Suicidal

Depends how loud it is...

With what I have now it is perhaps of the worst on this forum...

Before it was milder (still severe by standards) hence I was able to get used to it but it took 3-4 years.

 

Thank you Daniel.

 

Will FX-322 help with hyperacusis? I am dying. My nerves are beyond shot.

How does one get multi tonal tinnitus, hyperacusis, pulsatile tinnitus, visual snow and menthol cold burning in various parts of the body. I have severe pressure in my right eye.

I am in hell. I’m convinced I’ve died and this is now my punishment. Thinking about my life 5 months ago literally makes me sick to my stomach. Like I can’t even imagine that I was ever happy or healthy. These conditions have absolutely consumed me. I’m losing my mind.

 

Me too please.

 

Have you ever dealt with noise reactive tinnitus? I have high pitch and multiple tones but the reactivity is really effecting me badly.

 

You have great compassion. Thank you, Daniel.

 

It is best for your sanity to wait for top line data before deciding if FX-322 has the potential to impact you or not. In the mean time be optimistic.

Many “edge case” symptoms, such as facial pain in hyperacusis, are quite consistently reported and are not actually edge case symptoms. You are probably not an edge case. This thread proves that there are many severe sufferers and you are not alone. Please hang in there best you can!

 

Pulsatile tinnitus has a shorter list of differentials than other types from what i understand. Have you ever had that specifically worked up?

 

Depends what you mean by "reactive"...

 

It’s intermittent and bothers me the least out of all of the other things.

 

Sure but it is possible it could give you a clue as to your other causes.

 

Maybe a blood vessel is compressing my nerves and causing my other issues? That is a good point, I should look into it.

 

I mean reactive in the sound sensitive tinnitus variety. Where tinnitus becomes louder even when low noise is heard. I used to have reactive to loud noises, but now it's specific low volume stimuli and noisy places. Often white noise sources. For me it could be a computer fan, microwave or washing machine. Sometimes these noises can spike my tinnitus to intense levels and can take hours to comeback down. It scares me since it's possible any spike could end up permanent. I've seen people have it here but not too many that resolve.

 

Thank you and I hope it does help us. However I personally hate to think futuristic medicine is the only help for me. It makes me feel disabled and hopeless in the short term. I need to find a path forward that doesn't require researchers hitting that biotech lottery. It feels we've heard these medicines are 5 years out for far too long.

 

I completely understand, being at the point of giving up. I’m fairly new to all of this, but certainly have days where I wonder if life will get better. It seems like every time I feel a little better about the tinnitus, I get a new tone, or something changes, and change seems to equal bad in regard to tinnitus. Even when good change happens, it seems to get a quick follow up of shit. And the not knowing ANYTHING. Will it get worse, will there be a cure, did I do this to myself, or just dumb luck? My mental health is something I’ve worked on for many years - and this has blown it to pieces.
Every moment/day, spent agonizing over this, is a moment taken from my kids and wife. Before the tinnitus set in, I remember how much I was enjoying my life. It seemed like everything was coming together. Many years of hard work and now I get to ride the wave a bit. This crazy sound in my head is just insulting, and robbing everyone here of peace. It’s not right.

My wife has been pretty good about understanding, but I can already sense the “oh we are talking about this again” or “he’s stuck in his again”.
Here’s why I think it’s worth fighting (at least right now). I have three beautiful kids that need me. They need me to be present. And it’s my job to figure that out. But all today, I’ve been thinking, I would do anything for a way out of this. And that’s also a reality.

And then the guilt. I have a friend with Parkinson’s disease. Has the electrodes implanted in the brain just to live a semi normal life. That person fights everyday. Am I that weak? To even have this thought in my head?

I guess... but right now I have several sounds going from low to high in my head and I would do anything to make it STOP. So I will sleep, and probably wake up at 3:30am - like clock work - evaluate my situation... do another day. Hang in there everyone.

 

@MusicTeacher

I know what you're talking about with your friend with Parkinson's. However you shouldn't allow that to diminish how you feel. The great irony about tinnitus - despite all the noise we hear - the suffering is in silence to those around us. They only know by us telling them. And boy can I sympathize with your family situation. It's taken it's toll here too talking ad nauseam about it. Patience is wearing thin so to speak. It's hard to blame them, I might too not knowing how bad it feels. It's interesting you mention 3:30. That's the same time I make it to now too. It usually takes some help to get more.

 

My eyelids are literally on fire tonight! My face has felt sunburnt for the last week or so. I am beginning to think I am on the wrong forum but all of these problems started with tinnitus. WHAT IS HAPPENING TO ME.

 

Same boat. I have serious hearing loss, loud relentless tinnitus that does not mask and have hyperacusis that's not destroying me now, but was so bad some time ago I had to quit my job and couldn't handle a fork touching a plate... still can't handle that sound and anything slightly loud. I woke up one morning and felt a stabbing pain into my brain... I couldn't sleep when the tinnitus hit and took benzos for the first time in my life. I self prescribed and was doing 60 to 90 milligrams of valium a day. I can buy them up the street for a couple dollars. I didn't know you can't just stop taking the things. I learned the hard way as I was having delirious hallucinations. I read up on tapering and Dr. Ashton, and kicked the blues to the curb.

I am clean now and lucky my condition lets me exercise. I fucking push myself so hard and fight like a possessed demon to turn my life into something new and deal with undoing the brain damage.

I no longer feel suicidal but know that with one accident I will be joining Allan. It's weird to claim or identify with a thread or space on this forum, but I feel everyone here is my family. We suffer beyond most people's comprehension. I am going to continue to fight everyday and pray and hope that people on the suicide thread can have a little luck, that glimmer of light... that small lessening of their pain so that they can have real hope and even perhaps a smile, a laugh, a hug... a bit of joy. Same boat brother Capstan.

 

Daniel such an amazing post. I am so sorry to hear the side effects and the pain it caused. I never thought I'd be in this thread but it's gotten so bad for me. My tinnitus sounds have gotten so loud and intrusive. I have sound sensitivity and reactivity. I can't stop listening. I have spiraled so far out of control that I don't know how it will end. I certainly feel it's not going to get better and feel everything I've tried has worsened my tinnitus. I wish I had your warrior spirit. You are a brave soul. I struggle though. I really miss my old tinnitus, it's really sad how a few missteps can undo everything. I am sure you know how this condition pushes against these moments. It is relentless in its pursuit to cause us pain. However for at least this moment you have given me a smile and it helps.

 

3:30 here as well...

 

Yup woke up with it screaming at me.

 

I'm having a very difficult time with my tinnitus right now and spending a long time dearly wishing I could go to sleep and not wake up.

 

Can't it be some form of fibromyalgia? With all the pain? And tinnitus is a weird symptom of that? I know, it's not helping, but you are in my thoughts, and I really want you to get better.

 

Hi @dan

I found a few times you mentioned having reactive tinnitus a long time ago.

https://www.tinnitustalk.com/threads/reactive-tinnitus-is-real.6962/#post-78191

https://www.tinnitustalk.com/threads/reactive-tinnitus-is-real.6962/#post-78205

Did yours improve? Was it similar to what I described above? How did you cope? Any progress?

 

I was up at 3:40 today. Wonder what it is about that time....
I woke to my self inflicted, new, very low drone. Started while hanging my head upside down (stretching). Or, maybe it just brought it to my attention. Who knows.
I guess side sleeping was one of my simple joys in life- now gone because both ears scream against the pillow. It’s the little things you took for granted, like sleeping, focusing, being in the moment, silence.

@Capstan I get what you’re saying. It’s the silent disease. No one gets that you have a symphony of nonsense running in your head while they enjoy their peace. I guess I’m not comparing myself to my friend as much as wondering, why I’m not stronger. I thought I was stronger. Some days I am. I guess it’s about keeping some hope alive.

 

I can sympathize on being stronger. I want to share with you a little about my situation. About a month ago I couldn't accept the new level of noise and a new tone. I ended up doing much more damage to my hearing trying to find a fix. Doctors and doing sound therapy. I now have an orchestra in my head. It also gets louder with low noise (reactive). I also have a glassy sound that trails most sounds. Then when I sleep it gets louder. Looking back, I should have accepted where I was at that time and moved on. I see you have 3 kids too. I am in such a bad place that I might miss out on my kids journey. If you are just having difficulty with tones and some loudness, please try to accept it because it can get worse. I was waking up at 3 am prior to this new worsening, largely because of anxiety and the newness. Please know that tinnitus knows no limits. Feel lucky if you don't have a comorbidity of these different issues (hyperacusis / reactive tinnitus). It's really a place of no return once you get here. I hope this helps to make you feel fortunate and start to make peace with your tinnitus.

 

I can’t live with this anymore. Nothing relieves me. Absolutely nothing.

 

Can you kill me too?

 

I have no idea fibromyalgia is usually muscle/skeletal pain and is mostly in your body.

My burning is concentrated in my forehead, eyelids and jaw. I was out in the sun for maybe a few minutes today and my scalp felt so incredibly sensitive to the sun. It’s like I have a permanent sunburn. What could possibly cause this.

 

We only have to wait 10 years for inner ear rejuvenation in which it's unknown what it will actually do (for us), if anything.