So What Is Life with Tinnitus to You?

Hi all,

Since I have accepted that T will be with me 'till death do us part', I would like to know what life with T is like to all of you? This question is more so directed to those that have had T over a year and a half and have habituated mostly to it. However, all answers are welcome. Even though it may be bias to ask on this site since many of us are the sufferers, I would still like to get an idea. Please paint a general picture and not just the sufferings T brings, all the joys life brings. I think we can all agree that life without T is much easier but is your life enjoyable now? Are the joys in life (such as having a family, traveling, etc.) enjoyable to you? Do you let T take over your life or are you taking over T?

Enrique

 

Enrique I have had T now for over a year and I'm basically living the same life as I once had but I live it very causiously . I have my days which I'm as happy as someone can be and then there are those days where I suffer in silence cuz I don't won't to have my family worry about me. Life goes on with or without T .....Eventually you go back being who you were before T but in a very cautious way....

 

@Carlos1 That is pretty much what I feel like and it will never change, not even with a cure for T will I stop being so cautious (since I have hearing loss as well) Thanks for your input.

 

Tinnitus is the symptom of the devil. A little bit of hell on earth you might say.
No matter what we do, no matter how much we pretend our T doesnt bother us, no matter how much we cry, plead, beg, etc etc Tinnitus is still gonna be there. theres no escape. this is the ULTIMATE form of torture. except there is no pain nor is there any giving up. Until we ALL get serious about finding a cure
we will have no other choice but to deal with it.

 

I wake up. First thing I check if T is still there. Once I realize we both awake a start my routine. Shower first, then I go to kitchen and prepare food for breakfast and lunch. (I am cooking freak so cooking keeps me busy) During the cooking I hear lots of sounds in the kitchen. Some distract T, some aggravates it. When something aggravates it I try to ignore it and continue on. Then, i leave to work. During the train I usually practice relaxation to improve my vision which might actually help me with T. I do it with headsets and music I like. Once i get to work, I just try to work and ignore it. When I am busy I dont hear it, when I have time I pay more attention to it. During the day I read T forums hoping to read something that will help me get rid of it. If it is too loud I mask it with listening to music. Then I go home. It is that time when it gets louder but I try to cook and do stuff I enjoy. Once exhausted I go to bed. Everything is off, now I hear you T. For some reason I prefer to fall in sleep with T without masking sounds. Masking usually drives me nuts. I start to count numbers and pray for T to go away. I think about my life and why this T is with me trying to justify it. Finally I exhaust my brain and fall in sleep. Usually I wake up 2-3 times a night.

REPEAT!!!

 

The first year especially the first 6 months was all hell and panic attacks. Life was bleak, lonely (due to hyperacusis which forced me to wear ear plugs and stayed away from social contacts), depressed and lots of sleeplessness. Over a year to 2nd year I decided to accept the reality of T if not T itself, and just tried to co-exist peacefully with this beast, with lots of setbacks. But I had some fun back being able to live my life again and tried to enjoy what I used to do such as fishing, gardening. Third year life was basically back to normal and I wrote my success story on Yuku forum. Now I don't give a dime what T does, high or low. Life is absolutely enjoyable. I try to be positive and focus on Now the very moment in front of me and not the distant uncertain future. Don't get me wrong, T blasts as hard and high pitch as can be most morning when I wake up. Sometimes, on hugely spiking days, I could hear the T on a flight with all the plane noise. Some days, even shower couldn't cover it. It is an ultra high pitch dog whistle, packed with so much condensed energy like a laser beam in a night sky. It was definitely unbearable at the start, but somehow I habituate to this sound nowadays and go about enjoying my life to the fullest, not holding anything back or tip-toeing around tinnitus. T can go to hell while I enjoy my life's heaven regardless of what it does. It has lost its tyranny over me.

 

Mine is very quiet of course compared to any others, however in the beginning I focused on it 24/7 so I could hear it everywhere. Anyway, now I dont focus on it or rarely do and its not annoying. The only thing that is has changed, as Gary mentioned, is being careful. I havent been to do concert or club since and I always turn down invitations like that. I do go to loudish bars, but with plugs and stay away from the speakers. If its a new place I try to find out beforehand how loud it is. I did go to a concert once but it was super loud even with plugs so I left after 2 minutes. So I think of it as taking care of myself, kind of like putting lotion - a bit annoying but necessary.
Speaking of annoying, the most problematic issue I have is intolerance towards sugar and buckwheat. Every time I eat out its a huge problem what to choose. I have to discipline myself a lot as well as I cant eat a lot of things such as yogurts, bread, sauces, fruit, pasta, even white rice and potatoes etc. Now that has been a challenge, but I guess in time I will habituate to that too and continue a normal life.

 

I would have to say LAME now compared to exciting before!

 

It´s a different kind of life, still liveable but adjusted. In a weird way it feels like you have been in combat and returns home after years at the front line. Not that you have been risking your life but you have seen the darkest and deepest places of the human mind, and the knowledge of how fast and hard you can hit rock bottom is the thing that scares me more than anything else.

 

Life before T was full of excitement, Life after T is full of caution, lack of sleep, and a real confidence breaker.

The worst part is most of us are stuck with this for life, and many times the condition can get worse.

 

My life was shit before and after tinnitus so there is only a turn for the worse, however I was not a party animal, an athlete, or a very socially active person before. The only real difference along with the time wasted on trying to solve this problem is the increase in annoyance and the need to avoid loud sounds and headphones when it is possible.

This sound is not the ultimate torture, it is not even pain, but sound. It cannot be compared to some other illnesses which are far worse and give you horrible pain. And there is escape from this, go to HBO and you will have no tinnitus, if you have enough money build a hyperbaric house and live there. Many drugs reduce tinnitus.

 

HBO helps only if you have T from diving. Besides that there is only little chance it will help.
HBO appliances here in Germany are more or less completely removed - with some exceptions.
Which drugs reduce tinnitus - if excluding benzos?
For me life with T is a life with anxiety. Never had any anxiety in my life before.
And I really don't know why such a sound (although very shrill) causes me such problems.
It is a mental game.

 

rofl where did you get that info?
yeah sure lol, there are there are 2 centers in my 200,000 city and no in germany
retigabine, dexamethasone, NMDA
because the problem is not sound, the problem is potassium channel disfunction and sound is just one of the problems.

 

"So What Is Life with Tinnitus to You?"

Everybody's experience is different. In my case, life is much better today than it was before tinnitus. Would I prefer not to have tinnitus? Sure. But I do not view my life through the prism of my tinnitus. That was not always the case, but it most certainly is the case now.

Best to all -

Dr. Stephen Nagler

 

If it is potassium channel disfunction then would a T sufferer not have symptoms in both ears? Or can potassium channel disfunction take place in one half ?

Thanks.

 

It is not a generalized potassium channel disfunction as that would lead to epilepsy and a host of other problems but you have probably heard of tinnitus sufferers who have visual disturbances or vertigo. Depending on the severity and type of irritant one or both ears can be affected leading to one or both ears being damaged and different outcomes. For most people it is very small irritation and they live with it without complaining, some do not even visit a doctor like my friend who has it for 10 years already, he also frequently goes to parties, loud music events and smokes marijuana and never uses any ear protection. Although not all tinnitus is caused by potassium channel disfunction as some have tinnitus due to tumors, jaw problems and other things, but for the most part tinnitus is caused by potassium channel imbalance created by something that is damaging to ears or something other close to ear nerves. So although the damage is mostly in the ear nerve it can spread around creating other symptoms.

 

interesting so you don't believe the outer hair cells are relenant? your belief is dysfunction in the ear nerve?
my T is unilateral and came on by an accident where i injured the right side of my body, including jaw and right side of skull (no fracture).

i have considered hyperbaric oxygen yet am not sure it will help and is very expensive.

 

My life now is filled with anxiety, caution and mental torture, I keep telling myself I am only 3 months into this mess and things will get better.

Life before T was exciting and full of joy.

I loved life and was enjoying it to the fullest every day, I still love life but sadly this bullshit kind of ruins it for me.

 

@martin12 Actually according to ATA, American Tinnitus Association, most people do not have it go louder. Also, around 80% of the people are able to habituate by themselves, others continue their normal life with help from professionals. There is still hope for us!

 

Stina, is that diet related to your t??

 

I would take what my dog has to say about tinnitus with more seriousness than anything coming from the ATA

 

Nooo its related to allergic reaction....

 

Billie,
That sounds truly inspiring. I hope one day I also achieve your level of habituation. I congratulate you on your road to freedom. I have read your a man of God. I'm also a man of faith. If you don't mind me asking, how have you let God help you during this time? I don't question his doings even when they might seem meaningless and sometimes painful. I know everything is for a greater good. I just want to know what he wants to use me for.
Best regards,
Enrique

 

Hi Stina,
It's crazy you mentioned it. I have had T for almost 4 months and this past week I have been so focused on my T that nothing seems to cover it up, not even the shower. It can get so annoying and frustrating and all I want to do is get my mind off of it. Sugar is also a trigger for me. I didn't notice it till this past week as well. I guess I have to change my diet but it is a good thing I guess since I want to live a healthy lifestyle. Thank you for taking the time to respond.
Best regards,
Enrique

 

My life is the same as before T....um...... just with a fax-machine, cricket, and occasionally shrieking sound (that varies in loudness )accompanying me through the day and night....

What helps: I try to consider the noise being "beside" me rather than inside my head. That mental picture of distance helps. Being in the kitchen, outside or in a store seems to mask it - or distract me - not sure which.

And because you really can't escape it, finding distractions - something that feels like a guilty pleasure helps me. Watching stupid TV shows etc...but nothing quiet usually. And telling someone it's really a bad day with the T helps too.

Hang in there -

BTW - I have T along with significant hearing loss and wear hearing aids.

 

Good question, Enrique. John 3:16 tells us God is love. He loves and cares about us mortals and sinners enough to give us His only begotten son to be crucified and to atone for us. This is love of the utmost kind and sometimes we fail to understand why the imperfect beings like us deserve such love from the Creator. Sometimes when the suffering was deep, we may have doubt on this love. But as Christians, we need to trust God regardless. After all, we are not as bad as Job in our trial. We know God's love does not mean His children won't suffer in this mortal life. The Devil can inflict misery and suffering and bad people can do much harm to the good and innocent because God respects people's free agency to choose good or evil.

Even the Savior Himself suffered the humiliation and the incredible pain on the cross. Yet in His last breath with incredible sufferings, He prayed and pleaded for forgiveness for those who tried to kill him. Such is the sublime example of love and compassion we mere mortals can never measure up nor even fully understand, and yet can in our weakness learn to emulate in a small way. That is why despite our sufferings, we learn to still trust God in His matchless love. Hopefully we turn this trial of life, this incredible darkness of tinnitus into some light and hope for others. By coming back to help those in dire need of hope and comforting, we are turning our weakness into strength, negativity into positivity. That may be the lesson God wants us mortals to learn through our sufferings. That is my humble 2 cents trying to make sense of the sufferings of this mortal life.

 

Hi Rachel,
Your perspective seems creative to think of T in such a way. I also need distractions because I hear it everywhere unfortunately or maybe it is because I am focused on it. I also experienced sudden hearing loss and T. How are the hearing aids helping you? I just got some about 2 months ago but they aren't so helpful