Suicidal

Has anyone had a positive experience with Prednisone for an extreme spike? I got an ENT to prescribe a 10-day course for me. I’m on day 4 and was wondering if it could worsen my tinnitus. This is complete torture.

 

I've had mixed results with prednisone, with the current result positive. I think going on prednisone after your injury is very smart. Even if it doesn't help much, it's an extremely safe drug for the ears (basically the go-to drug for safety purposes).

Unfortunately, there is the real possibility that it temporarily makes your tinnitus worse as a drug side effect (increase fluid retention = higher blood pressure, anxiety, insomnia, etc.). In my opinion, it is well worth the try.

 

Thanks. I was thinking the same. I’m just terrified of any possible worsening. I will continue and complete the course. Glad to hear you have experienced some positive results from it. I hope you continue to have success.

 

It also spiked the volume for me when I was on it quite a bit, but then it went down after I finished and was off for a few days.

 

What patients? Why do people constantly make assertions without any context at all?

Nature of their tinnitus or tinnitus problem? ENTs? Yeah, they're reliable.

P.S. I hope it's a miracle/genuine good news. I am purposefully cynical so expectations are low. It's easier to be surprised and not get disappointed. :-/

 

As long as it is temporary... How long were you on it? Any improvement at all?

 

I had neither positive nor negative effects from taking prednisone for 10 days... remember the dosage you are taking is very important. Some of these ENTs want to start you in a 40mg taper... which is basically worthless IMO.

On another note... got a new-to-me car with Infotainment/Apple Car Play and it is shameful there is NO volume leveler with this technology. I can’t worry about these loud “gotcha’s” so I think I’m going old school. Just went from low volume talk radio to dial the phone and blew my ear out with one tone... guzzling NAC right now. Oh... yeah thanks MRI tech...

How have those of you that have been duped, screwed, hosed, etc. by medical “professionals” dealt with your anger toward them?

 

I took it for 10 days but my doctor only gave me 30mg peak dose, which I later learned is about half the recommended, so it didn't do much for me. Still glad I tried though.

 

Patients that tried FX-322 in the trial. Carl LeBel didn’t really give much more context than that.

Good point about ENTs tho, fuck em.

And that’s understandable. People take hope from different places. If I didn’t have all these things in the pipeline that seem like their going to work, I’d probably be a lot more likely to jump off a bridge.

 

I just had right ear pain for 6 days straight, and a permanent tinnitus increase after a car honk.

Yeah I think you have a point because even if FX-322 improves hearing by say 20 dB, there's no guarantee tinnitus will go away. There is a member here who says her hearing spontaneously improved by 50% (shown on audiogram), but her tinnitus did not change, so there's that... Perhaps hearing has to be regenerated to 99% to jolt the brain into reversing neuroplasticity to normal.

The only hope is the Retigabine variant because it works directly shutting down the source of tinnitus regardless of hearing loss - that is the way a cure should be like and not like ok if we cure that, there's a good chance we'd cure that other thing secondarily. But Prof. Thanos Tzounopoulos is being honest, he doesn't know how the trials will turn out.

 

There are also plenty of other people on here who have said that as their hearing returned, so too did their tinnitus diminish in a fairly linear fashion.

 

I think it’s likely that the person who regained hearing recovered frequencies that their tinnitus is not in. They could have recovered a good portion of hearing that would show on a standard audiogram, but maybe their tinnitus is at a very high frequency.

Regardless, whether it’s FX-322 or a newly-formulated Retigabine, I welcome any possible solutions to this ugly mess.

 

Well that's good to know too. Hope for the best.

 

Any chance of getting Prof. Thanos Tzounopoulos on a podcast in the future?

 

This is recent:

Reviving Retigabine for Tinnitus — Thanos Tzounopoulos, PhD

 

This is exactly mine and it feels like I'm being tickled which is TERRIBLE.

 

He was already in the Tinnitus Talk Podcast, that's where he said he's not sure and if it doesn't cure tinnitus, it could be used for epilepsy, etc.

 

Why couldn't I get low tone tinnitus - every day I wince at this fucking screeching - it's like when someone scuffs the sole of their shoe on a linoleum floor, that one instant of high pitch noise when you recoil but turned into a weaponized, unceasing agony.

 

It's not about the tone, it's all about the loudness... you could get a loud ass low tone, which makes you feel like your head is exploding every living second...

 

How do you sleep at night? Can you be in quiet?

 

I'm honestly pretty scared because if it doesn't get better for me, I know I won't be able to stay alive.

My parents have basically asked me not to do anything rash, as I've told them I can't live like this - I know they love me, but in some ways it feels selfish, like keeping me around will keep them happy when I have to suffer so much every single day.

I know ending my life would be a selfish decision, but if I had a crystal ball and knew my situation wouldn't improve at all moving forward, I would 100% take action.

I know there are promising therapies and I'm "only" two months in, and it has improved for so many beyond this point in time, but every day I reach a point where I just want to be asleep to get a break, and that leads me to just wanting to cease existing. It isn't a mindset thing - I feel like I'm being held underwater and all I want to do is breathe - this thing is killing me.

 

Mine is loud - I hear it over everything. It is reactive and unmaskable. Yesterday I had a nervous breakdown because the wind in the trees sounded like a continuous squeak. This is not sustainable...

I'm at the point where nothing makes me happy - there are no good moments. I feel inanimate and inert. Death feels like a natural progression honestly.

I don't know how people get used to this - where is the inflection point? I can barely eat and the only way I can sleep is with drugs.

 

2 months is still waaaaay early in the game bro, it's not even considered chronic until 12 months.

Still, you should feel much better in 2-3 years providing nothing changes for the worse.

Folks do say that a cure for tinnitus comes within 10 years.

 

Trust me, you don't want that.

I have two high pitched, screeching sounds that cannot be masked and I can guarantee the low 250 Hz is the worst to me.

Many Tinnitus Talk members who also have low and permanent tones can confirm.

 

It should mellow out over the years, it happened to a lot of us here. So what happens is you harden to your original tinnitus and then when it softens you feel like oh this is a cake walk... It's slight improvement + habituation... that's the idea...

However the thing is a lot of times it gets worse yet again because of advancing hearing loss/noise exposures (i.e. kid screamed in my ear, etc.)

 

I take benzos and still wake up multiple times to the sound.

Couldn't make it through the day without them though.
Tough times.

But I found a video on YouTube, unrelated to tinnitus, that I'll post soon.
Shows how much people can basically overcome anything, even when it seems impossible.

 

I felt this way from 2011 (onset, psych ward) to 2015.

2015-2019 some minor improvements in tone quality, was living a half-assed life but enjoying it.

2020 Game Over (tinnitus worsened with additional loud tones added).

 

That's basically what we have to overcome - the impossible.

 

I firmly believe now is the time for us severely affected by tinnitus to do anything we can to find relief, no matter how many pills we must take, tears we must cry, because scientific help is definitely on the way, from multiple sources, now more than ever.

We will deal with the other consequences later, that's my point of view.

Let's fight, survive, do anything to feel slightly better, until real help is coming (and it is).

It's not time for us to end now.

 

I want to die in relative silence (I'm 40).