A Life with No Peace, No Hope, No Joy, and No Mercy.

#31
@ManApart Your T is still new, aren't you hopeful it'll go away or improve?

I know where you're coming from man, I share a lot in common with some of the stuff you've had to deal with, abusive doesn't begin to describe my upbringing...too depressed to mention it and the T is the worst most insanely spiritually, mentally, emotionally, and in the long run physically I feel... the way it happened, what it took away from me. feel like it took away the only positive thing I loved. don't know what to say.

The only reason I keep living is I hope somehow to have hearing restored, and all the t/h/hearing distortion shit go away. It's hard to even have this hope 1 year in... dunno what to say.



@stophiss don't you think you might be over reacting at Bobby here? have you guys argued in the past or something wtf?
 
#32
stophiss said:
I completely share your mindset fishbone. I too share your warrior mindset. People still climb Everest after losing fingers to frostbite. Intrepid spirit. Why? Because life is a wonderful mystery. Tinnitus other than those acutely struck with overwhelming noise in their heads is minor.

And for those that struggle, perhaps profoundly...dream of that day when help will arrive and I believe it will within the next handful of years.
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no you're straight up underestimating the impact these types of hearing issues can have on a persons life here, it is devastating. This stuff is not "minor". I'm glad that's your experience due to the nature of your T/h, and how it affects you but seriously... this stuff can really hurt you in so many ways.
 
#33
SilverSpiral said:
no you're straight up underestimating the impact these types of hearing issues can have on a persons life here, it is devastating. This stuff is not "minor". I'm glad that's your experience due to the nature of your T/h, and how it affects you but seriously... this stuff can really hurt you in so many ways.
Click to expand...
I do understand that best each of us can without acute tinnitus which no doubt is devastating. The only person who truly understands is the person with acute tinnitus. Those with moderate tinnitus and H...what I have....I agree, don't live in the hell of severe T and likely can never understand. We understand of course better than those without T or H I believe. But your point is taken. I believe you maybe ascribing words I didn't write. I don't think I wrote anything about 'minor'. If T and/or H was minor...which I believe it maybe for some with barely audible T, this forum likely wouldn't exist.
Be well.
 
#34
nothing about tinnitus and its suffering is minor. I was having a conversation with a worker, that was painting my house. He spoke, in such a low tone that i could not understand, what he was saying at all. The tinnitus is so so so loud and confusing that it has ruined for me, a great amount of communication. If people talk in a normal (somewhat in my hearing range) then i can talk to them.

Guys/gals this does suck, but what choices do we really have? I have no ounce of shame about my damaged ears and my beyond horrible hearing. I go to family functions and the kids speak and i mostly cannot understand, what they are saying.

This is not minor at all, but at the end of the day, i'm not gonna kill myself either because i cannot hear too well.

I think it was 1994 and my ex fiance and i was driving and for 2 minutes my tinnitus stopped and i had silence and i was like please god, let it be like this and don't let tinnitus come back.

it came back again and i was crushed and heart broken. As stated before, my tinnitus is super loud and in both ears and i can assure you that mine is among the loudest on this board. That's life, we do what we can and live it. I care more for my hearing loss, than tinnitus honestly.

I even bought a hearing aid, which is just a loud amplifier in my opinion. its an expensive hearing aid and I actually wore it and tried to have a conversation with my brother and the clarity on it was so so bad.

We all struggle, trust me. I do too, but that's ok..maybe im just supposed to be a modern charlie chaplin or mozart :)


Yes, tinnitus is not minor at all, but i still see life as a beautiful thing. We just have to do some things differently. than others...
 
#35
T is often related to hormones.. it seems that sugar level has sth to do with that to. Let alone anxiety, depression..You had many basis to develop it, but you can't stay at this point. See some docs, do the exams most of us here did in the beginning. Even if it doesn't dissapear, it can diminish to an acceptable level. Think positively ( I know, it's hard ) ,but you say '' there's no hope'' and saying this is never good and counterproductive, cause first of all, it's not true. You're only two months into this, you should try to stick to the more positive option like for now believe it can still go away, cause it does in many cases. You haven't tried literally anything yet to get a relief so start with that before you fall into a total despair. Read, search, little by little, but so much has been said , so many testimonies, solutions to find peace..try them all one by one and remember that how you feel may influence the loudness of T a lot. I know it freezes life.. it changes us and the world forever, but good things are still possible and most of all, we're all waiting for the treatment. I totally agree that life sucks in many ways, but you don't want to stop it, so take the best there's about it and in time many things get better.. I hope you can consult some doctors , a psychiatrists, joining a group of people with T ..all this helps us stand back on our feet , slowly..
 
#36
stophiss said:
I do understand that best each of us can without acute tinnitus which no doubt is devastating. The only person who truly understands is the person with acute tinnitus. Those with moderate tinnitus and H...what I have....I agree, don't live in the hell of severe T and likely can never understand. We understand of course better than those without T or H I believe. But your point is taken. I believe you maybe ascribing words I didn't write. I don't think I wrote anything about 'minor'. If T and/or H was minor...which I believe it maybe for some with barely audible T, this forum likely wouldn't exist.
Be well.
Click to expand...
stophiss said:
I completely share your mindset fishbone. I too share your warrior mindset. People still climb Everest after losing fingers to frostbite. Intrepid spirit. Why? Because life is a wonderful mystery. Tinnitus other than those acutely struck with overwhelming noise in their heads is minor.
Click to expand...
That's where I Saw the word minor. My main point is not just that severity of t/h/other symptoms can vary person to person, but regardless of the severity can effect different people differently. Some people have depressive tendencies etc. A musician on autism spectrum probably gonna be a bit more inhibited and suffer a bit more with their symptoms than a person who is a stock trader and mountain climber.
 
#37
SilverSpiral said:
That's where I Saw the word minor. My main point is not just that severity of t/h/other symptoms can vary person to person, but regardless of the severity can effect different people differently. Some people have depressive tendencies etc. A musician on autism spectrum probably gonna be a bit more inhibited and suffer a bit more with their symptoms than a person who is a stock trader and mountain climber.
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I wasn't speaking of special cases. Tinnitus...I know several with it including myself, is not life altering. The vast majority carry on just fine with tinnitus including me and mine is in the audible range much of the day.
There is a parallel universe however. Those with acute or severe tinnitus can be devastated. Without question. There is nothing minor about acute tinnitus. But for most with tinnitus, it is minor. That is the distinction.
 
#38
ManApart said:
Imagine your hand is on fire. Constantly. I just imagine someone saying to me, the flames can take your flesh, damage your nerves, and take away your ability to feel, but you still have your hand. What use is having a hand when you cant feel. What use is having a mind if you cant be at peace.
Click to expand...

I've never heard it put that way before but that IS EXACTLY how I feel. Thanks @ManApart

I can only find some peace in complete isolation from the world but as soon as I have to reenter the human interaction portion which requires critical thinking skills, I'm toast.

I've requested Nortriptyline to try to alleviate my T from my Doc today (thanks, @glynis). She has been wanting to put me on a long term antidepressant however; I just realized that she, as in all my previous doctors, think I'm depressed because of my years of complete lack of interest in social interaction but that's not because I'm depressed as much as that when a person is incapable of consistent critical thinking skills because of T, you appear to be depressed. I've been telling them all along that I'm not depressed.
 
#39
@SilverSpiral
Its been two months and from everything Ive researched, all the supplements, medications, and therapies ive tried and the information ive been given by the doctors, ent, audiologist, and others who have tinnitus, I think its permanent. Ive come to terms with that. I dont want to get my hopes up waiting for that day it goes away. Its here, its part of my life, I have to face it, deal with it, and learn to cope with it just like all of my other health problems that have no cures.

The older I get I realize part of life is losing things you cherish. People you love, friends, family. But also stuff like your hearing, your vision, your health, your hair, your sanity, faith, and hope. When I was young I felt invincible. Now I feel like broken down car.

I keep living because I do believe it will be possible for me to if not habituate, but to somewhat manage this where its not driving me insane. If it takes a year, ok, ill wait it out, grind it out another 10 months. See how I feel then. If it hasnt gotten better or its gotten worse, I will have to reassess and all options will be on the table.

I don't believe in hope. Hope is the most hollow word in the dictionary to me. But I believe in the people on this forum. I believe in their strength and ability to cope. And I believe them when they say theyve been there and it will get better.

I think tinnitus even at a moderate to low level is in now way minor. When it is as piercing and severe as it is now it is truly devastating to live with. I don't allow it to do anything. It hits every nerve in my body. I look at it for what it is, and I have to respect its power and its insidious nature. I have to face it, not overreact to it but also face the reality of how disabling it is. Just like @Gosia said, it literally freezes your life in place in the beginning and you have to journey a ways back to normality.
 
#40
@ManApart, you seem to be closer to realistic recovery from your tinnitus than me. I'm a year in, and I have a lot more than plain T going on, yet the only way I can keep going is some tiny desperate hope that somehow complete remission of symptoms is possible with some new discovery or hidden healing method.
 
#41
ManApart said:
The older I get I realize part of life is losing things you cherish. People you love, friends, family. But also stuff like your hearing, your vision, your health, your hair, your sanity, faith, and hope. When I was young I felt invincible. Now I feel like broken down car.
Click to expand...

Absolutely. When I was young I was the life and soul of every party, and also felt like I could take on the world. To be young again hey.

I also feel like a broken down car nowadays; it's a good analogy. But, what can we do? Sometimes we're forced to face challenges beyond our current capability. We must learn how to grow into our problems, and that takes time. Our situation could always be worse. Saying this however rarely helps, in fact, it usually pisses people off truth be told, but it still rings true.

I've got a friend and former student who has friedrichs ataxia, an absolutely evil condition that slowly paralyses you and kills you slowly. It's literally like torture. I posted about this girl on here just before Christmas because her heart started to give up on her and it really got to me. She was still happy and positive, and it absolutely blew me away. I highlighted her story on here as a testament to what the human spirit is truly capable of. With good support, friends and family around us, we can overcome anything.

Go easy on yourself and give yourself time. Try not to be critical of yourself either; if you're feeling depressed don't blame yourself. It's a powerful emotion that we have no control over, but we absolutely can be happy again.

Watch this video. I've put it on here before but I'm going to do it again because I think it's really uplifting:


 
#45
@Ed209
My ex called me a couple nights ago. It was extremely emotional. I dont know what to really say to someone who doesnt understand you. She wanted to know if the ringing went away or if im getting better and I said no. She told me I act like im dying. Acting? No, for once go google gastroparesis. I have a case worker trying to advocate for a gastric pacemaker because I dont have insurance, but for now my gastroenterologist is trying me on a trial prescription for some new stomach motility drug. She asked me if I wanted to die. I said right now this moment probably yes. She wanted to come and see me. I said no. I look like hell and havent shaved in a couple weeks. But also im just not feeling well and I dont want to face her right now. Someone whom I proposed to just months ago. I just feel im not allowed to have a normal or even simple life. And I don't accept the life and circumstances ive been given. Thats where I am right now. Tell someone you have gastroparesis and tinnitus and they think its a sinus cold. Tell someone your depressed or have anxiety attacks and they think its just the occasional blues. Tell someone you have cancer and oh my goodness, the compassion and understanding is overwhelming. No tinnitus is not going to kill me, but it is killing me.

What would someone do if one day you woke up in prison. You didnt do anything wrong. You dont deserve to be there but, hey thats life you gotta deal with it. Your in jail and you have to make the best of it. Sitting and thinking of all the things you will be missing out on. Places you will never see. People you will never meet. Freedom you no longer have. Experiences that will never exist. And a life secluded forever. And you did nothing wrong. How do you cope with that... how do you accept it. That how I feel. Im in a prison.

I am not a negative person, but there are certain things in life that rips away part of your soul that you cannot reclaim or replace. You dont just put on a fake smile and go on living. I will spend the rest of my life trying to grow into problems. Once you try to overcome one, then another one hits you. You never quit, but you know that your going to lose. That there is no cure coming. That its just a matter of time. And your only saving grace is how you live with a curse. You do have a choice in that. To not let it define you or completely destroy you. Or take your dignity. You suffer. And you continue to suffer in defiance. Not because there is any meaning to it, and I certainly can't justify it. But just because. There are millions of people worse off than me. They dont live near a clinic. Children starving to death. People getting sick and dying alone on dirt roads and desolate villages. Imagine how the people hundreds of years ago had to live and cope. The horrors of this world are not lost on me. But as I said before, we all experience hell differently. Never has it made me feel better when someone tells me, well it can always be worse, theres other people worse off. Nor should it.

Ive seen videos of people with gastroparesis living in hospitals, with feeding tubes down their nose and machines strapped to their bodies, barely 80 lbs. And somehow through all of that hell they take pictures and videos smiling and giving the thumbs up. Even the people in your video you posted. And of course the strong and positive people here who suffer from tinnitus. It is the most beautiful thing in life I have ever seen. More beautiful than even love maybe. Is the will, grace and underlying deep human spirit of these suffering and in some cases dying people, young and old.... to live. They value life. Its a passion for them. I stare with both admiration and envy. I value life. I think life is worth living and is precious. I just don't value my life. I don't think my life is precious. I don't think my life is worth living. I don't have a passion for living. I think thats the difference. They have so much to live for. Friends, family, people that love them. Support, faith, and religion. And, hope. A word I hate so much.... Hope. I have a low tolerance for suffering. And tinnitus is the worse thing that has ever happened to me. If its permanent, I will never be able to reclaim or replace the one thing I valued, peace and contentment.

I'm rambling now. Tinnitus rage. I want to be happy. Ive fought so long to be. But I feel more like im just sailing and not steering. That life is just a journey on autopilot. I have very little control of it or where it takes me. You never know when the winds will change and all of a sudden your life is steered in a whole other direction. I have severe depression and anxiety. I cant control how I want to feel today. I have physical pains ravaging my body. Living on pain pills. And I have this constant siren inside my head. Tinnitus hit me like a hurricane. Even moreso than gastroparesis. I had to sacrifice and realize a lot in the last 2 months. When your constantly in the eye of the storm, it doesnt matter what direction you want to go. Blown away from my job, from my girlfriend, from my dreams, and from peace. The steering wheel was already broken. I have very little control over my mind. Which means I have very little control over my life. I just try to hold on each day as the never ending storm tosses me about.



@SilverSpiral

Don't stop believing. You believe in hope and that you will be healed. You have that passion to get better. So keep going even its been a year for you now, be proud of that. That youve held on so long and your going to hold on even longer. The strength of the people on this forum helps me to believe a little more each day.
 
#46
@Sooner Arrow
Yeah ive been forcibly anti social myself. People know Im not well but they seem to forget you can certain problems that limit you mentally, socially and physically. Your concentration and ability to focus falls off a cliff. But still people will after awhile start asking me can I do this, this this and that for them. Would you go here, can you go there. Have you found another job yet. It wont kill ya to blah blah. Your not dying or anything so you seem to be ok right? I think the most asinine question someone had asked me in the last 2 months was "when are you going to get over this?"

Let me know how your doing on the Nortriptyline. As of now I have mostly been taking a ton of vitamins and herbal stuff and clonazepam, cutting sodium and caffeine, masking like crazy and taking sleep aids. I haven't been advised to take a anti depressant or nerve pain pill yet. Unless I have seen a lot of people having success with it I havent decided to go that route.
 
#47
@ManApart - How are you doing?

I know that absolutely no one but another tinnitus sufferer knows what you're going through. Everyone from my family to friends just think I'm fine because I can answer questions and have no outward physical trauma. The trauma is in our head somewhere, so the physiological doctors don't have a standard treatment for us and we get shipped off to psychological doctors who try to treat us like we're hearing voices instead of noises.
 
#48
@Sooner Arrow

Its been tough. I feel like its getting worse. Just day after day it wears me down. I haven't been able to really cope well. Can't get used to it. Sleep is hit or miss. I dont know what to do anymore. Is there even a such thing as treatment for tinnitus? I cant find relief. I cant escape it. Im doing the best I can but nothing seems to work. Its always there. It all feels like a nightmare right now. I just dont know how much more of this I can take.
 
#50
@fhs

Ive been diabetic for since i was 18, im 39 now. I wouldnt doubt being diabetic has something to do with it but ive had my blood sugar under control for the most part but the longer you have diabetes the worse the symptoms are. Like my kidneys losing functions, going blind in my right eye, neurotrophy is my feet and left leg. Damage to my vagus nerve that caused my gastroparesis. So if someone said I developed tinnitus cos of it, I wouldnt be surprised. My last blood test showed everything normal. I dont have any deficiencies anywhere. My kidney functions were imrpoved, and cholesterol was lowered. Ill research what metabolic disorder is. But I think its simple to say I just have damage to my ears from long term exposure to loud noises.
 
#51
Hi @ManApart,

First let me say you are a gifted writer and possess the ability to express your thoughts and feelings in a clear and effective way.

I have had tinnitus for exactly one year and what really helped me over the time is simply distancing myself from it. In other words, not to invest yourself emotionally into it. What that means also is not thinking back to the days before you had it either, because that will eat you up. My approach was "yeah, so I have it, and so what". This type of mentality helps promote habituation faster, which is really the optimal way of living with tinnitus. Once you are able to successfully convince your mind you can live with it, you will have a much easier time of it. Of course, this took a solid 4-6 months to crystallize inside my mind. However, it can and must be done to enable you to live a healthy, productive, and eventful life.

Best of luck!
 

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