Suicidal

[Zugzug]

Can any of us even make a difference? I'm going to start resorting to violence at this point. It's time for society to get woke about ears.

First of all, please don't resort to violence. Not only is it not right, it's unhelpful in this situation.

I think we waste a lot of time (myself included) blaming the wrong people. The biggest people to blame are really the people that drive the audiology education and best practices on hyperacusis. When I really understood this was when I saw an ENT who gave me the impression that he was a good doctor. He seemed kind, answered our questions, didn't victim-blame me. But he suggested CBT as a main treatment.

Though hyperacusis is complex, the problem is pretty simple in the abstract sense. All of the money going towards behavioral management of hyperacusis should be going towards biomedical research.

If this were the case AND doctors stopped giving bad advice (like getting loud tests unnecessarily or that noises under 85 db can't harm us), the problem would no longer be any human being's fault. It would simply be bad luck, being born in the wrong era.

So the question is why do they think the behavioral stuff is so useful for hyperacusis? It's simple. People interpreting statistics incorrectly. If someone improves with time while doing behavioral stuff, they attribute the improvements to the behavioral stuff. It's also people with small imaginations who just can't get over the fact that someone with a hearing disability can have normal thresholds on an audiogram. This is stupid. It's like saying someone who has a normal brain MRI can't have a psychiatric issue.

 

[Mercury]

I deeply empathize with many of the posts in this thread. I recently habituated to my somatic tinnitus, but overreacted to a spike I was having by searching for white noise to mask it.

Now, I'm terrified that I've caused permanent damage to my ears and caused legitimate tinnitus to spring up. I'm still hearing phantom crickets in my ears coupled with a chronic screaming hiss and the occasional high-pitched screeching.

I was already struggling with depression before this due to other health issues and external stress factors, so I really hope this passes in time because I don't think I can endure much more of this severity.

 

[Shizune]

@Zugzug, I was joking about the violence. I'm sorry, I kinda phrased it in a serious tone. I was just thinking how in the social and political world, certain measures can get changes made, and here we are helpless and unable to fight against the system. I'm not a violent person I swear, haha.

The more I look at it the more it just seems like we have not even half a piece in a giant puzzle. Someone on Reddit mentioned an audiology student actually learning the opposite of the "don't protect your ears" advice and I thought it was amazing. Maybe if we're lucky this information will get passed along and a new generation of audiologists will start doing something. But even then no guarantee they'll have the interest to even tackle hyperacusis, or move beyond the "there's no cure so here's a CBT bandaid". What a horrible curse.

 

[PeteJ]

Yeah, you have to take the prescription and say you're taking it and come back for a refill, do that a few times, then say you have terrible side effects/doesn't do shit for tinnitus, and you're home free - you followed your doctor's orders and it didn't work, hence you're disabled with poor prognosis to improve. You also need a psych evaluation, where the shrink will just write you off as untreatable.

My doctor won't do the psych evaluation. How do you get that?

I think he won't because then he has to write down that he "couldn't help" or maybe there's more paperwork?

 

[PeteJ]

I'm normally someone who hates lying and am bad at it. But honesty has gotten me nowhere with these people. I eventually did learn on to put on a face and try to act as casual and chill as possible so doctors wouldn't write me off as a spaz or make them hone in on my past mental health history. Guess it's time to put on the opposite mask.

Also @PeteJ for what it's worth, I meant like for the greater good in regards to attitudes towards tinnitus & hyperacusis. Like if you try to get disability and do it this way, the people who have never heard or seen it before will write it off as mental, thus impeding progress of the medical community ever taking us seriously. But for all I know, and it seems this way, they don't give a shit period and will just move on to reject the next person without looking into things further. I hate this whole "pick the right dialogue action or start over" shit just to get on a doctor's good side. Play your cards right and they just might give you what you want. This person who is supposedly here to "help" you.

I truly wonder if in my life time this stuff will ever get the recognition it deserves. Can any of us even make a difference? I'm going to start resorting to violence at this point. It's time for society to get woke about ears.

They already write it off (as mental).

That's why there's lots of people on here posting multiple times about not getting help, lack of support and no real advancements on understanding, research and government funding (to treat tinnitus, hyperacusis and related conditions). Government/society think hearing loss is the only concern.

I don't know what the answer is but it's one of the debilitating health conditions that is ignored and not properly understood. No one tries to do so.

You have to try and get disability however if you can't work and need more financial assistance.

 

[AliasM]

Not fair that euthanasia is for terminal illness only. I can't do another day of this. I love my kids but I shouldn't have to endure this torture. They will be fine with their father. I still have 40-50 years of life expectancy. No thank you. I can barely last the week.

 

[Zugzug]

an audiology student actually learning the opposite of the "don't protect your ears" advice and I thought it was amazing.

That definitely cheers me up. Step one is the end of bad advice. Step two is good advice, which is equivalent to investing in biomedical research.

 

[Shizune]

They already write it off (as mental).

Yeah I meant they'll continue to treat it as mental and it will hold back progress with awareness. But I do get what you mean.

I'm burning a hole in my savings right now but I know after I finally get new residency and hopefully insurance I'll look into it. Thank you for your continued advice on this. Let me know how the process goes for you.

 

[GBB]

I'm pretty sure if things keep going on this way I'm gonna die. Just passed 6 months and many days I feel no joy whatsoever. I still can't sleep without medication. The shower, fans, and basic noises still spike me. I haven't left my house in months. I've gained 20-30 lbs in weight because frankly eating is one of the only things that makes me feel happy.

I really feel like this is going to kill me. I don't have it in me to continue on forever.

My parents are so exhausted from hearing about this and I'm so tired of trying to hide my feelings. At three months I told myself it will be better by six months. Now I'm telling myself twelve. If I don't have something to believe in I'll just die, no question.

 

[GBB]

I'm honestly just scared.

 

[Jrblovsky]

You also need a psych evaluation, where the shrink will just write you off as untreatable.

Have you ever been to a shrink? They can treat everyone. I have serious mental health issues from tinnitus. I just had a spurt last week where I was up for four days straight. I've been to many shrinks over the years and it doesn't work like that at all.

 

[Jrblovsky]

I'm pretty sure if things keep going on this way I'm gonna die. Just passed 6 months and many days I feel no joy whatsoever. I still can't sleep without medication. The shower, fans, and basic noises still spike me. I haven't left my house in months. I've gained 20-30 lbs in weight because frankly eating is one of the only things that makes me feel happy.

I really feel like this is going to kill me. I don't have it in me to continue on forever.

My parents are so exhausted from hearing about this and I'm so tired of trying to hide my feelings. At three months I told myself it will be better by six months. Now I'm telling myself twelve. If I don't have something to believe in I'll just die, no question.

Hang in there. Wish I could say it gets easier. For many it does.

 

[AliasM]

I am in the same place. I saw a psych today and she was so so so terrible. I filled out the questionnaire that showed I was at significant mental health and suicidal risk and when I said it was because of the ringing in my ears, she practically laughed.

I am in such a bad place right now.

 

[Kriszti]

I said it was because of the ringing in my ears, she practically laughed.

Did she really? These people should not be allowed to practice anything dealing with people. Did she care to elaborate what she found so funny about tinnitus and suicidal thoughts due to tinnitus?

 

[PeteJ]

I filled out the questionnaire that showed I was at significant mental health and suicidal risk and when I said it was because of the ringing in my ears, she practically laughed.

Only do all that to get on disability.

They can't help otherwise. Unless they can reduce your tinnitus or hyperacusis, they are of no help. If anyone wants to argue otherwise, go ahead but I am not interested in hearing it. Just being honest.

 

[PeteJ]

Yeah I meant they'll continue to treat it as mental and it will hold back progress with awareness. But I do get what you mean.

I'm burning a hole in my savings right now but I know after I finally get new residency and hopefully insurance I'll look into it. Thank you for your continued advice on this. Let me know how the process goes for you.

How does it "hold back" awareness?

What do you propose people do instead? They already don't listen. I suggested on here, a long time ago, tinnitus researchers have to pressure governments. Governments only listen to those in the health field and even then, the extent that they listen is in question.

Who supports tinnitus sufferers the most if anyone? It needs to be those in some medical field. Maybe wealthy people could help such as celebrities but I think everyone can agree, they practically do nothing. Nothing has changed with their influence so why do you think "patients" being honest with their doctors spreading awareness will make any kind of difference?

 

[pdot]

Hi, I am also desperate to kill myself. I am only 21. I have tinnitus now, and possibly forever, who knows, but I can't wait that long. I want to die somehow. Maybe overdose. I don't know. I've never done it. Or assisted suicide, would they even accept me? I contacted them. Let's see.

 

[Mister Muso]

Venting, I'm sorry.

Nights are so very hard. The low hum returned, that's hellish and it's been present longer than ever. I'm starting to think that it's staying. It perfectly masks the bilateral high pitched tinnitus in my left ear, but in my right things got crazy. Developed a new windblow sound which comes and goes, and the normal high pitched sound went haywire. It's sharper, shriller, louder, more metallic.

What's good to one of my sounds, sets off the others, it's a can't win situation. Last time I had the low hum, I didn't have the high frequency sounds yet and now sometimes feels like my head is about to explode.

In my country, COVID-19 is raging after a pretty mild but economically devastating first wave and I'm extremely worried about my family. I only care about myself as far as tinnitus goes, just don't make it worse, but I'm worried sick for my family.

My 1 year anniversary of tinnitus is coming up soon and although I saw small improvements that I'm grateful for, overall I still can't cope and still feel that tinnitus ruined my life.

I too have multiple tones. What helps one, makes another worse. The wind-blow sounds at night are the worst and getting louder and more persistent, every time I move or yawn.

What's helped me more than anything is mindful breathing. I have stress-related breathing difficulties since a bad year 7 years ago, which stopped overnight in 2016 when I got a promising new job, then returned in 2019 when I got tinnitus.

I found that taking slow deep breaths through the nose from the diaphragm not only send me back to sleep in minutes, but they also dampen down my wind-blow sounds to almost nothing whenever they have flared up.

I'm off the hardcore sleeping tablets and onto a herbal concoction of valerian, passion flower and hop strobile (Sleepeaze from Boots the Chemist, if in the UK).

 

[Kriszti]

Hi, I am also desperate to kill myself. I am only 21. I have tinnitus now, and possibly forever, who knows, but I can't wait that long. I want to die somehow. Maybe overdose. I don't know. I've never done it. Or assisted suicide, would they even accept me? I contacted them. Let's see.

Please, don't do anything rushed. If I saw it correctly, you have had the ringing for a week - two weeks? I don't want to lie, don't want to sound condescending, I know that the first days, weeks are a living hell with the fight or flight response, anxiety running high and the horrible ringing. But give yourself a chance, you are still in the very acute phase, I'm not saying that it will definitely go away, but you have a chance of it going away.

First and foremost, you need to find a way to get your sleep under control. I'm still struggling in that department, but there are natural remedies, masking, sleeping aids, ADs to help you sleep, they may work for you.

Give yourself more time.

(I doubt that VAD is available for acute tinnitus at 21.)

 

[pdot]

Please, don't do anything rushed. If I saw it correctly, you have had the ringing for a week - two weeks? I don't want to lie, don't want to sound condescending, I know that the first days, weeks are a living hell with the fight or flight response, anxiety running high and the horrible ringing. But give yourself a chance, you are still in the very acute phase, I'm not saying that it will definitely go away, but you have a chance of it going away.

First and foremost, you need to find a way to get your sleep under control. I'm still struggling in that department, but there are natural remedies, masking, sleeping aids, ADs to help you sleep, they may work for you.

Give yourself more time.

(I doubt that VAD is available for acute tinnitus at 21.)

I have been unable to sleep the past few days, I wake up with heart racing and severe anxiety. I sleep near someone because I'm scared. Yesterday I slept much longer by putting on this RESound app, music of nature. I pray my tinnitus goes away. I can't eat properly or do anything I used to. I'm so scared it will be there forever and how could I live with that. People who do are so brave.

Yes, I've had it for one week now.

 

[Kriszti]

I have been unable to sleep the past few days, I wake up with heart racing and severe anxiety. I sleep near someone because I'm scared. Yesterday I slept much longer by putting on this RESound app, music of nature. I pray my tinnitus goes away. I can't eat properly or do anything I used to. I'm so scared it will be there forever and how could I live with that. People who do are so brave.

Yes, I've had it for one week now.

I know how horrible this is in the early days and I'm really sorry that you are struggling this bad.

For you it even could go away or reduce to a tolerable level. I have a friend who had terrible whistling in her ear for 2.5 months and hers completely went away. There is a thread somewhere here about spontaneous recovery. You even have a chance that some underlying medical condition causes this and it can be treated.

Don't throw away your life after one week.

 

[Shizune]

@PeteJ, I'm not really suggesting anything. Not trying to argue, apologies if it came off as such. I was just clarifying a previous thing I said.

I do have to wonder though, when running through all the doctors and all that, have you come across any that try to push TRT? That's another worry I have; if tinnitus is mentioned at all, even if you play up the mental aspects, the off chance they *do* take it seriously, are you looking at $5000 towards that and 18+ months of "treatment" attempts. I guess one can be thankful in a way that not many offer it...

 

[Leila]

Panel 2: Doctor: "Just learn to live with it. I can't help you. Here's your bill."

As if you'd accompanied me to my doctors' visits - funny but also oh so very, very sad!

 

[Leila]

I have been unable to sleep the past few days, I wake up with heart racing and severe anxiety. I sleep near someone because I'm scared. Yesterday I slept much longer by putting on this RESound app, music of nature. I pray my tinnitus goes away. I can't eat properly or do anything I used to. I'm so scared it will be there forever and how could I live with that. People who do are so brave.

Yes, I've had it for one week now.

I'm sorry to hear about your tinnitus and how hard it is for you to adjust to it right now. It is a good thing that you have somebody offering love and support during these trying times. Please don't give up, I know it feels like the end of the world when suddenly there is a noise in your head 24-7 when all you want is a minute of silence, but what others have said before is true: it will get better. If you are near a forest or park try going for walks; keeping busy and in motion helps we with my tinnitus noises, so hopefully it will let you find a bit of relief this way, too.

 

[pdot]

I'm sorry to hear about your tinnitus and how hard it is for you to adjust to it right now. It is a good thing that you have somebody offering love and support during these trying times. Please don't give up, I know it feels like the end of the world when suddenly there is a noise in your head 24-7 when all you want is a minute of silence, but what others have said before is true: it will get better. If you are near a forest or park try going for walks; keeping busy and in motion helps we with my tinnitus noises, so hopefully it will let you find a bit of relief this way, too.

Thanks for your support

 

[pdot]

I know how horrible this is in the early days and I'm really sorry that you are struggling this bad.

For you it even could go away or reduce to a tolerable level. I have a friend who had terrible whistling in her ear for 2.5 months and hers completely went away. There is a thread somewhere here about spontaneous recovery. You even have a chance that some underlying medical condition causes this and it can be treated.

Don't throw away your life after one week.

It is much more tolerable in comparison to what I've read here. I can't hear it accept when I sleep. I used ReSound music app and it blocked it out completely. It has reduced today. Except I can still hear it faintly. Thank you for giving me some more strength and hope. I think less anxiety and stress has helped. I also am getting a hearing test done today to see if that is the cause or not.

 

[Orions Pain]

So tired of this guys. The H pain eating away at me, I feel like I'm living in another world. The isolation is so depressing too

 

[Jrblovsky]

Most neuros accept a CT scan as an alternative. CT scans are safe (aside from radiation). Can you just get that?

I ask about this as well and the CT scan is not nearly as detailed and useful as the MRI for soft tissue. If you have bone or joint issues the CT is okay. For blood vessels, nerves, etc you need an MRI. I just had one done here in Detroit and I was nervous as hell. Fortunately it went alright.

 

[Orions Pain]

Most neuros accept a CT scan as an alternative. CT scans are safe (aside from radiation). Can you just get that?

The point is I don't even need brain imaging. Even if I have the CT I'm 99% sure it will come up clear and the neurologist will always insist on the MRI for more detailed imaging. They are clueless so they will use whatever excuse they can as a crutch.

I know exactly what would happen. I'd have a brain MRI for no reason besides ruling stuff out. It will come up clear, neurologist says she can't help and to continue with my meds (which I'm already taking) so it will just be a pointless worsening. I've had a CT done of my sinuses already.

 

[shelbynn]

Well folks, this is it. Every single night the tinnitus screams out of control. It's fine during the day. But it's like the second the sun goes down it ramps up to unbearable levels. I just took 300 mg of Gabapentin, 1 mg of Xanax, 10 mg of Nortryptiline and I cannot calm down. I can't do this every fucking night. I cannot live like this.