Things Tinnitus & Hyperacusis Sufferers Can Look Forward to While Waiting for a “Treatment”

Well said. Suffering is suffering. Everyone has a tolerance level be it emotional, physical or otherwise. It’s as unique as our fingerprints.

On another note @Ferret I am truly happy to read you are forging ahead with your life.

 

I agree so much with this it hurts. Tinnitus is easily the worst possible thing I could have. I would rather have MS or cancer or Parkinson. SO MUCH MORE than this!

 

Yep, I was reading an article talking about TTTS and acoustic shock disorder (ASD) and there was one ENT they spoke to who basically said that he believes TTTS and ASD don't exist. From this article https://www.themonthly.com.au/issue/2018/may/1525096800/kate-cole-adams/when-sound-becomes-pain

"Hooper is convinced that many of the people who are sent to him by such bodies are misguided, exaggerating or lying. “Some straight malingering, there’s no question about that.” He says it is easy to test for whether people have genuine hearing loss. "

Attitudes like tbis genuinely infuriate me. Lmao who on earth would actually enjoy pretending to have this messed-up condition.

 

Show me one objective test that measures hearing loss: one that does not leave room for any human error.

Statements like these make me so mad. I don't wish for anyone to suffer from this condition, but having to deal with it for a year or so might make him rethink about his judgements.

 

About the only difference between someone with tinnitus and hyperacusis nowadays and someone with tinnitus and hyperacusis back in the medieval dark ages is that one gets the blood letting, while the other gets told to pretend it is a kitchen appliance.

The charlatan factor is about the same.

 

It really is. For example an active sportsman, would probably consider being bound to a wheelchair the rest of his/her life as one of the worst things (I'm talking without phantom limb pain, just being in a chair). For me, if it weren't because it's unhealthy, I probably would be sitting down most of the day. I don't enjoy being active with my body. I like sitting. Different people, different agendas/likes = different opinion on what is the worst to suffer from.

 

Hmm maybe not MS because then you can still have hyperacusis, tinnitus and be blind or have an array of other crazy symptoms. Some may be managed but if you get stuck with tinnitus & hyperacusis you’re kinda screwed if you have to take pain killers (ototoxic) for other pains.

Same with cancer as you can get tinnitus/hyperacusis from chemo + all the bills and everything on top of it.

The only thing that I can see that would be good is people being more sympathetic but idk if sympathy would be worth it in these cases.

 

This is why I can’t wait for the day they actually figure out what the mechanisms are and that we’re not imagining it. I hope all those doctors are alive then. It’s one thing to tell someone that no treatments are available because the condition is understood vs saying it’s “imagined”.

 

At least in the medieval dark ages life expectancy was like 30 years old so you wouldn’t have to suffer for long.

I feel like 50+ years down the line using “therapy” for tinnitus and various other diseases will be looked at by society in the same way we view lobotomies (this is assuming we actually find a cure in the next 50 years).

 

The sportsman analogy is perfect. Your sense of joy and purpose is gone. No one can say for another person what their sense of joy and purpose is but the individual. I hurt for the things that I cannot do right now and pray I can do again. I was an outdoors person kayaking, fishing, golfing, digging in my yard just simply being outside. And I too loved to just sit and relax after doing these activities. Key word relax. Now I cannot stand to even watch these things on tv. I pray that we all can get back to doing what we enjoy. Yes, sounds are all around us but this mess we are hearing is not natural or pleasant. We need a miracle. Be well.

 

@Orions Pain
Thank you. I’ve followed your threads so I know what you are going through as well. This condition is awful at any age. The hurt we feel is indescribable to anyone who is not going through it. I have no one I’d call my enemy. But if I did I won’t wish this on them. Never. Here is a virtual HUG back to YOU. Notwithstanding a cure, trying to coexist with our condition is it for now. What’s disconcerting is that for me 15 to 20 years to wait for a cure becomes irrelevant given my age. But for you there is hope, a chance you can live the rest of your life free from this condition. I pray that day comes for us both.

 

@TheDanishGirl,

Thank you for the Hug. I’ve read your threads as well so my heart definitely goes out to you. My tinnitus started several days after yours. I freaked out as well. I had similar reaction and thoughts, which seems to be par for the course. For months I'd look in the mirror and say I look the same but I feel like a mess and touch my ears with sadness. Now, I look in the mirror and say it’s me and I am going to have to learn to coexist with this ring. We have to pull from every physical and spiritual fiber we have to keep moving forward no matter how slow it feels. Please accept my virtual HUG back to you. Be Well!!!

 

Thanks buddy and you are welcome.

Mine started in May 2017, so nearly 3 years now. Tinnitus has stayed about the same while hyperacusis has gotten worse. It has been a life changer no doubt, but I try to make the best of it.

 

I am sorry to read about the state of your conditions. I truly pray they both get better for you. Yes, this is a life changer. Everyday is a struggle to keep a float. Did you try to treat either condition? Your description of just sitting in total silence and just letting your thoughts flow resonated with me. Oh, I use to love doing that. I cherish the thought. One day we will have those moments back. Please continue to try your best. You will succeed!!!!

 

I still applied. I have no other option. I don't think it's any way to live though.

 

I’m struggling to find the will to do anything anymore. It’s like nothing matters anymore. Nothing brings me happiness.

If someone told me I won an all expense paid trip to Europe for a month my first thought would be panic and how much the noises would aggregate my hyperacusis & tinnitus.

Is this any way to live for someone who’s 26 years old?

Only holding on for my parents. If those treatments are a dud I’m probably out.

 

I truly think we will have a few real treatments within 5 years.

 

This is one of the many fallouts from this condition.

It destroys every little piece of joy you once had and replaces it with brutal unrelenting torture instead.
It destroys your social life and relationships.
It destroys you mentally, physically and financially.

This is why tinnitus is the most evil POS condition in existence.

 

@Orions Pain, are you in South Florida?

I came across this, and thought of you.

https://hyperacusisresearch.org/hyperacusis-device/

 

I live in California I’m not sure if they’d even consider me being about 4 months in.

 

For hyperacusis? I feel like they know even less about this than tinnitus.

 

Yes the hearing regeneration drugs should help with H too.