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.