Schizophrenia Destroyed My Dreams, Tinnitus Destoyed My Life

I have really bad tinnitus and I also have really bad schizophrenia. I am on a bunch of pills,
so people won't see me doing crazy stuff, but there is this thing called negative symptoms which is very hard to treat. It basically means that I have little to no motivation to do anything and that nothing really feels fun. I'd say similar to a depression.

I've had schizophrenia for 20 years and 10 years of it pretty bad. After I had to leave university, because of my last psychotic break and my future ruined, I thought that at least I still have music and lots of time. I made music for many years. It was my therapy and made me happy. It helped me so much with my symptoms. I also had my own place and many friends back then and I managed OK.

Then came 4 years of tinnitus.

In 2019 a friend asked me to help him fix up a place across town and I was glad to help, because it meant some extra cash and getting outside some. It turned out to be really really stressful and loud and I also ended up drinking a lot of beer with the guy. When I got home one night, I worked on some music on Ableton Live at home on headphones (very loud and drunk) and somehow I suddenly couldn't hear the highs anymore in my left ear. That's when I heard the tinnitus for the first time, like someone turned up the volume of an EEEEEEEEE sound. I've had loud tinnitus before after a concert once, but it went away overnight. This time it didn't.

The first weeks were unbelievable terror. I could not get an ENT appointment right away. I couldn't sleep or eat. I heard it over everything. I knew this was the end of my life and that it would make my family incredibly sad, too, which made it so much worse.

The ENT eventually sent me to the emergency department, but the doctor there said it seems I don't have hearing loss, so she advised against intratympanic steroids and sent me off to the psychiatry where I had my psychiatrist. All they did for me was give me more antipsychotic medication. It worked to calm me down some and I started sleeping again.

Something I really painfully regretted for a long time, was that I did not insist on trying the steroids. There is this chance that it might have helped. It probably would not have given me silence but it might have reduced the tinnitus some like it does for others. Of course I also regret listening to music on headphones on high volume for years like nothing else. I've been such a fucking idiot.

After a month or so and stuffed with pills I moved in with my mom. It was supposed to be temporary until I felt better, but I never got good enough to stay at my own place again. So there I was, a 40-year-old man living in my old children's room in the basement with bad tinnitus AND schizophrenia and its negative symptoms.

My mother took care of me the best she could and without her I'd definitely would not have made it for so long. She gave me stuff to do around the house (which I am never motivated to do, but do for her) and we spent a lot of time outside and in the woods walking and stuff like that. She often says things like, "look at the sky and the sun, isn't it beautiful?" and I say, "yes mum, very pretty" without feeling anything at all. But I love my family. That's why considering suicide feels like such a betrayal.

Had my tinnitus stayed at the level of the first year, I would have definitely habituated and might have even moved back into my old place and live my life at some point. But unfortunately it only ever got worse for me. Sometimes more, sometimes less.

I think schizophrenia destroyed my dreams, but it was tinnitus that really destroyed my life. Usually not a day goes by without it making me suffer in some way, especially the past 4 months that were very hard. I've had it for 4 years now and it still worsens, sometimes life-changing worse.

Try to imagine getting so little of the good stuff out of life but having to deal with two real monsters without a cure. It's a real shitty and unfair combination. It must be similar for people with deep depression and tinnitus, but depression can heal sometimes, schizophrenia not so much. Even so, life with schizophrenia never made my life only about schizophrenia for me, when on pills. Only severe tinnitus did that. If it's really bad and just worsened again, you think about it all the time, 24/7. My life is pretty much only about tinnitus now.

Yesterday I had another ENT visit, because of the tinnitus getting worse and worse. Surprise, surprise, he couldn't help me at all even though the guy is supposed to be the best for tinnitus in town. My mom is also at her wits' end and wants me to go to another psychiatric hospital. I don't know if any of you have ever been, but there is no sadder place to be except maybe a battlefield with corpses lying around or a prison. I don't want to do it again. These places can be crazy loud, they have shared bedrooms, no privacy, fixed schedules, horrible food, ... and probably nowhere where I can at try to relax with some sound therapy stuff. I have really dark thoughts, but I promised my sister I'd go and that's why I'll give it a chance. This place supposedly has some of the best doctors in Germany.

I keep asking myself what it is they could possibly achieve, though. What is it they can do? Isn't it likely they'll just try to come up with another combination of pills, antidepressants etc... meaning another chance for things to go south like the thing with the benzos?

Guess I'll find out soon.

Thanks for reading.

 

Shit, man. So sorry.

 

I'm so sorry. You aren't suffering alone.

For what it's worth, you aren't missing anything from the intratympanic steroids. I've had three done and they did nothing.

 

I'm very sorry to hear that. Hopefully a treatment comes soon. It's not fair that so many have to suffer with this.

 

So, so sorry mate, what an incredibly sad story. I hope and pray you come through all this suffering and pain and can at some point turn a corner and live a life again.

 

Life isn't really fair. I am sorry man.

 

Yes, I can relate to your early days when I first got my tinnitus. Sleep was almost impossible, and hardly anyone understood what I was experiencing. It was a time of absolute terror and pain. I had joined the Hemlock Society and was going to kill myself because it was too much, WAY too much.

Going to doctors was useless. Hell, it was a quack doctor who was responsible for my tinnitus due to his prescription for antibiotics. He wouldn't listen to my fears when I kept coming back to ask about the tinnitus, just said that once I stopped the antibiotics, after X amount of time the ringing would stop. Of course, it didn't. If it hadn't been for a chance visit to a nature walk area where I discovered that the sound of a running stream mitigated my tinnitus to a large degree, I wouldn't be alive to type this. Thank god for masking sounds. Doctors kill as many people as they help. Mostly they're just guessing, and going by protocols that may have worked for one person but are very inappropriate for another. Do your research, that's the mantra.

Keep in mind the drugs you're taking could be contributing to how loud your tinnitus is. You can read up on them until your eyeballs fall out, but the only way to know is to cut the dosage down or completely stop them taking them, probably one by one until you are off them and they're out of your system. Then see if it makes any difference. Talk to your doctors about this, and make sure you have your mom and others for support when you try it. There are a lot of drugs that are ototoxic, and taking more than one at a time could really cause huge trouble. In fact, I'd have to say it WOULD cause havoc, it's just basic science. If you begin to feel that things were unmanageable when you try this, then get back on them. There are always different drugs that treat the same issue, one or more may need to be changed to something else.

Honestly, I'd like to know if there is any other way to know if a drug is a contributing factor or not, and if anyone here knows of something, please chime in.

 

Hi @momus, I researched my antipsychotics and they are not ototoxic (in any list). I also wrote a tinnitus expert once, and she had never heard of them being a reason for or worsening tinnitus. I do get worse though, and often have without a reason in the past years. So it is possible that there is some freak connection nobody knows about. Even scientists don't know really how these pills work. I think about it often. But even so I can't quit or change these meds. Finding something that works for a bad case of schizophrenia is very, very hard.

Sound therapy helps me, too. In my first 2 years with tinnitus I would play sound therapy from YouTube all the time and some files almost completely masked the tinnitus. Now I hear the monster above everything.

Thanks for the hugs and support!