Does Anyone Else Have Tinnitus That Is Completely Random?

[AfroSnowman]

Just out of curiosity, I see lots of people posting about stuff they do or avoid to minimize spikes or lower the noise, oddly my experience is the complete opposite.

Sleep/no sleep, exercise/no exercise, caffeine/no caffeine, alcohol/no alcohol, headphones, earbuds, noise, quiet rooms, nothing seems to make one bit of difference. I have 24/7 functionally unmaskable noise. I'm not freaked out by it anymore, though it sucks, but good days, bad days, they all seem completely random.

Anyone else find that theirs is the same?

On the positive side since it sucks no matter what I do, I've stopped being scared to do stuff. I just have to be cool with the noises.

 

[Tinniger]

Could you describe your tinnitus in more detail?
How did it start?
One sided or both sided?
Rather a beeping with a certain frequency, or a hissing like white noise...?
Are the daily fluctuations small or pronounced?
Somatically influenceable or not?

I have better and worse days, too and have been puzzling for two years now and find no correlation either.

 

[AfroSnowman]

Mine started 4 months ago. I just woke up at 2am and it was full out rocking. Never had any experience with it prior. No exposure to noise, no drug, not apparently sick though the ENT's guess was that I had a viral event. Hearing is OK, except for a dip to ~45 at 6000.

I get all kinds of noises, my right is normally a steady high pitched tone, while my left crickets and pops and hisses. When it gets like that my right seems almost sympathetic to the sounds of my left and I just hear them all over my head.

When it is lower, still audible but lower, I experience it as a hiss.

Yes it is somatic.

But yeah it seems to have no correlation with anything.

Yours?

 

[Tinniger]

I get all kinds of noises, my right is normally a steady high pitched tone, while my left crickets and pops and hisses. When it gets like that my right seems almost sympathetic to the sounds of my left and I just hear them all over my head. When it is lower, still audible but lower, I experience it as a hiss.
Yes it is somatic.

Isn't it strange that you have tinnitus complaints in both ears that are different in nature?
Tinnitus sometimes follows strange paths...
With me there is only the phenomenon that after a horror day usually a better day came.
I have the tinnitus only on the left, it's a hiss, which gets louder with pressure on different places at the head. Cause unclear.

How did you find out that your tinnitus is "somatic"?

 

[AfroSnowman]

Isn't it strange that you have tinnitus complaints in both ears that are different in nature?
Tinnitus sometimes follows strange paths...
With me there is only the phenomenon that after a horror day usually a better day came.
I have the tinnitus only on the left, it's a hiss, which gets louder with pressure on different places at the head. Cause unclear.

How did you find out that your tinnitus is "somatic"?

For me if I open my mouth wide, stick out my tongue or lean my head back to look strait up the pitch and intensity changes.

Very weird stuff. When I use an electric shaver it changes its quality for a couple of minutes after, sometimes the same when I use my coffee grinder. Or in terms of weirdness last weekend I was doing 'fine', a relatively quiet day, but we had gotten a new luggage scale that I turned on and was wondering if it beeped but I couldn't hear it because of the Tinnitus. So I put my ear next to it and really listened. Somehow that concentrated listening set it off and I was in for a wild 2 day ride. Just for the record there was no beep.

 

[John Mahan]

My opinion is...many if not most tinnitus suffers on this forum have tinnitus just like you. No rhyme or reason. Their tinnitus can rage or be relatively calm. It suddenly appeared one day. There seems to be a somatic influence.

You describe me. I woke to very loud tinnitus this morning. Right now it is about 1/2 of what it was in volume first waking. It will likely go up or go down later.

The biggest influence on mine and many is sleep. Sleep can make my T spike to high levels. I somewhat correlate it to the type of dreams I am having. I sometimes remember my dreams. If my dreams are awful....placed in difficult places, doesn't look like I will survive etc versus more peaceful and successful dreams where I am gratified, this seems to have a pretty profound effect on my tinnitus. I presume it relates to cortisol level difference but quite possible not and the underlying cause is different brain centers are activated by peaceful and happy dreams versus nightmares.

In summary for me, my dreams are somewhat a metaphor for my tinnitus. In my dreams I many times am placed in an untenable position where I can't succeed or survive. I am good in real life at problem solving. But many times in my dreams, I can't map out a strategy to improve my situation. This is my subconscious of course processing who I am. A person who likes to solve things but can't solve tinnitus. So, my dreams which reflect my subconscious are in close agreement with my tinnitus and what it means to me I suppose. It has no resolution at this point in time and like my dreams, I deal with it as it comes.

 

[TheDanishGirl]

Mine is stable 98% of the time, only occasionally will it spike and when it does it is usually for a very short period of time.

 

[AfroSnowman]

My opinion is...many if not most tinnitus suffers on this forum have tinnitus just like you. No rhyme or reason. Their tinnitus can rage or be relatively calm. It suddenly appeared one day. There seems to be a somatic influence.

You describe me. I woke to very loud tinnitus this morning. Right now it is about 1/2 of what it was in volume first waking. It will likely go up or go down later.

The biggest influence on mine and many is sleep. Sleep can make my T spike to high levels. I somewhat correlate it to the type of dreams I am having. I sometimes remember my dreams. If my dreams are awful....placed in difficult places, doesn't look like I will survive etc versus more peaceful and successful dreams where I am gratified, this seems to have a pretty profound effect on my tinnitus. I presume it relates to cortisol level difference but quite possible not and the underlying cause is different brain centers are activated by peaceful and happy dreams versus nightmares.

In summary for me, my dreams are somewhat a metaphor for my tinnitus. In my dreams I many times am placed in an untenable position where I can't succeed or survive. I am good in real life at problem solving. But many times in my dreams, I can't map out a strategy to improve my situation. This is my subconscious of course processing who I am. A person who likes to solve things but can't solve tinnitus. So, my dreams which reflect my subconscious are in close agreement with my tinnitus and what it means to me I suppose. It has no resolution at this point in time and like my dreams, I deal with it as it comes.

So that brings up two interesting (to me) things. First I am almost certain I don't hear tinnitus when I sleep. There is absolutely no lag or ramp up when I wake, it is there 100%, but I don't have any trace of it make its way into my dreams.

The other thing is you mentioning cortisol levels. I had a friend years back that was dealing with some real anxiety issues, she spent a lot of time working with medical folks targeting cortisol level with various supplements. Has anyone gone down the rabbit hole on cortisol and tinnitus?

 

[AfroSnowman]

Mine is stable 98% of the time, only occasionally will it spike and when it does it is usually for a very short period of time.

Is it stable at manageable level? Mine certainly isn't stable, though is will sometimes go on a good or bad run for a couple of days.

Was yours stable from onset or did it become more stable over time? I think this week is my 4 month mark and I am keeping my fingers crossed that it will stabilize at a nuisance level and not at the problematic level.

 

[Digital Doc]

Just out of curiosity, I see lots of people posting about stuff they do or avoid to minimize spikes or lower the noise, oddly my experience is the complete opposite.

Sleep/no sleep, exercise/no exercise, caffeine/no caffeine, alcohol/no alcohol, headphones, earbuds, noise, quiet rooms, nothing seems to make one bit of difference. I have 24/7 functionally unmaskable noise. I'm not freaked out by it anymore, though it sucks, but good days, bad days, they all seem completely random.

Anyone else find that theirs is the same?

On the positive side since it sucks no matter what I do, I've stopped being scared to do stuff. I just have to be cool with the noises.

When the T gets this loud, it can be hard to correlate what is increasing it. Also be aware that T spikes can occur days after the exposure to noise that can confuse the picture.

"I've stopped being scared to do stuff"

It depends on what stuff you are doing. If these are loud exposures, like rock concerts, bands, power tools, etc, than the T will continue, and potentially worsen.

 

[TheDanishGirl]

Is it stable at manageable level? Mine certainly isn't stable, though is will sometimes go on a good or bad run for a couple of days.

Was yours stable from onset or did it become more stable over time? I think this week is my 4 month mark and I am keeping my fingers crossed that it will stabilize at a nuisance level and not at the problematic level.

It has never fluctuated wildly, but it did fluctuate more in the first months. The pattern there was usually that it was very low when I woke up, and then it grew louder over the day.

Yes, it's at a manageable level......sort of......it's never been loud, but still bothersome as it's really high pitched, and I can hear it over most everyday noises. My tinnitus settled on the bothersome level, not the low one sadly.

 

[DWoods.]

Since your T is random, but consistent, as is mine, I was wondering if you are able to do some phase cancelling of outside noises with your T, since you have a dip at 6Khz. I was able to use a PC and tone generator program to find at 6340 to 6350 Hz my T fully cancels out a signal from my PC speakers when facing the PC head-on. When turning my head sideways, either ear can hear the tone being generated by the PC's speakers. I haven't gotten my T mapped yet for amplitude and frequency, but a clinician in Sherman Oaks finds this interesting, implying some cancellation of the T might be possible by using varied phasing testing. Does anyone know if any vascular vessels near the inner ear or auditory nerves carry this frequency?

 

[Lilah]

Mine is random I guess. I have loud tinnitus in both ears and sometimes it is louder in my left ear and sometimes in my right. Volume/intensity also random. Sometimes I've have a day with lots of fleeting tinnitus, chirps, and more change in pitches. A few nights ago, I woke up in the middle of the night with louder tinnitus of a different pitch; it was a different sound that I could not sleep, but that sound went away. Mine is somatic. It could be noise-induced too since I have mild hyperacusis sometimes.

 

[JohnAdams]

Total opposite. I can predict when my tinnitus will be high, low, or gone. I get all hopeful when it goes away completely.

 

[John Mahan]

Mine started 4 months ago. I just woke up at 2am and it was full out rocking. Never had any experience with it prior. No exposure to noise, no drug, not apparently sick though the ENT's guess was that I had a viral event. Hearing is OK, except for a dip to ~45 at 6000.

I get all kinds of noises, my right is normally a steady high pitched tone, while my left crickets and pops and hisses. When it gets like that my right seems almost sympathetic to the sounds of my left and I just hear them all over my head.

When it is lower, still audible but lower, I experience it as a hiss.

Yes it is somatic.

But yeah it seems to have no correlation with anything.

Yours?

Mine happened out of nowhere too and my audiologist believes I too had a viral event in my brain.
My tinnitus is a rollercoaster like yours from mild to loud. It changes all the time. But mine is heavily influenced by sleep and what I presume are cortisol levels. I have somewhat correlated my bad dreams to my worst T.

A very perplexing disorder and why so much uncertainty on the forum. Some however have pretty much a straight line tinnitus. For something given the same name it can take on many different forms.

 

[AfroSnowman]

@John Mahan Since you have been doing this for longer than i have and seem to report similar random tinnitus, how do you modify your life, if at all?

I have taken to being wary of loud noises ( I carry around ear plugs just in case) but I'm honestly not certain if there is any sense to that as I am just as likely to have a good day as bad after being in a loud environment. Likewise I am far more unlikely to take any NSAID than I used to be, but I have no actual cause/effect experience to justify it.

By nature I am a risk taker with a high tolerance to pain and consequences and I am hoping as time goes on to embrace a who gives a hoot attitude toward this and let the chips fall where they may, but for right now I am a bit more circumspect as I gather more evidence on how my T evolves or not.

 

[John Mahan]

@John Mahan Since you have been doing this for longer than i have and seem to report similar random tinnitus, how do you modify your life, if at all?

I have taken to being wary of loud noises ( I carry around ear plugs just in case) but I'm honestly not certain if there is any sense to that as I am just as likely to have a good day as bad after being in a loud environment. Likewise I am far more unlikely to take any NSAID than I used to be, but I have no actual cause/effect experience to justify it.

By nature I am a risk taker with a high tolerance to pain and consequences and I am hoping as time goes on to embrace a who gives a hoot attitude toward this and let the chips fall where they may, but for right now I am a bit more circumspect as I gather more evidence on how my T evolves or not.

A good post afro and good questions. I too have a bit of a risk taker gene. But I also have a logical mind that reels me in too. But when I was young, I constantly raced cars and motorcycles and was in countless crashes and shouldn't be here really. I have had a fun life. My parents were concerned about me.

Like many, I make mental notes all the time about the status of my tinnitus. We monitor its level with our brain of course and decide what kind of an impact its taking. I had a rather rare occurrence for me last evening when I was hanging out watching the US Open tennis tournament. My tinnitus went to perhaps its lowest volume since I contracted it. Almost inaudible. This almost never happens to me. Low tinnitus for me is generally a background hiss of 3 or more. This was a 1 out of 10. Virtually never happens. But...I knew not to expect it to last because my tinnitus is so variable and in particular affected by sleep. I have rather turbulent dreams. I have a pretty vivid imagination anyway. When my dreams are wild and like a suspense novel which they often are, my T can spike as it many times can through the night if I happen to wake up. I didn't sleep badly last night but when I woke up vaguely remembering my rather wild dream, my tinnitus was once again kind of loud. This is common for me. I many times wake up to loudish T. Now, I somewhat expect or at least hope that my tinnitus will fade a bit during the day. Or at least I get used to it more but sometimes it gets better. But sometimes it gets worse for no apparent reason and I think to myself, man, I hope this doesn't last very long. It generally doesn't. Up and down like a rollercoaster.

So how do I cope? Acceptance and hope. Yes, its a PITA as it is for everybody but I pretty much live my life. Because I have some sound sensitivity, I tend to avoid really loud places or if must go, I wear foam ear plugs. For example I am going to a big party on Sunday and will bring some. No live music I know of though.

Acceptance can be loose term also referred to as habituation. Some times my tinnitus can be moderate and tune it out if focusing my mind elsewhere. Sometimes my tinnitus is too demanding and demands more of my attention. I am generally helped if at that point I go cycling or swimming where ambient noise drowns it out. Air rushing past my ears...I am a fast cyclist and shredding the water...the sound of the water rushing past is almost perfect masking for my hiss type of tinnitus. I rarely think about my tinnitus on the bike or in the water. My escape and love to both with friends and a big high anyway. Win/win.

As to hope, I believe hope will come in the form of therapy like bi-modal stimulation and FX-322 or something else....and I believe now I can do the time in prison. You may have heard what can keep people going in prison. Hope they will be freed one day. Hope is a really good thing to have for each of us.

Meanwhile, tinnitus has tauught me to not be as plussed about life. If you think about it, many people obsess about something in their life from money to heart health. Will my stomach bother me today? My knee feels creaky and maybe I shouldn't go for the run. My back is too sore to lift that. A lot of this leads to avoidance behavior...sometimes an excuse. Tinnitus for people like us is the most bothersome back...or a heart we don't trust because a father or brother died of a heart attack. Perspective.

So as I hear my tinnitus right now as I type this, its louder than it was last night by 2-3 tens out of ten. Sometimes I didn't notice it as I type this. So for me, I come in an out of habituation but when loud tinnitus is hard for me to deal with but hope keeps me going to know that for my particular case, it always seems to quiet down eventually. When my tinnitus is moderate, I am pretty ok and in those extremely rare instances my tinnitus is low, I think, man...that's how it used to be for me every minute of every day. My hearing was so good. One of the best things about me. I never thought about tinnitus or even knew much about it and believed it was for people that weren't as healthy as me. I have been very healthy my whole life.

I hope this helps and maybe even gives you a perspective to help you. Acceptance on some level that we are no longer perfect and that help will come to make us better.

My thoughts. You being new to it, I believe as most do, you will learn to accept your tinnitus with all its faces on some level...and I wish you hope that one day each of us will be helped as I suspect most of us will be helped in 10 years and some and maybe me and you in as little as 2 years because my tinnitus type is a candidate for bi-modal stimulation which may remap my brain on some level.

 

[AfroSnowman]

Thanks @John Mahan for your long and thoughtful response.

I am settling into a similar head space was you described. I have hit something approximating habituation, especially when it is moderate or mild there are even minutes when occupied that I don't actively hear it. Where before it was bothersome 100% of the time, now maybe it is 50% of the time and less than a quarter of the time that it significantly impacts my ability to concentrate and my patience. I don't shed tears anymore about it anymore, not to say there won't be an off day sometime that I will engage in a little ear leakage. Hopefully though those days are behind me.

Annoyingly today is a bad day, but happily tomorrow might be better.

cheers and thanks

 

[John Mahan]

Thanks @John Mahan for your long and thoughtful response.

I am settling into a similar head space was you described. I have hit something approximating habituation, especially when it is moderate or mild there are even minutes when occupied that I don't actively hear it. Where before it was bothersome 100% of the time, now maybe it is 50% of the time and less than a quarter of the time that it significantly impacts my ability to concentrate and my patience. I don't shed tears anymore about it anymore, not to say there won't be an off day sometime that I will engage in a little ear leakage. Hopefully though those days are behind me.

Annoyingly today is a bad day, but happily tomorrow might be better.

cheers and thanks

Sorry about your loud day today. Mine is medium loud today but not screaming loud. I do have my bottle of benzo's as support to bring me down off the ledge when my tinnitus screams for reasons I can't identify. Something to consider. Even big strong guys can use a security blanket because this condition reduces us to children in some ways.

Feel better and hopefully help comes for us. I frankly like many am surprised there isn't a pharma approach or surgery right now to quiet the noise. I believe for sure 5-10 years out there will be big help...maybe within a couple of years with the bi-modal machine.

 

[AfroSnowman]

Sorry about your loud day today. Mine is medium loud today but not screaming loud. I do have my bottle of benzo's as support to bring me down off the ledge when my tinnitus screams for reasons I can't identify. Something to consider. Even big strong guys can use a security blanket because this condition reduces us to children in some ways.

Feel better and hopefully help comes for us. I frankly like many am surprised there isn't a pharma approach or surgery right now to quiet the noise. I believe for sure 5-10 years out there will be big help...maybe within a couple of years with the bi-modal machine.

I'm on the waiting list for Lenire and they tell me to expect an appointment in early 2020, so I have at least the hope of relief within a half year or so. Just enough time to really get good at having tinnitus. I figure it is a good opportunity to improve my skills and attitude in dealing with all the unfun health consequences I'll have from living a long life.

 

[John Mahan]

I'm on the waiting list for Lenire and they tell me to expect an appointment in early 2020, so I have at least the hope of relief within a half year or so. Just enough time to really get good at having tinnitus. I figure it is a good opportunity to improve my skills and attitude in dealing with all the unfun health consequences I'll have from living a long life.

Best news ever you will be doing the Lenire protocol. To me, it makes a lot of sense it works... since they have identified how particular neurons get 'in phase' with their cross talk and how it is possible to break this chatter up by alternative sound and stimuli.

I am in the US and will be in line for either the Shore device or...a good reason to take a trip to Europe for an extended vacation at some point. Have been there before. I as well as legion of others will listen very carefully to those that are helped by the Lenire device and the Susan Shore device as well...as each relates to particular tinnitus type. Based upon my reading, I appear to be a candidate as well with somatic and hyperacusis form of tinnitus.

All of us are excited about some opportunity for relief. One bit of frustration in terms of getting feedback for each device is...there seems to be secrecy surrounding the trialing of each device. Understandable to not bias and current/future trialing...but participants can't share their experience with the larger community of tinnitus suffers by proclaiming help is on the way for many which seems preliminary reports suggest.

Please share your results with us I am sure you will. Something to really look forward to.

Best to you.