Two Months On ... Mixed Feelings

Hi All,

I posted a month or so ago as I had had a sudden onset of various low frequency sounds in late Feb. I no longer have:

- Rumbling sounds
- Electrical zapping-buzzing
- Vibrating sensations
- Musical tones
- Hymns/extracts from songs

But I *am* left with a thumping-banging-static type noise in my head on bad days. On a good day, such as today, I have a faint sort of metallic drone (it's hard to describe - no tinnitus sound matches it on-line). Does this mean my nightmare might be going away? What concerns me is I'll have a few good days and then suddenly wake up to a day of thumping that also reacts to voices and the t.v and feel like it's never going to end. It's fluctuating a lot. Is that a good or bad sign?

I've also noticed I'm having episodes of sound distortion when words break up. I have a cochlear implant but I'm pretty sure I'd be getting a similar effect were I hearing. I've noticed that when I get sound distortion, I can feel what seems to be fluid in my ear. However, I saw my implant surgeon/ENT a week ago and, after I had normal-ish pressure tests and opaque (but normal he said) eardrums, he said that it was essentially a hallucination possibly owing to a fluid imbalance in the inner ear - he likened it to an itch where you feel something but there's nothing there. I don't understand this at all: it feels like it's going past my eardrum, and I'd be more inclined to believe him if I was not experiencing sound distortion. Does anyone have any suggestions as to what this may be? He said he didn't know and put it down to part of the T.

He said an MRI wasn't necessary as my one from July (for an unrelated condition) was clear. It concerns me that he is relying on a 9 month old MRI. However, he said if there was anything sinister there would be other symptoms. Can tinnitus be the *only* symptom of a tumour or anything else nasty? Wouldn't it be getting even worse instead of having some good days? My mind is not entirely at rest and I'm at a point where I'm thinking of paying for one for piece of mind.

I'm getting my implant reprogrammed on the 9th of May as my voice sounds stupidly loud and other voices/the t.v often boom and reverberate through my head. I don't know if this is the tinnitus reacting or an implant issue. What I can't understand is, if it's an implant issue, why the T continues even when I'm not wearing it. I guess even if my implant initially caused it things can get stuck in a loop in the brain. It's mysterious.

I feel like my life has been more or less upended by this. On a bad day I go into why-me-feeling-suicidal mode as I was doing SO WELL with my implant and feel like this has been taken from me. On a good day I feel things may finally be righting themselves. It's the up-and-down nature of this which I find so hard. I never know what I'm going to wake up with.

I am being sent to a tinnitus clinic for tinnitus retraining therapy, but I have some scepticism as everyone else talks about habituating to tones, where the sound that I cannot cope with is a full on thumping-banging noise as if my skull has become a metal bucket and someone is pounding against it with a hammer. I don't even know where to begin habituating to this, especially when it becomes even louder in response to sounds. It literally leaves me bed bound.

Any thoughts/advice at this point would be very much apprecated

 

Apparently alone on a T forum ...

 

Hi @Error404 ,
Hope your re tune will help.
Try cut out salt from your diet and stimulants and see if that helps and play relaxing music you like to help you unwind.
I'm not sure about implants but maybe have your BP checked and bloods checked out.
Love glynis

 

Thanks Glynis.

I too was wondering about a low salt diet: it's shocking what's in food when you're not paying attention. The ENT did suggest that the various sound effects could be related to some sort of fluid imbalance in the inner ear and said it wasn't full-blown Meniere's but might well be a sub-clinical form?

BP remains low (dunno how ... this episode is beyond stressful). What bloods should be checked for new and unusual T?

I've booked a private MRI for next week now. Realistically, I'm not expecting anything to show up, but I need peace of mind so that I can then focus on adapting to this rather than panicking about sinister causes.

 

Have your Iron checked out as low iron and anaemia can cause tinnitus.
Love glynis

 

Im very interested in this. I have something similar where my own voice, and those of other people seem to sound a bit off. Like there is some electric static echo sound lingering for a millisecond after I or other people, or sometimes even the tv make sound. And every time I have this it indeed feels like my ear, nasal passage and throat are full of mucous, and I need to swallow to get it out. It comes and goes, its definitely not there all the time but it is worrying me a bit. Im scared it might be hearing loss, but then have no explanation as to why it seems to come and go. My ears also crackle and pop a lot when I yawn or swallow. The cracking is probably my TMJ, but the popping is definitely my eustachian tube.

 

Yes. Off is definitely the right word: it's hard to articulate. In my case, I am having episodes where words start to break up, so instead of 'hello', I'll get 'hellllllllllo'. But other sounds are normal: it's just voices and the t.v. I'm terrified my implant is malfunctioning as, for me, it's the equivalent of you losing your hearing. However, it's been tested and all works well - it really does seem to be something physical in me. My own voice makes me jump. It's just too loud.

I don't know if an implant issue has caused this insane tinnitus or whether the t is affecting my implant. Guess I'll find out when I get a new program.

I'm trying steam inhalation, otovent, gargling with warm salt water ... I can definitely feel fluid moving that the ENT said couldn't be there as I had a normal-ish pressure test. Dunno how "opaque" eardrums that were not 100% moving as they should can be "normal" and have no fluid behind them, but there you go ... this is what I'm told.

 

When my TMJ was really bad my sound warp was intense. Noises that didn't even sound like T were twisted to sound like wines. (The washer, or the shower water! Drove me insane.) As my TMJ has gotten better it's eased up. Though sounds still come off odd. Though my hearing test says that I haven't lost anything. The pop I have is my tubes as well, but I also have severe pressure/equalization issues. From what I gather ETD/TMJ can cause crackling in the ear. Sometimes when it crackles it feels like my ear is "spitting".

 

I get electrical zapping on my bad days, on better days I have a quiet high pitched squeal and a low rumbling. What I can tell you for sure is that tinnitus is never over, even when it appears to be gone it's waiting just below the surface for something to trigger it. I don't think many people here have experience with T and an implant. Last I checked people thought an implant would be drastic but effective treatment for tinnitus.

If your own voice sounds too loud for you, then I think it might be the implant unless you are talking in a noisy environment. When I talk sometimes at an outdoors level I get a lot of distortion in one ear, sounds like a blown speaker. You might have something similar but sounding more electronic because of the implant.

 

Hey @Error404 I have reactive zapping-static sounds in both my ears that get louder around white noise. You said yours went away? I am so sad I could deal with the other tones if I didn’t have this electrical zapping in my ears, it also sounds like air coming out of a tire in my ears...

Did you experience anything similar? How are you doing? I just got a CT scan ten minutes ago and feel sick and sad