Fluctuating (Pitch, Quality, Loudness) Unilateral Tinnitus — Part of the Challenge Is Sleep Apnea

[Joe Cuber]

That's strong of you to abstain from medication. I hope one day to be able to cope without any. I know it'll take time for me to get there... and education. I'm learning about cognitive behavioral therapy and DBT. I'm hoping that helps.

 

[Uklawyer]

@Joe Cuber, I am still using medication, just don't like it!

I don't think the Evora is right for me. It leaks and leaves a big mark on my head.

How is your P10 working out? I was looking at the Swift FX, but it seems like it is very noisy (cf the P10). Is the headband ok? Do you have the clips to adjust?

 

[Joe Cuber]

I am still using medication, just don't like it!

Oops, I got the impression that you weren't, my bad.

I don't think the Evora is right for me. It leaks and leaves a big mark on my head.

Leaks are annoying. Big marks on head, also annoying.

How is your P10 working out? I was looking at the Swift FX, but it seems like it is very noisy (cf the P10). Is the headband ok? Do you have the clips to adjust?

P10 is still working out just fine for me. The headband is pretty thin and minimal. It doesn't require a lot of tension to keep the nose pillows from leaking, so a lot less likely to leave any marks at all. It has one clip to make tightness adjustments. The clip is either on your left or your right depending on how you attach the headband to the mask.

The chin strap is not working out. I switched to using mouth tape instead of the chin strap to keep my mouth closed. This has been working well for me.

 

[Uklawyer]

@Joe Cuber, how's the tinnitus and the sleep apnea?

 

[Joe Cuber]

@Joe Cuber, how's the tinnitus and the sleep apnea?

Heyy there @Uklawyer! Well, I have my sleep apnea well under control. I get about 2 apneas/hour and manage to keep my leaks below 20 L/min most nights. My pressure settings are 8.6 - 12.4.

Trying to remove as many stressors as I can has been my strategy. And lots of exercise. And good sleep hygiene. And better diet. And meditation. And practicing acceptance. Acceptance has been a huge game-changer for me. I've managed to make my anxiety response so much lower.

I still have my tinnitus. It still fluctuates by the day. On one day, off another, in the random way that it's been all along. I am getting more good days than bad now. Before, it was the other way around

I've learned one important trick: I meditate each morning for about 20-30 minutes. I do it right when I wake up. I don't even get out of bed, just meditate lying there. Sometimes--not always--I turn a bad day into a good day. So, as I'm meditating, the loud hiss evaporates, and it stays that way for the rest of the day.

How's it been for you? Is your new machine working out better for you? I'm still using the P10, but I'm thinking of switching to the F30. I can't manage to keep my mouth shut on my own. I resort to using mouth tape gratuitously to keep my mouth from leaking. It's ghastly.

 

[Uklawyer]

Heyy there @Uklawyer! Well, I have my sleep apnea well under control. I get about 2 apneas/hour and manage to keep my leaks below 20 L/min most nights. My pressure settings are 8.6 - 12.4.

Trying to remove as many stressors as I can has been my strategy. And lots of exercise. And good sleep hygiene. And better diet. And meditation. And practicing acceptance. Acceptance has been a huge game-changer for me. I've managed to make my anxiety response so much lower.

I still have my tinnitus. It still fluctuates by the day. On one day, off another, in the random way that it's been all along. I am getting more good days than bad now. Before, it was the other way around

I've learned one important trick: I meditate each morning for about 20-30 minutes. I do it right when I wake up. I don't even get out of bed, just meditate lying there. Sometimes--not always--I turn a bad day into a good day. So, as I'm meditating, the loud hiss evaporates, and it stays that way for the rest of the day.

How's it been for you? Is your new machine working out better for you? I'm still using the P10, but I'm thinking of switching to the F30. I can't manage to keep my mouth shut on my own. I resort to using mouth tape gratuitously to keep my mouth from leaking. It's ghastly.

@Joe Cuber, that sounds like excellent progress - on both fronts!

It sounds like you are really taking the bull by the horns and practicing a number of great strategies to help you. It's great that you can meditate and feel like it influences the tinnitus percept - it suggests that, at some level, you are mastering it - which is great.

Good scores on the apnea events too. I got down to 1.6 last night, but generally hover between 2 and 5. Yet I am still exhausted. Sometimes it still annoys me going to bed. I am still thinking of trying the P10 or the Brevida. I would like something as light as non-invasive as possible (but also something that can stay in place pretty well when side-sleeping).

Were you tired before with the apnea? Any improvement in energy levels?

Best

 

[Joe Cuber]

@Joe Cuber, that sounds like excellent progress - on both fronts!

It sounds like you are really taking the bull by the horns and practicing a number of great strategies to help you. It's great that you can meditate and feel like it influences the tinnitus percept - it suggests that, at some level, you are mastering it - which is great.

Good scores on the apnea events too. I got down to 1.6 last night, but generally hover between 2 and 5. Yet I am still exhausted. Sometimes it still annoys me going to bed. I am still thinking of trying the P10 or the Brevida. I would like something as light as non-invasive as possible (but also something that can stay in place pretty well when side-sleeping).

Were you tired before with the apnea? Any improvement in energy levels?

Best

Hey thanks, I'm trying hard

Yes, I used to often feel tired and low energy before. I have seen improvements in my energy level. I feel I've been sleeping through the night more often. I'm not getting any more sleep then I used to overall--I typically get 6 to 6.5 hours a night, but I think I sleep more deeply.

I use an Oura ring to track my sleep. Do you track your sleep? I get data like how much deep sleep and REM sleep I get and when during my sleep.

 

[Uklawyer]

Yes, I used to often feel tired and low energy before. I have seen improvements in my energy level. I feel I've been sleeping through the night more often

Great. I do not track my sleep, though it may be helpful with my ME. I had a look at the Oura Ring. Looks good - though people don't seem to be happy having to pay to obtain the data on a subscription basis.

 

[Joe Cuber]

I had a look at the Oura Ring. Looks good - though people don't seem to be happy having to pay to obtain the data on a subscription basis.

Yeah the subscription sucks. I'm still in the 3-month free membership, and apparently I can download all the data from the web even without membership. I should see what the data looks like downloaded. Maybe that would be good enough for me.

 

[Uklawyer]

Yeah the subscription sucks. I'm still in the 3-month free membership, and apparently I can download all the data from the web even without membership. I should see what the data looks like downloaded. Maybe that would be good enough for me.

Hey, I see you have been conversing with @Greg Sacramento - can you tell me on which thread this is happening?

And how's the sleeping? I have stopped my CPAP for a couple of days as I have been having a blocked ear with pressure for a good while now. I am wondering whether the CPAP therapy is causing an increase in pressure in my Eustachian Tubes. Tinnitus is worse too unfortunately - seemed to happen when I decided to stop the Amitriptyline that I had been trying for a couple of weeks.

If I do carry on with the therapy I'll probably try the N30. Think I need to see an ENT about this pressure, but no appointments available right now unless I can find another doc. All very frustrating.

Best wishes.

 

[Joe Cuber]

Hi there @Uklawyer, thanks for checking in. Yup, I've been conversing with Greg on this thread. He's been helping me diagnose whether my tinnitus is related to issues with my neck and/or skull.

Sleeping for me has been so-so. For some reason, I'm not sleeping as much each night than before. I'm averaging less than 6 hours/night recently. It's affecting my day-time alertness and makes my tinnitus more squirrelly when I hear it.

I can see how having positive airflow might interact with your Eustachian tubes. I'd be inclined to stop too if I was experiencing blockage.

I hope your tinnitus dies down soon. Changing meds seems to affect to be one of those things that can spike tinnitus.

Ah, the N30, I hadn't really looked into this mask. That's interesting, it's a cradle vs. nose pillows. It looks like it's better for people who move about while sleeping, which I do. I've noticed that the nose pillows don't maintain a good seal when I roll over. I might have to consider the N30 too, thanks for the tip.

Yeah, what's up with getting an ENT appointment. Is there a way you can see a private ENT?

 

[Uklawyer]

Hi there @Uklawyer, thanks for checking in. Yup, I've been conversing with Greg on this thread. He's been helping me diagnose whether my tinnitus is related to issues with my neck and/or skull.

Sleeping for me has been so-so. For some reason, I'm not sleeping as much each night than before. I'm averaging less than 6 hours/night recently. It's affecting my day-time alertness and makes my tinnitus more squirrelly when I hear it.

I can see how having positive airflow might interact with your Eustachian tubes. I'd be inclined to stop too if I was experiencing blockage.

I hope your tinnitus dies down soon. Changing meds seems to affect to be one of those things that can spike tinnitus.

Ah, the N30, I hadn't really looked into this mask. That's interesting, it's a cradle vs. nose pillows. It looks like it's better for people who move about while sleeping, which I do. I've noticed that the nose pillows don't maintain a good seal when I roll over. I might have to consider the N30 too, thanks for the tip.

Yeah, what's up with getting an ENT appointment. Is there a way you can see a private ENT?

Thanks @Joe Cuber - hope you get to the root of it.

Hmm - strange about your sleep. Has it always been like this since starting CPAP therapy or is it more recent? Is it just waking up after x hours of sleep or is there waking up in the night or difficulty getting to sleep?

Thanks for the good wishes - I hope these new tones leave my perception too. I think, at least, that my clogged ear sensation is slowly getting better.

N30 might be an option for you - though some people have said that it can move around too if you are an active sleeper. If you are an active sleeper and don't mind the possibility of a little extra volume, the N30i might be a good choice - hose at the top allows for maximum movement and so no tubing coming out of the front. But the air runs from the top down the side of each side of the face - whence the potential sound issue. It annoyed me a bit, but i liked the freedom (I have the Philips Dreamwear, but think the N30i might be better as quieter air expulsion at the front and, apparently, the nasal cradle stays in place a bit better).

In France, there is no distinction between public and private for that sort of stuff. Plus, if I choose someone, it's pot luck - I know nothing of reputation or competence. I tried today to call the hospital for an appointment to test ear pressure and they just rung off - can't even talk to anyone!

 

[Joe Cuber]

Hmm - strange about your sleep. Has it always been like this since starting CPAP therapy or is it more recent? Is it just waking up after x hours of sleep or is there waking up in the night or difficulty getting to sleep?

Hey there @Uklawyer, it's been more recent. I was getting better sleep a couple of weeks ago. Lately I haven't been working out as regularly and I have also been using my computer and phone later into the night. I still fall asleep and stay asleep fine, I just happen to wake up earlier, so I get about 5 hours a night lately.

I'm going to have to try the N30 or N30i. It doesn't hurt to give it a go and see if it works better. Thanks for the tips.

Man that must be so frustrating not being able to get an appointment with the doctor.

Hope your new tones die down. My tinnitus has been beating me up these past couple of days. I can tolerate it more the days, but it still irks me and wears me out.

Cheers!

 

[Joe Cuber]

I wanted to update my progress here a bit in part to document some of the stretches my osteopath has assigned me, since @Strawberryblonde said that it would help to hear about the stretches that I've been doing.

One of the major symptoms I have been experiencing that is correlated with my bad days is neck soreness/stiffness. My osteopath has instructed me to do these stretches to help counteract the slouching and forward-head posture that I have. My osteopath wants me to do these a 2-3 times a day.

I haven't noticed any overt improvements in doing these stretches, but that's mostly because I haven't been trying to monitor my tinnitus too closely. I'm glad to do these as I think they are good for me anyway.

Lats:



Pec major:



Pec minor #1:



Pec minor #2:



Neck/traps:



Abs/diagram (do with deep breathing):



Wall angles:

 

[Joe Cuber]

As I am now 9 months since onset, I wanted to give an update on my condition, especially because I've learned a key clue on how my tinnitus manifests itself.

TL;DR to cut to the chase: I can sometimes control my intrusive tinnitus component down to silence.

A brief background on my tinnitus, explained after 9 months of experience:

I have two components to my tinnitus, an intrusive, non-reactive, unilateral hiss/squeal in my right ear and a mild reactive whistle in both ears. The reactivity used to be severe around the 2 to 4 months post onset, and then diminished in strength afterwards. I credit the reduction to sound therapy/sound enrichment. I can explain my reactivity journey in more detail if anyone cares, but the thing I wanted to describe in this post is what I've learned about my unilateral component.

I mentioned this several times on different threads, but the most striking thing about my right-ear tinnitus is that I don't have it every day. On some days, it's quite a loud hiss or squeal, typically multi-tonal, like someone frantically tuning a radio. Other days it's a mild hiss/squeal. And other days it's silent. It's pretty much one of these three states. Whatever I wake up to is what I consistently get for that entire day. It rises slightly in intensity in the afternoon and diminishes in the evening, but otherwise it remains a consistent intensity the entire day. Currently, it's about evenly split: 1/3 of the days it's loud, 1/3 mild, 1/3 silent.

Here's what I've learned:

My unilateral tinnitus ramps up while I'm dreaming. I know this because I've woken up at various times in the night for whatever reason, and, if I wake up when I'm not dreaming, I don't hear it. But if I wake up while I'm dreaming, then I hear it ramping up in intensity.

I don't know if it's neurological or if it's physical, like maybe based on sinuses, inflammation, cerebrospinal fluid, or muscle tension. On my bad days, I tend to feel tender at my skull joints near my right ear and I have a stiff neck/traps on the right. Another thing to mention is I have sleep apnea; despite having a CPAP machine, I still get airway blockages, which happens more frequently during REM sleep.

What I do know is, if I wake up while it's ramping up, I can sometimes calm it down. I do this by rolling onto my right side with my right arm extended out in front of me, and I lie there and meditate.

If I'm unlucky and don't catch it in time, I get the noise for the rest of the day. But if I'm lucky, the tinnitus subsides from its fervent cacophony to silence. It'll stay silent for the rest of the day as long as I stay awake. If I decide to fall back asleep, I risk it all over again.

TL;DR recap: My tinnitus ramps up while I'm dreaming, and I can sometimes stop it if I wake up in time.

(Looping in @Jsm_Joestar, since we were chatting about this.)

 

[Jsm_Joestar]

Very interesting @Joe Cuber. It's good that you found out about this because you might be on to something in your case. Reading this, I suspect it has something to do with brain activity but I'm not sure. You also mentioned having sleep apnea so your blocked airways could also have something to do with it. Keep us updated on it. I hope you can improve this technique for even better results or maybe you could find something else that also works.

 

[Joe Cuber]

Thanks for the reply @Jsm_Joestar, I will update when I learn more. I wouldn't be surprised if it's brain-related since it's so off and on. It's slow-going finding patterns in the behavior because I have to wait until I sleep to see what outcome I get if I want to, say, try different sleeping positions.

 

[DeanD]

As I am now 9 months since onset, I wanted to give an update on my condition, especially because I've learned a key clue on how my tinnitus manifests itself.

TL;DR to cut to the chase: I can sometimes control my intrusive tinnitus component down to silence.

A brief background on my tinnitus, explained after 9 months of experience:

I have two components to my tinnitus, an intrusive, non-reactive, unilateral hiss/squeal in my right ear and a mild reactive whistle in both ears. The reactivity used to be severe around the 2 to 4 months post onset, and then diminished in strength afterwards. I credit the reduction to sound therapy/sound enrichment. I can explain my reactivity journey in more detail if anyone cares, but the thing I wanted to describe in this post is what I've learned about my unilateral component.

I mentioned this several times on different threads, but the most striking thing about my right-ear tinnitus is that I don't have it every day. On some days, it's quite a loud hiss or squeal, typically multi-tonal, like someone frantically tuning a radio. Other days it's a mild hiss/squeal. And other days it's silent. It's pretty much one of these three states. Whatever I wake up to is what I consistently get for that entire day. It rises slightly in intensity in the afternoon and diminishes in the evening, but otherwise it remains a consistent intensity the entire day. Currently, it's about evenly split: 1/3 of the days it's loud, 1/3 mild, 1/3 silent.

Here's what I've learned:

My unilateral tinnitus ramps up while I'm dreaming. I know this because I've woken up at various times in the night for whatever reason, and, if I wake up when I'm not dreaming, I don't hear it. But if I wake up while I'm dreaming, then I hear it ramping up in intensity.

I don't know if it's neurological or if it's physical, like maybe based on sinuses, inflammation, cerebrospinal fluid, or muscle tension. On my bad days, I tend to feel tender at my skull joints near my right ear and I have a stiff neck/traps on the right. Another thing to mention is I have sleep apnea; despite having a CPAP machine, I still get airway blockages, which happens more frequently during REM sleep.

What I do know is, if I wake up while it's ramping up, I can sometimes calm it down. I do this by rolling onto my right side with my right arm extended out in front of me, and I lie there and meditate.

If I'm unlucky and don't catch it in time, I get the noise for the rest of the day. But if I'm lucky, the tinnitus subsides from its fervent cacophony to silence. It'll stay silent for the rest of the day as long as I stay awake. If I decide to fall back asleep, I risk it all over again.

TL;DR recap: My tinnitus ramps up while I'm dreaming, and I can sometimes stop it if I wake up in time.

(Looping in @Jsm_Joestar, since we were chatting about this.)

Hi @Joe Cuber - I used to have the exact same thing.

Sleep and dreams influenced my tinnitus. It used to be a case where sleep or just before entering sleep would reduce the overall tinnitus, unfortunately now it increases it.

Since worsening I have lost some of this ability, but like you, if I wake and find an intrusive tone, I can meditate or deep breath to reduce and eliminate it sometimes.

It doesn't help with all the tones but the lower pitched ones it seems to.

Out of curiosity, do you feel your eyes have any type of somatry influence over your tinnitus - for example seeing something that may make you jump or surprise you ramps up the tinnitus for a fraction of a second?

 

[Joe Cuber]

Sleep and dreams influenced my tinnitus. It used to be a case where sleep or just before entering sleep would reduce the overall tinnitus, unfortunately now it increases it.

Sorry to hear that @DeanD. I know you've been dealing with drastic changes in your tinnitus and sleep has been a challenge for you. Do you know the cause of these changes?

Since worsening I have lost some of this ability, but like you, if I wake and find an intrusive tone, I can meditate or deep breath to reduce and eliminate it sometimes.

That's great that you're able to do this. How often are you successful? I'm finding about 50-50 in my case, and it depends on how long I've been sleeping. The longer I sleep, the less successful I am.

Out of curiosity, do you feel your eyes have any type of somatry influence over your tinnitus - for example seeing something that may make you jump or surprise you ramps up the tinnitus for a fraction of a second?

Yes, actually. I can modulate the pitch of my tinnitus by moving my eyes around, even just a little bit. It sounds like lightsabers when I do it, Vwwwrrr, vwwwrrr, vwwwwrrrr. Can you also?

 

[DeanD]

Sorry to hear that @DeanD. I know you've been dealing with drastic changes in your tinnitus and sleep has been a challenge for you. Do you know the cause of these changes?

Unfortunately not @Joe Cuber, I have been to ER and spent the day there. They did a CT scan and blood tests but nothing showed as being out of the ordinary. I did a full eye test at eye hospital but all clear. I saw a neurologist last week - he has ruled out brain damage and intracranial hypertension. Waiting on results of extended blood tests and follow-up appointment.

Sleep is bad though. The tinnitus loudness is now extreme but it's not even that, as I fall asleep, I get bad heart pain, numbness and tremors and instantly wake - every single time. It's been happening for a month now.

It happens with natural sleep, sleeping pills (Promethazine) and even now Melatonin. Only thing that allows sleep is Zopiclone, but that's bad sleep and I feel terrible the next day.

I thought it may have been sleep apnea, and my body forcing itself to wake up, but it doesn't seem to do this on Zopiclone.

That's great that you're able to do this. How often are you successful? I'm finding about 50-50 in my case, and it depends on how long I've been sleeping. The longer I sleep, the less successful I am.

Yes, about 50/50, and depends how long I have been sleeping. The shorter the sleep, the better the results - same as you.

Yes, actually. I can modulate the pitch of my tinnitus by moving my eyes around, even just a little bit. It sounds like lightsabers when I do it, Vwwwrrr, vwwwrrr, vwwwwrrrr. Can you also?

Exactly the same. I am having eye pressure and pain, yet eye test came back normal.

The more tired I am, or when I have just woke up, the worse it is, but yes similar with the vwwrrr vwwrrr lightsaber effect on tinnitus when moving my eyes.

No idea what this is!

I did read up this is also called eye zaps, and can happen with some medication, or withdrawing from some medication.

 

[Joe Cuber]

I get bad heart pain, numbness and tremors and instantly wake - every single time. It's been happening for a month now.

@DeanD, these sound like symptoms of high anxiety or panic attacks. I feel symptoms like this whenever my anxiety gets too high. Could it be your anxiety causing these symptoms?

Yes, about 50/50, and depends how long I have been sleeping. The shorter the sleep, the better the results - same as you.

Fascinating, you're the first person I've talked to that has this characteristic. My hypothesis on what's going on, in my case at least, is that my tinnitus starts ramping up in my sleep, in my dreams, and the longer I stay asleep, the more it continues to ramp up. If I wake up before it ramps up too far, I can quell it, but otherwise it hits a level where it spikes for the rest of the day.

The more tired I am, or when I have just woke up, the worse it is, but yes similar with the vwwrrr vwwrrr lightsaber effect on tinnitus when moving my eyes.

No idea what this is!

I just figured it was the somatic signal, and somatic tinnitus just responds to it in the same way it responds to neck or jaw movements.

 

[DeanD]

@DeanD, these sound like symptoms of high anxiety or panic attacks. I feel symptoms like this whenever my anxiety gets too high. Could it be your anxiety causing these symptoms?

It's possible although I don't have any anxiety before I sleep, and 1 minute after waking I'm back calm again.

Fascinating, you're the first person I've talked to that has this characteristic. My hypothesis on what's going on, in my case at least, is that my tinnitus starts ramping up in my sleep, in my dreams, and the longer I stay asleep, the more it continues to ramp up. If I wake up before it ramps up too far, I can quell it, but otherwise it hits a level where it spikes for the rest of the day.

Yes this is exactly my thoughts too. Whatever accumulation happens throughout the day changes the tinnitus during sleep.

I just figured it was the somatic signal, and somatic tinnitus just responds to it in the same way it responds to neck or jaw movements.

I guess all things are possible with this damn condition.

 

[Joe Cuber]

It's possible although I don't have any anxiety before I sleep, and 1 minute after waking I'm back calm again.

Huh, yeah, it's hard to say what it is. You mentioned sleep apnea too, which is another reasonable hypothesis. Have you done a sleep study?

Yes this is exactly my thoughts too. Whatever accumulation happens throughout the day changes the tinnitus during sleep.

Yeah I was thinking daytime accumulation and/or stress/anxiety experienced during dreams and/or fluid blockage, like the cerebrospinal cleansing cycle. Tough to tell though.

 

[DeanD]

Huh, yeah, it's hard to say what it is. You mentioned sleep apnea too, which is another reasonable hypothesis. Have you done a sleep study?

I have a few physical symptoms. Sleeping difficulties for a month with either waking the moment I drop off, or waking during sleep but with symptoms such as bad taste in mouth, weak arms and maybe the thought of not breathing causing me to jump out of bed.

I was in hospital yesterday (emergency through ambulance) for suspected heart attack after tightness of chest, throat, swollen tongue and difficulties breathing. ECG and blood tests came back fine.

I had taken Melatonin first time the night before. They gave me 40 mg of Prednisolone in case it was an allergic reaction.

Swollen tongue symptoms back again tonight.

I keep getting checked out but they can't work out what's wrong, and get sent home as no tests are showing anything.

The doctor mentioned yesterday perhaps GERD (or even Silent GERD). Symptoms. They do seem to fit. I have soreness in my throat and voice is husky and crackly, perhaps damage from acid reflux.

This apparently can also cause sleep disturbances at the point of going to sleep.

I am though experiencing tightness around sinuses, headaches and eye pain as well as ear crackling sounding like thunder.

This on top of severe tinnitus and hyperacusis - well, it's a lot lol.

Yeah I was thinking daytime accumulation and/or stress/anxiety experienced during dreams and/or fluid blockage, like the cerebrospinal cleansing cycle. Tough to tell though.

I do definitely think there is a fluid blockage, or fluid issue.

Pressure around eyes, and visual disturbances also.

I've seen GP, ENT, Eye hospital and Neurologist. I have done CT scan, blood tests, full eye examination and ECG, but no one can put the pieces together.

Now that they have seemed to rule out heart issues, either something is coming from Eustachian tubes or sinuses causing tongue swelling and burning throat sores, as well as tight chest and abdominal slight cramps - or it's acid reflux coming up to the esophagus.

I feel I'm in one big mess at the moment.

 

[Joe Cuber]

That's quite a list of symptoms @DeanD, you have my sympathies. I hope your symptoms subside or you can get to the bottom of what's ailing you most recently. The swollen tongue, sore throat, husky/crackly voice... those are interesting symptoms. If I didn't know better, I'd guess sleep apnea because those are the kind of symptoms I had gotten in conjunction with my sleep apnea. It's good that you ruled out heart issues.

GERD is an interesting consideration. Would sleeping slightly elevated address that?

 

[Joe Cuber]

I wanted to post a short update. I decided to record the kind of days (loud/mild/quiet) I've been having over the last 14 days.

Here's what I experienced in chronological order, each letter is a whole day:

L M Q L M Q L M Q L M Q Q L

Where L = loud (6-7 / 10), M (2-3 / 10), and Q = (0-0.5 / 10)

What's interesting to me is that there were 4 cycles of L M Q. I don't recall that I ever had such a consistent streak.

 

[Joe Cuber]

I wanted to share another update since I've learned quite a bit about how my tinnitus behaves. In my last post, I started to notice that there appears to be a cyclical aspect to my tinnitus, and so I started to keep track of the kinds of days I have.

I now have 2 months of data, and I can firmly say that my tinnitus is quite cyclical in nature. Here's a graph of the kinds of days I have:

I only have 3 kinds of days:

• RED: Loud hiss/screech, pretty intrusive, starts within seconds of waking up until I fall asleep.
• YELLOW: Moderate high-pitched squeal, somewhat less intrusive, lasts all day.
• GREEN: So quiet I have to go into a quiet room to hear its faint hum, lasts all day.

I occasionally get 2 or more yellow days in a row, and I occasionally get 2 green days in a row. But I don't ever seem to get 2 red days in a row (I used to). I never go from red to green. And I never go from green to yellow.

Another thing I've learned: I can force a red day into a green day. On red days, I do this by waking up extra early, like somewhere between 3 and 5 am. If I wake up that early, my tinnitus is still quiet. If I stay up, it stays quiet for the rest of the day. If I fall back asleep and dream again, I wake up and the tinnitus ramps up within seconds. So, in the chart, whenever you see a 2nd green day in a row, it's because I woke up early and stayed up that day.

One more thing I've learned: On the cycles where there's more than one yellow day, I happened to be more active (like A LOT of walking).

 

[sspencermo]

Hi @Joe Cuber, thank you so much for your detailed posts.

My tinnitus started a few months ago out of the blue (COVID-19 vaccine, virus, who knows?) and has a very similar pattern to yours. Mine is mostly loud-low-low-loud-low-low. I don't think I've ever had two loud days in a row, nor can I seem to get more than two low days in a row (unfortunately). I don't really understand the neurobiology of this, but one thing is for sure: it resets when I sleep, and on a "loud" day, I wake up 90 minutes after going to sleep with my head screaming. Ninety minutes corresponds with the REM part of the sleep cycle, so I'm pretty sure it's either that REM sleep triggers the tinnitus, or tinnitus spikes for some other reason and interferes with REM sleep. I haven't tried any sleeping pills other than melatonin, but I wouldn't mind experimenting to see whether making it through REM sleep influenced the tinnitus I have the next day. This is a very weird phenomenon.

 

[Joe Cuber]

Hi @Joe Cuber, thank you so much for your detailed posts.

My tinnitus started a few months ago out of the blue (COVID-19 vaccine, virus, who knows?) and has a very similar pattern to yours. Mine is mostly loud-low-low-loud-low-low. I don't think I've ever had two loud days in a row, nor can I seem to get more than two low days in a row (unfortunately). I don't really understand the neurobiology of this, but one thing is for sure: it resets when I sleep, and on a "loud" day, I wake up 90 minutes after going to sleep with my head screaming. Ninety minutes corresponds with the REM part of the sleep cycle, so I'm pretty sure it's either that REM sleep triggers the tinnitus, or tinnitus spikes for some other reason and interferes with REM sleep. I haven't tried any sleeping pills other than melatonin, but I wouldn't mind experimenting to see whether making it through REM sleep influenced the tinnitus I have the next day. This is a very weird phenomenon.

Hey there @sspencermo, sure thing, I'm glad you found my posts helpful, and thanks for commenting here. It's a lot easier to have a conversation on threads like this rather than on profile pages due to their character limits.

It sounds like we have a very similar experience. I'm not exactly sure what caused mine either, but mine started after I had experienced months of pretty severe workplace stress. Prior to that, I had years of this very low hum in my ears which I had never thought of as tinnitus (I thought it was how ears normally function), but my audiologist affirms is actually tinnitus. I also have mild/moderate hearing loss. So the theory with me is that I had a low level preexisting tinnitus correlated with my hearing loss and then perhaps the stress triggered this intrusive cyclical experience. But I don't know for certain and probably never will know for certain.

I'm like you, I don't get two loud days in a row. How much of your tinnitus do you hear on your low days?

I also feel that REM is when my tinnitus ramps up. I have the same thoughts that you do: it's either the REM itself or some underlying trigger that causes the tinnitus to ramp up while also affecting REM sleep. I have tried different sleeping aids. The one I used for months in the beginning is Trazodone. None of them seems to have had any effect on my tinnitus or the cycle.

It's good that you recognize that you have a cycle. For the longest time, I didn't recognize my cycle. I was suspecting all sorts of external triggers, like sleep position, posture, diet, exercise, you name it. I think partly it was because in the beginning it was quite chaotic, without much pattern. It's also partly due to my having three types of days (loud, mild, quiet). But every since February of last year, I've been keeping a daily record. I'll post about it soon, but it appears that my cycles are lengthening, meaning more days between loud days. The overall volume has been steadily decreasing (knock on wood).

How's your anxiety level been?

 

[sspencermo]

Hey there @sspencermo, sure thing, I'm glad you found my posts helpful, and thanks for commenting here. It's a lot easier to have a conversation on threads like this rather than on profile pages due to their character limits.

It sounds like we have a very similar experience. I'm not exactly sure what caused mine either, but mine started after I had experienced months of pretty severe workplace stress. Prior to that, I had years of this very low hum in my ears which I had never thought of as tinnitus (I thought it was how ears normally function), but my audiologist affirms is actually tinnitus. I also have mild/moderate hearing loss. So the theory with me is that I had a low level preexisting tinnitus correlated with my hearing loss and then perhaps the stress triggered this intrusive cyclical experience. But I don't know for certain and probably never will know for certain.

I'm like you, I don't get two loud days in a row. How much of your tinnitus do you hear on your low days?

I also feel that REM is when my tinnitus ramps up. I have the same thoughts that you do: it's either the REM itself or some underlying trigger that causes the tinnitus to ramp up while also affecting REM sleep. I have tried different sleeping aids. The one I used for months in the beginning is Trazodone. None of them seems to have had any effect on my tinnitus or the cycle.

It's good that you recognize that you have a cycle. For the longest time, I didn't recognize my cycle. I was suspecting all sorts of external triggers, like sleep position, posture, diet, exercise, you name it. I think partly it was because in the beginning it was quite chaotic, without much pattern. It's also partly due to my having three types of days (loud, mild, quiet). But every since February of last year, I've been keeping a daily record. I'll post about it soon, but it appears that my cycles are lengthening, meaning more days between loud days. The overall volume has been steadily decreasing (knock on wood).

How's your anxiety level been?

Hi @Joe Cuber -- yeah, this cyclic thing is so weird. On "quiet" days, I wake up with some ringing, but it goes away with a shower. Which is also pretty strange. I do have some very high-pitched overtones, though, the rest of the day. It's such a high frequency, I don't think I could hear it with my actual ears. It's very soft and it comes and goes, but I can hear it if I listen for it in a quiet room. It also seems to be "reactive" -- it gets louder with other high-pitched sounds. On my loud days, I have ringing ~9000 Hz that turns into a hiss and is plenty loud all day -- maybe around a 6? -- though I think it's not quite as loud as it was in the beginning. Or maybe I'm just less panicked by it.

I think there's a paper on tinnitus that suggests that intermittent tinnitus is caused by some inhibitory feedback loop in the brain. I'm thrilled to hear that your loud days are getting further apart! It gives me hope that the feedback loop isn't set in stone and that the same might happen for me in time... I don't love having the loud intrusive sound every third day, but of course, I feel lucky that it's intermittent in the first place.

Any tips for how you handle the loud days? I kind of dread them and try to have a bunch of errands or other distractions to keep me busy and keep my mind off the buzzing. Also, does Trazodone allow you to sleep through the night? I'm getting pretty tired of being awakened by tinnitus during REM cycles...

Wishing you continued improvement, and thanks for posting your details. There's so little information from doctors about tinnitus that this site is actually the most helpful resource I've found.