New Sufferer

[lolkas]

Hello, my name is Zaur and i am from NYC.

I have developed ringing in my ears (i would scale as 6/10) about 4.5 months ago. I dont know what exactly caused this but week prior i got sick (cold/flu) and felt that left side of my face was feeling a bit weird (a bit numb?). I generally think i got sick because i was sleeping under AC for few nights, no other ideas. Then few days later i started experiencing cough and runny nose. on 4th day i started noticing slight ringing but thought its because of headache i had that day and it is normal. on 5th day i felt a bit better but i think ringing was still there, headache persisted and i ringing was still there (i think) but i haven't paid attention to it. I went out with my friend and end up going to a gun range (we worn ear protection, as always) and i haven`t noticed any ringing after a gun range. We were there maybe about 20min and shot few pistols, then repeated. Again, as i said after gun range i haven't noticed any discomfort in my ears/head and etc. Then we went to see few movies and went home. When i got to my apartment, i noticed that ringing that i have in the morning increased and when i tried to lay down in my bed - ringing went crazy, super LOUD. I freaked out, called my friend to get me to ER because i thought i might had a stroke or something.

Went to ER and they checked what they could, said i had high blood pressure and gave me IV.

My friend is massage therapist (well he is in school) and while we were sitting in ER and waiting for me to "soak" in the IV he said i have tight neck muscles. He massaged them a bit and then grabbed my trap muscles and asked to move my head left/right. When i moved my head ringing was same however i felt discomfort in my eyes.

Anyway, they discharged me after 3 hours and my buddy dropped me off.

Next day i had craaazzy headache, pain in my left eye and of course ringing in my head. Within next few days i noticed something flying in my vision...looked like a bunch of flies. After washing my face and looking at white wall in my shower - i was terrified, i saw eye floaters in both of my eyes.

Cold/flu - whatever it was in my body for next 1.5 moths...i went to my doctor only after two weeks when none of this was not resolving. He checked me, did blood work and said it will all go away. Since my vision has changed i was told to see eye doctor which told me that floaters are normal and my vision needs a little correction now. I expressed my facial numbness (left side only, which mostly went away) to him as well and he asked me to get MRI because it sounded like MS to him. Well, MRI came out clean (no contrast though, it is not needed for MS diagnosis). I then went to ENT - he said nothing can we done and i have to get used to this condition. Got checked by neurologists and they have tested my hearing - no hearing loss within ranges they test (one test was up to 12500).
Just recently i went to another ENT (reputable place in Manhattan) and they did test my hearing too, no loss as well. I have explained to him what is going on and he gave me Prednisone to see if it will do anything. Interesting to know that he has tinnitus too (he hears crickets) and said that unfortunately there is not much in research filed for tinnitus... ordered me to see him in two weeks though.

Right now, 4.5 months in - i cannot "habituate". Ringing is all i hear and it is so stressful. For all this time i haven`t had a moment of silence nor anxiety free.

This is totally ruining my life. I am hard working guy and young (26 years old). My work (IT) requires constant knowledge refresh and i have to be on top of technology to get things done. Tinnitus is not allowing me to do so. Masking does not always work, not even on busy streets some times, however i enjoy walking in Manhattan because random noises mask my T somewhat.

What should i do ? There is no joy in life for me anymore, i am just trying to make it through the day.

Thanks,
Zaur.

 

[Jason C]

I feel your pain , it's not an easy thing too live with and living in NYC as its such a noisy city (loved NYC though)

Best thing too do is invest in ear plugs, ear defenders etc and protect your hearing as much as possible, avoid loud noise (cinema, clubs, noisey places) and hope it settles down.

Good luck.

 

[lolkas]

I feel your pain , it's not an easy thing too live with and living in NYC as its such a noisy city (loved NYC though)

Best thing too do is invest in ear plugs, ear defenders etc and protect your hearing as much as possible, avoid loud noise (cinema, clubs, noisey places) and hope it settles down.

Good luck.

Hey Jason,

i do have earplugs (earasers) and put them on when i feel i need (street), however i for sure put them on cinema/etc if i will go.

Are there any sufferers here from NYC ? I thing i need to setup a support group here in the city, where we could meet and talk to each other. I would say Bryant Park or Rockafeller Park are nice places where there is external noise in "good" levels and we could enjoy some time distracted from this beast.

 

[MikeL1972]

Hi lolkas,

Welcome to the board.

You expressed yourself very well in your post and you did all the right things by getting studies done and going through the standardized medical route.

At this point in time, the best thing you can do is to learn to cope with tinnitus; it will not kill you. It's just your anxiety that's taking over your reasoning ability. Like you, I've only had tinnitus a short time (7 months) and I also experienced severe anxiety. Then after about two weeks, I came to the realization that the more I focused on it, the more it would bother me. Basically, I stopped fighting it because it's a losing effort. After that, my sleep patterns improved dramatically and as the weeks and months wore on, I started to pay less and less attention to it. Of course as I type this message, I hear it, but my nervous system has filed the sound into the "not important" file.

As you mentioned, even your ENT has it. It is a very common condition in the U.S. alone and per statistics, it is estimated that 1 in 10 people have it so you are talking around 30 million people right there! Unfortunately, science and medicine have not caught up to it yet with a formal, standardized cure, but one day they will. In the interim, your best bet is just to let it go and learn to habituate.

Incidentally, I am also in the IT field.

 

[lolkas]

Hi lolkas,

Welcome to the board.

You expressed yourself very well in your post and you did all the right things by getting studies done and going through the standardized medical route.

At this point in time, the best thing you can do is to learn to cope with tinnitus; it will not kill you. It's just your anxiety that's taking over your reasoning ability. Like you, I've only had tinnitus a short time (7 months) and I also experienced severe anxiety. Then after about two weeks, I came to the realization that the more I focused on it, the more it would bother me. Basically, I stopped fighting it because it's a losing effort. After that, my sleep patterns improved dramatically and as the weeks and months wore on, I started to pay less and less attention to it. Of course as I type this message, I hear it, but my nervous system has filed the sound into the "not important" file.

As you mentioned, even your ENT has it. It is a very common condition in the U.S. alone and per statistics, it is estimated that 1 in 10 people have it so you are talking around 30 million people right there! Unfortunately, science and medicine have not caught up to it yet with a formal, standardized cure, but one day they will. In the interim, your best bet is just to let it go and learn to habituate.

Incidentally, I am also in the IT field.

Hey Mike,

I do understand that at this particulair moment - habbituation is the only real way, but as you see i am struggling...

Honestly, i would feel much better if this problem would be recognized by medical field as severe as cancer, likemia and etc. This is however not the case at the moment. And reason ? People just habituate for the most part. And therfore its is "not that big of the deal" right now. You are right, it is about 1 in 10 with this condition, however it is an outdated number and i am sure it grew quite a bit. Just think about it, a lot more people are using earbuds, headphones and etc., blasting music and end up with this condition. There is not even a sign when you go to a bar, restaurant or night club/cinema that states how loud it could be and wearing hearing protection is recommended/required. Basically what i am trying to say - there is complete lack of awarness, simply - awarness!

Sure this condition won't kill you, but it sure does affect your performance at work, and quality of life is miserable. I mean we suffer even when habbituation occurs. People do better, but happines is long gone no matter what we say, its just different world for us now.

Right now i am 26 y/o, i have no kids and practically just started my life aaannd this problem hits me. I dont know how future will turn out for me now. I was allways help to my relatives/family, work hard and had relatively healthy lifestyle (minimal drinks once a few months, good food and sports). Was thinking that i was doing it all the proper way. But now - i don't know. I have no desire on practically waking up. My goal throughout the day is just to "make it through". Only time i get some sort of relief is if i go and walk around the city where external noises mask this beast in my head. My family is not near me, but they struggle with me, even as hard as it is to understand this cindition - they are great support, but i dtown them mentally.

This is why we need to make people understand that medical field has to turn their attention towards it and have not just 5 trials in 5 years but as many as they have for other ilnesses to give us something that could shut this thing off. Really, like a pill for diabeties - and as far as we take it on daly basis - T wont be there or barely noticable. At least something like that. If you calculate how much money medical filed could make from this - its like trillions of dollars. I mean, its about 40+ million in USA alone, 100 million in Europe, ~10 Russian and we can go in in on. Overall about 400 million people worldwide have this thing and all if not most will be willing to pay virtually ANY money to get rid of this thing.

I am very sorry for such a long response, but i feel that we must do something. If we won't help ourselves to push this world towards cure - it will take forever.

This is why we need to get real people outside in organised way to demonstrate what we are dealing with. How cancer/lukemia/hiv got attention. People started raising awarness and here you go - cancer is very treatable condition, lukemia is getting treated as well (not as good as cancer, however it is improving year by ear). And thats what we have to do as well. There is such thing so far for NIHL.

 

[Sam Bridge]

@lolkas tinnitus sucks but you can still enjoy life. Over the summer i was obsessed witb my t which made me miserable and gave me many nights with broken sleep. But slowly i started thinking about it less, using masking at home when its quiet and after a while my anxiety about t dropped and i find myself in a better place now. I also sleep waaay better with no masking at night. I find that odd, i don't mind listening to i when i go to sleep but when its day/evening i like to have some sound enrichment on.

Basically, yeah it sucks but doesn't mean you can't enjoy life.