Screaming Tinnitus

[tinnitussufferer]

I have what would be described as screaming torturous tinnitus. Its not funny at all. At night, it is one of the many things which makes sleep difficult and in the day I have to constantly be trying to distract my mind.

It is hell on earth

 

[RicoS]

Can you mask it at all?

 

[tinnitussufferer]

yes but I dont want MORE noise on top of noise that I already have. I want to be able to switch off this noise and have silence.

 

[billie48]

If habituation is not what you want, then treatments or meds may be way to go. We just have a member posting a success story on the Quiet-1 trial of Autifony with 75% reduction in loudness over 4 weeks. The Treatment forum also contain useful info on AM-101 as well as Trobalt. So there are good things on the horizon. For the mean time though, habituation is one thing most people will have to rely on. This is just being realistic and compromise has to be made sometimes in life in order to still function under constant T. The spirit of compromise and accepting the new normal is what many posters express as a way to move on with their life. Here are two doctors posting how they treat T and masking T when required as a new sound experience or a new normal. This may not be the final solution, but the approach sure buys us time to allow us to function until the final cure of T is found:

https://www.tinnitustalk.com/threads/curing-tinnitus.4136/page-5#post-40854

https://www.tinnitustalk.com/threads/how-cbt-helped-me-live-again-dr-hubbards-story.4608/

 

[tinnitussufferer]

do the drugs have side effects? is the 75% reduction permanent or temporary?

 

[erik]

do the drugs have side effects? is the 75% reduction permanent or temporary?

Not 100% sure because the sample size reporting back to us is small but I believe it is not permanent and you have to continue to take the drugs.

Screaming T is tough. I often have nights with it but I would rather sleep without masking. Personally, I have never really found masking to be much help though I did do it in the beginning. My screaming T is usually a result of playing some type of sports which really ramps up my T, but by night I am usually so tired from it, I can fall asleep with no issues.

When I first got T & H several years ago I couldn't sleep or had very broken sleep for months. Also after I got passed the initial shock of T and my H calmed down, I started to get real active again with hiking, biking, soccer, basketball etc to wear myself out so much that I had no other option but to fall asleep at night. I found it has worked well for me to this day.

 

[billie48]

do the drugs have side effects? is the 75% reduction permanent or temporary?

All drugs have some sort of side effects but that doesn't mean all users have side effects. Each person will have to use wisdom and work this out with the doctor prescribing the meds. It all depends also on the cost and benefit side of thing. To some people, the suffering is too much w/o the help of meds. So taking meds give them their last resort (as in my case during the first 6 months or so of my T). If they can't function w/o meds, then why not?

The 75% reduction according to the poster is temporary. But that is the case with taking meds for high blood pressure, diabetes, prostate, headaches etc. etc. As long as the side effects are not too bad, it is not a bad solution to screaming T at all. If Autifony can come out to the market after satisfactory trials for effectiveness and safety, that will be some kind of positive news for the T community at large.

 

[Gabrielle]

@tinnitussufferer

I can imagine it's the hell on earth... Do you have it this bad since 2004??
How can you manage?
I have T since 1 year plus 1 month (May 3th 2014).
The panic attacks are gone, but I am sooooo tired of that sounds in my head..............................................................
and so sad, because I always loved silence.

How do you cope?

Wish you the best,
Gabriëlle

 

[linearb]

The 75% reduction according to the poster is temporary. But that is the case with taking meds for high blood pressure, diabetes, prostate, headaches etc. etc. As long as the side effects are not too bad, it is not a bad solution to screaming T at all.

Unless taking the drug long-term causes the condition to get worse... which isn't a crazy idea, given how tolerance builds to existing seizure drugs.

I really hope these drugs end up being a silver bullet, but putting all our eggs in that basket based on speculation and a handful of very short-term use anecdotes, seems unwise to me... if the drug works at all, then we'll have some longitudinal data, in five to ten years.

 

[soundmachine]

All drugs have some sort of side effects but that doesn't mean all users have side effects. Each person will have to use wisdom and work this out with the doctor prescribing the meds. It all depends also on the cost and benefit side of thing. To some people, the suffering is too much w/o the help of meds. So taking meds give them their last resort (as in my case during the first 6 months or so of my T). If they can't function w/o meds, then why not?

The 75% reduction according to the poster is temporary. But that is the case with taking meds for high blood pressure, diabetes, prostate, headaches etc. etc. As long as the side effects are not too bad, it is not a bad solution to screaming T at all. If Autifony can come out to the market after satisfactory trials for effectiveness and safety, that will be some kind of positive news for the T community at large.

Sure hope so. But keep in mind that drugs lose their effect over time as the body's tissue and liver adjust with enzymes and receptors. So let's hope it can be given intermittently so the body can't reach tolerance. If not..well...back to square one.

 

[tinnitussufferer]

@tinnitussufferer

I can imagine it's the hell on earth... Do you have it this bad since 2004??
How can you manage?
I have T since 1 year plus 1 month (May 3th 2014).
The panic attacks are gone, but I am sooooo tired of that sounds in my head..............................................................
and so sad, because I always loved silence.

How do you cope?

Wish you the best,
Gabriëlle

i dont want to think about 2004, its depressing to know ive had it this long. But no, it recently seems to have got even worse.

 

[soundmachine]

i dont want to think about 2004, its depressing to know ive had it this long. But no, it recently seems to have got even worse.

Yeah...I almost cracked about two weeks ago when it spiked and I thought I damaged my hair cells yet again. I thought it was going to stay at that level. Plus my hearing went way down. So not only could I not understand people but I had bad T. I almost lost it again. I started my LLLT and started to stay away from sound. Eventually, it went down to where it was before. Yours can come down again. Keep it together. It can go down.

 

[Danny Boy]

I have what would be described as screaming torturous tinnitus. Its not funny at all. At night, it is one of the many things which makes sleep difficult and in the day I have to constantly be trying to distract my mind.

It is hell on earth

Well, I've been taking trobalt+keppra and my tinnitus is down from a 10/10 to a 1 out of 10. I also cured my hyperacusis and reactive tinnitus in the process.

 

[MattK]

Well, I've been taking trobalt+keppra and my tinnitus is down from a 10/10 to a 1 out of 10. I also cured my hyperacusis and reactive tinnitus in the process.

Well I wouldn't say it cured it if you still have to take keppra. It more has it under control. But to say it cured it is about like saying tinnitus is cured while its masked. Besides, you might be fine now but how do you know you aren't causing long term damage? That's something I wouldn't take lightly.

 

[Danny Boy]

Well I wouldn't say it cured it if you still have to take keppra. It more has it under control. But to say it cured it is about like saying tinnitus is cured while its masked. Besides, you might be fine now but how do you know you aren't causing long term damage? That's something I wouldn't take lightly.

Well, it has treated my hyperacusis then. Either way, there isn't many things which can help treat hyperacusis.

 

[MattK]

yes but I dont want MORE noise on top of noise that I already have. I want to be able to switch off this noise and have silence.

Your tinnitus can be masked, yet you've said before that habituation only works for mild tinnitus or am I mistaking you for someone else? I bring this up because my tinnitus is extremely hard to mask due to its frequency and the way it constantly wavers. Basically it is nearly impossible for me to mask. But yet, I'm habituated. Seems like you should reconsider habituation protocols.