Found the Cause of My 24/7 Tinnitus

[Error404]

Hi All,

I have posted a few times since suddenly developing 24/7 low frequency T nearly three months ago, and now I have found the cause. I have had:

- Whooshing whenever I yawn/turn over in bed.
- Banging-thumping-rumbling sounds all over my head.
- Electronic buzzing-beeping-morse-code-clicking
- Songs blasting out of my head
- Indistinct voices
- Drones in the middle of my head
- Booming-cymbal sounds when walking.
- Waking up to my heartbeat pounding in my head.
- Feeling pressure/fluid/something moving sensations in both ears.

This, coupled with my cochlear implant suddenly distorting sounds and reverberating them through my head had me thinking I was going insane: in fact, I nearly did. I'm on Sertraline (Zoloft), valium, and zopiclone to cope. I have been terrified to move from bed for most of three months.

Three ENT's, including the one at my implant centre, looked at my eardrum and said it was a little dull, but no infection, so off you go. I was referred for tinnitus retraining therapy. I was refused an MRI as one a year ago was clear (for an unrelated family condition). I paid for my own out of desperation.

This revealed suspect mastoiditis, choleasteatoma, or yes, the type of tumour I'm at risk of growing in my head. I received the report today. On Monday, I'm going to the GP for antibiotics, and arranging a CT scan, and back to my implant centre.

I WAS IGNORED AND DISMISSED FOR THREE MONTHS YET THERE WAS AN ALIEN GROWING INSIDE MY HEAD ALL THIS TIME.

The ENT at my implant centre said, when I asked about the pressure/fluid sensations, that it was like an itch in that there was nothing there - that the inner ear can effectively make you hallucinate things.

I am beyond angry. I was suicidal at times thinking this was permanent. See if you can spot the alien inside my head that EVERYONE TOLD ME WASN'T THERE.

I am lucky. I will only have to live with this insanity for a short amount of time now. I can fully understand how some people end up throwing themselves off a bridge. I was going to sleep terrified to wake up to whatever new sound was coming the next day: it has been relentless. I have lost nearly a stone from stress. I cannot imagine how people cope with this stuff for a lifetime because I certainly couldn't.

If you think this is something wrong, you MUST push. Had I simply gone away I dread to think of further complications months down the line.

 

[Tinniger]

What was the diagnosis of your picture.....?

 

[Tinker Bell]

Wow. You are amazing, for continuing to push for answers, for being an advocate for yourself. I'm relieved you have a diagnosis, but I'm sorry that the diagnosis is a tumor.

What are the next steps? Please continue to keep us updated. Wishing you good health!

 

[Ed209]

Hi All,

I have posted a few times since suddenly developing 24/7 low frequency T nearly three months ago, and now I have found the cause. I have had:

- Whooshing whenever I yawn/turn over in bed.
- Banging-thumping-rumbling sounds all over my head.
- Electronic buzzing-beeping-morse-code-clicking
- Songs blasting out of my head
- Indistinct voices
- Drones in the middle of my head
- Booming-cymbal sounds when walking.
- Waking up to my heartbeat pounding in my head.
- Feeling pressure/fluid/something moving sensations in both ears.

This, coupled with my cochlear implant suddenly distorting sounds and reverberating them through my head had me thinking I was going insane: in fact, I nearly did. I'm on Sertraline (Zoloft), valium, and zopiclone to cope. I have been terrified to move from bed for most of three months.

Three ENT's, including the one at my implant centre, looked at my eardrum and said it was a little dull, but no infection, so off you go. I was referred for tinnitus retraining therapy. I was refused an MRI as one a year ago was clear (for an unrelated family condition). I paid for my own out of desperation.

This revealed suspect mastoiditis, choleasteatoma, or yes, the type of tumour I'm at risk of growing in my head. I received the report today. On Monday, I'm going to the GP for antibiotics, and arranging a CT scan, and back to my implant centre.

I WAS IGNORED AND DISMISSED FOR THREE MONTHS YET THERE WAS AN ALIEN GROWING INSIDE MY HEAD ALL THIS TIME.

I am beyond angry. I was suicidal at times thinking this was permanent. See if you can spot the alien inside my head that EVERYONE TOLD ME WASN'T THERE.

I am lucky. I will only have to live with this insanity for a short amount of time now. I can fully understand how some people end up throwing themselves off a bridge. I was going to sleep terrified to wake up to whatever new sound was coming the next day: it has been relentless. I have lost nearly a stone from stress. I cannot imagine how people cope with this stuff for a lifetime because I certainly couldn't.

If you think this is something wrong, you MUST push. Had I simply gone away I dread to think of further complications months down the line.

Well done for sticking to your guns. As one Dr once told me: 'we know our own bodies better than anyone. If something doesn't feel right, persist until you are properly assessed.'And it's true.

I hope that whatever problem you have now can be resolved. You must be terrified, but try not to be until you know more. I wish you well.

 

[Error404]

It *may* not be a tumour: it may be chronic mastoiditis. I am just SO angry. I'm sure many here can empathize at feeling frustrated with ENT's. You go thinking something will happen, and all that happened to me was a cursory look at my eardrums - a little dull they said, but not to worry, off you go, we'll send you to the tinnitus clinic where you can learn how to "mindfully" accept the nightclub inside your head.

I should be treated within a few weeks now as it's fairly urgent. I just hope my implant can be preserved: worst case, I guess, is re-implantation at a later date.

As of now, I'm on the wine and trying to enjoy the weekend whilst booming away.

 

[Error404]

Oh, and when I went to get my implant checked out by the audiologist this week, she said:

"Things will sound loud and distorted if you don't use it enough. You may have brought this on due to stress" !!!!!!

I was using it most waking hours until it suddenly went mental: it's been brilliant for three years. She also said, when I explained about the physical sensations, "I think you need to trust Dr [x] with his years of experience in cochlear implants."

They have made me feel like I'm imagining it throughout this journey, and there it is, plain on the MRI.

 

[Luman]

It's great that you kept pushing for the answer - you certainly had enough symptoms and problems for ten people. Hope this is resolved, and you're better, real soon.

 

[GregCA]

I WAS IGNORED AND DISMISSED FOR THREE MONTHS YET THERE WAS AN ALIEN GROWING INSIDE MY HEAD ALL THIS TIME.

Yup it does happen. I've had a similar issue and kept asking for not second or third opinion, but sixth and seventh... I had to go out of network and pay out of pocket to finally get a diagnosis after half a dozen people failed to see anything from my imaging results.

It pays to be persistent. Good for you.

 

[Holly1987]

Well done for persisting, I completely understand your anger. A few years ago I was feeling awful, just so unwell. I went to 4 Drs and they all ran basic tests and told me I was fine (one suggested I see a psychologist for depression)

6 months later my kidneys started to fail and I was rushed to hospital, turns out I had lupus. I nearly died! I wish I trusted my instinct and had not given up looking for answers like you.

 

[Error404]

I thought I'd update this.

My implant centre have dismissed my MRI report as showing "scar tissue." I would point out that the "scar tissue" is on both sides (albeit to a less significant degree on the left), and that the sounds I am hearing, along with the physical sensations, coincide with the location of the big white blob!

They have asked that I send the images over to their radiographer who has expertise in looking at those with cochlear implants. Meanwhile, I have arranged my own CT as per the recommendation of the report as this will confirm if it is a (chronic, not immediately worrisome) infection or some type of small tumour. Timewise, I am not losing out, but financially, I have to fund these tests myself. The NHS has let me down on this occasion. When I have some idea of what I'm dealing with, I will be going to PALS about the dismissal of my symptoms (U.K complaint body).

Holly, it's insane isn't it? I think that, if we're a woman of a certain age, some male Dr's do the bare minimum and dismiss us as neurotic hypochondriacs. It seems to me that some will bounce around looking for answers until a critical event happens, like yourself.

I'm reassured I don't have anything wrong with my brain (well, only being sent demented from unmaskable 24/7 weird T), but it seems I do have a glaringly obvious middle ear issue which is highly treatable if my implant centre bothered to take action. My images are nearly identical to mastoiditis, and I'm fairly sure scar tissue would have a somewhat slightly different appearance. It's too big a coincidence that I'm getting peculiar sensations in my ear (rapid machine gun firing sounds at times, something thumping against my eardrum!) and this weird T.

Hoping the CT will corroborate the MRI so things can get moving.

 

[Error404]

More alleged "scar tissue" - even I can see the anomaly. Makes me feel like I'm going insane! Cannot see how the CT won't show this up too.

 

[bur547]

When I went in a few years ago because of problems with my ear, the hearing tech told me "It might be a growth, but it's not worth getting an MRI for. We could end up doing all kinds of tests and still never finding a cause." Now a few years down the line I have 24/7 Tinnitus. Should I waste my time and go back there, just be dismissed again?

 

[dayma]

When I went in a few years ago because of problems with my ear, the hearing tech told me "It might be a growth, but it's not worth getting an MRI for. We could end up doing all kinds of tests and still never finding a cause." Now a few years down the line I have 24/7 Tinnitus. Should I waste my time and go back there, just be dismissed again?

Maybe try to find a doctor with more empathy to work with. They are out there , trust me

 

[GregCA]

the hearing tech told me "It might be a growth, but it's not worth getting an MRI for.

I'd get a second opinion, if I were in your shoes.

 

[bur547]

@dayma @GregCA Thanks, I guess I will but not sure how to orchestrate seeing a better doctor and getting someone to take me serious. The Specialist didn't even interview me, didn't look at my hearing test. He put a tuning fork beside my ear and said "Do you hear that?" I said "Yes" He said "You're fine." He did this in the waiting room.

 

[dayma]

@dayma @GregCA Thanks, I guess I will but not sure how to orchestrate seeing a better doctor and getting someone to take me serious. The Specialist didn't even interview me, didn't look at my hearing test. He put a tuning fork beside my ear and said "Do you hear that?" I said "Yes" He said "You're fine." He did this in the waiting room.

That's Weber and Rinne testing and is actually legit. I am not sure what country you are in but it should be as simple as calling another hospital system or calling the same one and asking for a second opinion. Every system can accommodate that as it's extremely routine.

 

[bur547]

That's Weber and Rinne testing and is actually legit. I am not sure what country you are in but it should be as simple as calling another hospital system or calling the same one and asking for a second opinion. Every system can accommodate that as it's extremely routine.

If only I was visiting a doc because I couldn't hear tuning forks, lol. The man would have been a miracle worker.

Anyways I'm in the middle of a slow and painful process of finding a doc who gives a damn. Not easy.

How you doing @Error404 ?

 

[Error404]

Hello!

Waiting for my CT scan, and then we'll go from there. My implant centre are also getting a clinical expert from Cochlear to come to my next programming appointment as there is a lot they can do which the audiologist might not necessarily know about. I'd be thrilled with suppression whilst it's on - it's the 24/7 nature of this which I find horrific.

However, I've not had an awful week and the sounds are barely detectable at times! I forgot about them whilst gardening yesterday and stood there in shock wondering what had happened! When this sets in you do seem to go on red alert "scanning" to see if the noise is there.

It's the physical symptoms which make me think there MUST be a cause. What on earth can cause a machine gun noise against your eardrum that is out of sync with your heart beat?!?! It booms at times! Then my ear feels weird, like a sense of pressure. It's bizarre.

 

[Jkph75]

I had a very similar experience. I was already deaf in one ear when my symptoms began in my other ear. Every doctor I went to concocted some different story about what could be happening to me. None of it made any sense. No one was concerned. Then, I started losing my hearing but not dramatically. Still no concern. I must have been almost 2 years into this when an air bone gap opened up and I was finally diagnosed with Otosclerosis. Now even with the diagnosis, no one is concerned, which is of no surprise at this point.

I can totally relate to all of the sounds/feelings that you have. I can tell you that the sensations are just a part of tinnitus and have nothing to do with what is causing your tinnitus. I, like you, am often in complete astonishment at the cacophony of insanity which plagues my head. There are few people, even within the tinnitus community, that can relate. It is truly horrible. That being said, 2 years in I can also tell you that I have learned to live my life with it. I don't think about whether or not I am hearing it...of course I am almost always hearing it lol. Some days are worse than others but I have stopped freaking out about it. It seems impossible but you will get there too.

 

[Error404]

Hi JKPH,

Well, things have moved on a little for me and, fortunately, the worst of the sounds seem to have stopped! The zapping, banging etc started fading over a few weeks and WENT last week. I now have a sort of low drone/sort of like a motorbike revving up (?) - hard to describe. At any rate, the sounds are no longer reacting to external sounds and increasing in volume! I still have weird whooshing when I move (mainly in bed) and an odd echo quality when speaking. Your diagnosis of an air-bone gap is interesting as I imagine that could produce echo/reverberation type sounds? Is there really no treatment for your otosclerosis at all?

I get the final results of all my scans next week. They have had to be sent to my implant centre's radiographer as there is a dispute about what they show: it is either a latent infection or a complication of my implant. If the latter, then it's a case of living with it as changes to the bone are non-pathological.

I didn't know the fluid sensations and thumping against my eardrum were a part of T? It's beyond weird. Though the thumping also seems to be fading.

I am MUCH better since I started this thread. Sertraline (Zoloft) has worked really well for me and I'm no longer having the response I once did. I'm also seeing an audiologist at the local tinnitus clinic and attend a monthly support group. I'm engaging with life again, and although there is a way to go, I'm not bed bound and feeling suicidal like a month ago - feels like someone else.

I have periods of silence now, and when the T does start, it's quieter than it was before. I'm starting to forget about it when genuinely engaged in things too. This must be the road to habituation that people talk about!

 

[dayma]

Hi JKPH,

Well, things have moved on a little for me and, fortunately, the worst of the sounds seem to have stopped! The zapping, banging etc started fading over a few weeks and WENT last week. I now have a sort of low drone/sort of like a motorbike revving up (?) - hard to describe. At any rate, the sounds are no longer reacting to external sounds and increasing in volume! I still have weird whooshing when I move (mainly in bed) and an odd echo quality when speaking. Your diagnosis of an air-bone gap is interesting as I imagine that could produce echo/reverberation type sounds? Is there really no treatment for your otosclerosis at all?

I get the final results of all my scans next week. They have had to be sent to my implant centre's radiographer as there is a dispute about what they show: it is either a latent infection or a complication of my implant. If the latter, then it's a case of living with it as changes to the bone are non-pathological.

I didn't know the fluid sensations and thumping against my eardrum were a part of T? It's beyond weird. Though the thumping also seems to be fading.

I am MUCH better since I started this thread. Sertraline (Zoloft) has worked really well for me and I'm no longer having the response I once did. I'm also seeing an audiologist at the local tinnitus clinic and attend a monthly support group. I'm engaging with life again, and although there is a way to go, I'm not bed bound and feeling suicidal like a month ago - feels like someone else.

I have periods of silence now, and when the T does start, it's quieter than it was before. I'm starting to forget about it when genuinely engaged in things too. This must be the road to habituation that people talk about!

Really good to hear a positive story and that you are starting to engage with life again.