My (Unusual) Tinnitus Story

[Zeo]

Also my tinnitus is much louder when I'm active, even just walking or putting a coat on? Twice as loud! Then when I stop it reduces in volume. This is just isn't normal tinnitus

 

[Liesel]

It definitely sounds like you have a pretty intense form of somatic tinnitus. Glad to hear you're getting closer to treatment.

 

[Zeo]

yes it does seem like that, but i disagree with you using the word treatment as there isn't any, that TENS treatment is awfully risky as if mine got ANY worse i do not know what i would do.

 

[Liesel]

Well, if your doctor is right about the wisdom tooth/TMJ cause, then you are treatable. Did your doctor says that they would be treating you with TENS?

 

[Zeo]

No? I've not seen another one since it was suggested it was somatic ? No doc has diagnosed me , at least not properly.

 

[Liesel]

What/who suggested TENS treatment, then?

 

[Zeo]

Google somatic tinnitus and it comes up, even on this very forum too. I also experience neck issues, pinched nerves etc but tens can either make it worse or cure it totally, poor success rates though.

 

[Zeo]

Just to add this as well, occasionally I've been getting vertigo feelings and dizziness with this tinnitus, sometimes as a result of the sound being so very loud that it feels like its damaging me somehow and other times i just feel feint for particular reason.

When i DO feel faint or vertigo feelings the tinnitus is much worse, only lasts around 10-15 secs

 

[seal]

Just to add this as well, occasionally I've been getting vertigo feelings and dizziness with this tinnitus, sometimes as a result of the sound being so very loud that it feels like its damaging me somehow and other times i just feel feint for particular reason.

When i DO feel faint or vertigo feelings the tinnitus is much worse, only lasts around 10-15 secs

you might want to get checked for menieres/ a hydrops cochlea or try betahistine for some months.

 

[Zeo]

I do not have meniers, the ENT would know as he was a specialist in that condition.What is hydrous cochlea and what is betahistine? can it be taken even if i don't have it? willing to try anything at this stage.

Ime even resorting to herbal remedies here, using B12 complex's and all sorts of tablets

 

[Zeo]

Is there a form of tinnitus that gets louder when you're doing any physical activity? When my heart beats faster my tinnitus is twice as bad, it means I can't do any physical exercise at all. Or anything at all other than sitting!

 

[seal]

so you have told your ENT about the vertigo and he has done all the tests? hydrops cochlea is a pre-form of menieres and some even consider it to be a disorder on its own. you can read about it on the internet. betahistine doesn't really have side effects ( only very mild ones...) so you could try it. but if you don't have menieres it will probably don't do anything for you, as it usually only helps with the dizziness/vertigo but not with Tinnitus itself. also you would need a prescription for that...

 

[Zeo]

No, the vertigo is a recent development. Every day my tinnitus exhibits something new or changes the pattern. The only constant is that it starts quiet in the morning and gets loud in the evening,my life seems to be taking a nasty turn...

 

[Zeo]

also just now, for no reason my tinnitus has stopped? or rather its so low that i am having trouble finding it? this is the FIRST time this has happened in 3 weeks, I've not done anything special, just sitting here. I will say this though, i have a slight pinch in my neck, which I've not had for a few months….

 

[Zeo]

aaaaand its back, louder than ever! thats the first time its ever stopped for any length of time though, it was the nicest 15 minutes over ever experienced. Now the sound i have in my ears is agonisingly loud. How are some of you surviving this here? have you had to give up work? this isn't 'minor' anymore, or 'uncomfortable' this is total agony! feel like my life is over! all my plans (it was finally just starting and got going) after many years of problems, depression, struggling and now this! its hell, its like this is a cruel f**king joke! why is there a f**king cure you stupid c*nt!

 

[Sherri786]

Know how you feel, yes I had to give up a lot of plans I had for life.....
In my humble opinion, if your t went away for 15 minutes, there's still a very good chance of full recovery.
After a horrible spike yesterday due to eating some food with msg, my t is very low today.

 

[Zeo]

well i asked a dentist friend about TMJ just now and he thinks its my jaw/nerves and pressure somewhere so he advised this: http://www.wikihow.com/Cure-TMJ-with-Jaw-Exercises

I did this for 2 mins and i am now typing this with 50% of the noise i have had for weeks! its slowly getting louder again, but it seems like this is the cause? i don't want my hopes raised and then dashed (again!) but it was nice relief! the T has never gone btw, just lessened enough for me to function normally again, if only for a short time.

The jaw exercises have given me about 20-30 mins of relief, again the T is still there but its nowhere near as bad!

 

[Liesel]

Glad to hear that the TMJ diagnosis seems likely and the exercises are working for you. Time to start looking for a TMJD specialist, eh?

In my experience my T gets so much worse when I'm stressed/anxious because it makes me clench my jaw more. So don't let it bounce back! Latch onto that hope and relief, and don't let go!

 

[Zeo]

Sound got louder after my 20 mins of relief , super loud :-( mine doesn't change if I'm stressed or not!

 

[Zeo]

Just seem my GP again as i wanted a referral to someone to have a look at this. I have been refered to an ENT in 3 weeks time, will let you all know how i get on.

 

[Marie Blalock]

Hello Zeo,
I sounds like you've had tinnitus about as long as I have. Mine started immediately after a myringotomy. Has anybody ever sued a doctor for tinnitus? Because mine was caused by this procedure. I keep wondering if it will go away but it never does. Has your gotten any quieter on a permanent basis since it began? Not counting the spiking cycles. What started the T for you?

 

[Zeo]

Read the first post an u will see how mine started. Mine is quieter since I did the suction and more recently the tmj exercises, strangely it's been quieter today more often than loud

 

[Misery]

Hi Zeo,

I think it's pretty typical that it appears to get louder as the day goes on. Mine does the same most days. I'm glad you are getting things figured out and seeing professions that may be able to help you out.

 

[Zeo]

Only somatic tinnitus gets louder, mine is almost gone in the morning but by bed time it's louder than you could possibly conceive. I will not get any help and it won't get better, not from what I've read in the forums here.

 

[Liesel]

Only somatic tinnitus gets louder, mine is almost gone in the morning but by bed time it's louder than you could possibly conceive. I will not get any help and it won't get better, not from what I've read in the forums here.

That's because you're mostly reading accounts of people who have tinnitus as a result of hearing loss. That is much more up to chance. I'm telling you man, you need to see a TMJ specialist. You fit the bill for that diagnosis, and it's extremely likely that treating the TMJ disorder will cure or improve your tinnitus. Some of the reason I joined this forum is because I felt like no one was speaking up for TMJ as a potential diagnosis!

 

[Zeo]

I asked about it being tmj with my doc and she said its doubtful its that at all. I was referred to an ENT specialist not a tmj specialist, also don't forget that this all started by the use of a device that was in my ears emitting a hiss, loud or not that hiss is still here today, lets face it was just hoping it was something else like tmj so I didn't have to face the reality that I've somehow damaged my ears by the stupidest way possible.

This is true and consistent of all the weird and odd things that have happened to me over the years, why would it be any different now? Otherwise if I'm wrong it's a MASSIVE coincidence.

 

[Misery]

Well, I had loud, obnoxious T (due to noise exposure) years ago and it went away completely in months. It doesn't always stick around.

 

[Liesel]

I asked about it being tmj with my doc and she said its doubtful its that at all. I was referred to an ENT specialist not a tmj specialist, also don't forget that this all started by the use of a device that was in my ears emitting a hiss, loud or not that hiss is still here today, lets face it was just hoping it was something else like tmj so I didn't have to face the reality that I've somehow damaged my ears by the stupidest way possible.

This is true and consistent of all the weird and odd things that have happened to me over the years, why would it be any different now? Otherwise if I'm wrong it's a MASSIVE coincidence.

Correlation doesn't equate to causation. I first noticed my tinnitus when I had the flu, so I thought it was from an ear infection. I got sent to an ENT first, but he sent me to a TMJ specialist once he heard about how my T reacts to physical stimuli.

So maybe I'm projecting, but it's just too similar. I guess it's time to wait and let the doctors decide.

 

[Zeo]

Misery: you are the first person I've heard say its gone away, even that would surprise the ents and docs

 

[Misery]

The doctors have to cover themselves. They're not going to say it will go away if they don't know for certain. My T (this time round) has diminished greatly. I still have some days that are louder than others, but when I recall how it was when it first started, it's FAR LESS annoying. I still can't get to sleep without the sound generator, BUT as of the past two nights, I can fall asleep again once awakened during the night without the ambient sounds. Improvements are being made.