I’m in Agony

[Sandman]

Hello everyone, I'm 32 and I'm from Europe. I'd like to share my story but as English is not my native language I'd like to apology for all the grammar mistakes (I know there is a lot).

Also please keep in mind that my story is very depressing so please do skip it if you don't feel like reading this sort of stuff.

I have developed severe tinnitus on February 7th after a very loud indoor rock concert. But I'm 100% certain that the concert wasn't the only factor. The second one was permanent stress and anxiety I was living in the last few years of my life. The 2 weeks before concert was the worst period in my life in regard to stress at work and in home. I had serious problems with sleeping in two nights before concert. The show itself on the other hand was also VERY LOUD and long. After it ended my ears rang but I wasn't too concerned because it always happened after loud live music. When I got back home and tried to sleep I first noticed that something was wrong. My right ear was not only screaming with high pitched sound but also there were some electrical short beeps/zaps firing all the time. The next morning hearing on that ear was still muffled and nothing changed with high pitched sound and electric zapping. I decided to wait a little more and see if it fades. It did not. After two days I visited ENT and did audiogram which showed no hearing loss. I was prescribed Encorton Forte (later Hydroxyzine for sleep and Betaserc) and said to wait. The screaming sound was nightmare, I couldn't sleep, work and concentrate on anything. I could hear it outside all the time. I then knew that it probably will stay that way and my life was destroyed.

I always protected my ears (besides damn concerts) and had very delicate hearing. I enjoyed quiet relaxing music before bed time and needed complete silence to sleep properly. It was all taken from me so I was devastated and in genuine shock and disbelief. I literally felt like if someone close to me passed away, those were the same emotions. When I was waking in the night I felt like I'm waking into the nightmare but that was my reality. I cried first time in my adult life and suicidal thoughts emerged on the horizon. After two weeks I was administered to hospital where I was told I was to late for treatment but despite it I got steroids in tablets. Weeks passed by and the screaming high pitched sound changed to strong electrical sizzling in the back of my head which was more bearable but also harder to mask. In that time I was glued to this wonderful forum and I had read almost all coping strategies and success stories. It had helped me overcome massive anxiety and gave me some hope for better future and I would like to thank you all of you for that. You are doing a great job and please keep at it Things were very slowly getting better despite of this nasty tinnitus which now I know was moderate.

But this was then..

Unfortunately for me I found information about oxygen therapy in pressure chamber and that it can help with tinnitus. So I went for a test procedure in one person capsule few days ago and as it turned out it was very noisy. I went through the whole procedure without earplugs and the hissing sound made my tinnitus a lot worse. And by worse I mean catastrophically worse. My bad ear is now making constant, loud, high pitched laser beam sound cutting through any sound and that is on top of strong electrical sizzle in the brain. My left ear also has now regular (but much lower) tinnitus. Sometimes all sounds resonate with each other in my whole head it is so bad that I'm dizzy and feel sick. It looks like my ear/brain or auditory cortex is destroyed for good. It's hell on earth. I can't sleep longer than an hour/two a night, I can't function, I can't think. I feel sick all the time and I mainly lay in bed. I perceive this feeling of severe tinnitus as immense pain, it destroys me and I see death as only solution. I simply cracked like a match. And I don't have problem with it because my life has already ended. What has left is immense suffering and death is the holy grail of the tinnitus – a fabled cure. I've accepted it and it has calmed me down.

But the real problem are my parents. I don't have wife and kids but my parents are the most kind hearted and good people that walked the earth. I am the only child and they always loved me above anything. If I go they won't survive this. They are already terrified and in great suffering just by watching me struggling with every single day. After accepting my suicide I understood that I cannot do it to them. And this conflict is my present source of MASSIVE anxiety, fear and even my first panic attacks. Two days ago it was so bad that my body started shaking. First my cheek than legs and arms. I almost ended up on ER. I took 50mg of Hydroxyzine and after 30 minutes I was better.

Yesterday I met with psychiatrist and of course he downplayed the role of tinnitus in all this situation. He said that it is the cause of my current nervous breakdown but the problem lays elsewhere and in my history of anxiety disorder. Maybe he is right but I know that right now it's the massive tinnitus that destroys me alive. I was prescribed Xanax at very low dose and Setaloft (Setraline). The low dose of Xanax did nothing and I barely slept 1,5h today. So the doctor told me to up the dosage and see if I will be able to sleep. We'll see.

So that is my current situation. I now know how the hell looks like. I feel like mortally wounded animal which should be put to sleep. I'd even like that to happen. I'd suffer a lot less if I knew that the end is somewere on the horizon.

I'm sorry that I wrote all this but I had to do something to vent emotions, I'm literally going insane when I'm not doing something what takes my mind off tinnitus.

Tomorrow I'm visiting private clinic specializing in "curing" tinnitus through some neuromodulation brain modeling. I know that this is myth and not working but there is one chance in a million that it will work as placebo or something.

So that's me – "Broken, beat and scarred" as one song states.

Also I would like to tell you all fellow sufferers with mild to moderate T – please look out for your ears at all times. The tinnitus can and probably will get A LOT worse if you abuse you hearing even once and even in earplugs. And when it's bad it will destroy you no matter how strong you are. It won't be frustrating or annoying - it will be crippling and paralyzing to the state of total mental decay. And in the meantime feel happy that you have good days even if it's not often. Make the most of it.

I will try to update my situation from time to time. And believe me if I will survive this crisis anyone will be able to survive anything tinnitus related. Take care!


ps.
I forgot about H – yes I have it good but at least it's manageable..

 

[Sam Bridge]

Ah man , i got my t from a culimination of many loud concerts as well. As you are in early stages theres a good chance it may settle back to that sizzle/ hum which is much easier to handle.

Metallica concerts are loud i know, i have been to a few.

 

[glynis]

Ask your doctor about Nortryptaline .
For depression,anxiety,helps sleep and can help calm tinnitus down for some people if signals misfire .
I had it in my head and high pitch ringing and a deep drone and the med gave me my life back as stopped the deep drone and head tinnitus and took the edge off my high pitch ringing.


Dont give up !!!
Vestibular migraines and other inner ear problems can be helped with medication so keep pushing for answers and finding a medication to help you and their will be one so keep fighting....lots of love glynis

 

[Sandman]

Thank you glynis for your support. I apologize for not replying but my state at the time was horrible, I couldn't do anything and I couldn't think straight. The only good news is that I've somehow survived my onset of catastrophic ear and brain T and I am better now.

I started this thread on March 14th and it turned out that I was halfway through to my total breakdown. On March 17th, after total of 7 sleepless nights and EXTREME anxiety and fear for 24/7 I developed tremors of my entire body and so ended up on psychiatric ward in hospital. My state was so bad that I had difficulty putting my signature on papers because of tremors. That day the T would have killed me if I didn't get proper help so I can tell you right now that suicide and severe T is REALLY a thing.

Anyway in hospital I got proper evaluation by very competent doctor. She offered me to stay in hospital or to continue therapy in home which she believed was better for me as I was not home alone but with my parents (which I chose). But most importantly I was given medication that took the edge off. It was Lorazepam 1mg 3 times a day (every 8 hours), Trazadone for sleep and I was said to continue my treatment with Sertraline. And yes, I know all the dangers and side effects of those drugs. I've read it all and I know that it was huge dose of Lorazepam but in this situation it literally saved my life. I immediately felt better and slept through entire night for the first time in weeks. As it turned out Lorazepam hugely suppressed my Tinnitus, and by that I mean by 70-80%. One night it even diminished to very gentle crickets - it was like miracle. I stayed on this dosage for few days (slept through all nights) and then was told to change it to 0,5mg every 8 hours. When I did that my severe T returned but I could stand it this time. My sleep also got worse but I could get 4-5 hours which was sufficient. Knowing dangers of benzo I decided to get off it as soon as possible. I was further reducing dosage but the first try to stop ended up with severe anxiety, back of some tremors, super loud T and extreme H. The second try on the other hand ended with some mild panic attack and heart palpitations so I am on 0,5-1mg to this day, I take it mainly for sleep.

Nowadays although I'm kind of better my T and H are torturing me with vengeance. My life has stopped, I can barely work and ended all social contacts. I don't know how I'm supposed to live like that. I take supplements and soon I'm starting neuromodulation therapy so I hope to get some relief.

I also plan to get off Sertraline as I feel it doesn't make sense to take it and I have many side effects from it. I am already lowering my dosage.

So that's me now. I'm alive but miserable. Anyway it's progress right?

ps.
To make things worse I was recently experiencing some mild ear pain and my ENT diagnosed me with partially refracted eardrum.. I should do valsava maneuver 3 times a day and try to push it out but I don't know if it's good idea.. Also I'm not able to do it in affected ear (the air can't get through), should I try to push air harder?

 

[glynis]

@Sandman ,
Im so glad you got the help you needed in hospital and have medication to take.
Try not rush to much to get off the medication as you have been through so much.
You have reduced your larozapam so thats a good start and ok to have the odd extra one at stressful times and help sleep.
AD meds might be best stay on them a few months if still feeling down so you have the better chance of no relaps.
If your tinnitus ends up being long term then a tiny pill might help keep your chin up till your more stronger in yourself and improved confidence and not cause insomnia reducing them.
Go with how you feel and with your doctors guidance.

Well done and chin up...lots of love glynis

 

[Kibakiru]

I understand where you're coming from. I'm 16 and developed incredibly loud two-toned tinnitus some time in February-March (on top of pulsatile tinnitus, which I've had since January 28th). Imagine a dog-whistle, now times that by 10 and throw a dentist drill at maximum speed into the mix and you'd have something similar to the loudest noise in my head. The second is my lower tone, a rumbling static which is still quite loud on its own. And then the cherry on top is the wind in my ear 24/7. Also sprinkle on a little sensitivity to sound to finish the cake off.

In the beginning, I couldn't do anything. I became a shut-in and accepted that I'd probably commit suicide at some point. I ended up holding off on going to college as an undergraduate because the idea of sitting in a lecture hall with these noises was torture.

I had a GP tell me there wasn't a noise in my head (because he's been in my head before) because my symptoms made no sense and that I was just attention seeking.

For the longer story, refer to my post in this thread: https://www.tinnitustalk.com/threads/help-me-please-tinnitus-is-breaking-me.20497/#post-237182. I've been told it's helped a few people. I can only hope you'd find something close to comfort in it as well~

But long story short, I'm still alive and am habituated. I still have my set-backs (who doesn't?) but I take each day as it comes. I used to ask myself "What if?" but now I only ask myself "What now?".

I realise now that problems are inevitable, but misery is a choice.

I really hope things get better for you. Good luck!

 

[PeterParker]

I really think stress is a big factor in aggravating and maintaining T.

The T is a sensory stimulus, yes. Not even necessarily a negative one, though yes it's perceived that way, obviously, by most everyone.

You really need a kind of 'zen' attitude towards it though, which is difficult, and an ongoing challenge. I recommend the book "Back in Control" that I saw someone else here mention. It's about a doctor talking about his own adventures with chronic pain relief. He's talking about people who had 7-8 serious back surgeries, etc ... serious accidents that give them daily pain with pretty much no escape. Pretty similar to tinnitus - he even mentions tinnitus as well as one of his own symptoms.

I haven't quite finished it yet, but the main thrust of the book is that --- your emotional/ stress response to the stimulus --- tinnitus or pain --- only magnifies and solidifies the neural circuits causing that stimulus. There are real fMRI scientific studies that show that after 3-6 months, most chronic pain (the book is mostly about pain) ... is almost localized entirely in the emotional center of the brain, no longer the traditional physical pain center. That doesn't mean it "isn't real" or is imagined ... no -- but it's almost a rewiring.

It seems like bogus pseudo-science that your own stress/ emotional response can have physical consquences, but it's really true in this case.

He recommends a few things--

First, release the anger, blame game, what ifs, forgive yourself and/ or whatever situation caused this mess. Often helps to find a state of 'play' as well to counteract this.

He recommends a daily 'stream of consciousness' exercise ... you simply write down your thoughts, positive or negative, on a sheet of paper in the morning or evening. If you're dwelling in negativity, you simply write them down, acknowledge the thoughts, realize that YOU aren't your thoughts, they are just things that pop up, they're often irrational and "catastrophizing" (aka everything is doom and the end of days) ... write them down, acknowledge them, accept that they exist, separate yourself from them, then toss the paper at the end of the exercise. You aren't "keeping" anything -- it's supposed to be a completely free exercise, so trashing it immediately afterwards is necessary.

Also practice meditation, even baby meditations throughout the day. Relax your shoulders, focus on your breathing, try to calm down, feel the thoughts and sensations, accept them, but don't dwell on them.

I think this will help ---

Personally I think the best thing for your mental health --- though I'm not a doctor --- is that your really need to get some structure and "distraction" back in your life. Sitting in your apartment, just thinking about T all day -- dwelling in negative emotions -- well that's probably the worst thing for it. Get distracted. Get back to some part time work if possible, hang with friends, pick up some hobbies ... hell even play video games if that takes your mind off some the "bullshit" here. Just 'accept' reality and think about how in 6 months' time, you might be feeling a world better than you are right now. Give it 6 months of 'low stress' and see how it goes. Improvement is possible. Habituation is possible.

 

[Sandman]

Imagine a dog-whistle, now times that by 10 and throw a dentist drill at maximum speed into the mix and you'd have something similar to the loudest noise in my head. The second is my lower tone, a rumbling static which is still quite loud on its own. And then the cherry on top is the wind in my ear 24/7. Also sprinkle on a little sensitivity to sound to finish the cake off.

Wow it indeed sounds pretty severe. I have super loud dog whistle and dentist drill but it comes not only from my ears but also from brain. It's not only a sound but a feeling, very similar to pain. It's incredible that you got better so quickly, how do you manage to sleep?

 

[Kibakiru]

Wow it indeed sounds pretty severe. I have super loud dog whistle and dentist drill but it comes not only from my ears but also from brain. It's not only a sound but a feeling, very similar to pain. It's incredible that you got better so quickly, how do you manage to sleep?

I'm sorry that you have to deal with such a terrible sound.

Sleeping was hard in the beginning. I had to move downstairs to sleep because I couldn't stand being in my bedroom, which was too small and quiet, so the noise was louder to me. I still sleep on the couch.

I've never used any pills to help me sleep. I was always refused any aid because my GP and whoever else doesn't really think I need it (again, they're convinced I'm exaggerating, attention seeking, or something else) and were concerned I'd just abuse it anyhow (being young).

So, without any aid, I had no real choice but to get used to sleeping with it. I don't know how to describe it other than that my tinnitus becomes background noise to me, much like the drone of the air conditioner or the washing machine. I always have the television on so my brain has something to focus on and I never lay with my ear against the pillow, since that amplifies it. I don't like masking when it comes to sound generators but I've heard they work well for others (playing nature sounds on your phone, pink/white/brown/blue/etc noise, etc). My tinnitus generally gets louder when there's other noise, so I have to keep the tv lower than my tinnitus so that my brain has to focus harder.

Though I can sleep in 'silence' as well, I choose not too. Granted, I sometimes get restless nights and wake up earlier than usual, but it's not often.

I also take random naps during the day (when I can afford too) because day-time is louder than night, so I can sleep easier. It helps me catch up on sleep if I barely got any. Cat napping.

In general though, sleeping stopped being a problem for me when tinnitus stopped being a threat.

 

[MikeL1972]

Hi Sandman,

Sorry to learn you are going through this.

Your best solution is habituation. It is not an easy road, but a road you must take nevertheless to get control and sanity back into your life. Believe me, we have all been there. I too had cowardly thoughts at the outset, but then after discovering this site and reading the countless stories, I took back control.

Sleep. I cannot overstate the importance of sleep. Sleep is healing for the body, mind and soul. For the past few weeks, I have also been having sleeping difficulties, but not due to tinnitus; my case is more due to a mid-life crisis (I will be turning 45 in a couple of weeks) -- anxiety basically.

Just keep looking on the bright side and you will be fine... every day will get easier and easier for you!

 

[Fernando81]

I am sorry to hear that you are going through this situation. Give it a little time and you will be much better.
At the beginning, i felt the same. I was devastated, sad, anxious and hopeless.
A huge hug for you!
God bless you!

 

[Jomo]

the beginning was the worst....i didnt know how i was going to be able to deal with it for the rest of my life. As time went on I adapted and my posts here can prove my battle scars. I will just tell you that this past weekend i went to a restaurant filled with at least 100 people (making a ton of noise) and had music playing at 90 - 95 decibels for about 2 hours easy. I wore my custom fitted musician ear plugs with the 15 db reduction and enjoyed the night singing at the top of my lungs, drinking whine, eating anything i want (family style party), and just relaxing. I left the restaurant without any issues and went home with my fiance and watched a movie and then got tired and fell asleep with some masking sounds and slept till 12:30 the next morning. In the beginning if you were to tell me that I would still be able to do this I wouldn't believe you. So look at my previous posts if you want some tips that have helped me. I am telling you things will get better but of course use caution and get some good custom fitted musician*** ear plugs. Best of luck man and hang in there. It does take time.