HOW AND WHY? PLEASE READ ALL OF THIS

Its so hard to step back and watch myself create this account. To scan the internet on my phone and laptop constantly looking for relief, cures, stories, some piece of mind even if its because I'm being busy. I don't mean any offense to anyone because obviously I'm here, scared, and so are the rest of you. Ill try my best to give an intro to the current hell I'm living.

I don't know what happened. I woke up one morning after drinking really heavily at a bar (no loud music or performances to blame), and it was a complete episode. I had drank kind of heavy a few days in a row...and i drink a lot anyhow...but this morning sticks out as the biggest turning point in my life ever. Ive been puking all day before swearing that id never drink again just like anyone does on a crazy hangover...but not ever felt like i did this particular morning. I had so much anxiety/panic...I felt so uncomfortable and the "new" and worst item was the ringing in my ears. It was so profound and at this point i didn't even know what was happening. I didn't even know the word tinnitus or what it was. I went so insane that I had my girlfriend take me to her grandmothers to check my blood pressure...which was obviously high from panic/hangover/etc...and then that just sent me into a week long obsession with a blood pressure machine i borrowed from someone. All i wanted to do was go to a doctor but i had no insurance. I spent the morning in absolute terror and even set up health insurance over it. I couldn't sleep for 3 days. My mind, body, and nerves were so shot over this ringing in my ears. Its the only thing that wouldn't go away, and still hasn't.

Now that I'm further down the line, a little more knowledgable about it all, Im here. I saw an ENT who really gave me no hope or closure. I read something someone else said on a website about the doctors never really being alarmed for you...and thats exactly the experience i had. He told me tons of people have it but Im a case where its "effecting my quality of life." Thats an understatement. He ended up doing a hearing test and said i had some minor damage blah blah but nothing concrete. I explained that I've always played instruments loud and listened to loud music, but it just felt like I was giving him a diagnosis to give TO me. My mind still takes the wheel on the cause, sending me into a vicious cycle. Is it a tumor, is it menieres disease, is it just this malfunction with my ear that i have to "deal with" for life. Ive never been in such low places mentally over this.

After a certain amount of time passed i sort of numbed myself out about it. Still with no answers, still with it being new and driving me crazy...I had to sleep. I couldn't even dedicate the energy or thought process to it or i was going to crack. But that only lasted so long. Now its this cancer i have. It never goes away. I don't appreciate anything. My motivation other than just going to work so i can be busy and make ends meat, is gone. I dont feel like myself and every time i think about this being a part of my life my chest sinks in and i don't want to be here. Ill get so angry and almost start hitting myself in the head, and then break, hit the other end of the spectrum and be so hopeless.

I feel like I'm out of options. I've read every possible thing there is to read. I could almost be an ENT or an entire walking website. No matter how many stories i read, and get that brief relief of "I'm not alone"...i just can't do it. How is there no cure for this? If we know whats happening...how is there not a surgery? Why is it "TRY SOME B VITAMINS OR SOME BULLSH*T AND JUST ROLL WITH IT. FOR LIFE" I need clinical results. I will admit to having good and bad days...and i understand that when I'm consumed or stay busy its not the highlight of my thoughts...but the second I'm not busy or think about going to bed its absolute hell. its like I'm just waiting for it. I can't even describe in words what it feels like to stomach having this for life. I would give anything just to hear quiet. The only thing there is for normal stress, or anything thats bothering you is just to relax...and that doesn't exist for me anymore. I'm on one extreme to the other. I am very dependent on being physical, and I'm even watching people in wheel chairs thinking to myself i would give up my legs to be able to close my eyes and not hear this sound.

I know about ginkgo, lipoflavenoids, try and cut back stress (LOL), white noise, whatever the hell masking is, "stay busy", what had these results what had those results, try and not focus on it (NO SH*T)...it all seems so petty. If you can tie your shoes these natural "tips" already came to you when first dealing with it. I would really like some PROVEN clinical information. The best of the best breakthroughs. And obviously anyone that has anything helpful to say, PLEASE.

 

Welcome to the forum jpring.
This is the place to be. Only here I found others that have Tinnitus too. They can relate and get-it how crazy it is. I felt disappointed in the medical field that there wasn't a pill to cure it.

I sure your life is not petty, so live for that. So many things to do. If you have good days, that's a plus. Even if you have moments out of a day that seems ok, I'll take it. Your life won't leave you. Perhaps our brains will learn to push that noise back where it came from. I HATE IT TOO,,,oh well. When I'm busy outdoors its seems better. Welcome, I hope you find some good days ahead.

 

Yeah my ENT was just like that yesterday, no concern, just told to play some music to mask it. Well, thanks Doc, for nothing.

 

There are some promising treatments or cures on the horizon such as AM-101 by Auris medical and Vagus nerve stimualtion developed by MicroTransponder as well but unfortunately are still in clinical trials and not approved by FDA , but hopefully soon!
I have already tried Acamposate (Campral) and Prednisone but so far it has not worked for me. I have heard that Prednisone had worked for someone else though, so it might be worth a shot.

 

Non-noise induced and Non-injury related T is a symptom of something else going on in your body. Have you been taking a lot of prescription meds or other for an extended period of time? If yes, read up on "Otoxicity". You can read all you want but nothing will tell you anything until you get some tests done.
Start here.
1. Complete blood work up. Consult with your Doctor about results.
2. Complete allergy testing. Consult with your Allergists about results.

 

Don't blame the doctor. Believe me if there is a cure or magic pill that reduces or eliminates the T the doctor would be the first to call you. Doesn't look like a lot of money is going into researching tinnitus?

 

@jpring

Sorry to hear about your tinnitus? How long have you had it now? There's a couple things I'll throw in. You said that you are a heavy drinker, and that this came on after a particularly heavy episode of drinking. Do you experience withdrawals when you stop? Shaking, sweating, anxiety through the roof, etc.? Your post sounded to me a lot like you're having alcohol related withdrawals.

Withdrawing from alcohol can kill you without medical supervision. Depending on how old you are or how likely a doc will judge you to just go back out and drink again, they will often prescribe a benzodiazepine, such as ativan (lorazepam) because it does not get metabolized in the liver (which is under a lot of stress in the case of a heavy drinker).

Long story short, withdrawing from benzodiazepines can be a pain in the ass too, and is known to cause tinnitus if you do it too quickly. I'm guessing that's what happened to you, but in a similar way to benzos. You stopped drinking suddenly, and your central nervous system is used to have all that depressant ethanol hanging around. As a result, your central nervous system then goes into overdrive in the absence of the depressing agent. I wouldn't be surprised if this was the cause. Luckily, a lot of people who get tinnitus from withdrawal related episodes (be they from alcohol or benzodiazepines) have it clear up eventually, although it's one of the last symptoms of the withdrawal to go.

Full withdrawal for a daily, heavy drinker can take up to 30 days, maybe even 60. The most distressing alcohol withdrawal symptoms usually disappear within 7-10 days, but it depends on how long you've drank, how much you drank, and how many times you've withdrawn before. The more you withdraw from a particular drug, the harder it gets each time.

If you've had it for a relatively short period of time, I would chill out and not panic. It will likely clear up. It sounds like you're drinking a lot though, but that's only for you to judge. I quit drinking myself because I was using it as an escape from tinnitus.

 

@Ken219

My ENT spent the majority of the time pulling faces at me when I tried to explain my somatic T. His attitude was bad. I know there is not much research but as he is a specialist, I expected more.

 

Ive tried to type this reply 30 times now haha. I keep feeling like I'm wording things wrong, and can't figure out my point or what I'm actually asking. I understand what you're saying when you relate the alcohol withdrawal to the benzo withdrawal...but I'm concerned about the timeline and when you said "suddenly stopped drinking". It sounds like you imagined me waking up with an insane hangover plus anxiety, so i decided to call it quits after that day, and then a few days later during part of withdrawal symptoms the ringing started. I DID stop for approx two weeks...but the ringing was there that first morning. Its literally like i woke up to a mid life crisis or something. Its bad to say...but I'm used to waking up after a heavy whiskey night hating myself and feeling horrible...but never the ringing. I drink (not every but) most nights after work...just beers. Only when i take it too far do i wake up with that crazy strung out anxiety feeling, like anyone. But even then I'm not a guy that wakes up looking for the bottle...and i don't ever shake. I might be edgy or something but i don't have the "shakes."

Now when I drink it has to do with my own alcohol issues, but also running from the tinnitus. My mind knows it doesn't take it away...but when I'm drinking with people I'm busy, I'm talking...plain and simple its just easier with a buzz (duh). Its possible that if i stopped drinking for a long period...i might actually feel some withdrawal or realize how much i am dependent...but i don't know. The ringing came out of nowhere and its killing me. I want to say its been about 4 months or so since it started that morning. It was all at once. My eyes opened and it was like "oh god i feel nuts, drank way too much, here we go again with all day anxiety, and what the hell is this ringing in my ears." I also had some headaches for a few days...but they went away.

Another thing Ive read and hate admitting...My t gives me that crazy full ear feeling. like there is pressure inside almost even pushing outward sometimes. Its killing me as it goes up and down i can't calm down because i don't know whats going on :/

 

Ive never taken anything as a prescription. Since I was old enough to even experience stress, anxiety, a hangover or anything like that even then I've just taken a xanax, or klonapin (literally maybe 10-20 times? it would have to be bad)...and i usually don't even like doing it because i hate that feeling of needing something or not bullying it out mentally. I should def follow up on blood work and allergy stuff...but otherwise it came out of nowhere and I'm lost. just boom one morning after drinking which i hate saying is normal for me

ive also played music loud for a long time in storage units and stuff...usual concerts without ear plugs...but why don't any of my friends have it? and why after this random night of drinking?? the ENT did say i had some hearing loss...how much can hearing loss really give to tinnitus?? should i push that route?

 

First of all get a hard COPY of your hearing test. What does "some hearing loss" supposed to mean anyway?
Standard hearing tests go up to only 8khz. If you could get a test up to 12khz or even 16khz, then you would see if you have any serious hearing loss in the higher non-speech frequencies. Any dips or slopes can reflect in tinnitus.
Having said that, there is still no cure for tinnitus yet.

 

Most of us have been in similar situations, I know I have. It's a bitch and everyday is a challenge. right now I can't add much to what already has been said, except to say that you jpring are not alone in this. I am glad you came here and posted. You have found a home right where you fit in...

 

Finding the cause of T is real detective work that can lead in circles if you rely on Google and self diagnosis. You need help from different types of Specialists to eliminate possible causes even if that means second and third opinions. I think some if not many Doctors just shrug their shoulders at T and prescribe something to help cope. Doctors "Practice" bc that's what they do on you within their field of expertise. You are a "Patient" bc "practicing" medicine requires you to be "patient". My point is you are your best Director of Habituation or Resolve of your T and the first route you need to take is to get a complete blood and allergy analysis. If your blood work shows abnormalities then your GP will direct you on the next step. If the Allergist reveals some allergies then you need to throughly evaluate the environment you live and breath in and or the foods you consume.

IF you think your T is not injury, noise or drug related then it's a symptom of one or more things and you need to find answers in your own body to eliminate the possible cause or causes.

 

Hey there @jpring. I am so sorry you're going through such a difficult time right now. I know most, if not all, of us here have gone through a similarly trying time.

You said "I'm here, scared, and so are the rest of you," but many of us here are not scared anymore. Do we love T? No. But I'm living a great life again, about a year later, with T. I hang around here mostly because I really like the community and I hope I can spread a little hope from time to time. You can come out on the other side of this whether your T goes away or not. That doesn't mean it wont take some work, but it is 100% possible to feel calm and happy again. I know that probably seems completely impossible to believe right now (it did to me, too, when mine started), but it is possible.

That said, if you really don't know what caused your T, do go make sure you get all the right blood work and potentially a CT scan or whatever your doctor recommends to rule out a tumor or something of a more serious nature. If it's not that, then you're going to get different results with different things. T is a symptom, not a disease, like a runny nose. If you have a runny nose and you take a benadryl, but the runny nose is caused by a viral flu, you're going to get as good a result from that benadryl for your runny nose as someone is who has allergies. The same goes for things out there like benzos and any other thing out there within reason (i.e. no one is going to feel better from using "The Tinnitus Miracle" - because that is hogwash.)

I think the two best things for me have been reducing my anxiety and being healthy. I see you're looking for a pill/surgery/miracle cure, but don't underestimate the power of your own body when you give it the right tools! I know that's probably an annoying thing to hear, but reducing anxiety can physically reduce your tinnitus if your T cause had to do with excitotoxicity. That's why benzos can be really helpful to some people in the beginning (for me, they really reduce the intrusiveness of my T - I don't take them regularly, but when I'm having a crappy day, I do). Don't feel bad about needing it now, you wont need it forever and your body needs sleep. If you T is from some kind of vitamin deficiency, then taking those vitamins can help, ginko can help if it's circulatory - I've heard those kinds of things working for certain people. My T is noise induced, I knew that right away, but if you have been listening to loud music for a long time, it's not unbelievable that it has only caught up with you now.

Either way, if you haven't had it that long, it could still go away, but you should give your body every chance to heal. That means perhaps weaning off the alcohol (slowly and safely) and other unhealthy habits so your body can devote resources to healing instead of damage control. Sometimes T just goes away in a few weeks/months, but I've mostly heard it takes a long time to heal mentally and physically, but you can heal! Hang in there and know, as you said, you are NOT alone It could go away, or you'll habituate, but either way, you can be okay again.

 

Hi jpring, I've been a T sufferer since August 2012, and mine was noise induced. I've been a hard hitting rock drummer for decades, and now I have to pay the price. I won't annoy you with more vitamin C or less coffee BS, because that's useless info. We all know T sucks, it's a bitch, period paragraph, and we all have to accept that as a fact of our lives, like it or not. Hearing damage is building up very slowly, compare it to a stone wall which is built up brick by brick. Every time you expose yourself to loud noise and your ears ring (temporarily), a brick is added to the wall. Eventually the wall will be completed, resulting in ringing ears that keep ringing permanently. If you still ask yourself how you got T, I think the answer is quite simple. You obviously have a history of playing loud music and going to rock concerts without hearing protection (plugs or muffs). But there's more to it. As I understand from what you're telling about yourself, you've been a heavy drinker. And here's the thing: Alcohol changes the perception of what you hear, it benumbs your hearing. As a result you think that the music was not too loud, but when you're drunk, the music might be way too loud, and you don't notice at all. So what's happening is that you think you are safe, but at the same time, in a loud bar or whatever loud environment, you're just ruining your hearing, thinking that you're perfectly allright. That's the trap. Believe me: Loud noise and large amounts of alcohol are a dangerous combination.

 

1. I told my doctor over the phone. answer = It could be a problem with the Eustachian tube, see the nurse.
2. see the nurse, explain the noise I'm getting. answer = I don't know anything about tinnitus, ear looks ok, see the doctor.
I'm guessing step three will be a referral to ENT. I'm just hoping he\she may be able to actually help. But who knows how long that will take. I'm finding out doctors know a little bit about a lot, but don't know much about anything. They just know people who know things.

 

I think (and hope) eventually it may lead to noise being the cause. I don't know what made it so sudden. The way i woke up to full blown symptoms...but if I am going to have this horrible problem my whole life id at least like to know its nothing else wrong with me, than just noise damage. i took a pretty bad noise injury when i was younger...like 12 or something...a bunch of balloons filled with gas for a 4th of july party went off by accident and my ears sounded like blown speakers for 2 weeks or something...and i also have always played loud live music in storage units with bare metal walls...and no plugs. even when you get carpet or foam for the units it doesn't help that much. but i don't know. the fact that you can even have something like this for life. and not knowing whats going on. i hate it.

 

i know exactly what you mean. i setup health insurance and its almost like i don't know what to do with it. or maybe not what to do but where to use it. everyone seems so under qualified these days. i swear i had a doctor before i went to the ENT google something on his phone right in front of me. its comforting to see younger doctors thinking they will be "new wave cutting edge" blah blah...but who knows. and when i think of older doctors you feel like they have more experience for sure...but not enough new practice. i hate searching for stuff like that. i have yet to find a primary care doctor. I'm only 28 but soon enough ill need one on hand haha. especially someone to do routine blood work and try and rule out the cause of my tinnitus.

 

I've seen the doctor today who has reffered me to NET with a view of me having an MRI scan. She seems to think it may be a acoustic neuroma. Pretty scary. But atleast i feel i'm getting somewhere. I should be getting a letter within a week to ten days with appointment date. I'm guessing the MRI wont be for a while yet. To us it's an emergency. To them it's just another day. My tinnitus is a high pitch squeel in one ear, which seems to be the main concern. How's yours?

 

Oh i forgot. The nurse i saw the other dayy read to me what she was reading off the computer screen. So it's quite likely your doctor was using google lol. It doesn't fill you with a lot of confidence.

 

Love your blog , it helped , hav e t since April 15 th /2014 ..it is bugging me ..trying to find out why..also have dizzy
ness with..not sure if some people get this too..thanks for listining

 

Aw, thank you so much @alifalijohn. That really made my day. It was my hope that it would help at least one person when I started it, even though it began as more "therapy" for me. Thank you so much for letting me know.

I don't want to get off topic, so maybe yours should be a new thread - but if you're having dizziness with your tinnitus, I would definitely go to a doctor, that might mean there's something going on that can potentially be helped in some way. I am not a doctor, but I believe there are a few things that can cause dizziness and tinnitus. Likely something more going on than just noise induced hearing loss like in my case.

Good luck and let us know how it goes!

 

T

 

the sounds of it vary a lot. sometimes in the morning ill think its quieter...but it always comes and goes. especially depends on how much I'm focusing on it. I'm still not doing well with when i focus on it. it makes me freak out. never able to just accept it. its usually a high pitch ring...sometimes i kind of understand the "hissing" sound that people talk about...and sometimes i even get the fullness feeling in my ear. i really need to go and get checked out again.

 

I'm not sleeping well at the moment. So I had a snooze In the afternoon. The noise seemed so much louder when I woke up. I've read about this happening to other people. Seems like afternoon naps are a no go.

 

Yea, I've had the same experience where I have been up all night then the next day doze off in the middle of the afternoon only to wake up with it screaming at me much louder than before

 

I have definitely had this before. i know i mentioned a lot about drinking...thinking it had something to do with the cause...or just the fact that I'm a heavy drinker...but either way, its become a big mental battle now. every time i try and stay sober and just get this "good natural sleep" i feel like when i wake up its so over whelming. bathroom routine and morning work drive and its all i hear. even though I'm trying to lay off drinking i feel like when i wake up after I'm anticipating the tinnitus to be really bad and to my relief it will seem quieter. i don't know. i hate it so much. the best thing i ever read was "i could write a book on my life before and after T"

@Tom Soria

 

I have the same exact symptoms as you do. My ENT is thinking I have some sort of autoimmune disease in my inner ear.

 

Same deal with me, except I was getting high. Had my headphones on, max volume, watching a TV episode while I was a bit high. The second the episode ended, the ringing was there. I checked my volume controls, and noticed I had everything maxed out. Needless to say, the anxiety set in immediately.

It was not a great night

 

@Champ Now you know about noise exposure and T. I didn't know about T before I got it.
That is the freedom we have. Here drink yourself to death. Smoke yourself to death. Drive a car 125MPH to your death. Allow noise levels to exceed 135DBs. FREEDOM!