Chronic Auditory Hallucinations and Daily Tinnitus Worsenings

[GrodanB]

I should be posting this in the suicidal thread but whatever.

The last few weeks have been indescribable, and it all feels like some really sick joke. For the first time in 2 years this s**t managed to bring me to tears.

Tinnitus worsenings went from monthly to weekly to daily within 6 months.

Every morning I wake up with a new noise, and I mean every f****ng morning.

But something that's completely new are the auditory hallucinations, caused by both auditory and visual stimulation or none.

So now together with countless different tinnitus noises, there are also several auditory hallucinations that won't go away. These being owl hooting sounds, cop car sirens, sheep noises, truck reversing sounds and a mixture of phone signals. There are also some random sound effects I have previously heard in video games.

The owl hooting appeared after hearing a single owl hoot, since I heard the hooting sound myself through my earmuffs while fishing, and the cop car sirens appeared when I was watching a movie, without ANY sound, where a police car showed up on screen. And since seeing that goddamn cop car a siren noise has been playing in my right ear among the rest of the hallucinations. The other hallucinations showed up without any kind of recent stimuli.

And I do know I have musical ear syndrome. But this is far from it. When I hear a specific sound repeatedly over the course of a minute or so, it's stuck in my ear for a couple of hours. But musical ear syndrome is triggered by SOUND, and goes away within 2 days. The only sound I hear regularly is noises from my chair, footsteps, keyboard clicking, conversations with my parents and gushing tap water.

This is either a full blown brain tumor or schizophrenia causing this. I am seriously losing grip on reality.

This better be a f****ng brain tumor or I'm cutting 5 years off that suicide plan I have. This isn't life, what is this? 20 years old and I feel like a test subject to see how much mental and physical (noxacusis) torture a person can endure.

Is there anyone unfortunate enough to share something similar?! Or am I a one of a kind anomaly with a body worthy of donating for scientific purposes.

 

[Gee82]

I experienced auditory hallucinations on a couple of occasions. One happened recently actually, every night while trying to fall asleep I would hear the doorbell ring. It would ring like crazy for hours in my head. Thankfully it seems to be slowly subsiding. I think for me it is related to a very stressful time that I am going through. My tinnitus also got much worse at the same time, and it's not getting any better.

Did you talk a psychiatrist? I am seeing one next week, maybe some antipsychotic drug could help with the hallucinations.

 

[gameover]

So sorry man. Posts like yours show this condition has no limit.

 

[Sammy0225]

So now together with countless different tinnitus noises, there are also several auditory hallucinations that won't go away. These being owl hooting sounds, cop car sirens, sheep noises, truck reversing sounds and a mixture of phone signals. There are also some random sound effects I have previously heard in video games.

I've experienced something similar called palinacousis. Whenever I heard noises such as a cellphone ringing or a distant ambulance passing by, the sound lingered in my ears and repeated itself until it faded away from my consciousness. It's like having a song stuck on repeat in your head, which doesn't go away until you forget about it. It seems that this auditory hallucination is caused by this particular part of the brain. Hang in there.

 

[GrodanB]

Did you talk a psychiatrist? I am seeing one next week, maybe some antipsychotic drug could help with the hallucinations.

I would rather try to find the cause of the hallucinations before i start gobbling down antipsychotics. I have regular meetings with psychiatrists for depression and suicidal thoughts. Next one on June 7th, feels like years away. They can't do much, haven't helped since 2020 when my tinnitus was still mild. I'ts baffling how much my tinnitus has developed since then.

 

[Sammy0225]

I would rather try to find the cause of the hallucinations before i start gobbling down antipsychotics.

Yup! Exactly man. Don't take anyone's advice to start popping pills. I'm also baffled how much this shit changes.

 

[GrodanB]

These new tones have no mercy, I can't mask them. I have been in disbelief trying to "mask" the noise without causing too much pain. They sound JUST as loud whether my table fan is on or not, no other tinnitus noise I have is like this.

It almost feels pulsatile-ish, quick loud burst, goes constant without fluctuations for a couple of seconds, quick loud burst, and repeat. It's currently the loudest noise by just a little bit.

The other new noises sound like medium pitched electronic waves, it starts, goes on for a couple of secs and then goes silent for half a second, repeat.

Very few noises that have accumulated over the years have been traditional monotonal tinnitus aside from the low hums. I have gotten no permanent noise-induced spikes since 2019, all worsenings since then have been completely unrelated to noise trauma.

If I remember correctly, monotonal tinnitus is more common with noise-induced tinnitus compared to others.

The only single tone, high pitched noises I have ever had were noise induced. Those were the founding noises of what would eventually turn into this nightmare.

They have kind of diminished? Over the years, I can't tell because it's so damn convoluted. The noise-induced sounds likely turned unrecognizable in the background without me noticing, I have no clue.

Not sure if this even matters at all in trying to improve this condition.

I'll just go back to desperately trying to find an underlying cause of these worsenings. Same sh*t that I have been doing the past 3 years with no breakthrough. Or no, it's more just me having a random worsening, trying to find a cause, suspect a cause and get help for it, followed by it turning out not to be the cause. Endless f*****g cycle. A bullet might fix it.

 

[ErikaS]

These new tones have no mercy, I can't mask them. I have been in disbelief trying to "mask" the noise without causing too much pain. They sound JUST as loud whether my table fan is on or not, no other tinnitus noise I have is like this.

It almost feels pulsatile-ish, quick loud burst, goes constant without fluctuations for a couple of seconds, quick loud burst, and repeat. It's currently the loudest noise by just a little bit.

The other new noises sound like medium pitched electronic waves, it starts, goes on for a couple of secs and then goes silent for half a second, repeat.

Very few noises that have accumulated over the years have been traditional monotonal tinnitus aside from the low hums. I have gotten no permanent noise-induced spikes since 2019, all worsenings since then have been completely unrelated to noise trauma.

If I remember correctly, monotonal tinnitus is more common with noise-induced tinnitus compared to others.

The only single tone, high pitched noises I have ever had were noise induced. Those were the founding noises of what would eventually turn into this nightmare.

They have kind of diminished? Over the years, I can't tell because it's so damn convoluted. The noise-induced sounds likely turned unrecognizable in the background without me noticing, I have no clue.

Not sure if this even matters at all in trying to improve this condition.

I'll just go back to desperately trying to find an underlying cause of these worsenings. Same sh*t that I have been doing the past 3 years with no breakthrough. Or no, it's more just me having a random worsening, trying to find a cause, suspect a cause and get help for it, followed by it turning out not to be the cause. Endless f*****g cycle. A bullet might fix it.

I am so so sorry to read this. I am assuming you had recent brain imaging like a CT scan? MRI would be way too much with the sound so I understand why you would avoid that. There has to be a compression or something cause this very rapid worsening.

 

[GrodanB]

I am assuming you had recent brain imaging like a CT scan? MRI would be way too much with the sound so I understand why you would avoid that.

I have had neither actually, getting help for anything where i live takes ages especially if it isn't an "obvious medical emergency" according to the doctors. Whenever i brought up suspicions with ENT specialists and psychiatrists they just look at me weird and tell me "Im worring too much". These suspicions being ménière's, multiple sclerosis or other autoimmune diseases. Recently i have been considering diabetes or kidney disease. Things that could cause nerve damage and neurological issues.

I am trying to get a CT scan for my jaw and brain so i can see if it's a brain tumor or not. The jaw scan is for a private clinic so i can get permission for masseter botox injections since other treatment has been completely worthless. I know the risks, been grinding my teeth for 12 years and it shows no sign of stopping.
Funny thing is since getting help for the teeth grinding and TMJD back in 2018 they have never actually scanned my jaw once. Clown dentists.

My current plan is to get checked for ménière's, multiple sclerosis/autoimmune disorders, diabetes, CKD and brain tumor. It's gonna take at least a month each to get a referall for MS and ménière's. It's gonna take another month to convince the doctors to give me a CT scan which i will then have to wait another 2 months to actually get scanned. They are probably gonna just scan the brain since my dentist refuse to give me a CT scan referall for my botox injections.

This is exactly why i havent gotten this checked earlier, it takes so long to do anything. I just lose all my energy and fall back into depression before i can convince the doctors something is wrong. I tell them my tinnitus is going rampant and that im hallucinating, their answer? "Have you talked to your psychiatrist?" Is what they tell me, they just assume im insane instead of the possibility of that there is a tumor in my brain. This time im going through with everything, it's' do or die i guess. I can't live with this level of tinnitus.

 

[GrodanB]

I have a new super loud electronic morse code noise in my right ear. It showed up a few days ago for a couple of seconds every morning but now it went from a 1 to a 9 and it's constant. It keeps waking me up.

Is it from my new diet? I have cut out all sugar and refined carbs to see how it would affect my tinnitus. I am experiencing low blood sugar for sure but I manage it by eating frequently multiple times per day. Is it the low blood sugar causing it?

Considering its slow buildup, I'm worried this is another permanent noise.

I am trying to stay positive among these chaotic worsenings. This is probably the last shot I give at trying to get my life back in order. Only thing I can do right now is try to cut down on the overprotection, like taking walks in the woods. I didn't realize this before but birds are fucking LOUD.

 

[GrodanB]

I almost broke into a fight today trying to convince a "clinical nurse specialist" how many health conditions other than noise can cause or worsen tinnitus. Like, aren't autoimmune disorders a common cause of tinnitus?! I brought up Hashimoto's disease specifically. I'm gonna lose my mind, they won't help me and I'm so desperate. I kept telling them how I need a proper diagnosis or at least a CT scan of my head or neck but no, no help at all.

"Oh, your tinnitus randomly gets worse every other day without any clear cause? Have you talked to your psychiatrist?" Every fucking time I deal with this shit, I can't get anywhere with these absolute morons. I have gone through this exact fucking thing so many times, they are not human I swear.

I'm gonna kill myself, I can't take this.

 

[Ngo13]

@GrodanB, have you looked into LDN? It's supposed to be good for those with autoimmune diseases. Maybe it will help you.

 

[haha ear go eeee]

I almost broke into a fight today trying to convince a "clinical nurse specialist" how many health conditions other than noise can cause or worsen tinnitus. Like, aren't autoimmune disorders a common cause of tinnitus?! I brought up Hashimoto's disease specifically. I'm gonna lose my mind, they won't help me and I'm so desperate. I kept telling them how I need a proper diagnosis or at least a CT scan of my head or neck but no, no help at all.

"Oh, your tinnitus randomly gets worse every other day without any clear cause? Have you talked to your psychiatrist?" Every fucking time I deal with this shit, I can't get anywhere with these absolute morons. I have gone through this exact fucking thing so many times, they are not human I swear.

I'm gonna kill myself, I can't take this.

Fuck, dude I can't even imagine what you're going through. I'm so sorry.

Are you trying to get tests done to make sure it isn't anything like a tumor before you try out medications? Have you tried anything that made it worse so far? I think Epidiolex might be a potential avenue to try if you're looking for potassium channel openers on the safer side.

So I don't know how the process goes where you're from, is there a way you can get access to multiple different doctors at once so you can move on to the next if they don't refer you for a scan? Here in Canada we have Telus Health.

 

[GrodanB]

have you looked into LDN? It's supposed to be good for those with autoimmune diseases. Maybe it will help you.

I have wanted to try LDN for a while, but I suspect it won't be easy to get. They refused to give me Prednisone last time I experienced acoustic trauma. They would most likely reject me.

Are you trying to get tests done to make sure it isn't anything like a tumor before you try out medications? Have you tried anything that made it worse so far? I think Epidiolex might be a potential avenue to try if you're looking for potassium channel openers on the safer side.

It could be anything causing the tinnitus worsenings which is why I'm constantly trying to find the underlying condition, that I undeniably have. If I find something I can treat with meds, I will be downing it like candy, my tinnitus has gotten so horribly bad. New noises pop up all the time, I'm very desperate.

I had a simple blood test done at the last meeting I had with the nurse and my Platelets and Homocysteine levels were higher than normal, especially the Homocysteine. High Homocysteine is normally caused by a lack of B12 or Folate so I got another test to check my B12. I got the results and it turns out the B12 levels are actually higher than normal, and the Folate is normal. Now the question is, what is causing my body to not being able to absorb Homocysteine, even with more than enough B12?

Normal Platelets count 145 - 348 10E9/L, my Platelets count 360 10E9/L *.

Normal Homocysteine count <15 umol/L, my Homocysteine count 23,7 umol/L *.

Normal B12 (Cobalamin) count 145 - 569 pmol/L, my B12 count 582 pmol/L *.

There is no way they brush this off as nothing, my blood test from one month earlier still had a high Platelets count at 358 10E9/L which they completely ignored, and it actually increased since then.

Has someone else experienced something similar like this?

 

[daydream]

Hi @GrodanB,

I hope you are doing as well as possible. I came across this post while looking for any potential solutions for the recurring sounds. For me, many sounds above 45 dB trigger it. This might be a long shot, but I've read about an MTHFR gene mutation that can lead to elevated homocysteine levels, increasing the risk of neuropathy and sudden hearing loss.

Is it possible that your B12 levels are high because your body isn't absorbing it properly? I wanted to mention it just in case it's helpful. I believe you can check for the mutation with a gene test.

Hang in there.

 

[GrodanB]

Hi @GrodanB,

I hope you are doing as well as possible. I came across this post while looking for any potential solutions for the recurring sounds. For me, many sounds above 45 dB trigger it. This might be a long shot, but I've read about an MTHFR gene mutation that can lead to elevated homocysteine levels, increasing the risk of neuropathy and sudden hearing loss.

Is it possible that your B12 levels are high because your body isn't absorbing it properly? I wanted to mention it just in case it's helpful. I believe you can check for the mutation with a gene test.

Hang in there.

Thank you! What a coincidence—I looked up MTHFR mutations about two weeks ago. I tried folic acid, and it made things worse almost immediately. Folic acid seems to cause problems for people with MTHFR mutations. I have also started taking large doses of B12 recently (3000 mcg of methylcobalamin, considering increasing it to 5000), and I am not experiencing any negative effects, though no positive effects yet either. But it is definitely too early to tell. I am planning to get a gene test done for sure.