Today Might Be the Hardest Time to Be a Tinnitus Sufferer

Prior to 2017, sufferers potentially had Retigabine (Trobalt) as an option. Prior to that, although there were several clinical options that flopped, it didn’t seem like there was all that much hope for an available cure. NOW that we have FX-322 and Dr. Susan Shore’s device to look out for, I am mostly praying away this condition and holding out hope for a cure, which I understand are two obstacles to overcome in the “habituation process.”

I miss sleeping without pills. I miss hearing myself think and allowing my imagination to wander. I’m not my funny, imaginative, magnanimous self with this disease. I can’t make strides towards my profession as a strength coach because it’s setting is of obvious acoustic menace. My username—mrbrightside— is one from a past life, when I was free of such mental tyranny. I hate being negative like this, but my personality and identity are absolutely shredded.

It’s been officially 6 months. While my tinnitus is lowest in the morning, it still picks up predictably throughout the day which necessitates the sleeping pills. Although I sleep for like 10 hours, the sleep quality—as I’m sure many sufferers and sleep architecture alterations of tinnitus sufferers would attest to, is poor and not “restorative”.

God help us.

 

But it’s not a disease.

iT’s A sYmPtOM.

 

I use a device to track my sleep which has helped me greatly - https://www.amazon.com/Withings-Nokia-Sleep-Temperature-Compatible/dp/B078Z1B34S. A similar device may hold some utility for you as well. At least I stress less about it and fall asleep quicker and have increased my REM and deep sleep time. Small steps.

 

Thanks man.

 

Dreem 2 is the gold standard - https://dreem.com/en - but is 5x the cost of mine. Will purchase the Dreem 2 after I start my new job in the spring. These devices helped me become more aware of sleep which led to understanding and less stress. Also, keep a sleep journal as well. Helps to pinpoint things that may be affecting your sleep which may be less accessible at this point in time which you can validate with the help of something like this.

 

I’m finding that as I go deeper and I get a greater sense of what is healing and what is not it’s getting harder. My left ear still feels irregular 3 months in, and all I can do is hope that it’s an inner ear thing and not a middle ear thing. Ironically the most complex system seems the closest to being fixed.

 

Trobalt had some serious safety concerns. It even turned some people blue. Don't think I would be considering that a loss.

You had better hope it is a middle ear issue due to sensitivities (TTTS) which is what it really seems it could be. You don't want to be hoping it is inner ear at all. By the way, 3 months is nothing.

 

Seemed to be fairly well-tolerated by members here. Looked like the biggest insult it was capable of was of cognitive origin, which appeared to be temporary.

 

It gave a few users here horrible visual snow, some permanently.

 

It caused several people on this board permanent visual snow.

 

There is never a good time to get tinnitus, but I think at least now it seems like people are slowly starting to wake up and realize, that they deserve so much better than the:
"Just pretend tinnitus is your friend or a kitchen appliance", type of intelligence insulting crap.

 

I thought that was only reported by Danny, who was on a huge dose and combined it with Keppra.

 

No. Go through the thread. PatrickG and a few others got visual symptoms, too.

 

Here is a quote toward the end of the thread discussing Trobalt:

 

Yeah I’d rather not considering it’s not an available option anymore so I’ll take you at your word.

 

I’m just going to mask 24/7 and hope that my brain forgets the signal or it/the ear “heals” over time. I’m done white-knuckling my way through this shit 6 months in.

 

Have you tried TinnitusPlay? If you have an iPhone, I have heard good things.

 

I haven’t, maybe I’ll give it a look. The app I’ve been using is free, called “ReSound Relief.”

Violet noise at a low volume masks my high-pitched tinnitus, which previously had been unmaskable, so I guess that’s a win. The most annoying part is that it’s not the volume of the tinnitus that is so problematic, it’s just the pitch. I have a similarly volumed lower pitch tinnitus that doesn’t react to anything—with its comparison I can draw the differences between “mild/habituation-enabled” tinnitus, and moderate-to-severe tinnitus.

 

@mrbrightside614
I believe you are as your call name implies. Ive had tinnitus and hyperacusis for 8 months. I also don’t like to talk negatively but this life change will make one spew negativity. My tinnitus is lowest in the morning and picks up as well. It is so disruptive. I cannot just sit and ruminate on pleasant things in life anymore. My life and that of my wife and kids has been turned upside down. I feel broken. I am frozen in my home and only go out to walk or doctors appointments. I worked 34 years; retired and bam tinnitus and hyperacusis. Up to this point never spent a day in the hospital. Was very fit for 59. In terms of personality I was a comedian in my earlier life, so that should be a hint to my personality, at one time. Never been depressed or suffered from anxiety. Now, I feel like a shell of myself. I cannot tell you what to do in terms of meds everyone has to make their own call. But I can tell you this I took a med and now I am on the forum. I was warned and I knew better. I took a chance and got seriously burnt. In terms of sleep, sometimes I do not sleep for 3 days. When I do it’s from sheer exhaustion. You are right sleep on meds it not restorative. I pray you and I and all of us get relief from this insidious thing called tinnitus. For you personally I truly pray you get your brightside back sooner than later. Right now I’d take any former side I once had. God Bless. Peace.

 

I live in Europe, will we ever get FX-322 or other treatments? It seems this part of the world doesn’t get any help. Minnesota device, Susan Shore device, Lenire (Ireland and UK is an island of itself with no borders to Europe), all these are an ocean flight away from me. It’s 2020 already, @kelpiemsp got his thalamus treatment in late 2018, how can it still take that long to release the device, this is extremely brutal. No cancer, autoimmune diseases or other life threatening infections are as ridiculous as this disease. The Minnesota device even reduced visual snow, which I’m also suffering from. I’d pay $10k for getting rid of both tinnitus and visual snow. What the actual fuck.

If that revolutionary Minnesota device already helped a bunch of people, what are they still waiting for? The brutality of the medical world is absolutely unbelievable.

 

What a load of crap that comment is
and devised to denigrate this shit !!!

If it causes DIS-EASE

it’s a DIS-FUCKING-EASE !!!!!

 

I agree with you Jazzer.

mrbrightside: I know it’s really difficult and a struggle. I completely understand when you said before tinnitus you had a different life. I became a shell of a person, and I still am. I don’t think I will be the person I used to be. It’s not easy but we can. I also feel like (I know how terrible this sounds) that this happens to us so that we don’t have to be alone in going through this torturous noise, that someone will be there.

 

Such sweet words. I pray for you, and all of us. Thank you.

 

They were just mocking normies/the medical community.

 

Completely with you dude. I can’t believe we can continued to be tortured day-in/day-out, and have no idea what is on the horizon.

I haven’t heard anything about the Minnesota device. Are they in clinical trials?

 

It is rumored that Minnesota device will be Lenire 2 (what was the fucking point of releasing Lenire 1 then? Lenire 1 seems to be working 50/50 of cases, couldn’t help @Allan1967 so he commited suicide, BRUTAL).

Lenire 2 will be released around the end of 2020s. Till then, I feel like I’ll be dead.

 

Shore and FX-322 are definitely two upcoming resources of serious consideration for relief. I can hardly wait til the end of the year to see their data.

Is Minnesota not even in pre-clinicals? Why do you think they’ll be superior if there’s no data released?

 

If I’m correct, Minnesota device is in phase 2, which could take years to finish. Minnesota device is the best treatment for both visual snow and tinnitus since it targets the thalamus. Shore device only targets somatic tinnitus and probably doesn’t work for visual snow. FX-322 works for hearing loss and I’m not sure it can help regulate the misfiring neurons. I believe FX-322 should reverse hair cell death and that should make the brain stop the misfiring that creates tinnitus, but what if it doesn’t? This to me seems the least likely of a cure for people with tinnitus and of course it doesn’t target visual snow.

 

Phase 2 for a medical device should be the last phase—they’re not subjected to as rigorous an approval process as pharmaceuticals. Have hope, friend!

 

Still, it will be sold under Lenire 2, which will be released years from now and that is just sad.