I've Given Up on Life

[Sen]

I've had hyperacusis since late 2012. Over time I've developed ear pain, regular headaches, and vertigo. I also feel a tugging sensation on my right temple and cheek nearly 24/7, and for the past year I've had a chronic twitch/spasm on my right eyelid.

In addition to these things, I've been taking benzodiazepines habitually (ativan 1.5mg each day) and feel severe withdrawal when I attempt to even lower it by 0.25mg.

I hate my life. Doctors are not helpful, I've been to too many and I don't have the energy to bother anymore. I'm 27 years old and I have no idea how I'm supposed to live the rest of my life like this. I live at home with my parents, I don't work, I collect disability welfare that is barely enough to survive on, I am in agony much of the time.

How do people with severe health problems not kill themselves? I don't get it. How do people live like this for their entire lives? What am I supposed to do?

 

[Beste]

I do not know how people can continiue their lives with chronic and severe health conditions but I believe the unseens healt contiditons are the most delibilating ones. Yeah, I know some of you can think I'm crazy but I'm not. One can lose their eyes and other people see this and treat this person more special and they can understand the pain. One can lose their legs or arms and other people can show respect. But hyperacusis, tinnitud or psychological health problems are different. Nobody can see our suffering they think we pay so much attention to our conditions. I had been dealing with GAD for 6 years before tinnitus and I know the pain. As long as people cannot see out pain, they do not want to show us respect.

 

[Tommi_boi]

Have you thought about a hobby to keep you busy ?

If you for example started leaning something like web design , art or make music you'll find that keeping a hobby will definitely help pass the time.

This is a trick I used to do when I suffered from horrible Tinnitus spikes!

Also, I know you probably heard this a million times and even with all your conditions , life wil get better man. 2012 was only four years away - give it a few more years and then decide of life is worth chucking away.

Also, get a PlayStation - that keeps me busy when I'm stressed

 

[Sen]

I have hobbies that I struggle to meaningfully enjoy because of suffering.

life wil get better man

People have been telling me this for 10+ years now. Still waiting for it to happen.

 

[i.m]

Matt, I know that comparing your situation with another T sufferer can't help you, but here on TT there is @billie48 who has a very high pitch T and, despite this, he can enjoy life ( you know his story, do you? ).

Have you tried with the CBT / Mindfulness ? Unfortunately the big problem with T is under the psychological part of us, and lots of negative thinking stop our path to habituation.

Plus remember this: outside this kind of forums there are people with very high T with no emotional reaction. I think that reading this forums, where people are exhausted about this condition, are not a good for you ( and other ), and this leads to thoughts like:

I hate my life

I have no idea how I'm supposed to live the rest of my life like this

How do people with severe health problems not kill themselves

And so on.

You want some support, and you are damn right! I can suggest you to do everything that is possible to you for a psychological relief, like cbt, mindfullness, etc. If you want to talk to me via pm, I am on too

 

[Ring Ding]

I feel your pain man. I am a bit older but i just damaged the living hell out of my ears and my hearing and I have no idea if I will ever be normal or anywhere close to it again. I have some sort of hyperacusis , along with ear pain and fullness. My ears have become closed off and everything sounds like garbage. The wors part is my tinnitus that i was totally habituated to for 30 plus years has turned into something I never expected. it's so loud it is piercing and it's currently louder than anything else I hear no matter what. I want to give up but i have three wonderful little boys to take care of. They love me so much I need to carry on for them. it's so hard for me to even look at them and be happy. They know I am having a problem but they don't understand how bad it is. My wife is so stressed out about it I can't even mention it to her anymore. Any yeas so far every doctor i have seen has been a bozo. Just yesterday I saw a neurotologist and he claimed that he had tinnitus and hyperacussis since college and basically told me I am screwed like he is. Nice huh ? Anyway good luck and I hope you find the strength to move forward somehow.

 

[japongus]

Well I've had H or myo or whatever since 2000 when I was 18 yrs old... 16 yrs later if I get a job it's just a waste of time, would involve a lot of terrible quality life with lots of unwanted noise, and the pay would be terrible. My parents pay me a quiet place in the countryside and you can imagine that won't last forever. As for life, I make do and when not researching have online videogame servers I frequent where no one knows my health issues and I have lots of fun. I've switched from hobbies that involved sound to ones that don't. Or at least given how reactive my ear is, how it thumps with every new sound and not really with continuous sound, I've switched from discontinuous and unharmonic sounds to listening to certain kinds of continuous music when I play online. I also read and fap and enjoy internet subreddits, weird things, youtube videos and so on, as I don't take my current health which you might see as poorly but I don't as it could be much worse and because there is pleasure in a virtually deaf life in some circumstances, for granted. I'm also aware that I could be worse off, that I could be at a point where I can't use a fan to sleep or concentrate when I'm reading. I've seen how terrible life is, so right now I actually do really like my life if it weren't for the thousands of hours I dedicate to looking for a cure.

 

[Tommi_boi]

I have hobbies that I struggle to meaningfully enjoy because of suffering.



People have been telling me this for 10+ years now. Still waiting for it to happen.

You must have something u enjoy doing, I totally get its a tough hurdle but u started in the right place, by coming here.

You've got hundreds of other people going through the same crap..

my own struggles are in hyperacusis but I do not let it control my life. I avoid roads because car breaks cause distorted hearing, but I do web design as a hobby and I do not let it run my life that means H has won. Screw that!

 

[yonkapin]

Sup matt

Haven't seen you post anything lately here or on the rb and was wondering what you were up to. Sucks that your hyperacusis is still fucked.

Have you been off the benzodiazepines for any extended period of time during the time you've been dealing with these issues? I'm talking for like 6 months to a year off at least. The eye lid twitch definitely sounds like something to do with GABAergic drug dependency, I've blasted zolpidem for years and I know it fucked with me a lot.

Anyway sucks to hear you're still in a bad spot, stay strong bro. You given any of the harder medications like Retigabine yet?

 

[stacey]

I'm in the exact same situation it's tough as if T alone isn't enough but stupid H decides to join the party.

 

[Telis]

H is a god damn nightmare, getting up to take a 16 hour beating everyday is hell on earth. Some people say it can get better, guess we hold out hope that way. I've had it for three years along with stabbing constant ear pain, hearing loss, dizziness and constant headaches, I feel your pain.

People say to keep busy. Haha. The main problem with the shit is not being able to concentrate through the noise and pain, if you could just get on with life then yeah, be great, no worries at all. It can be debilitating to the point that you can't think straight ever. People do not understand that it can get bad enough where it cripples you, even if you are the toughest guy around. I have a massive migraine headache almost all the time that is obviously coming from the ear pain, this is nothing at all to deal with compared to the ear shit. I've never been crippled with agony from anything, but my ears kill me, beat me until I can't take it daily.

 

[GregCA]

People say to keep busy. Haha. The main problem with the shit is not being able to concentrate through the noise and pain, if you could just get on with life then yeah, be great, no worries at all. It can be debilitating to the point that you can't think straight ever. People do not understand that it can get bad enough where it cripples you, even if you are the toughest guy around. I have a massive migraine headache almost all the time that is obviously coming from the ear pain, this is nothing at all to deal with compared to the ear shit. I've never been crippled with agony from anything, but my ears kill me, beat me until I can't take it daily.

That's one thing I find sad about this condition. Statistically speaking, it looks like "only" 10% of T sufferers have it so bad they can't function daily.
That leaves 90% of T sufferers that seem to be "ok". When I talk to people about my condition, they are quick to mention so-and-so who has it and manages it really well ("just keep busy" as you said), or that they just use a fan at night, or "just don't think about it", etc. But they don't realize that the person in front of them could be in the 10% that struggles every day, from the moment they wake up to the moment they go to sleep, no matter which activity they try to engage in, unable to focus on any task requiring basic cognitive skill. I suspect they don't even know that such severity exists for this condition.

It's unfortunate, but until the world at large understands the hell it is for this 10% (which is still millions of people in the US alone!) I suspect resources won't be pooled to fight back against this debilitating condition.

It's the lives of these 10% that needs to be exposed (no offense to the 90% left - they will benefit from any treatments too).

 

[The Red Viper]

How do people with severe health problems not kill themselves? I don't get it. How do people live like this for their entire lives? What am I supposed to do?

I think it depends on the condition honestly. T is sinister because it affects quality of life without threatening life or at the very least debilitating it (physically I mean). I don't mean to knock other conditions, but from a subjective point of view, they aren't "in your head" in the way that T is. There are only a few other conditions that affect the "mind" so to speak; for example Meneire's disease.

 

[RaZaH]

I agree , the head is where you experience the "self" rather than in your foot for example.
Completely maddening at times.

 

[MichaelM]

Hello @Sen
have you read about Meniere´s disease?

 

[Sen]

i don't have meniere's disease because my vertigo is not my primary symptom, nor is it severe. it's bad enough that i feel sick all the time, but i don't have much trouble keeping my balance.

 

[Sarah Russett]

have you actually heard that from a doctor? That doesn't sound rright tome. "Primary symptom" doesn't mean much.

 

[Sen]

i've described all of my symptoms to multiple doctors and have never received a diagnosis.

 

[joseph Ghass]

i've described all of my symptoms to multiple doctors and have never received a diagnosis.

Your last option is to go into a ketogenic diet

 

[Richard zurowski]

@Sen . The whole thing with tinnitus sucks. But what can we do, there's no medication we can take to even lower the volume. What do we do give up? The main problem with tinnitus is the depression. It's a whole lot worse I find if your depressed. When my mood is good I can better handle my tinnitus but when I'm low it's hell. At the moment I'm having Bowen therapy. I find it brings my stress down and helps my depression.Heck I'm trying anything I can to help myself. Until scientists find something to help are condition. I'm afraid we are stuck with it if this helps there is a guy on you tube called Julian Cowan hill . He knows a lot about tinnitus and ways to better handle the condition if that helps.

 

[April]

Wow, I hate to say that misery loves company but everyone who has posted here is echoing what I've been going through since 2008 when my HL, T, and H started after a whiplash incident. . .at least I think that is what caused it but not sure. It has been a long journey in learning how to increase my enjoyment of life. At the beginning there wasn't any and now my condition has not improved but my attitude has. I became an almost complete recluse the first couple of years. All I could think about was a cure and tried several medications (didn't work) went to Stanford Medical Center and UCLA seeking help . . .also no help although they were sincere in their attempts to alleviate and help my condition. Finally I realized that I had better just get on with my life as best I could. I knew my limitations with noise so never put myself in situations that were mentally crippling to me. I joined a community based pottery coop and started making pottery again. It was a challenge to be around noisy pottery wheels and still is, but was great to interact with people again even though it was very limited. Everyone there eventually realized that if they were going to talk to me they had to stand directly in front of me so I could read their lips. They also learned not to shout. Very embarrassing at first but people were willing to work with me. Three hours is about my limit there and sometimes I go there in the evening when there will only be a couple of people around and the noise level is tolerable. I refuse to give up some of my favorite things like walking on the beach (waves crashing are excruciating) so I wear ear plugs, and the same goes for other activities.

The point of my saying all this is don't make decisions on your bad days as everything will look dark and seem hopeless. Know that what is bothering you now may actually get better or you will be able to tolerate it better, as it was in my case. In any event, each and everyone on this thread is trying to find solutions to their own conditions. We're here to help each other and I thank you all for helping me realize that I am not alone.

 

[Ears Hurt]

@April I believe mine was the result of whiplash too. It created problems in my jaw (TMJ), but it could also be from noise damage but that was a year prior to signs showing up. I was told it is unlikely from the noise and it seems to correlate to the accident, but its all just a guess. What have you done in terms of attempts at treatment? I'd be interested in what your approach was considering we both may have got from whiplash.

 

[April]

Ears Hurt,

I have tried Tegretol (anti seizure), Amitriptyline which is a anti depressant but the ear docs at UCLA found out that it was a amazing cross-over drug in treating tinnitus, meaning it was developed for one thing but found that a side effect of treating for depression was eliminating or diminishing the tinnitus in those patients, and a couple of other drugs but they didn't have any effect on my condition. I haven't done anything for the past few years.

Next month I'm going to an osteopath to see if there may be entrapment of swelling of the nerves and muscles in my neck that could affect my ears. The back of my head and neck gets so sore at times it brings tears to my eyes. Other than that, I've just been honing my coping skills.

How about you? What have you tried?

 

[Sen]

i feel like i have problems with my TMJ too. i ate 3 lbs of very tough beef jerky over the course of a week before my issues began 4 years ago, and the right side of my jaw scrapes against itself when i open and close my mouth. the right side of my face is also the side that constantly feels burning/numbness/tension, and my right eyelid is the one that spasms.

both ears have hyperacusis and tinnitus though.

 

[April]

I'm right there with you Matt. Right side of my face feels numb and right eye tears and twitches at times. I force myself to interact with people even though I'm much more comfortable being alone but that's no way to live. It has been a challenge with hearing loss in both ears and hyperacusis and the ongoing tinnitus. I think we've all got a full plate of issues to deal with and I hope you can find some activities that get you with people and give you some enjoyment.

 

[Sen]

i never see anyone. i spend almost 100% of my time alone. i had issues with anxiety even before my health issues, but the anxiety they cause make it impossible to meaningfully interact with people.

 

[The Red Viper]

@Sen, check this out: https://gimletmedia.com/episode/42-blindspot/

Hope that can help.

 

[Sen]

no that just made me more frightened and unsure. interesting story though.

 

[April]

@Sen, If you had anxiety before your ear problems it's going to be a tough go, but you might surprise yourself. When I finally decided I had to get out instead of being a recluse in my home, I would go shopping for groceries. There was no personal interaction and I only went to grocery stores that had the amount readout where I could see it because I couldn't understand the check-out person's speech. It doesn't sound like much but I forced myself out of my comfort zone and was around people but didn't have to interact with them. I kept pushing myself to get out of my comfort zone at home and little by little (I'm talking baby steps here) I was able to talk to people again without the overwhelming anxiety. Sometimes I could understand them and sometimes I couldn't. When I couldn't it filled me with a desire to just go back and give up but I wouldn't allow myself to do that. I'd go out again and again with some wins and some failures but I'm now out in the world much more, not like before this all struck, but its good. I spend lots of time by myself too in the sanctuary of my home to get the quiet I need to recharge but I'm not stuck here anymore.

Hoping you can eventually take a baby step too. I'm rooting for you.

 

[Sen]

@April do you experience headaches or a feeling of extreme pressure inside your head? how about nausea or vertigo?

i have trouble making plans to go out because i am nearly always too sick to go out. it's not just that i have tinnitus or hyperacusis, i have other symptoms as well that make it extremely difficult to even go for a walk down the road.