Chronic Pain and Stress Opened the Floodgates to Severe Tinnitus Hell

Hi all,

Been lurking for over 6 months and strongly debating whether or not to post my story as a part of me didn't want to be an online 'scare monger'. Be warned however that my story is not for the faint of heart so please stop reading if you're anxious. However if people like me hide our stories awareness of how we ended up here is diminished and who knows my story might help others avoid a similar disaster.

To cut a very long story short I was rear ended in a car crash by a woman who was texting rather than noticing i was effectively parked at the traffic lights. The impact - she didn't brake at all - left me with chronic neck and shoulder pain from nerve damage. Unable to work i slipped in to depression which i didn't realise as i soldiered gamely on with the pain. First mistake, don't soldier on with anything. Work out what's wrong. Do not suffer in silence. If you do, it may get to the point where you're beyond help.

Being holed up alone all day and in pain became my new normal led to the worst year of my life. Or so i thought until almost a year to the day after the accident i awoke at 3am to a loud screaming tone in my left era. Going from complete silence (never even had temporary or fleeing T in my life) to that overnight sent my whole system in to deep trauma and shock and after nearly two weeks of constant trembling, not sleeping, and the whole merry go round of wax removal, dentist appointments and clueless doctors who all fobbed me off with the whole get on with your life shctick, i put my faith in a scammer hypnotist, who i went to in complete desperation and with my mental health spiraling out of control.

Second huge mistake. She happily took my money and again completely overlooked the fact that i was showing classic signs of PTSD and in very grave danger of topping myself. The hypnotism that was strongly centred around 'you creating everything that happens in your life' and coupled with a bad reaction to Zopilcone whilst guzzling strong CBD oil (Third big mistake) was like petrol on the bonfire of my sanity and tipped me in to a total psychotic breakdown. Cue every 'bad thing' i did in my life being replayed to me like an insane movie with a screaming T soundtrack night after night while a booming mocking voice alerted me to the fact that i could never escape my terrible self induced karmic fate. It was akin to the worst acid trip you could ever imagine and culminated in my lying in a ball on the carpet for nearly two weeks until i was finally discovered by my partner dehydrated and mumbling insanely about having to kill myself. Barely able to walk and with my eyesight failing she called an ambulance and finally after over a month of madness i was seen by a psychiatrist in my own area who diagnosed the PTSD and subsequent psychosis and at that point in time saved my life with psychiatric drugs.

Gradually my sleep and sanity returned but the damage was done. I had damaged my eyesight permanently and the tinnitus had spread to the other ear and doubled in volume. This is why it's so important to stay calm....if you can. I couldn't and i deeply regret that. Also please if you know someone who has just developed tinnitus and they are not behaving normally, i,e shaking uncontrollably, head nodding, saying weird shit, talking about killing themselves. They are not acting. They have PTSD. Do not leave them alone and do not underestimate how bad things can get.
Now 7 months later my life looks vaguely normal in that i function. I walk the dog, i wash myself, i converse normally with strangers, i eat and i sleep. But i saw my neighbour in the park the other day and they didn't even recognise me. I've aged ten years and my dead eyes show the truth of what i'm going through. Even though i went through a few months of determination to beat this following my dreadful start, the screaming unmaskable tinnitus remains and i am losing all hope of salvaging any kind of life from the wreckage.

I know people love to talk volume so here goes...i can hear mine when i stand on the motorway bridge and i peer down at the trucks rushing past in the rain and worry that my disturbed mind will suddenly propel me over the edge. The sound is like a buzzsaw in one ear and a piercing laser in the other, both at around 14000 - 15000hz. It has not stopped or diminished for even a second.

As dramatic as it sounds i've basically lost everything. My business of ten years, my partner of 11 years who just can't take anymore of watching me suffer and wants to get on with her life and have children (something i can't even contemplate in this state), my family who are constantly being told by their neighbours etc with mild or fleeting tinnitus that it's really not that bad and have begun telling me they don't care or want to hear about it anymore and my friends who switch off if i even mention tinnitus and simply don't get the hell i now merely exist in and think going out for a few drinks will 'cure' me. I've tried HBOT (did that almost immediately and it did nothing), taken a shit load of supplements, done a water fast, did CBT but quit after 6 sessions of the guy trying to convince me that tinnitus was like a scratch on the door of a nice car even though he conceded my case was the worst he had encountered in 10.000 people. Started cycling and walking for 6- 7 hours a day, every day. Even bough the LEVO device (very uncomfortable and with super loud T i couldnt tolerate plugging my ears every night) I've spent over 10k on this and zero improvement. Now i float from my home (which i have to rent out to tourists to pay the bills) and various rented motorhomes/caravans/tents with my dog while i pray to a seemingly merciless God for meaningful habituation/ recovery.

Before you all jump on the whole AD/shrink trip. Initially i went down the AD route but had a terrible ragey reaction and was genuinely worried that i might kill someone like the plumber guy who leapt to his death after offing his wife. I now sleep alright on melatonin/strong herbs (Valerian, Hops, Passion flower, californian poppy) washed down with strong beer and coupled with a relentless soundtrack of heavy rain, white noise and radio placed around my head in a weird surround sound set up. Frankly if someone without T walked in on me while i was sleeping they would probably be aghast that anyone could sleep/live like this and yet this is what we have to endure at the severe end of this hellish spectrum.
Even though i rarely drank before all this I've started my nightly habit just to cope with the dreadful insomnia/ isolation/noise/hopelessness of it all. Thoughts of all that i have lost to T and ending my miserable lonely existence haunt me constantly and i know this is a controversial subject ever on a forum of supposed sufferers but i often feel angry that i am forced to live like this and that a serious discussion on euthenasia for severe T is considered outrageous when 24/7 isolation and sound torture with no cure or realistic chance of recovery is deemed an acceptable way of life for the cursed few living with the extreme form of this affliction. As others have said it doesn't help our cause that those with very mild T run around telling people 'tinnitus' is no biggie. Sorry but comparing a tinkle in the ear at night with screaming siren T is like comparing a stiff back with being a fucking quadriplegic. Trust me if mine had started as a tinkle the whole shit show i've endured would not have happened and i wouldn't be here writing this.

I know people will say my thoughts are distorted but i simply cannot come to terms with everything chronic pain and tinnitus has taken from me. To think a year ago i would not have traded my life for anyone's. I was engaging, funny, gregarious. I had hopes and dreams. I had a life. Of course I had lows like everyone but i also had times where i felt joyful. Now i am just an echo of who i used to be, a ghost of sorts. I used to look at the homeless guys slumped on the streets and think, how do you end up in this desperate situation. Now i look at them sleeping soundly as i pound the streets all alone save for my screaming T, and my poor little dog for company, and realise that all of us are only one terrible moment away from a far worse fate.

For those of you wondering about the crash and insurance etc. Yes i probably will receive a large payout but therein lies the rub. What is the point of money when you are tortured by an incurable, insidious disease that taunts you 24/7 to the point that you don't feel like doing anything with your useless tormented life? Like all of you with severe T that never ceases i would trade places with the healthy homeless guy in a heartbeat and i would sit there on the street all day grinning like a lunatic.

I apologise for my sombre start on here but sadly it is what it is. In truth i really don't know how much more i can or want to take. On a positive note i will not be someone posting relentless whiny type messages on here simply because of the futility of it and the fact that it's not going to help my situation or anyone else's. From here on in i will only share good/postive news and anything i come across that might be helpful. What i have done and i urge others to do is donate to the Kresger research insitute at the university of Michigan. They seem to be the closest people currently to a cure who you can donate to. If everyone who visits this forum gave just ten bucks Susan Shore might be able to bring us a cure a hell of a lot quicker than otherwise.

 

Jeez, you've been through a lot.

I'm realizing that at my lowest I almost had a psychotic break like you. If mine was a little worse I'm sure I would have lost my mind. I couldn't eat or sleep. I paced, I curled up in a ball and rocked, I argued out loud to myself. I desperately wanted to cry thinking that would make me feel better, but for some reason I couldn't. I smashed stuff. I punched things until my knuckles bled.

Ultimately I managed to lie to myself and say it's not that bad. That held me over until I managed to habituate a little.

 

I feel for you, man. I know that you may possibly tried that solution, but have you tried antipsychotics... these are old school, strong drugs. They might at least ease the pain. Sorry if I am not helpful. Many years ago, when I suffered from insomnia, I took seroquel, which is against schizophrenia. I don't know if it can help with T, but it has strong sedative effect.
Antidepressants and antionvulsants are another, maybe better option. Even a combination of them.
I can't imagine how you feel

 

Oh man, so sorry.
But how did you end up alone and holed up the first year.
I know what it's like, maybe it is really the trigger.
This must get better.

 

Sorry to hear your suffering with chronic pain and severely high pitched tinnitus. I don't know if mine is in the same pitch range with yours but I could hear mine over the jet noise in flights and above the raging rapids in the wild salmon rivers I fish. So mine is high pitched up there too. Like yours, mine hit me in the middle of the night waking up to this loud high pitched scream in my ears. I have never experienced any ear ringing before so this beast just scared the heck out of me. Worse, severe hyperacusis soon hit me too and both T & H were just too much for me. Like you I was lost and depressed. But worse to that, I was hit with relentless anxiety and panic attacks, being a victim of anxiety and panic disorder for decades as well as PTSD after witnessing the tragic accident of my young son. T & H just opened the floodgate of hell of anxiety and panic attacks on auto mode, from the minute waken up by the loud T most mornings. The severe H also turned me home bound and I lost all interest to social or did the things I used to enjoy, like gardening, fishing, dancing etc. Like you and most people new with severely intrusive T, we became a mere shadow of our former happy and gregarious self.

I never thought I could survive this but time has done some healing. Improvement will come slowly. It took me two hears to feel a bit more normal and after 3 years I wrote my success story. Like above quoted, you are beginning to make some progress and can go out to walk your dog. I hope you continue to find progress. If you haven't read my success story, I list the link below to see if you can find something helpful. Take good care. God bless your recovery.

https://www.tinnitustalk.com/thread...w-i-recovered-from-tinnitus-hyperacusis.3148/

 

What was it that had damaged your eyesight? How bad is your eyesight now?

Both of your posts are the most memorable and moving posts I have ever read on this forum...

 

Hello Bam. I am sorry to hear you are suffering so much.

I have a few questions and then maybe we can see if all possibilities and treatments have been considered. I know the docs just assumed my tinnitus was from concerts and didn't probe anything else even though I had decade of jaw problems which are one of the main causes of T. So doctors can be dumb. So lets get a few more sets of eyes and ears on your problems and see if we can figure some more potential causes and options for treatment.

So I'm thinking about the root problem of your cause which might be your neck injury.

1)I want to know more about your neck injury. What is the current state? Is there pain all the time? Pain when your move?

2)Is it just nerve pain or do you have of the above: Stiff neck, pain in jaw or cheek muscles (probe with your fingers), sore shoulders, sore muscles in upper back? I say this because if you have lingering musculature issues in that area they can cause or contribute to tinnitus.

3)Do you have any ear symptoms other than tinnitus?

4)Have you tried physiotherapy and have you done massage? Have you done these since your tinnitus has started?

5)What did the doctors say about your nerve problems? Can it heal?

6) Can you make the pitch or loudness of your tinnitus change by turning your head, clenching/moving you jaw, or any other method?

Answers those questions but let me also state that one lady had neck problems and tinnitus for years and wore a cervical collar (you probably know what this is but for those who don't it is that plastic thing that goes around the neck of people who broke their necks or got whiplash). Anyways after wearing this thing for over 4-6 weeks or something like that her tinnitus completely resolved. So lets consider some of your problems and see if we can use the vast hivemind knowledge of this site to think up some new potential solutions.

Here is the thread about the woman with the bad neck. And in the first post is the link to the medical journal article about the woman. https://www.tinnitustalk.com/thread...by-intermittent-use-of-cervical-collar.17556/

 

It sounds like there is also a chance that a chiropractor might be able to help you, Bam...

 

Well lets see what the answers to all the questions are before we start trying to put together this puzzle. But I do know for myself I have a couple of chronic injuries (achilles tendon, wrist) and if I stay on top of them with activity and stretching they are fine but if I start getting lazy and out of shape and not stretching they start to come back which is why I asked this question.

 

@Bill Bauer Dehydration? Extreme stress? A curse from hell? Basically have blurred vision and light sensitivity now in addition to the common floater complaint. Perfect sight before T.

@EarHair Thanks for the extensive effort to list your questions. In addition to the nerve pain I had a C1/C2 misalignment which was not picked up by physios etc in the early stages and got worse. These days the pain is rare as long as i don't overdo it with the neck/shoulder muscles but i still get some tingling, numbness etc but in fairness the pain element is hugely improved. But by God! I would happily go back to chronic pain with no T. My mistake was that i 'habituated' to chronic pain! I drove with one hand instead of two. I couldn't look over my shoulder so i used my mirrors more. Had to take it easy with exercise and couldn't ride a bike etc. But i used a spiky ball a few times a day to ease it. At night i would sit with a hot water bottle on my neck/shoulder. Basically i made peace with pain. Didn't even take painkillers - so no oxoticity fears - just accepted it. Bothered me a bit at night but in my opinion it differs hugely to T in that pain is something nearly everyone in the world has at some point - it's not weird or unusual - we usually suffer it very early on in life when we fall off our bike and break a wrist etc. We see adverts on TV about it all the time, we know it's manageable. Therefore it's not 'scary' and unless it's insanely horrid, the brain can acclimate and adjust to it. Being in pain doesnt make you feel like a cursed freak. Put simply it's not as downright nasty and vicious as severe T. All my personal opinion of course.

I am currently having weekly chiro sessions - not helping with the T but again nerve symptoms are improving.

I have no other ear symptoms and no jaw pain - been to dentist twice and no evidence of TMJ, tooth wear etc.

I've been tested high frequency for Levo and my T is at 14500hz. I can hear to about 16000hz no dips or anything discovered and i dont notice any difference in my hearing at day to day levels. (I'm 38) I have the TV on at the same volume as i always did, music sounds the same, no distortion etc. I also don't really have hyperacusis although loud sounds now make me cringe a bit because of the mental association more than anything - and yep - i now use earplugs for the loud stuff as a precaution.

I have somatic T which doesnt seem to react to noise, food or booze etc. I cannot lower the pitch but i can intensify it but turning my neck all the way to the right (left ear screams) or lowering my left ear to my left shoulder (right ear screams) and i can make both ears scream together by jutting out my jaw. Equally if i press behind my ears or on my skull i can make the corresponding ear on the same side rise in pitch. Basically my T is very sensitive to movement and touch which when sleeping is a real nightmare as rolling over or moving my head creates a scream. Other than that my T is very constant and has never switched off. It's 'reliably' a right motherf***er.

The best theory i've come up with is that my neck/nerve basically spasmed in the middle of the night (i was sleeping on my front, neck twisted, shit pillow the night it happened) and basically broke my brain. It was like the scream tore it's way in to the left side of my head. From there the sheer terror (like so many others) did the rest and it spread and increased like a wild fire.

My head was basically like a Californian hillside and one match was enough to make the whole thing go up in flames. Now i've got to pray that my brain finds a way of working out how to get a bloody great big helicopter filled with water from the ocean to my flaming audio cortex before we lose Malibu forever.

 

A few more questions:

What is your standard appointment with the chiropractor like? Does he do a lot of manipulation? Does he do any massage? or give you any exercises?

Do you take any nerve health supplements?

If you are wearing your heat pads for too long, that can actually be a problem. Read this link: https://www.necksolutions.com/heat-therapy-neck-back-pain/
It says if you wear our heat pad for too long, you can actually cause swelling, which I'm going to speculate it can pinch your upper neck nerves, causing or contributing to tinnitus, although I have not heard anyone mention this as a specific cause. But we need to try some out of the box but logical ideas.

Have you tried icing any nerves? I had but of inflammation in my elbow and it was causing tingling in my lower arm due to nerve pressure. The doctor recommended icing it to reduce inflammation and calm the nerve down. She said I could ice up 15 minutes every hour for as many times as I wanted per day. I iced it several times a day and the tingling went away pretty quickly. Now I know your nerves are damaged more than just inflammation, but I am speculating it might be possible you have some inflammation maybe in your upper spine. Why don't you try alternating between heat and ice. So do heat for 15 minutes. Let your body return to normal for 30 to 45 minutes. Then try icing for 15 minutes, the let your body return to normal for 30-45. Then you can repeat if you want. Then you will get a but of relaxation and a bit of swelling and inflammation reduction.


Also a hopeful comment: There is a new device you people with somatic tinnitus (which means tinnitus that can be manipulated with neck/jaw movements). https://www.tinnitustalk.com/threads/new-university-of-michigan-tinnitus-discovery-—-signal-timing.2805/

It is pretty non-invasive, it delivers specifically timed electrical impulses to the nerves in you neck to rewire your brain. It has worked in the first 2 phases of the trial to lower people tinnitus. It is now in the 3rd and final phase right now and if it is still proven to lower tinnitus it should be available hopefully by the end of 2018 or definitely in 2019.

 

Please write up your story and send to the AANS (Amer Asso Neuro Sury) and the
American Academy of Otolaryngology-Head and Neck Surgery.There are too many people realluy suffering and committing suicide. We will not get better treatment until we demand it.

 

@Grey Dawn I made this point in another thread.....We don’t have a cure because that’s not in the interests of big pharma.

Trust me if every tinnitus sufferer stopped with all the benzo’s and AD’s that don’t actually treat tinnitus, but just monkey around with emotions, within a year we would magically have the cure pill. Because big pharma would go hold on those tinnitus f***ers have stopped lining our pockets buying the crap that dances around the problem. We better open the vault and give them what they actually want, if we want to get sales up again.

If I’m wrong it would at the very least inspire them to plough more in research if we weren’t already such amazing customers. We’re like some mug who walks in to a shop for a pair of nice running shoes and instead ends up paying twice as much for a few painkillers and some advice on learning to to cope with the pain of running around in bare feet.

 

What do you think caused the onset almost a year later? The accident would seem to take place instantly if there was damage to the ear in any way I would think? Very strange almost a year later. Also, was the second phase where the other ear got it and in general got worse a random thing or do you think from all the treatment and psychiatric drugs as a culprit?

Thank you for your story.