Tinnitus Very Loud Anytime I'm on Edge of Sleep — Much Louder Than When Awake

[GBB]

Not sure why this is, but if I'm dozing off during the day (at night I use medication), or try to go back to sleep in the morning after initially waking up - my tinnitus becomes extraordinarily loud and intrusive, and basically completely prevents me from sleeping.

Does this happen or did this happen to anyone else in the beginning?

My tinnitus is really dynamic so I don't have just one sound, but when about to sleep it reaches a level I never experience when waking otherwise...

 

[musicblue]

Yes exactly the same for me. Mine is like a steam kettle in the centre of the head and lasts for around 45 mins. The only way I can cope is to mask it with some frequency noise and try to fall back to sleep as quick as possible, or not nap anymore.

Tbh this is one of the most cruelest parts of this hell as you can't even just use naps as a form of short release. I am deeply concerned that this will remain and again can not fathom how a life can be fully fulfilled without naps or short sleeps.

 

[Lilah]

Not sure why this is, but if I'm dozing off during the day (at night I use medication), or try to go back to sleep in the morning after initially waking up - my tinnitus becomes extraordinarily loud and intrusive, and basically completely prevents me from sleeping.

Does this happen or did this happen to anyone else in the beginning?

My tinnitus is really dynamic so I don't have just one sound, but when about to sleep it reaches a level I never experience when waking otherwise...

Are you using sound enrichment? I find that using pink noise keeps my tinnitus from getting louder on the edge of sleep. Without pink noise, I'm still unable to sleep. Without other noise I do think that we "zone in" to our tinnitus as we approach sleep, which makes the tinnitus louder.

 

[Lilah]

Yes exactly the same for me. Mine is like a steam kettle in the centre of the head and lasts for around 45 mins. The only way I can cope is to mask it with some frequency noise and try to fall back to sleep as quick as possible, or not nap anymore.

Tbh this is one of the most cruelest parts of this hell as you can't even just use naps as a form of short release. I am deeply concerned that this will remain and again can not fathom how a life can be fully fulfilled without naps or short sleeps.

I used to nap a lot before tinnitus but I've stopped napping since. I used to be upset about this (not napping) but it doesn't bother me much anymore (except when I see someone else napping and get jealous lol).

 

[GBB]

Are you using sound enrichment? I find that using pink noise keeps my tinnitus from getting louder on the edge of sleep. Without pink noise, I'm still unable to sleep. Without other noise I do think that we "zone in" to our tinnitus as we approach sleep, which makes the tinnitus louder.

I'd like to but right now my tinnitus is quite reactive. If I could mask it would be a game changer! Really hoping the reactivity goes away over time

 

[Aaron44126]

This happens to me. It is worst right when going to sleep, or when I wake up for the first half hour or so. It's actually the worst if I get woken up in the middle of the night for some reason. It's like screaming in my head.

Very annoying at first. Believe me, I get it, I had a lot of messed up sleep early on, for the first few months. I got used to it over time and now it's just normal background noise. Most days I don't even notice it when I wake up. (I never thought that I'd be able to get used to it, and yet I did. Hang in there.)

I've been sleeping with brown noise running since this whole thing started. I find it to be really soothing for sleep and I like it way better than other types of noise as it is not as high-pitched. My goal isn't to mask the tinnitus so much as to just... make it easier to get to sleep in spite of it.

 

[donotringatme]

The same happens to me too. Before Prednisone, it was exactly like that, a steam kettle.

I read some papers on orthostatic and supine tinnitus, they seem to suggest that blood flow and nerves do that, especially those in c1 and c2. One thing I noticed is that lying down worsens my ETD. Before prednisone it was a mess and it seemed to go hand in hand with the tinnitus loudness. I don't know why ETD worsens while lying down on your back but I read that ETD can be caused by GERD too, without really noticing.

 

[GBB]

This happens to me. It is worst right when going to sleep, or when I wake up for the first half hour or so. It's actually the worst if I get woken up in the middle of the night for some reason. It's like screaming in my head.

Very annoying at first. Believe me, I get it, I had a lot of messed up sleep early on, for the first few months. I got used to it over time and now it's just normal background noise. Most days I don't even notice it when I wake up. (I never thought that I'd be able to get used to it, and yet I did. Hang in there.)

I've been sleeping with brown noise running since this whole thing started. I find it to be really soothing for sleep and I like it way better than other types of noise as it is not as high-pitched. My goal isn't to mask the tinnitus so much as to just... make it easier to get to sleep in spite of it.

I will try the brown noise idea. Not sure why the hell this condition is so F'ing brutal...

 

[musicblue]

It's a complete and utter joke. I am severely depressed at how I will cope in so many situations should I ever get myself in them;

air travel - seated and locked in on a plane then I fall asleep as I usually do
Holiday relaxation - beach, hotels etc
Post food and drink naps like xmas

At this stage all of the above are off the cards and even writing this still doesn't seem like its a new reality. (Shaking my head in utter disbelief)

 

[GBB]

It's a complete and utter joke. I am severely depressed at how I will cope in so many situations should I ever get myself in them;

air travel - seated and locked in on a plane then I fall asleep as I usually do
Holiday relaxation - beach, hotels etc
Post food and drink naps like xmas

At this stage all of the above are off the cards and even writing this still doesn't seem like its a new reality. (Shaking my head in utter disbelief)

I feel the same. I keep speaking with the recruiter at my dream firm about extending my offer another 12 months, and every day that goes by without substantive improvement, I resign myself to the fact that I may never start that job - it's so far beyond where I am right now, which is just trying to stay alive. It's why I'm willing to try anything - I either get the volume down or I don't, and I'm not sure how long I can live like this. Literally everything is at stake for me.

I can't understand people with severe symptoms who haven't tried everything to reduce things even a percentage point...

 

[dan]

I can't understand people with severe symptoms who haven't tried everything to reduce things even a percentage point...

Look into Keppra.

Does this happen or did this happen to anyone else in the beginning?

Yes, that's the early stage tinnitus, it spools up when the brain goes to sleep. This should pass soon once your tinnitus establishes a baseline. Like I said, you're still too early in the game... think of it as a welcome to hell initiation, where you get a taste of the worst things about the affliction, sort of like a tinnitus tour of hell.

 

[DominicZ]

@musicblue @GBB
I have exactly the same experience and have given up naps. The tinnitus is loud going in and louder coming out. I'm about 5 months since my tinnitus started from ear wax irrigation. I have noticed some improvement lately in that the intensity is not as loud as 5 months ago and dissipates to a lower baseline that I can tolerate during the day. Cycle repeats itself at night when I go to bed. I find using brown noise helps.

 

[GBB]

@musicblue @GBB
I have exactly the same experience and have given up naps. The tinnitus is loud going in and louder coming out. I'm about 5 months since my tinnitus started from ear wax irrigation. I have noticed some improvement lately in that the intensity is not as loud as 5 months ago and dissipates to a lower baseline that I can tolerate during the day. Cycle repeats itself at night when I go to bed. I find using brown noise helps.

Glad to hear it is at least going down!

 

[Ken219]

I can't understand people with severe symptoms who haven't tried everything to reduce things even a percentage point...

As a 30 year sufferer I can tell you I've tried many drugs to keep alive. Over the years I have had many spikes (relapses) for no reason - just happens. Some say it is from stress but I agree all stressors aren't the same. It takes me 12-18 months to habituate. Two days after hernia surgery my tinnitus spiked so here I go again. . Please give it more time.

 

[GBB]

As a 30 year sufferer I can tell you I've tried many drugs to keep alive. Over the years I have had many spikes (relapses) for no reason - just happens. Some say it is from stress but I agree all stressors aren't the same. It takes me 12-18 months to habituate. Two days after hernia surgery my tinnitus spiked so here I go again. . Please give it more time.

I'm sorry, truly. My statement was not meant to say that all severe sufferers do not try hard enough - I know it's quite the opposite - I only meant that severe sufferers should exhaust all options, and many don't seem interested in trying, in my opinion.

 

[Ken219]

I'm sorry, truly. My statement was not meant to say that all severe sufferers do not try hard enough - I know it's quite the opposite - I only meant that severe sufferers should exhaust all options, and many don't seem interested in trying, in my opinion.

Hi,

My statement was not meant to say that all severe sufferers do not try hard enough. I know you didn't mean to say that. I just thought I'd share from someone who has had tinnitus for 30 hellish years.

Ken

 

[GBB]

Look into Keppra.

Yes, that's the early stage tinnitus, it spools up when the brain goes to sleep. This should pass soon once your tinnitus establishes a baseline. Like I said, you're still too early in the game... think of it as a welcome to hell initiation, where you get a taste of the worst things about the affliction, sort of like a tinnitus tour of hell.

I think I will try Keppra. My biggest issue is my tinnitus is very reactive. If I sit in silence it is quieter. I if do anything like watch TV I immediately get weird scratchy squeaks that accompany everything - it is effectively a distortion of EVERYTHING I hear, and I can't live like this.

Do you know of anyone who got rid of their distortion/reactivity completely?

 

[dan]

I think I will try Keppra. My biggest issue is my tinnitus is very reactive. If I sit in silence it is quieter. I if do anything like watch TV I immediately get weird scratchy squeaks that accompany everything - it is effectively a distortion of EVERYTHING I hear, and I can't live like this.

Do you know of anyone who got rid of their distortion/reactivity completely?

Not personally but I read of numerous accounts on this forum...

 

[GBB]

Are you using sound enrichment? I find that using pink noise keeps my tinnitus from getting louder on the edge of sleep. Without pink noise, I'm still unable to sleep. Without other noise I do think that we "zone in" to our tinnitus as we approach sleep, which makes the tinnitus louder.

When you say enrich, do you mean enrichment as in beneath tinnitus levels, or masking? I have started to do the latter which I understand may be a sin...

 

[Lilah]

When you say enrich, do you mean enrichment as in beneath tinnitus levels, or masking? I have started to do the latter which I understand may be a sin...

Just beneath tinnitus levels (I can still hear tinnitus a bit), but sometimes I do mask.

 

[donotringatme]

It isn't louder, it's the same pitch. I also mistakenly thought it gets louder because of supposedly irritating / suppressing my sub-occipital etc. It is literally the same pitch. We are, sadly, fixated at it all day (even at times that we think we are not, the mind races) and at night the fixation amplifies and the mind races more. How on earth are we supposed to sleep haha.

The nervous system has to calm down. I've read that the shock we go to after tinnitus onset isn't so innocent. We can get some serious nervous damage from it. Chronic insomnia is there and it's much worse than tinnitus. I've had 40 days so far of almost no deep sleep. Perhaps 10 hours of deep sleep total. My eyes are messed up, my body signals it's had enough. I've fixated on it, learning a ton of information about tinnitus and made it by 24/7 matter with very short breaks. That's why my nervous system is absolutely fkd. Now I got appointment to psychotherapist and will focus on recovery. We don't have that loud tinnitus, any tinnitus sufferer with objectively loud one, would tell us to fk off (pardon my swearing).

I think I need a good break from this forum and a serious rehabilitation. My stepdad has tinnitus since he was 15, loud one, actual loud af one. He sleeps absolutely normally no problem whatsoever. While I understand that tinnitus from ETD or TMD or muscle issues all have to be monitored and fixed, what we need to focus on is sleep. Getting sleep back is our priority.

@GBB I don't know where you live and what your situation is mate but your nervous system is the only way you can't sleep so you gotta focus on it. I wish you the best, just wanted to post my thoughts.

 

[Ava Lugo]

I think I will try Keppra. My biggest issue is my tinnitus is very reactive. If I sit in silence it is quieter. I if do anything like watch TV I immediately get weird scratchy squeaks that accompany everything - it is effectively a distortion of EVERYTHING I hear, and I can't live like this.

Do you know of anyone who got rid of their distortion/reactivity completely?

Yeah I have that too and it's a living hell and yet there's a lot of people that have really mild tinnitus who say they don't hear their tinnitus during the day but they still complain but they can watch tv and listen to music with no issues... they should walk in our shoes.

 

[musicblue]

So earlier this week I was slightly down and lethargic due to this whole problem and so I started to feel very tired around 3pm. My first instinct was to take a nap and then I realised what this can do to me and I started remembering all the horrible loud sounds I used to awake too. Then I thought, fuck it, I'm going to have a nap and take whatever comes when I wake up. I'm tired and it's my body and this will also be a chance to see if things have changed in 8 weeks or so. So I had a nap from 3-4pm (set my alarm to wake up) and I literally woke up to the same regular tinnitus...no crescendo blasting tea kettle sound that would awaken me like a fire alarm all over the summer. Since then I've had another nap and it was the same outcome.

These naps have been prepared by me getting into bed and making the room dark as though it was a proper sleep, so it may be that this has helped some way in tricking my brain perhaps.

I have yet to fall asleep for 10 mins and then wake up so this will be the next big test.

Obviously this can all change as it's tinnitus but just thought I would say to anyone who does feel tired don't be afraid to give it a go after x amount of time, especially if your T is new like mine. For me over the last 8 weeks, I have been particularly concerned that I was consciously creating a negative feedback loop in my brain in this area, whereby I would fear and resent falling to sleep during the day. Then, if I were to accidentally fall asleep, this would raise my T level upon waking due to the anxiety I felt about it.

Very glad I did this test and I as I say, I will do a smaller nap test to also see if this has changed.

I hope everyone else here sees some improvement in this area however small or large.

 

[GBB]

Look into Keppra.

Yes, that's the early stage tinnitus, it spools up when the brain goes to sleep. This should pass soon once your tinnitus establishes a baseline. Like I said, you're still too early in the game... think of it as a welcome to hell initiation, where you get a taste of the worst things about the affliction, sort of like a tinnitus tour of hell.

It did stop doing this, thankfully, though I still have plenty of problems.