NeilMed Sinus Rinse Caused My Tinnitus

[Sufferer1221]

Hello everyone,

I've lurked the forums for a few days and based off some of the comments from various contributors on this forum through other posts. I thought I'd share my concerns, words of warning and gather thoughts from the community.

Last Saturday I used a NeilMed nasal rinse with a blocked nose - I didn't think it was completely backed up, but I squeezed too hard and had a fullness in my left ear, together with pain in my tragus. I couldn't equalise by Valsalva. Low level tinnitus ensued which I noticed later in the evening as I tried to fall asleep.

The next day, I was able to equalise by Valsalva, after my shower - made the tinnitus worse though, I think. I was able to get an ENT app around 96 hours after the original insult. Scoped - and completely blocked Eustachian tube, red, sore ear drum, started on a tapered course of Prednisone, which I don't think is doing much to help. Tinnitus has been constant and I'm sat here, trying to accept that this might be how I have to live the rest of my life, and wallowing in my own self pity.

ENT advised me to stop even attempting Valsalva and instead to focus on opening my mouth / yawning.

My early days and living with this uncertainty is massively anxiety inducing. Would really appreciate any thoughts from the community. Anyone been in a similar position before and had it self resolve?

Thanks so much for your time reading my post.

 

[martinberryhorse]

I coughed fluid into my Eustachian tubes causing severe tinnitus. It did get better after 3 months, but has been stuck at a lower level for almost 3 years now. Sounds like you did less damage than I did, so I wouldn't be surprised if yours resolved.

 

[Sufferer1221]

I coughed fluid into my Eustachian tubes causing severe tinnitus. It did get better after 3 months, but has been stuck at a lower level for almost 3 years now. Sounds like you did less damage than I did, so I wouldn't be surprised if yours resolved.

Thank you Martin. Still ongoing at the same level - using some antihistamines to help sleep at night and trying my best to habituate to this sound. Am trying to keep on the positive side of things and have started CBT sessions - but it's really, really hard. The anxiety I feel with this sound is just incredible and really highlights how little control of even my own body I have.

Had a hearing test - both ears are within normal range, but there was negative pressure in my left middle ear, due to Eustachian tube closed up. No fluid. I'm steam inhaling and taking steroid nasal drops to help this inflammation go down and I can hear the occasional popping sound indicative of Eustachian tube opening when I manipulate my jaw.

I don't know whether there is any damage to my cochlea, as a result of barotrauma (but my hearing is normal and perfect balance etc..) or whether the tinnitus is as a result of my reaction to the initial insult. Is there any way to deconvolute? My audiologist thinks it's very unlikely that I have physically damaged anything.

Would really appreciate any additional thoughts from the community.

 

[martinberryhorse]

it's really, really hard. The anxiety I feel with this sound is just incredible and really highlights how little control of even my own body I have.

I understand how hard it is, especially soon after the onset. I seriously considered suicide every day for probably 6 months. I can say that mentally I am probably 50% better now, some days 75%, some days 25%, but no matter what I am better than I was two years ago. This tends to be the case with most people, and so it is likely if you can just keep hanging on you will feel better eventually, and that is assuming you don't recover.

The fact that you know there is negative pressure is a big win for you. That means there is something objectively wrong, which means there is something that could improve resulting in a recovery.

I've asked doctors about damage as well, and they all don't think there is any in my case. My gut tells me you would have other symptoms as well if there was damage to the cochlea.

I've seen about 12 different ENTs over the last 3 years, and only one of them told me he had seen any patients with a similar issue to mine. Most of them have no idea whats going on or what to do, which leaves us with the only option of waiting for it to get better.

I've seen a lot of cases online with our issue and most resolved within 3 years, some people have it for life. I would say it is best to prepare for it to be permanent, and get the despair and suicidal thoughts out of the way now so you can move on later in case you are one of the ones who it won't get better for.

 

[Sufferer1221]

Thank you Martin. This is exactly the mindset I'm trying to have. It's really bloody hard! I'm just hoping that it either goes away or I will learn to habituate.... I just wish I could have a good nights sleep. When I wake up in the morning, sometimes there are a few seconds where i cannot hear it. Those few seconds are turning out to be the best few seconds of my whole day...

 

[martinberryhorse]

Thank you Martin. This is exactly the mindset I'm trying to have. It's really bloody hard! I'm just hoping that it either goes away or I will learn to habituate.... I just wish I could have a good nights sleep. When I wake up in the morning, sometimes there are a few seconds where i cannot hear it. Those few seconds are turning out to be the best few seconds of my whole day...

For me the mindset began to set in (not fully there yet) after I realized I either have to die or keep going, and I realized that I wasn't ready to give up on everything and I might as well see what comes next.

As for sleep, oddly enough ear plugs help me. Mine is also quietest in the morning for a few minutes, wearing earplugs often lowers the sound to almost that level after maybe 20 minutes. I was able to get good sleep after about 6 months.

 

[Sufferer1221]

Just thought I'd update here - still got the tinnitus but it's been a wild few days. Feels like the volume is constantly changing. I get a tone, a hiss, and sometimes I hear sounds coming from my right ear now on top of the left, sometimes to the point where I can't hear the sound in my left ear - almost feels like my brain is trying to mask the sound itself. Has anyone ever experienced this before?

I had a few minutes a couple of days ago where I couldn't hear any sounds at all - not sure how much I should read into this, but it felt like heaven...

It's difficult to say whether it's getting better or whether I am mentally dealing with it in a more positive manner...

 

[Stuart-T]

Just thought I'd update here - still got the tinnitus but it's been a wild few days. Feels like the volume is constantly changing. I get a tone, a hiss, and sometimes I hear sounds coming from my right ear now on top of the left, sometimes to the point where I can't hear the sound in my left ear - almost feels like my brain is trying to mask the sound itself. Has anyone ever experienced this before?

I had a few minutes a couple of days ago where I couldn't hear any sounds at all - not sure how much I should read into this, but it felt like heaven...

It's difficult to say whether it's getting better or whether I am mentally dealing with it in a more positive manner...

It must be a good sign if you get silence now and again - I have had not 1 second of silence since this started.

 

[Sufferer1221]

Hi all,

just an update here. Last couple of weeks have been a bit funky. The volume / pitch and directionality are a bit wild. Middle ear pressure is still negative (-50 something from the original -160 month or so ago). Eustachian tube is starting to pop more when i yawn etc. Sometimes the tinnitus is super quiet - I haven't had it disappear, but it can get very quiet, whilst at other times it's incredibly loud... All quite frustrating if I'm honest!

Not sure when I'll next post on here - I hope i can habituate to this or have it disappear... Will save an update for a couple of months or when healed. Too many stories on here don't have a conclusion! Thank you for your support and kind words all.

 

[Sufferer1221]

HI all,

Just thought I would post an update for anyone who has a similar issue in the future and stumbles on this forum post.

All in all, good news I'd say, the tinnitus has dropped down considerably on a good day (I'd estimate around 95%). Some days are better than others. It really is a very strange experience, I don't think it's a matter of conscious tuning out / habituation as it's very binary - the sound is either there, or it's not. My middle ear pressures are still not 100% normal, although flying does not seem to aggravate much (I actually found that wearing flight earplugs made it worse, not better!).

I think that due to the fact that the sound comes and goes, I've become accustomed to it more gradually and I definitely care less about it when it's there. I guess the bouts of no tinnitus give me a lot of respite from the sound. This whole experience has taught me a lot about myself and what is important in life - wearing earplugs to loud events is an absolute must for me!

I wish everyone on here the best of luck in their journeys. Tinnitus really sucks!

 

[Amv]

HI all,

Just thought I would post an update for anyone who has a similar issue in the future and stumbles on this forum post.

All in all, good news I'd say, the tinnitus has dropped down considerably on a good day (I'd estimate around 95%). Some days are better than others. It really is a very strange experience, I don't think it's a matter of conscious tuning out / habituation as it's very binary - the sound is either there, or it's not. My middle ear pressures are still not 100% normal, although flying does not seem to aggravate much (I actually found that wearing flight earplugs made it worse, not better!).

I think that due to the fact that the sound comes and goes, I've become accustomed to it more gradually and I definitely care less about it when it's there. I guess the bouts of no tinnitus give me a lot of respite from the sound. This whole experience has taught me a lot about myself and what is important in life - wearing earplugs to loud events is an absolute must for me!

I wish everyone on here the best of luck in their journeys. Tinnitus really sucks!

Hi @Sufferer1221, another sufferer here. I have had tinnitus since 2017. I've been pretty habituated to it since some years ago. 1 month ago I did a NeilMed sinus rinse and my tinnitus has gone crazy. Some days it is very high, some days very low. When I lie down for some time, it is aggravated.

Crazy! Have you come to a conclusion why this happens? My audiograms have come the same as in 2018. But I have a pretty bad Eustachian tube dysfuntion and pressure in my ears. Maybe this is the cause?

Anyway, I would love to hear if you have come to a conclusion what this water causes in the ears, as it would be the same as sea water I guess.

Best!

 

[Sufferer1221]

Hi @Sufferer1221, another sufferer here. I have had tinnitus since 2017. I've been pretty habituated to it since some years ago. 1 month ago I did a NeilMed sinus rinse and my tinnitus has gone crazy. Some days it is very high, some days very low. When I lie down for some time, it is aggravated.

Crazy! Have you come to a conclusion why this happens? My audiograms have come the same as in 2018. But I have a pretty bad Eustachian tube dysfuntion and pressure in my ears. Maybe this is the cause?

Anyway, I would love to hear if you have come to a conclusion what this water causes in the ears, as it would be the same as sea water I guess.

Best!

Hello @Amv,

I'm sorry to hear that. Did you squeeze hard on the bottle? That's what caused it for me. In my case the tinnitus was the same no matter what position I was in. Of course, lying down in complete silence increased my perception of the sound.

I'm 99% sure in my case it was due to inflammation of my Eustachian tube. Why am I sure of this? (1) The tinnitus has greatly calmed down on most days, oftentimes I cannot hear it, even if I plug my ears and try. (2) The improvement in tinnitus has correlated with increased ability for me to manipulate muscles to open my Eustachian tube and equalise pressure. (3) Sometimes when I fly, my tinnitus is exasperated, temporarily. This was worse on my first flight, where I tried to use flying earplugs, which (for some reason) actually made the pressure in my ear worse instead of better, particularly on descent - but intensity self-resolved over a couple of days.

I think it's different to sea-water, if you may squeeze too hard on the bottle... it's more the barotrauma i think than the salt water itself, one ENT thought some liquid and mucous might have made it into my Eustachian tube which irritated the lining, but I guess I will never know... Unfortunately, I don't think there's anyway for you to definitively know either!

My only advice is to wait and see... and be very careful the next time you use a NeilMed...

Best of luck!

 

[Amv]

Hello @Amv,

I'm sorry to hear that. Did you squeeze hard on the bottle? That's what caused it for me. In my case the tinnitus was the same no matter what position I was in. Of course, lying down in complete silence increased my perception of the sound.

I'm 99% sure in my case it was due to inflammation of my Eustachian tube. Why am I sure of this? (1) The tinnitus has greatly calmed down on most days, oftentimes I cannot hear it, even if I plug my ears and try. (2) The improvement in tinnitus has correlated with increased ability for me to manipulate muscles to open my Eustachian tube and equalise pressure. (3) Sometimes when I fly, my tinnitus is exasperated, temporarily. This was worse on my first flight, where I tried to use flying earplugs, which (for some reason) actually made the pressure in my ear worse instead of better, particularly on descent - but intensity self-resolved over a couple of days.

I think it's different to sea-water, if you may squeeze too hard on the bottle... it's more the barotrauma i think than the salt water itself, one ENT thought some liquid and mucous might have made it into my Eustachian tube which irritated the lining, but I guess I will never know... Unfortunately, I don't think there's anyway for you to definitively know either!

My only advice is to wait and see... and be very careful the next time you use a NeilMed...

Best of luck!

Thanks a lot for your reply @Sufferer1221.

Great news! It seems that you are almost 100% recovered, and congrats for your recovery and progress. How long did it take for all to heal?

I agree with all you are saying. I did hearing tests and they came back perfect, but I have been diagnosed with Eustachian tube dysfunction. My theory is that the water there inflamed the middle ear and the Eustachian tube. Probably all this makes the middle ear to not heal quickly. The oval window and the cochlea also got inflamed (but not damaged).

That would explain the progress in the tinnitus and the no hearing loss.

Anyway, knowing your story makes me confident I can go the same path. Did you have any treatment so I can discuss it with my doctor?

I guess you also experienced hot ears, the feeling of glue in the ears, as if there's fluid stuck there, some pain... etc.

All the best wishes, and definitely the good news for you is that you don't have cochlear damage. I have had it since 2017 due to noise trauma, but that is another story.

 

[Keydet19]

Hi @Amv. I've had permanent tinnitus for six years, and I've tried all of the flushes. For me, the Navage is worth the money, and the vacuum pressure of it can help me clear the Eustachian tubes. Maybe your ENT would OK a trial.

Sometimes I still travel with a NeilMed for convenience, and it's really inferior--can get pressure locked in my ears and drain water from my nose for hours.

 

[Sufferer1221]

How long did it take for all to heal?

I agree with all you are saying. I did hearing tests and they came back perfect, but I have been diagnosed with Eustachian tube dysfunction. My theory is that the water there inflamed the middle ear and the Eustachian tube. Probably all this makes the middle ear to not heal quickly. The oval window and the cochlea also got inflamed (but not damaged).

That would explain the progress in the tinnitus and the no hearing loss.

Anyway, knowing your story makes me confident I can go the same path. Did you have any treatment so I can discuss it with my doctor?

I guess you also experienced hot ears, the feeling of glue in the ears, as if there's fluid stuck there, some pain... etc.

All the best wishes, and definitely the good news for you is that you don't have cochlear damage. I have had it since 2017 due to noise trauma, but that is another story.

Hi @Amv,

It took in all around 6 months both physically and mentally to get to a point where I couldn't hear it and didn't care when I did.

I started on a tapered dose of Prednisolone 48 hours after the incident and have had some CBT which did help provide some perspective on things. I'm not sure whether the window for which this may have had an impact on whatever is causing your spike to kick in is still open though. I did not feel a benefit on steroids, but who knows whether this made a difference or not in the long run, impossible to say.

I'm sorry to hear about about your cochlear damage.

The only advice I can give you is to try and stay as calm as possible (I know it's hard) and to try and observe the tinnitus as a foreign sound, I'm telling you things you already know... Ultimately, you cannot control the sound, but you can control your emotional response to it...

You didn't answer whether you squeezed very hard on the bottle, in my case, this is almost 100% what drove the initial trauma, that's why I said, in my case at least, it was different to salt water simply getting into the sinuses.

All the best!

 

[Amv]

Hi @Amv. I've had permanent tinnitus for six years, and I've tried all of the flushes. For me, the Navage is worth the money, and the vacuum pressure of it can help me clear the Eustachian tubes. Maybe your ENT would OK a trial.

Sometimes I still travel with a NeilMed for convenience, and it's really inferior--can get pressure locked in my ears and drain water from my nose for hours.

Thanks @Keydet19.

Unfortunately, for some of us, a sinus rinse can be dangerous, as because of Eustachian Tube Dysfunction, liquid can get trapped, not flow properly and inflame the whole ear, and create a spike, which, in my case, happened after a NeilMed rinse

So from now on, in my case, I will only do Sterimar/Rhinomer which is a spray of sea water.

But sinus rinses can help many other people so my case is just one data point. In case it helps you and the doctor advises you to do it, please continue with what makes you better

 

[Keydet19]

Sorry to read this, @Amv. Hope there's something corrective for your Eustachian tubes down the road!

 

[Amv]

Hi @Amv,

It took in all around 6 months both physically and mentally to get to a point where I couldn't hear it and didn't care when I did.

I started on a tapered dose of Prednisolone 48 hours after the incident and have had some CBT which did help provide some perspective on things. I'm not sure whether the window for which this may have had an impact on whatever is causing your spike to kick in is still open though. I did not feel a benefit on steroids, but who knows whether this made a difference or not in the long run, impossible to say.

I'm sorry to hear about about your cochlear damage.

The only advice I can give you is to try and stay as calm as possible (I know it's hard) and to try and observe the tinnitus as a foreign sound, I'm telling you things you already know... Ultimately, you cannot control the sound, but you can control your emotional response to it...

You didn't answer whether you squeezed very hard on the bottle, in my case, this is almost 100% what drove the initial trauma, that's why I said, in my case at least, it was different to salt water simply getting into the sinuses.

All the best!

Thanks @Sufferer1221 a lot for your answer, and I am so glad you are doing great!

Today I had some exams. I had a complete audiometry and otoacoustic emissions. Fortunately, my tests came up all good without any change from the ones I had two years ago.

So yes! This is an inflammation / irritation of the Eustachian tube, and it takes time to go back to its baseline.

As you mention, I squeezed too hard. A local ENT told me that for some of us these nasal rinses are not appropriate with the risk of fluid not flowing properly and causing overstimulation (inflammation) of the Eustachian tubes.

The goods news is you are doing so great that it gives me hope and confidence this will tend to subside.

Regarding steroids, I used oral Prednisone, but the only relief I get is with anti-histamines and nasal steroid sprays.

I will let you know my progress, but most important is you are doing great and I am pretty sure you will be 100% fine!

 

[Casual-piano]

It's been three weeks since I used the NeilMed Sinus Rinse, and I've had tinnitus ever since. I don't think I squeezed the bottle that hard, but maybe I did. It was my first time using a sinus rinse. Audiology tests all look Normal. ENT diagnosed me with Eustachian Tube Dysfunction. Neither antihistamines nor oral steroids seemed to help.

I appreciate the comments in this thread; if @Sufferer1221 or @Amv see this and are willing to provide a status update on your condition / any additional tips that helped you, I'd be interested to hear. I am trying to stay positive, but I am feeling very similar types of frustration and anxiety as described above.

 

[Supersix]

The rinse may have triggered your Eustachian Tube Dysfunction, causing tinnitus. What kind of sound are you experiencing? Also, do you hear it at night while sleeping, and does it calm down during the day?

 

[Sufferer1221]

It's been three weeks since I used the NeilMed Sinus Rinse, and I've had tinnitus ever since. I don't think I squeezed the bottle that hard, but maybe I did. It was my first time using a sinus rinse. Audiology tests all look Normal. ENT diagnosed me with Eustachian Tube Dysfunction. Neither antihistamines nor oral steroids seemed to help.

I appreciate the comments in this thread; if @Sufferer1221 or @Amv see this and are willing to provide a status update on your condition / any additional tips that helped you, I'd be interested to hear. I am trying to stay positive, but I am feeling very similar types of frustration and anxiety as described above.

@Casual-piano, I'm sorry to hear that you've also experienced issues with the Neilmed Sinus Rinse. In my case, I can confirm that I did not have tinnitus before using the rinse, but I have experienced it intermittently since then. I am 100% certain of this. Initially, my tinnitus was constant for several months, but it began to disappear intermittently for shorter periods, gradually extending for longer durations. Currently, I experience tinnitus periodically, which tends to disappear by itself after a few hours or once I wake up in the morning. As I type this message, I can hear a faint, centrally located tone when I cover my ears with my hands. It's not unilateral as it was initially; sometimes I hear it, and sometimes I don't.

For me, the hardest part was adapting to the constant nature of the sound and the lack of control over it. Once it disappeared for the first time, even for just an hour, I felt relieved, thinking it might not be permanent. This psychological shift helped me a lot.

For other readers, I strongly advise against using the NeilMed manual rinse. It can be difficult to gauge safe pressures with the bottle. It's much safer to use a neti pot or an electronic device with pressure sensors. In my opinion, this device shouldn't be marketed or sold.

In summary, I still experience intermittent tinnitus, but I no longer have an emotional response to it, and it does go away. I know I haven't habituated to it because I can't hear it even if I try to focus on the frequency, so it really is a binary thing for me.

My advice to you would be as follows:

1. Consider reaching out to a therapist for CBT. It can be very helpful. You cannot control the sound, but you can control your emotional response to it. This can help you habituate if necessary.
   
   
2. Go on holiday, seriously. Go somewhere warm with a change of scenery, preferably near an ocean, and stay in a room with air conditioning that can drown out the tinnitus tone. I found that my tinnitus didn't respond well to noise generators but was fine with the combination of natural waves and a working AC unit. Your experience may vary! The change of environment and stress reduction from a holiday can help your brain relax.
   
   
3. If you feel pressure in your ears, avoid flying for a few months if possible. Changes in altitude, especially during descent, can be quite painful.
   
   
4. Wear acoustic earplugs if you go to loud places. This is the most important advice I can give. I always carry a pair with me and wear them to concerts, etc. If you use AirPods, limit the sound to safe levels on your iPhone.

Best of luck! Chances are, you'll be completely fine. Here I am a couple of years later, happier than ever.