"It Broke Me in Half" — My Story — Looking for Any Support

Hey Everyone,

Ever since I got this I've been on this forum constantly, reading as much as I can about other people's experiences and all the remedies/treatments/drugs/supplements everyone has tried.

I decided to introduce myself and become a part of this community. I have never come across something as horrible as tinnitus and its accompanying pain/anguish it causes. I never knew how this would bring me to my knees and make me weep like a child. It's ruined my life and snapped me in half... So I come here humbly so that I may not have to walk alone.

Here's a little bit of my background and my sob story:
In the month October I was hospitalized on 4 separate occasions for an Ulcerative Colitis (https://en.wikipedia.org/wiki/Ulcerative_colitis) flare which had me bleed out so much I had to have 5 blood transfusions at one point. I spent a total of about 20 nights at the hospital. I was in so much pain at one point their strongest pain killers at the maximum dose could only bring about 10 minutes of relief. At other points they would starve me to give my large intestine a break so that the drugs would take. That was the worst. Starvation is worse than pain.

After that hellride I came out 20 pounds lighter. I looked like I came out of a concentration camp. Being a weightlifter for years it was soulcrushing to see all that muscle go down the drain (literally in blood) in one month. I was bruised and battered beyond belief but I came out of it alive.
The hospital pumped me with every dam thing they could find. The IV machine was so full of bags it bent.

Lots of sobbing and moping after that point; after my life just crashed into bits and pieces. But life wasn't done with me yet...

On Thanksgivings day, around 3, is when the ringing came. It came so loud. Screeching, high pitched squealing noise deep inside my ears. It was so loud and terrifying that I thought I was going to to ER again. I had a prescription of xanax and I stuffed myself to keep me away from the hospital. I could barely sleep, I could barely think, barley eat. Sobbing all the way "What is this? Why? Why is this happening"?. I felt god awful pain and pressure in my eardrums which added to the torment.
I looked online: "Tinnitus". Never heard of this. "No cure." Please God. "With you for life". No no, God no.

I went to the doctor and she confirmed the tinnitus. Saw an Audiologist. She ran a series of tests which I found out was just to test for hearing loss. Afterwards, she told me my hearing was fine and I should be on my way. I looked at her and asked "What about the noise and pain? Is there anything you can do? Anything?" She replied with a smile "Oh sir, you'll just have to live with it". More sobbing.

Went back to my doc and she gave me an ENT appt. When I saw the ENT, it was the quickest doctors visit ever. "Tinnitus? I'm sorry but I can't do anything for you" About 30 seconds. World record. He was gracious enough to put an order for an MRI brain scan which I have this week. We don't expect anything to come out of it.

That meeting was a month ago and since then its been hell on earth for me and my father who I live with. The pain, anguish and delirium the tinnitus caused was so hellish, I went online to purchase a specific poison to end my life. In desperation, I went on my knees and pleaded with my father to cooperate with my final plans i.e transfer all my assets to his name, get him to a nice retirement home, and give me the support to carry out the act. "Life has become suffering; I don't want live anymore; please help your son die" That broke him. The man wept. I have never seen shed a tear in my life, but this did it.

I found right there that I can't choose this route. It would hurt him so much to have his only son be carted off by the coroner that he would not ever recover.
During this time, the psych doctor and the talk therapist have been doing all they can to help me. The meds I'm on have horrible side effects but they get me to sleep and keep me calm through out the day.

You must understand that the tinnitus hit me so hard because it came during the worst medical crisis of my life. But it came when I was going to change my life for the better.

Before everything I described happened I just successfully completed a temporary job contract with a real estate firm. I've been doing accounting temp jobs ever since I got out of college. I was very good at it and enjoyed doing the temp job circuit. But I wanted something new and permanent.

My lifelong friend is a construction worker and does well enough to support 4 kids. Before I fell ill, we met up at his home for a cookout. We haven't seen each other for months. "I want to do something different. I want to do what you do. I hate being in front of a computer all day". He initially discouraged me but I kept at it. He said it would be physically demanding as hell. We went to his backyard were he had set of free weights.

I could out lift the guy by a good degree. I lifted weights twice what he could with more reps than he. He knew I was a great worker and after seeing my performance, he said he would talk to his supervisor. All that time in the gym paid off.

A week later he called me up. His super agreed to take me on. He even lined up a spot for me and $500 cash to buy my tools. All I had to do was show up at his office and make the commitment.

It was exciting. I saved enough cash too that this would be the time I would move out of my dad's place and establish my own life finally. It was going to be a brand new life and I was so happy.

But at that point I was 2 weeks in with my illness, the illness that would hospitalize me. I was fighting it off tooth and nail to put it back in remission, but it fell through. It caused the chain of events that lead me to this community...

So here I am. I never done this before, putting such a personal part of my life for the whole internet to see. But reading all of your posts gave me courage to do so. I must admit there are those here who have it worse than me. I particularly feel for one poster, @Bam. Bam, I've read your postings and I gotta say I'm so sorry this shit has taken so much away from you. I understand the hell you're going through and a lot of other posters here too.

This is a shot in the dark but hey... I'm early 30s guy in the greater Los Angeles area. If other guys with tinnitus in the area want to contact me. It'd be nice to have a couple of buddies going through the same thing.

And I do want to be a part of this community and be of service to those who need support and give advice (I'm on the klonopin/gabapentin therapy right now and I intend to make commentary on it soon)

This is not going away, so I hope you'd want me around.
Thanks for reading all this.

 

Hey @Supplement

I’m sorry to have to welcome you to this forum and so sorry you’ve been through such a distressing time with everything. You’re in VERY GOOD company here and have lots of folk who absolutely understand your cruel suffering, especially @Bam whi has been through a hell of a time.

Keep talking, we are all here to support one another and keep each other buoyant through the difficult times! X

 

I feel you man and welcome. Like you i had many plans and dreams and was always a bounce back resilient kind of guy. As you know all that has changed and I too am now completely tortured by constant screaming noise. Like you i have also been down the purchasing poison and begging my family to give me their blessing and support to escape this nightmare. And like you i realised this is never going to happen. Trust me we are the tip of the iceberg. But sadly very few people can appreciate how ridiculously soul destroying and monstrous living with a severe form of this is and how hard and tormenting it is to make the decision to terminate your own life when all you want is to have silence back........What can i say bud?!? We lucky bastards really hit the jackpot.

 

For many sufferers, T fades over time. You shouldn't assume that what you are hearing now is what you will be stuck with.

I hope that you will wait at least two years before committing suicide. There is a very real chance that your T will go away, or fade. Even if that doesn't happen, it is likely that your reaction to it will stop being as extreme.

Have you seen the post below?
https://www.tinnitustalk.com/thread...eone-else-who-has-tinnitus.26850/#post-307822

 

I hate to bring this up, but MRI is not completely safe for people with T. Some people end up with louder T, even after they used earplugs and ear muffs during their MRI. For more information, search this forum. If you have other suspicious symptoms, it might be a good idea to eliminate tumors as a possibility. Otherwise...

In your case, I think your T is likely due to an ototoxic medication...

 

I visited a Dr. once who said she had t for a couple weeks after taking a drug. She said once she stopped the drug it slowly went away. It's great that your hearing is still normal, hopefully the t will start to fade.

 

you're early in. it's a new normal for sure. your tinnitus may be caused by certain levels of hearing loss. science has found remedies for this. there are potential cures rapidly approaching within the next few years.

I recommend you read up on fx 322. I also suggest you express yourself via meme in something here called my posting place. that's where the smartest and coolest people on this forum hang out.

 

That's exactly what the MRI is used for.

It seems reasonable to want to protect your hearing as much as possible when going through that imaging process, though. Volumes vary a lot across hardware too, so it may be useful to talk to the technician beforehand, although I'm not sure how this can really work in practice, as you generally meet the technician at most a minute before you get into the room.

Then you can also end up with a tech who will tell you you can't wear ear protection as it will interfere with the images. Ask me how I know. No hearing protection for me during my MRI, in spite of my asking for it.

 

I know. I was trying to say that it makes sense for him to have an MRI only if there are other symptoms, besides T. It is one thing to have an MRI when T comes out of the blue. In his case, he has take medication that could have caused his T.

In a recent post, someone said that they got a huge spike after being in the quietest model on the market...

Shocking. I am glad that you ended up being ok.

 

Yeah I'd give the MRI a miss too. I had one back in February for my lower back and it was loud as Krakatoa (this was months before my acoustic trauma). Then my ENT in November wanted me to go for one and I said "no, too loud". I'll never go to doctor about hearing issues again. They're clearly out of their depth.

 

@Vicki14
Thank you so much for your warm welcome. Its a real good feeling to be around people who understand this monster. I've read the anguish laden posts on this forum. How good, decent and strong folk are torn into shreds by this. Jesus Christ. I know that no one can bear this alone. I certainly cant. This terrible high pitched, super high frequency hissing sound that never leaves me alone. Never. I But kind words and internet hugs do make a difference.

@Bam
Thanks for posting in my thread, my man! I need to give you all my admiration. Going through your posts is heartbreaking. I've got an idea of what T took from you, more than what I lost. And I cant imagine the intense T you have, but you did your best to describe it. I'm sorry once more of what you're going through and will go through. I'll give you the cliched "Hang in there" nonsense because I dont know what to say in my position. What I can say is this, you're an example of how much a human being can endure without caving in. I wouldn't want you to leave this community or this planet. I'd be a hit to everyone's morale.
I want my f-ing silence back too. We all want our lives back.

Shitty f-ing jackpot. I dont remember buying a ticket. Moreover I never consented to being brought into existence!

@Bill Bauer
Thanks for the link. I've read through it. I must have glanced over it when I was in the throws of my T induced panic. I was on hear looking for cures and quick fixes. I could only fixate at the posts of people mentioning "months" and "years" in their posts. I focused on the posts of venting their pain about their own struggle with T and became obsessed with negative thoughts. I thought to myself that " I was finished" .

There is much to that link that that I can hang my hopes on. I pray that good fortune smiles on me and my T will also disappear. This puts me in a good mood, but I need to realize this might be with me until I die.

I don't know how to fashion my thoughts now. Should I toughen myself up, and accept the fact that this will never leave. Or keep hoping and focusing my thoughts that this will eventually go away. I don't want to be disappointed, so I am sticking with the former.

Oh one thing @Bill Bauer . You sent a PM but I am unable to respond to it. I think it's your profile settings. Or because I'm new.

As for the MRI. I am going to take a gamble and go for it. I didn't mention it in my first post but its not just T. What manifested a week after and has been going on ever since (but largely diminished ) is the ear pressure/fullness of the ears, ear canal pain and pain in the forebrain. PLUS some vertigo. "Ménière's disease" I am scared shitless. All THAT is what drove me to the brink of suicide.
Ive been on prednisone since September and they gave me ridiculous amounts of that stuff to stop the internal bleeding during my hospital stay. I'll take the risk of an MRI to rule out tumors or something scarier.

@JohnAdams
Ah yeah. "My posting place" Ive been having some laughs scrolling through there. I'll jump in that ball pit soon...

Soon soon soon. I'm tired of doctors, tired of psychiatric meds, tired of this loud hissing noise. I'm tired of being unemployed. My self is f-ed up so bad I will be going through the state's social services program in order to get a job. I don't have a choice. I fallen so hard I have to get a job for "people with disabilities" as no normal employer would touch me with a ten foot pole the way I am right now.
Humiliating beyond belief.
Thanks, "life". I wonder what other surprises you have for me in the future.

 

Snap! Me neither! Too overwhelming- always here if you need to offload/chat x

 

Tinnitus can take away a fuck of a lot, but I doesn’t take away the essence of who we are. If you’re a fighter, you will remain a fighter. Keep strong my friend, have no shame in what you have to do to survive.......and maybe, just maybe, we will wrestle back some silence from this mother****er.

 

@Supplement The time period was at least 25 days from discharge from the hospital to receiving tinnitus. Is this correct? If hearing is fine, then I would question the blood transfusions over hospital IV drugs. Change in blood pressure from transfusions can cause the ipsilateral carotid artery to compress causing tinnitus. This is very possible and you might see your tinnitus improve over the coming months. If not, discuss with doctors - endovascular for endovascular treatment with antiplatelet therapy and full heparinization.

Update: from a case study history file in part.
Blood transfusion - Tinnitus - In our report, when the ipsilateral carotid artery was compressed, indicating a vascular disorder. On the initial angiogram, the left subclavian artery was occluded, and the contralateral vertebral artery origin was stenosed. Because of the flow reduction, anastomoses between the left occipital artery, the left vertebral artery, and the left deep cervical artery (proatlantal arteries I and II) progressively enlarged to maintain blood supply to the left arm. Because of a widely patent right posterior communicating artery, there was no vertebrobasilar insufficiency. The proatlantal arteries run close to the petrous bone, and their arterial pulsation can be transmitted to the ear. The endovascular treatment was performed with antiplatelet therapy and full heparinization, while the reversed flow in the left vertebral artery protected the vertebrobasilar system from thromboembolic complication. At the end of the procedure, the left subclavian artery was fully recanalized and the anastomoses completely disappeared. The fact that the tinnitus disappeared after the procedure confirmed the causality between these anastomoses.

 

Have you noticed any fading (or a change in pitch for the better/easier to ignore) compared to a month ago? It is ok if you haven't (as there is still time), but if you have, it would be a good sign. Also, did you get T at the start of November, or towards the end of November?

I think it is realistic to tell yourself that this is likely not the sound you will be stuck with. Likewise, should the worst happen and it were to stay, your reaction upon hearing it 5 years from now (and even 2 years from now!) will likely be less intense than it is now.

I am glad! When I found those stats studies, I had been feeling as desperate as you have been feeling. I was looking for some hope, and those studies certainly provide a reason to hope.

It must be because you are new.

 

@Supplement Have you had any blood work or follow up examination after your blood transfusions. Your tinnitus recovery may include as to when IV Drugs were given before and after your blood transfusions. IV drugs before the final transfusion would probably be more promising with tinnitus resolve.

Case histories similar to yours do show tinnitus recovery often. There's a big difference in calculation of tinnitus recovery stats when condition is beyond and amount of hair cell death. Your hearing tests should no hearing loss, but there might be some hidden loss. When recovery tinnitus stats are considered, specific medical conditions and sub conditions and any treatments given need to be noted, but in your case - blood transfusions are on your side.

There are some general guidelines to help with tinnitus recovery, but guidelines for specific conditions are way more beneficial. In your case after blood transfusions, maybe blood enhancement of certain minerals and foods may help.

 

@Greg Sacramento
Thanks Greg. Very interesting stuff you brought here. I would have never thought of this. But there might be a connection to my T. I'll mention this:
When the blood loss got so severe, I started to loose my vision. Another thing that happened simultaneously is I lost my hearing as well (fun times, ptsd anyone?). So I would go deaf for 2 seconds then my hearing would come back, all distorted, like I was in a cave muffled. And yup the ringing sound was present, not as strong as now and lasted, say, 4 seconds.
No blood tests since I was discharged. Now you mentioned the IV drugs. They pumped me with antibiotics continuously, among other things, but with each admission they put me on different stuff. What I can pull from the top of my head right now is Ciproflaxin. That was before the transfusions.
I need to take a look at the detailed transcripts of my ER visits. I need to contact the hospital and see what I can get.
Again thanks for the info.

@Bill Bauer
The first week and a half the T was screaming. What I eventually did was to drop all the psych meds: one antidepressant, one neuroleptic, and one benzo. I didnt let go of the benzo (xanax) quickly but it became apparent it was culprit in keeping my T up to that insane level. I made the switch to Klonopin. I was only taking that for a while and my T volume dropped to tolerable level. Say,,, 40% reduction.

Since that reduction in volume, I haven't noticed any more reduction in volume. I think I've grown to ignore it and keep myself in places that have noise. I think Ive gotten better at "coping" I got my T on thanksgiving day.

Now I mentioned taking Gabapentin ( per: www.tinnitusjournal.com/articles/gabapentin-and-tinnitus-relief.pdf)
It has provided tremendous relief FOR the ear pressure and pain I was having in the ear canal. Plus the anti anxiety and anti-depressive qualities are real good. As for volume, im not sure. Its helping me to cope better yea.
I've only had GP for 5 days now. I have to wait for another couple of weeks and see if it affects volume.

I just took .5mg of Klonopin just now. I took note of the volume before and after. It raised my T and the pain/discomfort started to return.

It might be the benzos, man. I may have to drop it. Easier said than done .I ve been on BZ's for a decade now. I cant just quit cold turkey. And I have been relying on this crap to get me to sleep.

God this is complicated. F*cking Christ Almighty!

 

@Supplement As mentioned and not as a calmer is that you should see more reduction in the coming weeks and months.
Ciprofloxacin is slightly tinnitus unfriendly, but not so in a transfusion process. Of millions of TF procedures only 21 reports.
Others for complication - epinephrine (no), furosemide (no), acetaminophen rarely, diphenhydramine rarely, dopamine (no).
It's appears most that your subclavian artery wasn't effected. Your thromboembolic reactions as we mentioned above no doubt is now remarkable - as in excellent.

Have a good New Year and stay in touch. I want to hear a success story by April 1.

 

During the first few months after the onset of my T, I had been taking amitriptyline to help me sleep. It is non-addictive and it doesn't make one drowsy the next day. It is strange that benzos make your T louder. I know of several people for whom the effect of benzos is the opposite...

 

@Supplement,

I developed T when I was 26. It was a result of noise trauma. I am now 39 and have recently experienced a major spike in my T. As someone who dealt with this for a decade, I can assure you that suicide is not the answer. Like any other psychological aspect of life, you CAN deal with T. When I developed it, it was detrimental. I never used any legitimate meds to cope with it, but had a few good bouts with alcohol.

What I can tell you is that since I developed T, I have started a family, a new career l, and went back to school and earned a graduate degree. I bought a house, did many improvements myself, enjoyed holidays, welcomed 4 babies into my life etc...

With my recent setback, I began the whole cycle again. Making myself crazy, worried sick, hoping for silence, focusing on T so sharply that it is consuming me. One member on this forum said that he believes “spikes” like the one I am experiencing last quite a while. This is a hope, but I’m not betting on the fact that it will go back to what I had come to accept. Instead, I am going to begin a new journey to conquer this change, as I know that physically and mentally I can still go on accomplishing goals, making happy memories, and living life.

The goal of me responding to your introduction was to tell you that ending your life is NOT the way. It is possible to be the person you envision yourself as, despite having tinnitus. I promise you this.

Good luck brother, please reach out with any questions about my personal journey.

 

Same to you buddy. God willing by April. Thanks again.

@Bill Bauer
I've been on Ami for 4 years now. Its the AD I was referring to that I needed to drop. It was behind my T. I've had good results with that stuff for my depression anxiety. Its a fantastic med.
Its opposite world for me. I've read all around here that benzo's and stuff like amitriptyline provide relief for T sufferers. But those are now my enemies for my path to recovery/stabilization.

T is so strange and how people respond to different things. What works for someone, doesn't do jack for another person. What ever happened in that hospital between the all medication and the trauma, something in my brain where it now seems to reject psych meds.

The Gabapentin continues to pull its weight. It's taking the edge of the electric "eeeeeeee" sound of my T ever so slightly. It also is helping with the withdrawal of that stuff.

Thanks for the pat on the back. What a success story. I can only hope to achieve a slice of what you've obtained.
I'm only a month in... It's gonna be so brutal to get out of this hole. I'm trying to muster the strength but this nonstop "HISSSSSSS/EEEEEEEEEE" keeps dragging me into gutter.

Having all your dreams dashed, still living with my father, subsisting on a small disability check, using all my savings to make up for lost income...
I won't do myself in I suppose, but the thoughts rush in night when I'm just trying to go to sleep. Just let me sleep for fucks sake.

 

This story was heartbreaking, I hope you find peace and 2019 will be a better year for you and your father.

 

Supplement,

The sleep is awful at the beginning. I can recall it from a decade ago, and from just recently. You want to curl up and lay an ear against your pillow, but it’s just to loud. My set up at the beginning was comical to me now. TV on, fan running on 2/3, Brookstone noise machine set to “rain” on a low volume, and a small clock ticking under my pillow. I would start by laying on my back, looking straight up. Also took Melatonin. By my 3rd year in, I was down to just the TV and occasionally the fan (summers helped bc the air conditioner would be running). Sleep actually became the one place that T couldn’t find me. When you get into a sleep pattern, your brain provides sensory noises to sooth and calm your body (So I’ve read). I know your body has been through hell and back, but you mentioned you were big into working out. My suggestion would be to start avoiding anything that may disrupt your sleep (caffeine, sugar, late eating, stressful conversations... whatever you think may impact it). Then try to go for a short walk in the evening, make your body crave rest. Do yourself in with Celestial Seasoning night time tea and a melatonin, and get that ambient sound cranking. We’ve all lost sleep as a result of tinnitus, but you can and will get there. I’m finding this forum help me cope with mine all over again, so I’m planning on being around for a bit. Please respond, ask questions, reach out. You will get out of the place you’re at. And just prepare yourself, because it very well could be a couple years (unless you achieve silence otherwise, which is possible for you seeing as your onset was due to meds). Find it in yourself to be strong. Hit me back.

Joe.