Tinnitus Has Gone Insane — No Clear Answers, Please Help.

Hi All,

There is a bit of a puzzle going on, and I wondered if anyone has any suggestions. I have a cochlear implant, and over three weeks this has happened:

- Booming-thumping-all kinds of mad low frequency tones in head. I swear I was hearing hymns at one point.
- Sounds are echoing when I have my implant on and loud ones tend to increase the tinnitus.
- First GP said ear infection in non-implanted ear, took antibiotics. Eardrum went from looking about to burst to "dull."
- Second GP said eardrum in implanted ear looked red. Different antibiotics. This now looks "dull."
- Saw an ENT today who said although my eardrums look dull, there is not much, if any fluid behind them as I didn't have a flat line on the tympanetry (sp?) test. But then why do they look dull? Is this a sign of things clearing up after inflammation? I swear I can sometimes feel trickling behind then, especially when lying on my side.
- Louder sounds amplify some of the noises in my head. The t.v, for example, produces some sort of echo/reverberation.
- ENT has now referred me back to my implant centre.

The worst of the booming noises appear to have subsided this week. They are still there but not as loud. It's now mainly a whooshing/roaring which doubles in volume whenever I yawn or roll over in bed. It is NOT in time with my heartbeat. When I put my implant on, this mostly vanishes.

ENT's suggestions were:

- A disturbance somewhere along the cochlear-hearing nerve. Could this be some sort of virus?
- A new form of tinnitus due to losing what little hearing I have left.
- Cochlear implant malfunction (though I don't understand why I'd have the sounds when it's off as well).
- Tumour somewhere along the nerve - but I have regular MRI's for an unrelated condition and my last one was nice and clear in June. I am also not having other symptoms such as dizziness, headaches etc.

So I seem to be a bit of a puzzle. I feel like I'm going mad. GP has now given me valium and zopiclone in the short term as I've been lying in bed terrified to even move having constant panic attacks, only sleeping for an hour at a time.

Sorry if this is long. I am desperate for some help or suggestions on how to improve this whilst I'm waiting on my next appointment.

 

It could be sinus related so try a antihistamine and nasil spray.
Love glynis

 

Really? Wouldn't you get pressure/pain with sinus issues? I guess if there is fluid the echoing/distorted sounds might be a result of bouncing off it. I will try. Nothing to lose at this point.

 

Those antibiotics could possibly be the culprits. Going on, rounds of antibiotics is never a healthy thing. Sure, we need it at times, but they can also cause annoyance too. It can take some time to get back on track, after taking antibiotics.

Hope you feel better

 

Sorry to hear this is happening, I understand how you feel. What antibiotics are you taking?

 

First one was amoxicillin after left eardrum looked about to burst. Second one is clarithmyocin which is making me throw up. The noises started before the antbis, though I'm sure the whooshing has gone more mental since taking them. I'm finding it hard to believe that 24/7 booming can be tinnitus and not a sign of a life threatening event!

 

And can normal tinnitus, like a roar, become even louder by simply moving? Have never experienced anything like it and half expecting to drop down dead from some brain event!

 

Just an hour ago I was reading about the "Materials used for cochlear implant mechanisms "( Titanium ,ceramics ,silicones etc ) and they said that Antibiotics cannot reach the cochlea area . There is some dividing line between the cochlea and the rest of the body .To reach the cochlea with medical fluids they can implant a pump which uses the cochlear implant tube . It`s a convenient double use for the tube . Maybe normal doctors have not read that site .

 

Some antibiotics can actively damage the hair cells in the cochlea. It`s called Ototoxicity . Be very wary of that .

 

First of all, many of us have been there, and you are going to be ok! I'm so sorry you are experiencing this spike and panic. IT WILL PASS. You'll be ok.

Last summer, I had something somewhat similar (booming and echoing noises, increased with movement), and my ENT put me on steroids. I was also getting an additional loud ringing commensurate with moving my jaw, singing, or speaking (in addition to the usual high pitched tinnitus I have). The booming and echoing went away within a week with the steroids. I was extremely nervous and scared. I do not have a cochlear implant.

Take care of yourself. Please keep us posted. I'm sure it will all be resolved with the implant and great doctors. Did they talk about steroids?

 

Aminoglycoside antibiotics are known to be ototoxic. These are antibiotics ending in 'mycin'. That could be the cause or contributing factor to your problems. However, whooshing sounds, which I also experience are usually related to blood vessels or blood flow. I get whooshing sounds with changes in blood pressure or blood flow, eg, when I lie down and move from left to right, when I yawn or go from lying down to standing up. This is not usually anything sinister. Hope things settle down for you.

 

@Error404 ,
How are feeling now ?
clarithmyocin might have been the cause,I had the same problem with Doxycycline so had it put on my notes not give it me again.
Love glynis

 

Hi Singer,

So you too had booms in your head and distortion of sounds? I felt that the ENT was slightly dismissive and just wanted the implant centre to deal with it (waiting to see them), but just because I have a CI doesn't mean I can't get unrelated ear things - I'm actually more susceptible because of the surgery. He said I could try a nasal spray in case there was a small amount of fluid behind the drum and that was it. Why would they look dull if no fluid?

Steroids could make sense: it might be swelling in/around the cochlea itself. I might go back to my GP and suggest that whilst waiting for more specialist appointment. Surely can't hurt.

Glynis. The antib increased the whooshing? I mean, I had it before starting them but it's mental now. Only have to move slightly and it's like a wave goes past my ear. Is that what happened to you?

 

Us there a specific type of steroid to ask for? I've only had prednisolone before for an asthma flare up. Or is there another sort to ask for?

 

I think it was, indeed, prednisone. Can you get a script right away? Might help you. Of course, I'm no MD. I just want you to feel better.

 

@Error404 ,
It made my tinnitus to bad to cope with even with hearing aids.
Maybe pop in to your out of hours doctors see if they can give you something.
Love glynis

 

I can't do much until Tues when the lady who deals with my case is back at the implant centre (I'm not regarded as an emergency as I have e.g. no pain, dizziness etc). I think I'll be called in to possible re-map the implant and to see if something is going on internally - I just wish I could stop being so terrified of it all, but surely, if it was life-threatening I wouldn't have been walking around like this for three weeks.

 

Let us know how you get on Tuesday..
Try stay relaxed and soft music on when needed.
Love glynis

 

I was surprised to see that Ibuprofen is able to damage the cochlea .And reading the above comments reminded me to say that some nasal sprays can also damage the cochlea . One of the ingredients is contained in the mixture. I think chemists shops should have high powered magnifiers to read all those tiny instructions . I saw today a long , long list of the various different names of medicines containing damaging ingredients . I was taking Ibuprofen because a large labrador dog crashed into my knee while I was innocently watching a Rugby Match . That was six months ago and the knee pain still gets me in the night . I always had a warm ,soft spot for Labradors . Not so much now though . They are 70 pounds plus and crashing into my knee it`s like a sack of cement .

 

Hi all,

Got an appt tomorrow to reprogrammed my implant, and then I'll be seeing the consultant in a few weeks as they might want to do an MRI. I'm not sure that reprogramming will fix it as the booming etc is there without it, but it may help with the worst of the effects. The centre did say they have seen this sort of thing before including the weird tinnitus and that I can be reassured about scary causes - even worst ones should be fixable.

Meanwhile, my GP has given me Nortriptyaline - taking the first one before bed tonight.

I've had two good days this week in that sounds were not quite as bad. If this is a virus, might be start of improvement - seems ear related things take a while to fix. Still waking up with a drone/rumble in implanted ear that is so deep it almost feels like a vibration but hoping the antid will help me sleep through it a bit better.

Bit concerned that when falling asleep I swear I can feel my head vibrating, but it doesn't happen at other times so it's possible I'm manifesting other symptoms through stress - been too terrified to move from bed for three weeks so desperately needed an AD until the physical stuff gets sorted (and to deal with the realisation it may not if this turns out to be a new form of tinnitus).