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

[Joe Cuber]

Hello everyone, I wanted to introduce myself I've had tinnitus since the end of March this year, so that's a little over 2 months now. It is in my right ear only, and the loudness, pitch, and quality changes day by day.

For instance, today it has been about 4/10, mostly hissing with a bit of high-pitchness. Some days I barely hear it at all.

Sleeping is a big issue for me. I haven't found a reliable sleeping regimen yet. Part of the challenge is that I have sleep apnea, and I'm getting used to my new CPAP machine.

I have also gotten a lot of anxiety from the tinnitus and some depression. I had to take time off work to try to deal with it all, and I'm still taking more time off.

Part of my treatment I've chosen based on recommendations from an audiologist is to see a chiropractor. I have some not-insignificant curves, kyphosis, and torsion in my spine that's causing a lot of neck muscle tension. My hope is that getting my spine adjusted will lessen the tinnitus.

Please send good thoughts my way as I come to terms with this affliction. I hope to be able to get some semblance of my normal life back as time goes on. Thank you.

 

[Uklawyer]

Hi @Joe Cuber,

I recently discovered that I have sleep apnea and I am trying to get used to using a CPAP machine and mask. I have discovered that it can take a while to find a mask that is right for you - hopefully you are not having the same problem.

I think that it is also thought that there may be a connection between sleep apnea and tinnitus. Perhaps your tinnitus will begin to resolve once you receive the full benefit of the CPAP machine. In the meantime, I would do your best to stay as calm as possible. Meditate, try to take your mind off of it when you can by watching TV or going for a walk or listening to gentle music - and use some white noise or a fan or other background noise to help with sleep if it is a problem. If anxiety is really affecting you, you can see a doctor a see if there is something to try to alleviate the symptoms. By no means do you need to fret and see this as something long-term at your stage.

Best wishes.

 

[Joe Cuber]

Hi @Uklawyer, nice to make your acquaintance. I really appreciate your reply. I feel a kinship with you already since it looks like we're both acclimating to using a CPAP.

I agree with you, mask selection is a challenge. My sleep doctor naturally started me off with an AirFit F20 full face mask since I'm unsurprisingly a mouth breather. I've gotten somewhat used to it, but it's been pretty finicky trying to maintain the seal the whole night.

The bigger issue that I've discovered is that the mask and straps messes with my tinnitus. My chiropractor and I believe that a component of my tinnitus originates or is exasperated by my skull bone alignment. So the F20 mask is wrecking a little havoc for me.

So, just yesterday, I picked up a P10 nose pillow mask. Much more comfortable fit (barely any straps) and a chin strap. Last night I practiced nose breathing with some success.

What's your mask experience been like?

I agree with you about their being a connection between sleep apnea and tinnitus. My chiropractor explained to me that sleep apnea is another stressor your body experiences. And stressors create skeletal misalignment and muscle tension.

Thanks for all the tips. I'll try to stay as calm as possible. Regarding anxiety, I've been seeing a psychiatrist that's prescribing me medication. And I'm enrolled in an adult program that teaches cognitive behavioral therapy and DBT.

I hope to hear more about your experience if you get the chance to reply.

 

[Uklawyer]

Hi @Joe Cuber,

Thanks for the kind words. So I started with a couple of nasal masks. Unfortunately, they irritated my nose - the first marked the bridge of my nose and around and the second marked around my nostrils. So I moved on to the Dreamwear mask by Philips. Lots of freedom and the fact the air comes out at the top of the head rather than at the nose was great. But the thing can get loud. So I am waiting for another nasal mask - the Evora.

Because of the noise, I decided to try to put some earbuds in - actually, the Bose SleepBuds, but without playing any sound through it. I woke up with vertigo and nausea. I had the same thing the next day. It was horrible. I have just been to an appointment with the sleep doctor. I told her it seemed like vestibular neuritis, but she said no and mentioned Meniere's. I hope to God it is not that - no thank you.

So please be careful with putting anything in ears if you are using CPAP. I have read that the pressure in the middle ear can increase with CPAP use, though ENTs will not generally pick up on this. I do not know what your pressure settings are, but I would try to get away with the lowest setting possible in order to minimise issues around pressure. Mine was set at 4 - 12, then lowered to 8 maximum. The doctor will now ask for constant pressure at 7.

How are the nasal prongs? A rep brought the P10 for as a possibility but showed me it and said the prongs are massive and probably not comfortable. Not sure I could sleep with those things up my nose. You could always try the N30 instead if the nasal prongs irritate you.

Have you started on any medication?

Best

 

[Joe Cuber]

Hey there @Uklawyer, I really appreciate your reply. Seriously, dealing with tinnitus has been quite an ordeal, and getting to talk to others who understand is a big help.

Thanks for the tip about not wearing anything in my ears while using a CPAP. I hadn't thought about the pressure it could cause, so that's good to know. It sounds torturous what you've experienced there. I really hope it subsides and is nothing serious.

I've been playing a lot with my pressure settings. I found that if I sleep on my side (which my sleep doctor recommends, since sleeping on your back requires greater CPAP air flow), I get by with a pressure setting of 6-9. This has been working quite well.

The P10 comes with nose pillows (I wouldn't characterize them as prongs, they're more like mushrooms). The P10 comes with 3 different sizes in the package--small, medium, large. So you can try to see which fits best. It's medium for me. The pillows mostly rest outside your nostrils, like resting against the rims. The tips of the pillows are designed to fit into your nostrils a bit to create a seal.

The nice thing about the P10 is that the strap is completely minimal compared to, say, a full face mask. As such, the pillows aren't pressing with much force against your nostrils. I find it to be quite comfortable and forget that I'm wearing them.

I did start on medication. I'm ramping up on Zoloft (I just got bumped to 100 mg/day). I've been taking Ativan as needed to curb anxiety attacks, but my doctor is slowly switching me over to Gabapentin. And I take 75 mg of Trazodone a night to help me fall asleep. How about you?

By the way, could you describe your tinnitus? Mine is peculiar It's active on some days and not others. And it's on the day boundary. Whatever I wake up with is what I get for the whole day. Like today is about a 4 out of 10. Yesterday, it was 0.5, which was super pleasant, for the entire day. Nothing I do within the day affects it much (other than if I contort my neck).

 

[Uklawyer]

Hi @Joe Cuber,

It certainly can be an ordeal - which is why it is imperative that you do all that you can to maintain a sense of calm and try not to get caught up in any cycle of tinnitus-anxiety-tinnitus. Remember, you have not had tinnitus long and there is a good chance that it will work itself out. It is also great that sometimes your tinnitus is faint.

The P10 sounds pretty good. I am guessing then that a large portion of the tubes just sits below the nose. Anyway, if you are finding it comfortable, great. I may even have to try them at some stage. I think it was the Brevida that I tried with the nasal pillows and I wasn't sure about it so opted for the Dreamwear.

I am wondering about your taking Gabapentin. Some people on here take that - sometimes because they also have nerve pain. Did you ask about why the change from a benzo like Ativan to Gabapentin? It seems like these anticonvulsants like Gabapentin and Pregabalin are strong stuff. I might have to read up on it again. I had been taking ADs for a long time before tinnitus. I also suspected that an AD that I took might have made my tinnitus a lot worse. At the moment I am on Venlafaxine (Effexor) and have Diazepam (Valium) if I need it. I would recommend that you go slowly with the medication: keep it to a minimum if you can and be aware of any side effects. Should you feel any change in your tinnitus, look at what you are taking and any changes in dose and let your doctor know about it.

My tinnitus has changed over time. When it got worse, I had 3 tones initially - a beeping a humming and a sawing sound. Now it varies between a higher pitch and a lower vibrating sound. I have had some moments where it has felt lighter and I have been hopeful that it is fading; others where it has seemed to still be there buzzing away as usual. I try not to think about it so much now, not to describe and focus on it. I have some ear fullness and mild pain intermittently. If you are aware of it, or during tougher or louder moments, try to acknowledge and then move away from it: accept its presence for now, without being surprised or afraid. I would try to see it as temporary and know that it will ameliorate. And return to something else if you can, as stated above. Try to regulate sleep and work on letting the negative thoughts drift away.

 

[Joe Cuber]

Thanks for the pep talk @Uklawyer, you are spot-on with what I'm dealing with. I'm ruminating over the tinnitus, worrying about its permanence, and causing my anxiety to increase. It's hard to stay positive and calm, but I'll continue to try my best. I've been focusing a lot on regulation my sleep, which I'm making good progress on. I'll have to put your tips into action to try to move away from it. Challenging but I'll try my best.

The P10 is working pretty well for me. If you give it a shot, let me know. Yes, the pillows largely sit outside the nostrils, with only a bit inside, not deep at all, just to create the seal.

Re: Gabapentin, my doctor is suggesting it for the reason you brought up (helps with nerve pain--there's some reason to believe I'm dealing with nerve issues around my neck, head, and ears); and also because my doctor and I have an interest in reducing my use of benzos long term. The plan she's given me is to start with a low dose of Gabapentin (100 mg) as needed to make sure I don't have any adverse reaction. Then she'll up the dose slowly if all is well. She said it could, if all goes well, eventually replace both the Ativan and the Trazodone.

Not to focus so much on the quality of our tinnitus, but just curious if yours is every day and in both ears? Mine is intermittent as I've mentioned, and almost completely in my right ear.

 

[Uklawyer]

@Joe Cuber, I will certainly let you know how my mask adventure progresses.

As a daily treatment, I am sure that Gabapentin makes more sense than Ativan (with Trazodone). There are longer-acting benzos (I had to take high-dose Valium in hospital for a good period of time) that would likely pose less risk of reaching tolerance or addiction, but I agree that it is preferable not to take them daily (though they can work well for tinnitus). Like I said, be aware of any changes in perception of noise when starting.

My tinnitus is daily, yes, and bilateral. On ear is worse than the other though. If you have anything the left ear, it is bilateral, even if one ear is less affected than the other. If you have it in only one ear, then you may be looking at something more "mechanical" (compressed nerve TMJ issue, muscle tension). Mine is pretty constant, though it is not uncommon for people to have quieter days. If what you wake up with is how it stays for the day, have you noticed any correlation between your sleep and your tinnitus the following day? Are you able to check you API score (no. of apneas or hypopneas per night) and number of leaks plus see how much sleep you got? You have some data points to compare to see if there is anything you can glean from your sleep duration and quality.

I am guessing you are looking at physio, osteopathy etc for the spinal issues.Focus on the upper back and neck should reveal any potential impact on nerve signalling. On this forum, C1 and C2 issues are mentioned as causative or contributing factors to tinnitus. @Greg Sacramento is our resident volunteer and benevolent doctor who is a wealth of knowledge on these and other issues.

And take some foam earplugs to the MRI.

 

[Joe Cuber]

Oh nice tip about using earplugs during the MRI. That sounds like a great idea, thanks.

I have been seeing a chiropractor. She found that I have multiple issues: Some minor scoliosis, kyphosis, and most notably some torsion/twist, which she believes is contributing to what I'm hearing in my right ear.

Whenever my chiropractor adjusts my T1 bone, voila, with high likelihood, the next day is a good day.

My experience in each ear is quite different. All of the intermittent high-pitched hissing noises that vary greatly day by day is in my right ear. It dominates my experience. My left ear is more constant, very non-existent except some really minor reactivity to some noises.

That's why I'm hoping that my right ear experience is more mechanical and can be corrected by the chiropractor.

It's good that you brought up correlation with sleep and with number of apnea episodes. I have some early indications that getting enough total sleep and deep sleep and having fewer episodes is predictive of a good day the next day. I also believe that the chiropractor adjustments have helped reduce the strength of the loudness. But these are just early judgments. Time might tell more. I should log the data more accurately.

 

[Uklawyer]

Looks like you have a few avenues to explore with early sign of improvement. Looks positive to me. Hope all goes well with the MRI.

 

[Joe Cuber]

Thanks @Uklawyer. I'll let you know how the MRI experience goes and what kind of results I get.

 

[Joe Cuber]

Hey, just wanted to report back. The MRI came back normal. What a miserable experience, sitting in that noisy machine for 45 minutes.

How's your mask-wearing going?

 

[Uklawyer]

Hey @Joe Cuber - good that there is nothing "serious" there: hopefully that can give you some level of reassurance.

I wasn't sure about pressure with the Dreamwear, so back to a full nasal mask for now. Clunkier but sleep not too bad for the moment. A technician is coming on Tuesday to replace my Lowenstein Prisma machine with a Resmed Airsense (10 I believe) to see if it is a bit quieter. My pressure will be reset again to 7cmH20, and left at that (i.e. constant cf. variable). I hope that helps. I will see where we are at with a new mask.

How are things with you?

 

[Joe Cuber]

Hey @Uklawyer, yeah, it's a relief that the MRI didn't surface anything worrisome. I wish I didn't have to live thru the MRI hehe.

Oh ok, I learned from a friend that has an AirSense 10 that there's a secret code you can enter that allows you to access the machine like a clinician would, so you can, for instance, change the pressure settings. I have an AirSense 11 which has a different control panel, and I've learned its code, so I've been toying with the clinician settings. I can ask what the 10's code is if you're interested, or you can probably find out online.

The P10 is working well with me so far, I'm trying used to keeping my mouth closed while I sleep. There was one night that I had a stuffy nose, which made it difficult, but otherwise it's going well.

BTW, I had a mini success today. I decided to try brisk walking today rather than my usual slower pace, and it seems to have dropped the volume for me from like a 4/10 to a 0.5/10.

 

[Uklawyer]

Oh ok, I learned from a friend that has an AirSense 10 that there's a secret code you can enter that allows you to access the machine like a clinician would, so you can, for instance, change the pressure settings. I have an AirSense 11 which has a different control panel, and I've learned its code, so I've been toying with the clinician settings. I can ask what the 10's code is if you're interested, or you can probably find out online.

Hi @Joe Cuber, thank you for the offer, I might have to take you up on it. I don't get too much info on my sleeping when I log into the site of the supplier. It could be good to get more info as well as being able to tinker with some settings.

Happy that you are doing well with the P10.

Re: walking and sound decreasing - sounds like an amazing result. Hopefully you will experience more of the quieter days as things progress. Exercise is good if you can do it - just don't strain or push too hard.

Best

 

[partha]

That's good news. Good to hear that you MRI was normal.

 

[Joe Cuber]

I don't get too much info on my sleeping when I log into the site of the supplier. It could be good to get more info as well as being able to tinker with some settings.

@Uklawyer - I agree, the info they supply isn't the greatest. I forget if the clinician view gives more, but I think it does. Here's a video of the code for AirSense 10, start around the 50-second mark:

Re: walking and sound decreasing - sounds like an amazing result. Hopefully you will experience more of the quieter days as things progress. Exercise is good if you can do it - just don't strain or push too hard.

I'm expecting that it's a one-time fluke (I don't want to get overly disappointed if I can't replicate it). But totally agree that exercise is a good thing, so I'll keep it up regardless.

That's good news. Good to hear that you MRI was normal.

Hey there @partha, good to hear from you. Yeah, glad the MRI is behind me, that was unpleasant, hehe. How are you holding up?

 

[partha]

Hey Joe, hanging in there! My tinnitus has been quiet for the last few days, but I have muscle twitches flare up for the last few days. Weird with these neuro symptoms. When one goes quiet, the other one decides it's time to show up...

 

[Joe Cuber]

Hey Joe, hanging in there! My tinnitus has been quiet for the last few days, but I have muscle twitches flare up for the last few days. Weird with these neuro symptoms. When one goes quiet, the other one decides it's time to show up...

That's interesting, I wonder why that happens. It must be a relief though to get a break from the noise.

Today, I'm getting a low volume but very high-pitched hiss. It's been rather insistent, getting annoyed by it.

 

[Uklawyer]

@Uklawyer - I agree, the info they supply isn't the greatest. I forget if the clinician view gives more, but I think it does. Here's a video of the code for AirSense 10, start around the 50-second mark:

Hi @Joe Cuber, thanks for this - I may well use it. The AirSense10 is better than the Lowenstein I believe. The noises do blend a little with my tinnitus - don't know if that's a good thing or a bad thing.

The Evora mask is ok, but I think the nasal piece is too big, thus some leaking. It's hard to get it right!

 

[Joe Cuber]

Hi @Joe Cuber, thanks for this - I may well use it. The AirSense10 is better than the Lowenstein I believe. The noises do blend a little with my tinnitus - don't know if that's a good thing or a bad thing.

The Evora mask is ok, but I think the nasal piece is too big, thus some leaking. It's hard to get it right!

Hey @Uklawyer, sure thing. I hope you get a configuration that works for you. I'm still lying on my right side and still have my pressure settings at 7-9. The machine tells me my max for the night is 8.8, so I think my settings work well.

Yeah getting the right mask is tough! My wife told me to my dismay that she hears the air escaping from my mouth in the middle of the night. Here I thought I was doing well with keeping my mouth closed, but nope! I looked at my data on the My Air app, and sure enough, I have like 30L/min of leakage.

So we tried mouth tape on me and that did the trick (I had to wear two pieces of tape, one on each side of my mouth). My leakage last night was only 6L/min.

Good luck and keep it up.

 

[Uklawyer]

Thanks @Joe Cuber. You know, you can get a chin strap to help keep the mouth closed.

Lots of the masks have air that blows out the front, some through a single hole. Some masks have a filter near the adjoining pipe, which helps to muffle the air that is being expelled.

I was told that anything under 10L/m is fine. My pressure was set at a constant 7 to avoid pressure changes that could cause issues.

 

[Joe Cuber]

Ah good to know about the 10L/min threshold. I have noticed that the P10 expels air a bit, I didn't know whether that was intentional.

Yup, thanks for the chin strap tip, I do wear one. My challenge is that I can't put it on too tight because that would put pressure on my skull bone alignment, which messes with my tinnitus (something physical is happening there that I'm trying to get to the bottom of). I make the chin strap as tight as I can bear, which isn't tight enough, hence the mouth tape, hehe.

 

[Uklawyer]

I have noticed that the P10 expels air a bit

Do you mean the air that is pushed out the front of the mask - or that air leaks out around the mask? I am not sure about my new mask. The P10 and the Swift FX seem to come out as the best nasal pillow masks. The P10 doesn't have the swivel nozzle but is supposed to be quieter than the Swift FX. But it looks very lightweight and not very robust.

 

[Joe Cuber]

The P10 is quite lightweight and quieter (at least compared to my F10 full face mask). I do enjoy that it has fewer straps and that it doesn't require a lot of tension to keep it in place. I think you're right about the robustness. The nose pillows are supposed to be replaced every month and the mask frame every three months.

Do you mean the air that is pushed out the front of the mask - or that air leaks out around the mask?

The air doesn't leak around my nostrils, but air does push out in the front of the mask. I had to take a closer look. There are these vents in the front with very, very tiny holes. It looks like it's designed to expel air forward. The other night, I only got 6 L/min in leakage. Last night, I got 11 L/min. I do see that, in my CPAP settings, there's a setting for mask type, which I've switched to Pillows. The machine probably adjusts the air flow accordingly maybe?

 

[Uklawyer]

Last night, I got 11 L/min. I do see that, in my CPAP settings, there's a setting for mask type, which I've switched to Pillows. The machine probably adjusts the air flow accordingly maybe?

I think it does, yes. There isn't a setting for the "hybrid" masks that sit under the nose (nasal cushions) - well, not on the AirSense 10 anyway, but there is nasal and nasal pillows. My technician told me to use one of those 2 to see which one is more comfortable. The Evora mask has hard plastic around the nasal cushion, which is a little uncomfortable, plus the harness that extends from in front of the nasal cushion round to the side of the head, above the ears, is very rigid - so also a bit uncomfortable.

I am going to try my Philips Dreamwear mask again, but with the new machine and lowered pressure, to see how I get on. It's not nice thinking about your mask when trying to sleep and then waking several times during the night to adjust it.

How are the ears doing?

 

[Joe Cuber]

It's not nice thinking about your mask when trying to sleep and then waking several times during the night to adjust it.

Seriously, it's frustrating adjusting the mask multiple times in the night. I'm hoping you're able to get a mask that fits well for you so you can get a good night's rest.

How are the ears doing?

So I've got this daily fluctuating tinnitus in my right ear, and yesterday and today have been pleasant, so I can thank my lucky stars. Who knows what tomorrow will be like. The reactivity I experience in both ears has also been minimal, so that's a double win for me. I've just started taking that NAC supplement, but I wouldn't attribute anything too it yet, too soon to tell. How about yourself?

 

[Uklawyer]

Sounds good though. I have had some better days. Problem with me is that I don't like my medication at the moment, so do not take it enough. I then tell myself that perhaps that helps the tinnitus - but then I get additional anxiety, which gets me down. Damned if you do...

 

[Joe Cuber]

Caught in a loop. What don't you like about your current medication?

 

[Uklawyer]

I took this one a long time ago. It was quite good for anxiety, but had quite a few side effects. I find it quite heavy - and stopping it was pretty horrible too. I have this feeling at the moment that it is toxic to me - that I would prefer not to take it - or to take as little as possible. And whilst it helps alleviate anxiety (and thus, perhaps, tinnitus), it might also be contributing to maintenance of it. I'd really love to not have to take it.