Discussion in 'Support' started by allen_rod, Dec 3, 2014.
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Holy shit, I'm going to have this the rest of my life.
You hit the nail on the head, that was one of the most overwhelming things to deal with; just about sent me over the edge. I didn't think I could even take a fair swing at that issue.
However, I've had T since Feb 2013 and have found it is very livable -- I do whatever I want and don't really give my T a thought. It is no longer a source of stress/anxiety/depression. But it wasn't always that way, in fact it was a living hell for quite some time; habituation is a tall mountain to climb and oft times leaves you feeling weary and worthless -- but the view at the top is breath-taking and well worth it.
Yeah it's a nasty thought, and one i don't like to entertain very often, but you should always keep in mind; no matter how bad your day gets, there is ALWAYS someone doing it tougher.
@MattL You just got T and already you are talking like this. I got it 8 months now and doing better than in the beginning. Its like they say: you go up and you do down till finaly you reach that top and there is habutation. I am not yet on that top but hope to be there soon.
You only need to look at the Research and Treatments sections of this forum to see that there is more research being undertaken than ever before. Medical understanding of the causes of T is advancing rapidly. Maybe, it always seems as if the crucial breakthrough is just around the corner but I think there is far more basis for optimism now than there was 5 or 10 years ago. To me, it seems like the potassium channel modulator drugs represent our biggest hope. Many believe that AUT00063 will be the big breakthrough. Even if it AUT00063 does not completely live up to our expectations, it may still establish the principle that potassium channel gateway drugs are the key to alleviating T. Most of us have sat in ENT surgeries and heard doctors tell us that there is no cure for tinnitus and no treatment available except masking devices or CBT. I look forward to a time when doctors will be able to prescribe medication to reduce or eliminate T and I believe that we will reach that point within the next few years.
Today is the first anniversary of the minor head injury which lead to me develop T and in the last year I have been through some difficult days but I intend to stay optimistic from now on and I would urge everyone else to do the same.
I hear you xxx
Yeah if I had maybe another year or two left of this hell...but a lifetime, no chance for me. This has definitely shortened my life span. There is no chance I exist with this for another 30-40 years. Just no way, no how.
Can you be more specific ?
My general health and lifestyle is not like it was pre T, this will hurt me in the long run. Also, I will not live into old age with this/like this, I will make sure of that.
It not just T it's what you cannot stand. I had severe eyefloaters 10 years back.
It's when your vision is something like this
All kinds of strings and dots in your vision 24/7 .... in both my eyes. I had two vitrectomies (operation on the eye to get it removed) I was so happy that I could see normal again after 2 years....... I thought nothing could get me down anymore because worse than this was not possible.... Than T came along 10 years later.....and it started all over again.
Now I'm done with T... I realy do not care about it anymore.... but now I focus on a little toothache that drive me nuts for no good reason.
Therefor I think that if the brain thinks you must hate something you have....it will bring you in panic mode. If your brain does not think it's important...you could care less about the sound, pain of vision you have. My girlfriend has eyefloaters all the time ...she doesn't care at all. She says...i'm glad i'm not blind
It's weird how the body works and a fact that our bodies are not perfect at all.
@Telis..... I have the upmost respect for you , you know that.... My T was also so damn loud I could not hear a thing and I hope it will settle down for you someday.... I hope this for all of use btw
@Telis I can't even remember all the times over the last 40 years with T that I have thought about giving up, but I'm still kicking. You have to think of all the folks that you will effect if you take the easy way out. What keeps me going is hope and faith that one day something will come along to fix this mess. Mine is so bad that all I can do is deal with my stress and anxiety. No matter how bad you think you have it now there is always someone who has it worse. Years down the road you will look back on your present conditions as quieter times so enjoy them while they are quieter. When I hear about folks habituating that's great, but for me its always a very temporary plateau of relief only to change again. Its kind of like every mountain you climb there will be a taller one awaiting.
Hi john, I had mild, I guess probably normal T and it has gone to the moon as far as severity. It's a long story but I did some pretty nasty things to my ears that I thought were helping my T in the beginning-lots of ototoxic drugs including antibiotic ear drops and the Valsalva method until I caused a ton of damage. Withdrawal (cold turkey) from various drugs that were given to calm me from the original T onset. I know its bad, I know it because I went through about 10 different levels of severity. I am off the charts bad now. I spend 14-16 hours in bed exhausted. I have very bad H (the sound of my own voice hurts and sends my ear muscles into spasm) and I have a ton of stabbing ear pain and accompanied migraines that never leaves me as well. I sleep on and off all day and lay in bed awake all night. I'm not trying to complain but believe me this is not much of a life. So if these are quiet times I don't know what the future will bring, don't think I want to find out, I'm crippled by this as is.
As far as me leaving the people that love me in the future...I left them a year ago with the onset of my T. The old me is gone totally and everyone that still gets to see me knows it. I'm sure they will understand, especially the ones that get the displeasure of seeing how I live and what I go through every day.
I sit here... in tears. Its exactly how I feel, the old me is gone. But in fact I am not. I am Larry : a father, husband, brother and friend. I am still here. I have to be.
I am sure you are more than your T as well. Much more. Connect with the people you left a year ago whenever you can. I force myself to at times. Your friends on TT will be for you too. We know what its like.
At first it was "Holy shit, I'm going to have this the rest of my life.", but now it's "Holy shit, I'm going to have this the rest of my life and it will continue to get worse and worse."
@LeQuack Same here for me about having to live with it for the rest of your days. Good thing for me is its been gradually getting worse instead of just wide damn open before you kind of get used to it.
@Telis I'm the same way about being around family and friends. I tend to isolate my self as much as I can since my hearing is just all noise. All I can do is lip read to communicate with folks. If I were to go blind I wouldn't have nothing but screaming T and that would be real hell! ha ha . Your family is probably about like mine don't have a clue what torture we go thru 24/7 with out one second of wake time with out T. I have found out that isolating my self only makes it worse stress wise for me. Might as well start going around and try to relate to family as why you are like you are. Might be like mine just look at me like oh well that sounds bad,what else is new. Its hard to explain an aliment that you can not see.
@Larry OT Since my T started at such a young age of 14 I often wonder how much better life would have been with out this condition. But I tried to do the best with what I have had to work with. I can understand how people that have all the sudden come down with T and relate to the old me and the new me. For me its been so long ago I can't remember the old me its just me now. You are right you cant walk around with a big T on your forehead and let T define you. You just have to live one day at a time.
I can't even convince people that medications can damage your ears, never mind have them relate to me about T, so yes I see what you mean.
I think T changes everybody.... even when you can deal with it. I'm not the old me anymore also.... I'm more bitter now.... and know that life ain't fair. And fairytales are what they are... fairytales.
But I do know that good things can happen.... so goddamnit people we are not going to loose hope!!!!
I feel for all of you and also for myself.... Wish we could all have christmas together or something.
You need to stay positive. As stated earlier, major advances are being made in otolaryngology monthly. Not yearly; monthly.
We live I'm a world where movie cinemas, clubs, concerts, iPods, video games, military service, and daily life in general are causing acoustic trauma on a cumulative and acute basis. 3/5 teenagers have ringing in their ears and many more have measurable hearing loss. There are MAJOR dollars to be made in cochlear treatment. In terms of treating both tinnitus, and hearing loss. I truly believe that within the next ten years there will be more effective pharmalogical treatments offered.
But we cannot keep living waiting for a cure. You only live once. LIVE. If you accept the ringing your stress levels will decrease. And if your stress levels decrease the ringing decreases. It will always be there because it is like the result of a physiological malfunction such as acoustic trauma or physical injury...but we perceive sounds through the auditory cortex which is connected to the CNS. Stress and anxiety put the CNS on edge...more neutrons Fire meaning louder sounds, more perceivable tinnitus.
I would encourage all sufferers of this disorder to work on reducing your anxiety and stress. Habituation is possible. I am majorly stressed and experiencing a major spike in both my H and my T. But I know that when I reduce my stress levels my symptoms will improve. Work in the present, cry, regret, and accept. Once you accept your acoustic trauma, Ottis media, whatever it was that caused the onset of the T, habituation will begin. There is always someone who has it worse. This condition is SUBJECTIVE. Diet, stress, anxiety, activity levels, etc...they all impact it. Work on reducing the external factors and you will notice decreases in your T.
If worst comes to worst; buy a masker or play some white noise on your computer and make yourself a cup of hot chocolate, sit down in a recliner, and think about all the good things in your life. Enjoy the moment of silence.
The rest of my life with T? That's quite a challenge. I know I can't change a thing by arguing it away or by altering my reaction when ear pain and every god damn tone, pitch and timbre keep changing like it is now (mine is from nerve damage). It turns to mind games if I do. I'm just trying to survive this c*ap! It takes dedication to slowly reclaim yourself time and again. No one can do this bit for me so I have to dig deep. It's no picnic. I have had to make many steps into the dark before I made some progress. little by little I'm emerging from it however rough it has been and continues to be. Rest of my life should not mean a diminished quality of life. I refuse to let to end that way.
I've got those bloody eye cobwebs too!! But not so bad that i would ever have the guts to have eye surgery
I feel for you Telis. I wouldn't know where to start when trying to console you. The only thing i could ask you to do would be to look at the thread entitled "Meniere's disease". Have a read through the posts made by @MichaelM. He was pretty much in the same mindset as you are now, yet he is finally getting some relief right at this moment. There is hope for all of us.
@Fa82 I see you have had T since 10/2014 that is a real new life change for you I'm sure.
Yes. The condition is subjective. Telis has it much worse than me.
But handling this loud, ultra high-pitched noise in my head is a life challenge.
I push myself everyday for work, going outside etc.
But having never silence again in my life is nothing what I am looking for.
Loud T, depression and anxiety are a combination I don't think I am getting old with.
When you become old, you have other things to manage. T on top of this is no life.
But I am not there yet. I hope for reduction of T, a cure or habituation.
Also I have no choice. Have kids and wife. They need me.
Nevertheless I don't know if I will suffer forever.
Habituation must kick in sooner or later.
I am working towards this, but don't know if it will ever happen to me.
Hey Martin...I never want to take away what you are going through. My T and H is horrendous but if I had to deal with T alone (even of I got quiet days) this would be a massive massive challenge. Anyone that deals with any of this garbage has a rough go. I also understand you are dealing with your wife having cancer...my heart goes out to you both. Stay strong friend.
Thanks my friend. I feel the same for you and for the others here (with intrusive T and H).
I hope there will be a way out of this hell. But haven't found it yet.
Some days I can handle it better, most not.
And I have the largest respect to people who just say: F... T and go on with their lives.
What scares me sometimes most, is that I was always a man of action. After divorce of my parents (when I was 13), I managed my life alone. And as a man of action, I decide myself if I will live with this BS or not. You know what I mean. But I am not there yet. Still fighting.
And I think, my two boys would never understand and forgive me...
I know what you mean for sure. If you can be around noise, and don't have H. Just do it Martin. Go out and have fun. If I could do it I would, I can't, I actually can not. I am close to saying screw it and going out and doing things (living my life) and having a loaded gun ready for the consequences. Every little tiny hit to my ears I develop a new noise and things get more loud, painful and they stick. I'm talking even a conversation, my own voice. Every little thing I do makes things permanently worse. I know this because I have done it over and over again. Basically my T is progressive and any tiny sound quickens this process. So do I lie in bed with painful screaming or do I go out? If I go out things get worse (more damage). If I stay in I go insane. What is the right thing to do? Things have gotten out of control with my ears taking hits and getting worse. I lay in bed with the slightest of pink noise for sometimes 20 hours straight now a days. This is the only way to keep the damage to a minimum. I'm to the point where I don't know if I can take another noise hit to the ear, even my own voice. See, I can't take any more permanent volume increases or additional pain, I've maxed out. I lay there restless for hours in the quiet with screeching noise and pain trying to dose off. I loose track of days and time. Who can do this? Is it possible for a human being to live like this? I don't think so. So I may just throw caution to the wind, go play hockey, go out with my friends, maybe take a trip. At least I will have a few more months of real life left, rather than maybe a couple of years like this in quiet isolated hell. Even with ear plugs in my ears I can't take the noise, and if I have muffs and ear plugs in while I'm out it gets so noisy that it is physically painful. Going out=further damage....staying in=mental suffering and isolation. I'm not sure about either of these. I don't have options, if you do, go out and excersice those options...do things you like man! Try and enjoy life.
Here is quote from a article Larry posted here from the New York Times, most of this article describes me to a Tee.....
“Significant relapses occur with new noise exposure,” he said. “We continue to hear from people who follow the bad advice they receive and who go right back out into the world, confused and hurting themselves further.”
Link to article: http://mobile.nytimes.com/blogs/wel...ule=Search&mabReward=relbias:s&_r=0&referrer=
Hey @Telis hang in there man your having a rougher time then most sometimes I say F****it and go out with friends but there's a price to pay ...I'm fortunate that my T comes back down to my baseline after couple days ....But I often think about maybe next time it won't come back down and I'll be more F***ed then I am now. I just pray that we'll soon get some relief ....Stay Strong bro