loud when it's not reacting, so well, when it's reacting, i just think i'll go back to baseline after, which it always does so far.

My current main issue is more of pressure equalization. I took the channel tunnel yesterday, and it was a terrible experience. More and more pressure/pain in my ears and i couldn't equalize no matter how much i tried.

Still, the ENT tells me that i have no ETD issues, go figure...

 

I am pleased that you are making progress @flobo Please remember you are in still in the early stages of tinnitus and hyperacusis. Carry on using sound enrichment as I've advised and try not to use earplugs to suppress normal everyday sounds too often. Give yourself a year preferably two years to fully recover. You will get there.

All the best
Michael

 

Michael is correct, soothing sounds are best while sleeping. Remember the brain is trying to make up for the decibal loss. So music is not best for masking. You might have to try a few before you find one that suits you best. I down loaded a fan app and play it. I can make it as low or high as i want. Also Bose makes a nice little blue tooth speaker that i use quiet often.

 

Ok brother I feel your pain ! My sound levels never change they stay loud all day long . And like you I had a hard time dealing with everything that came with this ! I was 20yrs old when I started all this fun ! The best advice I can give you my friend is to chill and it will not kill you or drive you to hurt yourself . I am 43 now and I live my life how I want to , I ride my Harley every day that I can due to its cold here in Detroit .. One day at a time brother keep busy and time will do the rest . CURLY

 

@Michael Leigh : No, I'm NOT protecting my ears in an inappropriate manner, as you said. I teach in an elementary school and do not wear earplugs with the kids in the room. That is plenty of sound for my ears. And I'm exposed to all kinds of other sounds as well. One of which that has WORSENED my tinnitus. Please don't pick and choose from my writings and decide, based on your agenda, what is best for me. I specifically wrote that I take in plenty of normal everyday sounds, but you chose to ignore that.

 

Temper, Temper. Please remember getting upset will make your condition worse. Disagree with me but try and calm down......

 

Stop bullying people. Their condition will not get worse just because they disagree with you. Nothing in their response indicated temper, you are simply gaslighting them.

I am still suffering with the type of hearing condition described here, which is along the lines of what the OP is talking about. For the record here is how I describe some of the terms used in this thread. I do not think you should marginalize people over their condition. I won't try to sum it up better than someone else already has.

For the record, this is how I interpret some of the terms used to describe the hearing conditions discussed and experienced by me.

Hyperacusis: Pain or Discomfort caused by sounds which the "average" person would not. Huge spectrum of severity and symptoms experienced by the individual.

Tinnitus: Generally referring to constant tonal tinnitus. However again a huge spectrum of severity and types.

Reactive Tinnitus: Generally used to refer to when someones constant tinnitus is increased in volume by environmental causes, usually sound exposure. Usually a "spike" that settles back to their regular Tinnitus named above.

Hearing Distortion: Used to refer to hearing imperfections, with me, this is what sounds like modulated tonal tinnitus present at certain frequencies in external noise, others who experience this often end up calling it reactive tinnitus. However hearing distortion can cover all other types of hearing problems people experience, immediately after acoustic trauma, and while having SSNHL low frequency hearing may be distorted. People describing hearing whistling over things (which I think describes the modulated tonal tinnitus tones I hear at certain frequencies, and can become faintly constant if I have an episode of reactive tinnitus as defined above. For others: everything sounding like it's coming from a broken speaker, robot or chipmunk voices are all some description I have read here, and may be described by people with Meniers.

 

@SilverSpiral Thanks for sharing your thoughts and helping to stand up to @Michael Leigh . Interesting that you used the word bully when responding to him... I was just thinking about how he argues relentlessly about how reactive tinnitus doesn't exist, etc and the word bully came to mind as well. If a group of people want to discuss reactive tinnitus in a thread they should be able to! If you look at any of the threads here relating to reactive tinnitus, there will be endless posts by ML debating and arguing about all he disagrees with and pushing his own agenda based on his experiences only. Essentially the threads are being endlessly hijacked and people are not able to productively discuss what they want to.

Obviously you'll read this, ML, because I tagged you. You obviously don't suffer from the symptoms people describe as reactive tinnitus. Therefore, these threads don't apply to you. Stop dismissing the experiences many people here have (which is pretty horrible btw having to deal with constant endless spikes) and let them discuss things as they wish. Feel freed of your duties as the There is No Such Thing as Reactive Tinnitus police. Everyone already knows how thoroughly you disbelieve in the phenomenon and their individual experiences with it. So consider your job well done; however, you've got quite a lot of people who disagree with you!!!

 

Indeed I have read your post but this shall not be the case in future, as you're another person that I shall add to the ignore list as I have done with your sidekick some time ago.

I will finish by saying in time you will learn.
All the best
Michael

 

@Michael Leigh

Great, you do that.

You need to understand that you are the authority on everything tinnitus. The term Grand Poobah comes to mind when thinking of you - not in the reverential sense, but the opposite. One that comes from a place of extreme self-importance - haughty and pompous.

 

There was a member that posted his dissertation on tinnitus a while back.
https://www.tinnitustalk.com/threads/my-dissertation-on-the-sound-sensitive-tinnitus-subtype.24839/

https://search.proquest.com/docview/1942912706

I admittedly haven't had the time to read the whole dissertation, but it spends a lot of time talking about reactive tinnitus with citations.