So I've Completely Gone Insane. What Can I Do?

On antidepressants since I was 12, initially started because of bullying, social isolation, and mild depression. They hollowed out my whole personality, making me go numb to the world. During this
"numb" period I played lots of videogames, while wearing headphones, losing my social skills and some of my hearing very gradually. It doesn't make sense, I've got ~15db maximum hearing loss at 4k (noise notch) in my left ear (my right ear is perfect, max 5db loss) and my hearing is mostly unaffected and the rest of the audiogram is fine, as are my OAE and ABR, but yet I have crippling phantom noises and sensations.

When I was 15 I first noticed the sound, as well as some giant eye floaters, both of which disturb me to this day. Now I'm just an empty vessel. Well, I hesitate to say empty, because I am a vessel filled with pain, loneliness, and science-backed hopelessness.

I can't habituate, and I can't find a single ray of light when it comes to my physical issues (T and floaters). They ate up all of my previous interests, I immediately gave up on life when they started and delved deeply into videogames; So when you guys say "go and do things you used to enjoy," I haven't really enjoyed anything at all in a long time. I HAVE NO LIFE TO GET BACK TO. I would need to build an entire life while being continuously, relentlessly tortured. I have nothing and nobody waiting for me at the finish line to congratulate me. Why should I go on, knowing I will only experience suffering?

It's just so stupid - so many people live so well with these conditions, but for me it's just too much. I've never hurt a soul in my life, but I'm life's punching bag - socially, mentally, and physically. When I try to go outside or interact with people at all, I'm always completely distracted from what's actually going on due to this crap.

I really need some help here. I can't manage or cope with this through therapy or medication (I've tried basically everything over the course of 8 years). Psychology and psychiatry have failed me, so don't tell me to seek them. At 20, I'm too young to feel like death is right around the corner every single second of every single day.

I need real treatments. I'm in a very dark place right now. I feel like my parents are gradually, reluctantly realizing that I'll never get better. They've dropped over 40k on treatments for my mental state in the past year alone. They care about me so much, but there's NOTHING they can do for my physical conditions (the source of most of my pain). NOTHING AT ALL. It hurts so much.

They talk to me less and less, and when I tell them about my pain when we talk, they become sullen and hopeless, so I just try to not talk anymore, because this is all I can think about.

My own parents feel the same kind of pain for me as I should feel for a dying elderly relative.

I'm going to spend my 21st birthday, like the past six birthdays before it, in a lonely suicidal hole. Not sure how much longer I can hold out. I don't want to die, but I will never be able to live like this, that much is clear to me now. There has to be some sort of study I missed, some treatment that showed promise, some audiologist out there who actually cares. Where's the interest in this condition?

Why is there no mainstream medical support for us? No news, no messages of hope from major research institutions, no efforts to understand what causes this condition to be brought about; What we get is just, silence. No interest in our suffering. Doctors just see our pain, tell us to live with the ceaseless agony, and shove us out of their office so they don't have to deal with the mental breakdown that is soon to follow.

 

I would suggest going out and getting hearing aids with maskers asap. Perhaps the maskers can calm you down. Right now I am taking a drug called Lamictal and it has helped with depression about the tinnitus quite a bit but I still like my hearing aids with maskers now and then but need them a lot less. Maybe you could ask your doctor about it. I know Lamictal has to be titrated and people have to watch out for a rash. It hasn't numbed me like the SSRI's did in the past. It also lowered some of my tinnitus which was due to stress and long term klonopin use I think. The problem is with a medication, its kind of like a gamble and it reacts differently to different people. I hope you can find some help soon. I feel for you and hope you can get better soon.

 

Hearing aids when there's no hearing loss? -15db is NOT hearing loss. Not even mild.
Maybe a bit of masking would help but hearing aids are a really bad idea, as getting amplified auditory input is just asking for trouble in the long term.
It would also appear to me that the op needs some lifestyle changes more than he/she needs drugs. Like some sort of social life and things to keep occupied.
Also, dropping money on psychiatrists/psychologists/audiologists is good and all, but a constantly worsening tinnitus at that age might be linked to an autoimmune issue or some degenerative nerve problem. Maybe @Vaba should investigate this (if he/she hasn't already)?

 

I have just read your story and please don't give up on life as I know you can beat this and become confident again and get your self worth back and cope better with your tinnitus and learn to love life again.

You have a long way to go but baby steps and one day at a time .

First thing is to start a diary and aim to have a positive moment or longer and write it down.
Try get out for a few minutes a day and write it down.
Talk to some one face to face or on the phone and write it down.
Have a nice warm drink and a biscuits and write it down.
At the end of the day put a face in the corner of the page circle with a happy face,sad face or a ok face..

Each day do this and build up little positives and on a good day go on a bus ride or a coffee in a cafe and say hi and talk to some one.
Or go down the town and have a nice treat and so on.
Wright it in your diary and again put a face in the corner of the page.

Keep trying to build up each day or week by adding positive moments ,minutes or hours and keep the diary going building up positive things .
Keep this going and see positive improvements begin to build up.

Welcome pm me anytime.

Lots of love glynis

 

I'd love to, but I can't get a single doctor to listen to me; Otolaryngologist, Audiologist, Otoneurologist, psychologist, psychiatrist, my GP, even my insurance company's personal case nurse, The instant I mention it's T that's bothering me they just lose all interest in actually helping me and jump to vomiting up recycled phrases: "you'll have to get used to it" "you'll be ok" and my favorite "I have it too." No helpful suggestions, no curiosity about my pain, nothing. The T tears right through masking with the weird physical ear sensations. I *feel* like I have a cotton ball in my left cochlea all the time.

I had a lot of infections as a kid too, but they resulted in no damage. My father also has an autoimmune disorder. I keep getting "transient T" (the REALLY LOUD but temporary ringing that sometimes signals hair cell death) around 3 times a week.

 

I HATE this shit! It's like mentioning you are in pain and they say "O' yea I have it too, my leg hurts from time to time". Why do people think it's comparable?

 

@Vaba
I am so sorry to read your story. I feel your pain and am saddened to hear such depressed state of mind from a young person. Tell me about what junks some of the trained doctors can say to a desperate T sufferer. My ENT, while I was so stressed and had suicidal tendency, said not just 'you have to live with it for life', but 'the only thing I can stop your ringing is to shoot you'. Go figure!

I am with Glynis about building up positivity in your life. It is one baby step at a time in order to slowly transform your outlook towards life. I will add to her suggestion the need to go out to perhaps help out the less fortunate, the handicapped children, the homeless or lonely seniors. Any form of volunteering work to help those with worst lots in life will hopefully help you move towards a more positive and meaningful life. A fulfilling life doesn't depend on what others can do for self but what the self can give to others. The purpose of life is something you have to find in order to motivate you to soldier on with you young but challenging life.

I can only encourage you with what other young people have done when encountering very tough challenges in life. In my success story, I mention two ladies who serve as the guiding lights to help me climb the T mountain. There is the young Zoe Cartwright who turned completely deaf at 15 and then developed %(^*&@ loud and unmaskable T (because she is deaf and can't hear any outside sound except her loud incessant T). Yet with all these challenges, she decides not to cave in but to choose a positive path in life towards achieving her dreams and goals in life. Against all odds she made it to university years later and even made a short T film to bring awareness to others about what it is like living with unmaskable T. Here is her film on youtube which is titled 7.24.52.10 which means by the time of her film she had suffered her loud, unmaskable T 7/24, 52 weeks a year for 10 years. Amazing she says she loves her life and treat her T as a slice of her life. I provided link to her follow-up comments to her film in my success story:

Tinnitus Short Film - 24.7.52.10.

Then there is the amazing story of a young lady Melody Gardot who besides severe T & H, received massive damage to her body when a SUV hit her while biking. She had to lay in hospital for a year with incredible pain and complete immobiltiy, not to say her T & H which requires her to always wear earplugs all the time. Even when recovered she has to limp around with a cane. People would think she should cave in to depression and negativity with all these challenges. But with positivity she focused herself on learning a new skill of playing guitar while lying on bed. She turns herself into an amazing jazz singer with a booming career doing shows all over the world. In my story I provide a link where she even performed her wonderful singing for David Letterman (who has bad T himself 7/24). Positivity has helped her scale these mountains in her life.

Here is more detail about these ladies in my success story. I also list many helpful strategies to help myself turn around from my suffering:

https://www.tinnitustalk.com/threads/from-darkness-to-light-how-i-recovered-from-tinnitus-hyperacusis.3148/

I used these ladies a lot as my guiding lights that, even with severe T & H, life is not lost if we don't cave in, but instead turn towards positivity to live our life. I turn my life around after living through 'hell' initially with an ultra high pitch dog whistle T and severe, piercingly hurtful hyperacusis. I also had suffered decades of anxiety and panic disorder, having also suffered PTSD after witnessing and experiencing the tragic accident death of my 5-year old son. All these sufferings plus the arrival of the dreaded T & H to cause me untold suffering, both physical and mental. I hope you find some solace to know that if we want to turn around our life even after much tragedy and suffering, it is possible.

Besides, there are treatment drugs being tested right now such as AM-101, OTO-311, RL-81, SF0034. So the medical/pharmaceutical world is catching up on tinnitus with these new drugs on the horizon. Check out the Treatment section on TT for more detail. You are young and hopefully these drugs plus more to come will give you hope that you don't have to suffer from T all your life. Turn to God for help if you need His love & grace to fortify you to help you through these challenges. Take good care & God bless.

 

People who "live well" with tinnitus, generally, are not coming at it from the perspective of being poly-drugged from a young age and without any social or romantic support.

Put differently, your tinnitus sounds like it is just one thing in a whole messy stew of things you feel bad about. It's also probably the one you have the least control over, which might make it a convenient focal point.

Probably what you should do is ignore the tinnitus and visual problems as best you can, and try to deal with all your other issues.

The "transient T" you describe is nothing abnormal. Many/most people without any significant tinnitus experience this from time to time.

 

Firstly, God doesn't exist. I reached that conclusion when I was 13. Second, I can't live life disabled. People like Melody struggled and writhed in agony only to turn their lives around for the "better," but "better" is all completely relative. She now functions, but still suffers with horrific, screeching T. You can adjust your entire life to live around something like a congenital heart defect, but you'll never be able to do many things, like safely run a marathon. You'll never have control over it. You just can't live a the most enjoyable life possible while being tortured constantly.

I'm well acquainted with the Treatment and Research sections. I've read almost every single thread in there; they are all universally disappointing, and development in this field is incredibly slow due to the lack of interest. We all know deep in the back of our minds that those treatments aren't going to work and that the odds are highly against us when it comes to getting an effective treatment within a reasonable amount of time. I don't understand why everyone holds up false hope for a better future, when tinnitus almost universally only gets worse, since it is due to irreversible damage to the auditory/nervous system, which can get worse over time, but does not naturally heal.

It's impossible to ignore T, and ignoring my giant eye floaters on the road has almost gotten me killed twice. I need to be on a state of high alert all the time to stay alive.

How am I supposed to deal with my other problems when I'm in ceaseless agony? People don't want to even make eye contact with me anymore because of the pain they see. I tried to go out and get a job at a supermarket but I botched even handing in the resume due to the distractions flying around in my head.

I have no reason to go out and improve my life. No matter what I do I'm always going to be in pain.

 

T does not naturally heal, but if you can take your focus off of it, remove the anxiety, negative thoughts, etc you can manage to live with it and it does get a lot quieter than where you are now. I'm not going to lie, loud T sucks and I have it some days, but I just keep going. There is nothing I can do about it. No doctor is going to be able to help you with this one. The people that say they have it to, they were once where you are at, they have just learned to live with it. Maybe focusing your life on something other than the sound can help you get better.

When it was crazy loud, I was on clonazepam. It not only made it quieter, but it made me not care. Working out for an hour gives me the same feeling. A year and a half ago I had T sounding like a jet engine and today its either not noticeable on some days or just loud others, but I just keep going. My outlook has totally changed. I now see T as my baseline and try not to let it bother me. You can't see it as torture, or you won't get better. I am back to leading as happy a life as I can with T and my comfort lies in the days that I have soft T. Its almost like a vacation compared to the loud T days.

My hearing is in the toilet and I'm losing my ability to mask. You still have that ability. You are one up on me and I can tell you that you can still lead a happy life with T if you can get your emotions under control.

T also doesn't necessarily get worst over time. It will get worst and then your brain will compensate again and quiet it back down. If your T is crazy loud, I can tell you that odds are you won't have to live with it like that forever, but the longer you stress out over it and give it thought, the longer it stays louder.

Talk to me when you have 50-120db loss in all frequencies and I can tell you how loud it can get. I can also tell you how quiet it can get with the same l0sses. Everyone's T is different, but you have a lot better shot at getting better than me and I am already better.

 

You know...I have something that really might make you optimistic to watch! I forgot about this...it is for your eye floaters and should really give you hope! Of course I am no doctor but this is worth checking into!! This guy is using a YAG laser on eye floaters:

Check this video out:

Treating EYE FLOATERS with a YAG laser

 

Would you mind listing all the meds you have tried? I might be able to suggest a few you haven't taken that you could talk to your doctor about.

 

I've tried ativan, adderall, some antipsychotic medication whose name escapes me, venlafaxine, sertraline, wellbutrin, citalopram, prozac, cymbalta, and a few other ssris that I forget about.

Basically I've tried a little bit of everything, but since my main problems are purely physical, they have had no effect. Psych meds are off the table. I also can't get a xanax script, which I've heard helps with T, because I have suicidal depression.

Also, I've delved very deeply into research about floaters. I discovered that my floaters are so close to my retina that laser is impossible without burning holes in my visual field. The only option is a highly invasive vitrectomy.

 

When I had crazy loud T, the only thing that helped was Clonazepam, which is basically Xanax. It helped me get over the initial months. My T was made way worst by anxiety though. All I can say is that if this is the case for you it will help. Eventually I got off them though, but only after I got better.

 

Sounds like you haven't tried anti-convulsants. You might want to look into them. In fact some people's tinnitus has been lowered by them (though not all). Lamictal (Lamotrigine) is a mood stabilizer that has an anti-depressant effect. You have to titrate slowly (due to a rash - doc could tell you more about it) if you get on it though to you get to a therapeutic dose. It hasn't numbed me out and has a lot of good ratings at drugs.com. Can you ask your doctor about that one? I don't know if it would do anything for your tinnitus but with mine it dropped the volume about 30% (at least for now) and has helped a lot with depression. I may need to get on something else but so far it has really helped.

 

My insurance company is great (BCBS Federal Employee) and assigned a nurse to my case. They'll probably help me try basically anything I ask them to at this point. I am just skeptical of mood altering drugs; how can I be sure that lamotrigine isn't just changing your reaction to T, but not it's actual volume? Studies also show it is not commonly effective for T and the psychoactive drugs I've tried thus far have all proved ineffective.

By the way, I can sniff placebos out a mile away. I'm very in tune with my body. I've never gotten better just by thinking I am, so any prospective treatments have to be medically efficacious. If you really think it works, I could try it.

It really doesnt make any sense to me that a 15db 4k loss could cause this mayhem in my head by itself. Many people get up to like, 30db threshold of hearing before they even start to notice having problems. I am also trying to figure out if my allergies, postural problems, neck pain, weird jaw behavior, and 4 wisdom teeth (not impacted, just not removed) could contribute to my T. Also when I tense my left semispinalis capitis, splenius capitus, and sternocleidomastoid, my T SCREAMS in my left ear. But if I do the same to my right, nothing happens.

 

I don't think tinnitus loudness is determined by the level of hearing loss, although more hearing loss can make it more upfront. There hasn't been a coloration to loudness and db loss an any studies I've seen.

It is interesting you mention eye floaters, I have seen several other members talk about this, seems to have a relationship to tinnitus for some people. Have any of your doctors mentioned anything about these two occurring together?

 

Your teeth and jaw pain could be contributing to your tinnitus. You may want to go to a dentist that is familiar with TMJ and get checked out. From what I hear they can make you a splint or do other things to help. I am actually trying something out with a modified mouth guard that I got from a store. My goal is to prevent my teeth from pressing down on back molars and wisdom teeth. My tinnitus is louder where I a missing a molar and the wisdom tooth is half gone. The lamotrigine may not lower the tinnitus in your case. What happened in my case was that I would take klonopin to lower the tinnitus which it did for a while and then it slowly got louder and remained that way for maybe 3 years until I started taking lamotrigine. It took away most of that ringing and seem to make the klonopin lower the tinnitus a little bit again but I think mostly the lamotrigine did it. Trileptal is another anti convulsant you could look into that I heard has helped some but its really a gamble, (don't think it has a anti-depressant like effect like lamictal but I heard some people can use it off label as a mood stabilizer). With medicine sometimes you don't know how your body it is going to react.

 

There is no connection between the two. People who have tinnitus and comorbid anxiety may become hyper-focused on their senses and notice little things they never noticed before, like floaters. I'd be willing to bet that the floaters people mention are in fact not very visually intrusive, and are simply an object of obsession, unlike mine.

Want to know something cool?

Everyone has floaters. They are the by-product of an aging vitreous humor: the jelly-like substance in your eyes that is composed primarily of collagen, vitamins, and water (98% or more water). As you age, pockets of the jelly sag, the collagen strands fall and lose structure, and the vitreous liquefies. For the VAST majority of people, this results in the little clear squiggly lines that I USED to know as floaters. They are small enough to fade out of your conscious mind.

When you are nearsighted (can't see far away objects) since your eyeball is longer, like a football instead of a sphere, the vitreous humor needs to fill additional space and is S T R E T C H E D out. New vitreous humor is sadly not created to fill the space as your eyeball gets longer. You have basically the same amount of it from birth to death. This causes a faster breakdown in the vitreous humor, more pockets of liquefaction, and more loose strands of collagen. In fact, since every single strand of collagen in the myopic eye is being stretched and stressed to fill the increased space in the eye, entire clumps of collagen can lose structure at once instead of individual strands. These are generally still not intrusive, because most of them form in the midsection of the eye, which is the most voluminous.

The absolute worst possible type of floater (and the ONLY floater I have that bothers me, I have many) is the premacular bursa floater. The premacular bursa is the name of the volume of vitreous jelly that is directly in front of your macula (the part of the retina responsible for central vision). Because of the proximity to the retina, these floaters, which are often microscopic in size, are MAGNIFIED to look thousands of times larger than they actually are, and never drop completely out of vision. This type of floater is what I consider to be the "perfect storm" floater. It can only occur under very specific conditions - you must be young (typically teenage), high range myopic (-3 or above diopters), and VERY unlucky.

It is by far the most visually intrusive form of floater possible. It has nearly gotten me killed while driving not once, but twice, because when I check my left side mirror and then look up at the road it (and its 4 tentacles) LAUNCH into my central vision, completely distracting me and warping objects on the road. When I have to merge left, I break into a cold sweat now, because I know what's coming...

I know dozens of shortsighted people who do not experience giant premacular floaters. I just got unlucky. Luck seems to be the most important factor.

It seems that poor luck also brought about my T. There is little physiological cause for it to appear in me - 100% speech recognition in masked environments, great audiogram (high frequencies included), perfect OAE and ABR... Doctors are baffled.

I used to wear a tailor-made mouthguard due to grinding (bruxism). I melted it while trying to clean it, I didn't know they were made of cheap plastic!

I'm not sure, I was taking psych. meds so I was in a haze, but I think my T was quieter at this time.

How can I be sure that a dentist who specializes in TMJD won't just try to sell me a splint, even though I don't need it, just so he can make a quick (couple thousand) bucks?

 

I have thousands of spots and 2 big floaters. Unfair.

http://floatertalk.yuku.com/topic/4...loaters-will-disappear-after-PVD#.Vx7a9aMrK1s

 

Knowledge is power. And it's really weird that you were 15. That was the exact age I was when I got my giant premacular bursa floater, and I was probably about as myopic as you around that time. Maybe there's something for the field of ophthalmology to research here.

I think that simulations of the condition are a great idea. Since most people have mild floaters, they don't seem to understand just how visually disturbing (and dangerous) they can become. A visual aid would help us few sufferers in helping other people visualize the condition. Just like with floaters, tinnitus is a relative condition too. You can have mild tinnitus and mild floaters your whole life and just be fine with it, because it's not too bad. We need a way to show people just how bad it can get, to prove that we're worthy of helping.

I've been looking around for tinnitus activism campaigns and there's just nothing worthwhile to contribute to. I can't donate to organizations like the ATA because there's a possibility that, as another user put it, they just give some audiology student $50k to do a study on magnesium and T so he can get his Ph.D.

 

I don't know if this will help but I got a Dentek "Professional-Fit Mouthguard" at Wal-Mart for under 20 dollars. It was easy to form and of course I modified mine. I usually "clean it" with hydrogen peroxide and rinse it with water. I don't know if that is the best way to do it though. So far it seems okay and when I am anxious or tense it seems like I tend to clench my teeth more so I'll see how this goes.

 

Do you get loads of small dots? I have thousands of small floaters and it is quite worrying.

 

The floaters are ridiculously annoying and sometimes dangerous, but T is definitely worse. It's always there... grinding my thoughts into dust, keeping me on edge...

 

Wasn't there a member here who had succes with some sort of surgery?

 

@Vaba Thanks, very informative post. Can't say I've really experienced floaters at all, although I had eye issues when I was younger (had eye surgery where they cut part of the muscle) and have a lenticular astigmatism.
Maybe I should exit this thread before I start seeing floaters!

Did you have this before your trial with trobalt and other various drugs?

 

I had them before, but trobalt could've made them worse.

 

The normal ones are really hard to notice unless you're searching for them, you'll be fine, haha!

And I wish that I knew less about them. I think if I was dumb and believed the floaters were "angels" and my T was God messaging me (I've seen both before) I'd be a lot happier.