Extreme Tinnitus (ear infection?) - Help!

[Godstopper]

Something very strange has been happening to me since late February, and I'm rather worried. I wondered if anyone here has any suggestions (I'm seeing an ENT tomorrow). Timeline is this:

Feb 21st: A nightclub decides to move into my head with an array of thumping-banging-booming sounds IN MY HEAD (not ears). In addition to my usual high-pitched tinnitus, I've also started hearing:

- A low drone in the middle of my head (like being plugged into a fridge).

- Extracts from hymns (I am not joking)

- Musical type tones

(I appear to be able to modulate this - if I think of a song the tone appears to take on its characteristics!)

- Voices (muffled, like a radio in the background, though I've had this before just not as frequent as now).

- Electrical type buzzing tone

/zapping tone for a few seconds on and off for hours

- A whooshing/roar in my right ear whenever I yawn/turn my head/move from side to side.

- Ultra low rumbling in my head. Thumping as if something is hitting my brain (though of course, it can't be or I'd be dead!)

In addition, my cochlear implant is making my voice sound like a megaphone. All other sounds seem fine.

Some of the sounds can't be masked as they become louder with external sounds as if they are trying to compete to be heard.

This is mainly the thumping/booming.

Around the 5th of March (one-two weeks into this): An infection shows up in my left ear (eardrum looked about to burst/had a temp). GP gave amoxicillin. Eardrum changes from that to looking "dull."

About a week later: Right eardrum alsostarts looking red, second round of antibiotics. That too changes to looking "dull."

Mid-March: Get seen by an ENT at the local hospital after the A & E ENT referred me (I went during a particularly bad spell). When he heard the words "cochlear implant" he switched off and immediately attributed EVERYTHING to that which is nonsense as I'm hearing noises when it's not on. I knew he was useless when the first question out of his mouth was:

"Why do you have a cochlear implant?"

I dunno, because I'm deaf! He briefly checked for infection then demanded I do a hearing test on my non-implanted ear. That's actually inappropriate: I'm at the bottom of the audiogram and have been for 30 years. The tympanogram revealed that my eardrums were moving, but not as much as they should: he said it was still normal (but I can FEEL fluid?).

I'm now seeing my implant surgeon/ENT tomorrow as everyone just goes "cochlear implant, can't deal with it, go see the centre" which is VERY frustrating: it is something affecting my implant and NOT vice-versa. The audiologist at my implant centre confirmed that everything was working as it should (I'm still hearing all the frequencies as before with my CI on). The audiologist also confirmed that both eardrums were still looking "dull" and not 100% moving.

I also have a sensation on/off as of something knocking against my eardrum: it is not in time with my heartbeat. I have felt fluid (I think)

.

So my questions are:

- Can an infection (it must be viral) really cause this array of constant sounds? It's VERY ABNORMAL tinnitus for me, especially with it being in the head.

- Can an infection last for months?

- Can an infection make sounds sound weird? It's my voice that's the main issue.

I was experiencing some sound distortion - like a broken speaker - but that appears to have gone.

I have been given Nortriptyline as that can reduce tinnitus for some people and help them sleep. I've also had valium and zopiclone. Been given Betahistines too on the off-chance they do something. I'm now trying the Otovent balloon as I can definitely feel something moving in both ears, steam inhalation etc.

I am also terrified that this may be caused by something more serious like a brain tumour! It's hard to believe that an infection can cause all of this, and the sounds started before the infection visibly showed up - but I guess that may have been the initial manifestation of it?

I now have NO concentration, spent the first month terrified to move from bed, and I try to sleep as long as possible because at least then I don't have to listen to the schizophrenic orchestra in my head. I'm at the point where, if this is a permanent change, I'm not sure I can cope. The ONLY reason I haven't yet done something is because I'm holding on for my appt and tests which may reveal a fixable cause: if it turns out to result from further degeneration of the cochlear/hearing nerve then I seriously don't want to be here.

[Jolaoso]

Thank you for sharing this with the community. I truly hope and pray that you will find a solution, or at least some relief from this very soon.

Jolaoso

[Hidden]

Hi Godstopper.

Your the only other person that I know who has what my Audiologist dignosed me with 3 yrs ago Musical Ear Syndrome (MES)

Following a heart condition I was put on powerful medication and like yourself suddenly hearing classical music -singing - all sorts of sounds in head...Sent for MIR scan but no brain abnormality found...Only explanation was the medication...

Three yrs on my hearing has deteriorated to a degree that it necessitates two hearing aids.

The sounds and music vary depending what I have been listening to and there is no respite from it night or day...

I sympathise with you it is horrible and frightening..

Your not going mad just unfortunate l am surprised your GP hasn't refered you for an MRI scan to alleviate your fears...

Eventually you will learn to live with and accept it like l have had to...

If you would like to private message me please do so...I am unable to answer a lot of your questions but I may be able to offer reassurance so you dont feel so alone and isolated...

Carol.

[Godstopper in reply to Hidden]

Hi Caromia,

No MRI as I have one every two years as I have a cancer causing gene: it was explained to me today that, since my last MRI in July was clear, there is little point in sending me for one now.

Do you hear sounds in your head too? I find this much more disturbing than in the ear tinnitus.

With me, it's extracts from songs: Auld Lang Syne anyone? It is insane. I also have what sounds like a male opera singer. Pity we can't change it to sings we actually like!

My implant centre are now going to reprogram my implant to try and make voices more tolerable, and I'm going to be given more control over the settings so I can adjust them if I'm having a bad day. I'm also being referred to the tinnitus clinic.

Have you had any experience with a tinnitus clinic? Have you tried any supplements or medication that may reduce it?

I can only deal with day by day right now. Feels completely surreal that this has happened to me. Do you feel like that? Whilst this is not life limiting, it most certainly is life altering.

Has any if it subsided in intensity over time? The ENT said two months is very early days for this sort of extreme tinnitus and many do see improvements.

I know it's wrong but I'm now impatient with those bothered by high pitched ringing. Turns out it can get much worse!

[Hidden]

Hi Godstopper,

The first time l heard it I was closing my front door when I heard someone singing a tune from Les Miserables l thought it was probably a neighbour but hadn't any idea who.As l was driving away the sound stopped but to my horror as l entered my place of work the same song and the same voice ...I really thought I was loosing my mind.Since then it has progressed to full orchestras La Boheme.-Beethoven- Mozart and male voice choirs...I studied Classical music from an early age so most is familiar and repetitive. ..

There are other sounds too in the centre of head banging and clicking continuous and never ending.

I have studied and practiced Cranial Sacral Therapy for nearly 30 yrs sadly I know from experience this will have no benefical effect..

An audiologist explained it was due to the deafness and possibly the rare contraindication to the heart medication.Like you I have to live with it as there is no alternative but it a struggle believe me...

I try to eat bland unadultered food as anything spiced or processed will exacerbate the sounds even more...

Tinnitus Clinic was a waste of my time Audiologists too were disappointingly lacking in knowledge of this condition...

Believe me when I say you will learn to live with it - try to concentrate and get involved in other aspects of your life to deflect attention away from the sounds in your head.The more you stress about it the louder the sounds become...

The best of luck..

You are not alone.

Carol.

The MRI scan was on the Cranium.

[matthew222]

Hi there I can only sympatize with You as I cannot imagine what are you going trough Apart from my tinnitus which was going into any king of high pitch, hum metallic noise , buzz I had for about 10 minutes clock ticking in my head which was really surreal it happened only once. I can only wonder if that would be something to do with a cochlear implant that you have? Did you consulted with cohlear implant specialist ?

[Godstopper in reply to matthew222]

Hi Matthew,

Surreal is exactly the right word. I had NO idea that tinnitus could manifest itself as being in the head until this insanity began.

I saw my implant surgeon/ENT yesterday. He said it's not an implant issue (as that got tested a few weeks ago) but it's perhaps been triggered by my ear infection or a result of my progressive deafness (I'm now at the bottom of the audiogram across all frequencies without my implant on). Whatever it is isn't something that's going to show up on an MRI.

He also said I was probably essentially hallucinating the physical sensations in my ear! This was because I had a normal pressure test showing no obstruction in the middle ear; he says that inner ear malfunctions can cause people to feel things that are not there - it feels exactly like fluid to me. Very odd.

They are going to reprogram my implant to try and make voices/lower sounds more tolerable to me and also give me more control over the settings so I can adjust them if I am having a bad episode.

Medically, I'm at the end of the road as I don't have something sinister causing the sounds.

I sort of feel like there should be a word that describes the 'before' and 'after' with this: I feel like two very different people.