5 Months In, Don't Know What's Causing It and I'm Struggling to Cope

[TTempo]

This is a bit of a long and confusing story, but my tinnitus started spontaneously on the night of 11/1/18. I didn't know what was causing it but we assumed it was an earwax blockage and started cleaning out my ear with olive oil. After 4 days, this didn't work so I went to see my GP.

My GP said she had seen some "fluid buildup" behind the eardrum and diagnosed me with eustachian tube dysfunction, gave me a steroid spray and told me to come back if it didn't go within 2 weeks. I used this spray and, at first, it seemed to work and took it down, but it never stopped it and I stopped using it after 2 weeks.

After these 2 weeks, I saw a different GP who also looked at my ears. He said he also saw something behind the eardrum and gave me a steroid spray which was stronger than the last. Same story with this one as it stopped working and I stopped using it after a few weeks.

A month later I started to get depressed and anxious about it and went to see a 3rd GP. This GP looked down my ears and, unsuprisingly, said she "saw some density to the ear drum". She referred me to ENT and that was that.

Another month passes and I have my ENT appointment. I see the ENT and he does a bunch of tests on my ears but says he sees nothing abnormal. However, on one of the tests he did (the pressure test one), my right eardrum felt very different to my left one. (My right ear is the ear where I've had it worst) but I didn't bring this up because I thought it was nothing. I felt like I didn't properly convey my other symptoms (which I'll get it in a minute) and best myself up over it. He then referred me to the tinnitus clinic of which my appointment is in June.

I currently have these symptoms
-hissing tinnitus 24/7
-clicking noise when swallowing
-clicking noise if opening mouth too wide
-inability to open my mouth wide when bent backwards
-occadional random piercing tinnitus
-swirling tinnitus whilst in bed

Something intresting is that my tinnitus is constantly varying. When this variation happens, the clicking in my throat seems to follow. If it gets louder in my left ear, the clicking in my throat also becomes louder. If I get a sudden piercing high pitch noise in my right ear, I get a longer crackle in my right ear when I swallow. I also have some inexplicable "ability" I guess to do somethibs that feels like opening my eustachian tubes at will I don't know if that is normal and I don't know how to better describe it.

If it helps, I am 14 years old. Has anyone else had these same/similar symptoms and what were they pointing towards? I have read online most sources point towards eustachian tube dysfunction or patulous eustachian tubes. If it's the 2nd one I don't know how I'll cope!

EDIT: I don't listen to loud music or anything loud at all.

 

[glynis]

It could be sinus related or Allergies (grass or tree pollen)along with Mucous in your Eustation Tubes.
Have a chat with your doctor
Love glynis

 

[Ed209]

This is a bit of a long and confusing story, but my tinnitus started spontaneously on the night of 11/1/18. I didn't know what was causing it but we assumed it was an earwax blockage and started cleaning out my ear with olive oil. After 4 days, this didn't work so I went to see my GP.

My GP said she had seen some "fluid buildup" behind the eardrum and diagnosed me with eustachian tube dysfunction, gave me a steroid spray and told me to come back if it didn't go within 2 weeks. I used this spray and, at first, it seemed to work and took it down, but it never stopped it and I stopped using it after 2 weeks.

After these 2 weeks, I saw a different GP who also looked at my ears. He said he also saw something behind the eardrum and gave me a steroid spray which was stronger than the last. Same story with this one as it stopped working and I stopped using it after a few weeks.

A month later I started to get depressed and anxious about it and went to see a 3rd GP. This GP looked down my ears and, unsuprisingly, said she "saw some density to the ear drum". She referred me to ENT and that was that.

Another month passes and I have my ENT appointment. I see the ENT and he does a bunch of tests on my ears but says he sees nothing abnormal. However, on one of the tests he did (the pressure test one), my right eardrum felt very different to my left one. (My right ear is the ear where I've had it worst) but I didn't bring this up because I thought it was nothing. I felt like I didn't properly convey my other symptoms (which I'll get it in a minute) and best myself up over it. He then referred me to the tinnitus clinic of which my appointment is in June.

I currently have these symptoms
-hissing tinnitus 24/7
-clicking noise when swallowing
-clicking noise if opening mouth too wide
-inability to open my mouth wide when bent backwards
-occadional random piercing tinnitus
-swirling tinnitus whilst in bed

Something intresting is that my tinnitus is constantly varying. When this variation happens, the clicking in my throat seems to follow. If it gets louder in my left ear, the clicking in my throat also becomes louder. If I get a sudden piercing high pitch noise in my right ear, I get a longer crackle in my right ear when I swallow. I also have some inexplicable "ability" I guess to do somethibs that feels like opening my eustachian tubes at will I don't know if that is normal and I don't know how to better describe it.

If it helps, I am 14 years old. Has anyone else had these same/similar symptoms and what were they pointing towards? I have read online most sources point towards eustachian tube dysfunction or patulous eustachian tubes. If it's the 2nd one I don't know how I'll cope!

You're young to be dealing with this, but it's hard to say what's likely causing it over the internet. There's a good chance you may have some ETD inflammation, and maybe a slight mucous build up. I have the same problem because of allergies, and had a camera up my nose. They originally prescribed me flixonase drops and spray, but then put me on Dymista.

Clicking in the ears whilst swallowing is normal. It's the sound of your Eustachian tube/s opening and means they aren't blocked if you hear it in both sides.

One pressing question would be: Have you been exposed to much noise? Do you listen to loud music through headphones? Have you been to any concerts? Any school parties? Etc

Try not to worry first and foremost because that will only make it worse. As for opening your Eustachian tubes at will, I do this all the time! Especially when I need to equalise the pressure when on flights for example. I can equalise my ears at will because I have voluntary control over the tensor veli palatini muscle. And so do you by the sounds of it.

 

[TTempo]

You're young to be dealing with this, but it's hard to say what's likely causing it over the internet. There's a good chance you may have some ETD inflammation, and maybe a slight mucous build up. I have the same problem because of allergies, and had a camera up my nose. They originally prescribed me flixonase drops and spray, but then put me on Dymista.

Clicking in the ears whilst swallowing is normal. It's the sound of your Eustachian tube/s opening and means they aren't blocked if you hear it in both sides.

One pressing question would be: Have you been exposed to much noise? Do you listen to loud music through headphones? Have you been to any concerts? Any school parties? Etc

Try not to worry first and foremost because that will only make it worse. As for opening your Eustachian tubes at will, I do this all the time! Especially when I need to equalise the pressure when on flights for example. I can equalise my ears at will because I have voluntary control over the tensor veli palatini muscle. And so do you by the sounds of it.

Thanks for the reply! The clicking noise isn't always in both ears and is generally louder in one than the other, and can also fluctuate in the same way my tinnitus does.

In terms of music, I do watch alot of things with headphones in but only ever on 2-3 volume notches. The only loud music I was exposed to recently was New Year's Day, all night, but that was 10 days before it all started so I doubt it is related.

 

[TTempo]

It could be sinus related or Allergies (grass or tree pollen)along with Mucous in your Eustation Tubes.
Have a chat with your doctor
Love glynis

Cheers Glynis, my appointment isn't for another month and I've had opposing views from the other 4 I've seen. Hopefully I can last out until then!

 

[Ed209]

Thanks for the reply! The clicking noise isn't always in both ears and is generally louder in one than the other, and can also fluctuate in the same way my tinnitus does.

In terms of music, I do watch alot of things with headphones in but only ever on 2-3 volume notches. The only loud music I was exposed to recently was New Year's Day, all night, but that was 10 days before it all started so I doubt it is related.

You are probably a bit bunged up. The mucous in our sinuses and nasal cavity drains down the back of our throat and this can block up and inflame our Eustachian tubes. This can create tinnitus if your tube is blocked. Do you have any fullness in your ear, or slightly reduced hearing? Do you have any post nasal drip, or any other allergy symptoms?

Noise damage is accumulative, so for future reference, always wear ear plugs when you are in noisy environments. Protect your ears.

 

[TTempo]

You are probably a bit bunged up. The mucous in our sinuses and nasal cavity drains down the back of our throat and this can block up and inflame our Eustachian tubes. This can create tinnitus if your tube is blocked. Do you have any fullness in your ear, or slightly reduced hearing?

Noise damage is accumulative, so for future reference, always wear ear plugs when you are in noisy environments. Protect your ears.

It's been 5 months which is why I'm starting to lose faith in the "bunged up" theory. My throat definitely has an unusual full feeling and, in terms of slight hearing loss, I'm not really sure. I've had brief (20 second) moments before where my tinnitus will go completely and everything will sound incredibly clear, with my throat also returning to a very normal feeling, but these are very rare and i treasure them dearly.

I'm getting off track though, yes I do have a slight hearing loss - kinda like a muffle almost - but not something that's permanent or damged.

 

[Ed209]

I'm getting off track though, yes I do have a slight hearing loss - kinda like a muffle almost - but not something that's permanent or damged.

Like I said, it's impossible to diagnose anything online, but it does sound like you're a good candidate for ETD.

 

[TTempo]

Like I said, it's impossible to diagnose anything online, but it does sound like you're a good candidate for ETD.

Is this something that lasts a long time or should I expect it to be gone by winter?

 

[Ed209]

Is this something that lasts a long time or should I expect it to be gone by winter?

ETD can take weeks, months, or even years to clear. That's if it is that.

 

[TTempo]

ETD can take weeks, months, or even years. That's if it is that.

Okay well thanks for this! I'll keep you in touch if I remember in a months time!