I'm Losing It. Not Doing Well.

[GregCA]

The more my vision faded, the brighter the flashing lights seemed. But as my vision slowly returned after months, the lights seemed to dim.

And if hearing and vision follow similar neural paradigms, perhaps it gives us hope that restoring hearing would help alleviate T.

 

[Bam]

I actually had something like that happen when I temporarily lost my vision a few years ago. It was like having a continual lightning storm that brightly flashed across my eyes. Sometimes I would see colors, as if it were fireworks.

There was no relief, it was worse at night when I tried to sleep. I felt like I was trapped in my own head, I could not see to drive, read, or work. I could not do all the things I had once enjoyed, couldn't go out with friends, couldn't even retreat to my imagination.

The more my vision faded, the brighter the flashing lights seemed. But as my vision slowly returned after months, the lights seemed to dim. I still have some flashing occasionally, and there is a risk I'll lose my sight again — permanently.

It was an awful experience but looking back I think it better equipped me to live with tinnitus. I think that experience helps me keep things in perspective for myself, too. A ringing in my ear that I can hear above everything is awful. Being blind and staring at nonstop flashing lights? No, no I do not want to ever endure that again.

Highly unlikely you would have to endure that. I suspect you would qualify for an end of life solution based on having T and blindness. And only the cruelest of s*** would question your decision.

 

[Tinker Bell]

Highly unlikely you would have to endure that. I suspect you would qualify for an end of life solution based on having T and blindness. And only the cruelest of s*** would question your decision.

Blindness and tinnitus do not qualify for assisted suicide in the U.S.

 

[Bam]

@Tinker Bell dignitas or Holland end of life clinics would definitely allow it. They've even started considering mental illness.

 

[RicoS]

Even weird when people say you have to deal with your T when in some countries they torture their prisoners with a constant noise in their cell. Would they eventually habituate also ... guess not because it is a punishment...and that is how T also feels... a punishment. Nothing good comes from T ...and if you say it did you perhaps did not lived a good life before T ...because without T I was a happy person helping others all the time.... and now I have just like most of you no friends left. Only

I actually read some utter plank online complaining about floaters and saying that 'it's far worse than tinnitus. At least with tinnitus you can just wear headphones all day long to block it out'.....maybe one day he might get a chance to see if his theory is right.

I had floaters and I had surgery for it on both eyes and they are 100 percent gone now. Yes floaters are as bad as T but at least you can get rid of it with a FOV (Floaters Only Vitrectomy). I was so happy when I got my vision back without this spiderweb and dots of floaters ruining my vision...but then 10 years later T kicked in..... I was looking for a solution again just like floaters....but when I realised there is nothing you could do about that anxiery kicked my down hard ending up in depression. Experienced both I think bad floaters is the same as mild to medium T. Severe T is much worse than floaters....but that is just my cup of tea.

 

[vermillion]

Do you have a support system (family, close friends) that can help you out?

@Ed209 @dayma @glynis @Kolisar @GregCA
Thank you very much for reaching out to me. I appreciate this very much.
My family can be very supportive but there is a limitation. They could not afford to help me with my debts. Eventually i will have to move back and stay with them, which will be very hard and depressing, given the fact that i am 34 years old. What is really difficult is the inability for them to understand my urge to die. They don't get it when i say to them that this is incurable and very limiting, even after all the doctors that i have visited. I have spent thousands of euros for medical tests, appointments and treatments. My parents are a bit uneducated in this aspect. They thing that i don't do anything about my condition so to get better, because i refuse to do anymore quackery stuff such as bioresonance, herbs etc. They even suggested to start going to the church and ask for God's help, like all the other people . I understand them because they love me very much and they feel so distressed since they cannot do anything to help. Watching me in this situation is extremely painful for them. My family is the main reason that holds me back from ending it, but this adds to me extra pressure, suffering and discomfort. It would be so confronting and relieving to know that they would understood this decision.

.because without T I was a happy person helping others all the time

This is another struggle. To prove that your depression is derived purely and ONLY by this ailment. I was a happy person before. I had my struggles like any other people on this earth, but i was ok. I had dreams. I had plans. I was doing actually extremely good. At some point (ironically) i was caught myself thinking how lucky i was to have this healthy body that never gave me any non-manageable issues. I really don't know what happened the last 16 months. It's a domino that i cannot stop. Ears, now vision.

As you and i have found out to my cost sensitive, 'creative' types who get severe tinnitus are literally the most f***ed people on earth in terms of suffering. This is hands down the worst affliction we could have got. It's like a targeted assassination of our entire being. Like you my days and nights which were previously infused with flights of fancy, are now entirely consumed by suicidal thoughts. To go from loving life and looking forward to each day to a permanent state of wishing it would end is unbearable. All sorts of dreadful thoughts that have never even entered your head before being struck by this, become permanently lodged there, taunting you. Like your mind has been hijacked by a madman and the only way to get him out is to sabotage your entire existence. What hope does this leave you? None. It's like we've been backed in to the most horrendous dingy, dark, damp, lonely corner of hell.

You speak for many of us when you say it's not just the 'noise' it's what it does to our spirits. It completely turns out the light and reduces you to a shell of your former self....... And the cherry on the top is that absolutely none of your family and friends can even glimpse what it's like and are convinced all you need to do is 'get on with your life.'

It's like desperately screaming in to thick glass wall that separates your from everything you once knew.

Dear @Bam,
When i read the above i burst into tears. I want to thank you very much, because it may be the first time that someone understands and describes so much what i experience and what i feel. I wanted to pm you but you have de-activated this feature, so i write this here. Allow me to print this text of yours, as i want to include this in a diary that i plan to leave to my family for the time i decide to end this. Thank you.

 

[Bam]

@vermillion I feel your pain so deeply. I've not suffered for as long as you with this but as my posts show I still know only too well all the anguish you feel and what seems like a total disregard of the rest of the world to our plight and all that this affliction has taken from us. I know it's hard to take but your family will never understand your urge to die. Not because they don't see your immense suffering. They do. Only too clearly. As do mine. It's not indifference. It's the exact same desperation you and I feel because they love you so much. We desperately want rid of the noise and they desperately want rid of our suffering and they cannot achieve it. We've all come up against a formidable enemy and everyone is working toward the same goal with such emotion that everyone feels ravaged by it. The deep frustration that all the love and money and hope and prayer will never get us out of this, but let's hope together today that time, fortitude, patience and strength might see us to a place where we can at least glimpse a new horizon, some sort of future. I understand your desire to go, I of all people will never belittle that. I also honour your struggle and the immense strength sapping courage of the daily battle you've been engaged in for all these long months. But I can see like me, what a light you once were in the world and I hope with all my heart you choose to stay in the war with me and keep fighting those day to day battles and that our lights one day start to shine again. ......Stay with me brother. For that's what we are now.

 

[RH36]

I wish you the best of luck in coping, vermillion. Your current situation sounds horrible.

Would you mind briefly describing your vision problems? My main health issue is vision related and I'm curious as to what you might have.

 

[RicoS]

@TheDanishGirl Perhaps in your profile you do not have the option on the start private messages or you block them because I can chat with everybody else. Please check that and otherwise ask the moderator. If nothing helps just ask your question here or give me an email address. For other people who experience bad Floaters ....there is a 100% cure already for many years, but a lot of doctors will not say it to you. I kept everybody informed about my progress and i see my posts are still on the forum (12 years old already)

https://www.tapatalk.com/groups/floatertalk/i-had-fov-jan-27-in-leuven-by-dr-stalmans-t949.html

Take a look and get your floaters removed .... T is bad enough on its own already

 

[dpdx]

Even weird when people say you have to deal with your T when in some countries they torture their prisoners with a constant noise in their cell. Would they eventually habituate also ... guess not because it is a punishment...and that is how T also feels... a punishment. Nothing good comes from T ...and if you say it did you perhaps did not lived a good life before T ...because without T I was a happy person helping others all the time.... and now I have just like most of you no friends left. Only

I had floaters and I had surgery for it on both eyes and they are 100 percent gone now. Yes floaters are as bad as T but at least you can get rid of it with a FOV (Floaters Only Vitrectomy). I was so happy when I got my vision back without this spiderweb and dots of floaters ruining my vision...but then 10 years later T kicked in..... I was looking for a solution again just like floaters....but when I realised there is nothing you could do about that anxiery kicked my down hard ending up in depression. Experienced both I think bad floaters is the same as mild to medium T. Severe T is much worse than floaters....but that is just my cup of tea.

I have floaters and visual snow that I got from Severe T and H. let me tell you I would rather choose the damn floaters over the SEVERE H and T.

 

[Bam]

I have floaters and visual snow that I got from Severe T and H. let me tell you I would rather choose the damn floaters over the SEVERE H and T.

If I woke up tomorrow in total silence but so many floaters I couldnt even see my own **** i would be overjoyed. Because as Rico pointed out floaters are totally treatable and that was 10 years ago. If only T could be cured with a half hour £3k operation. One day it probably will be. Sadly too late for us poor souls.

 

[Bam]

@dpdx how you doing bud? I think you're having as tough a time as me so just wanted you to know you're not alone.

 

[dpdx]

@dpdx how you doing bud? I think you're having as tough a time as me so just wanted you to know you're not alone.

Suffering as always.

 

[Bam]

Suffering as always.

Ditto. Just reading that post about T volume and what it feels like. Unfortunately it seems you and I got a really s****y version of a really s****y disease. God knows how this all ends. I pray we get a lifeline at some point.

 

[dpdx]

Ditto. Just reading that post about T volume and what it feels like. Unfortunately it seems you and I got a really s****y version of a really s****y disease. God knows how this all ends. I pray we get a lifeline at some point.

Tell me about it
I am scared of my future. I am only 28...I didnt get a chance to do so many thigns I wanted to do...and I dont believe I will be able to do so because of T

 

[Bam]

@dpdx I'm sorry man I really am. It's a seriously heavy burden that none of us ever expected to carry.

I hope Vermillion has found some breathing space. I wanted to say peace but....well you know....we all know.

Doesn't it feel so absurd now that we ever worried about 'normal' things? Jobs, bills, relationships, a scratch on the car. God I miss those days.

 

[Wolfears]

@dpdx I'm sorry man I really am. It's a seriously heavy burden that none of us ever expected to carry.

I hope Vermillion has found some breathing space. I wanted to say peace but....well you know....we all know.

Doesn't it feel so absurd now that we ever worried about 'normal' things? Jobs, bills, relationships, a scratch on the car. God I miss those days.

I always used to tell people when my T was off the scale bad, that if the T suddenly stopped but at the same time my house burned down, I lost my job and my dick fell off, I would be the happiest bum (whom will never get laid again) on the planet, while living in a cardboard box under some bridge.
There was not a word of exaggeration in that statement either.

Once you get used to starring death in the face every time you get up, knowing that today might be the day when you will have to end it (not want to but have to), suddenly the things most of us would get all worked up before tinnitus feel so trivial and meaningless.

 

[dpdx]

and this is why we need a cure and not CBT/TRT therapy. IT wont work with people who have severe tinnitus.

 

[Wolfears]

and this is why we need a cure and not CBT/TRT therapy. IT wont work with people who have severe tinnitus.

CBT/TRT do have their place, but they are only half measures.
Yes, there is a good chance, that a tinnitus sufferer won't seek to end his/her's life anymore after a tedious round of CBT/TRT, but most people want more out of life, than not wanting to kill themselves every single day.
I would compare CBT/TRT to a wire coat-hanger one would use, when their muffler attachment points on their car fail in the middle of nowhere...use the coat-hanger as a temporary solution, until you get a chance to get to the shop for a proper fix.
Another problem is the whole forced positivity.
Positivity has to be genuine...it needs to come naturally from within...not the "do or die" kind, that one would develop under life threatning circumstances.
Forced positivity is therefore unstable at best, especially when coupled with self deception....the whole thing could come down like a house of cards with the next spike or any other stress situation.

I remember that somewhere I read an account of a person, who was able to convince himself that the loud debilitating ringing in his ears is actually the sound of calmness and joy.
I'm guessing that when faced with death, some people are able to perform incredible mental gymnastics, that are not far behind the Orwellian "double think".
I would compare it to a person getting hit over the head with a stick, while convincing himself that he is really just being caressed, but this analogy kind of falls apart since they would have at least couple seconds in between getting hit...but that is the closest thing I can think of.
With tinnitus there is no break in the torture...not even couple of seconds.

What I'm trying to say is, that the only real solution is indeed a full 100% cure..anything short of that is just a half measure.

 

[Awaker]

@vermillion How can I contact you ; I am from Greece too.. in the similar situation.

 

[dpdx]

I'll take my chances with the visual hallucinations.


But what if everything else they've learnt to live with and 'enjoyed' living with is take away, gone, completely destroyed?.....Then 'learning to live with' this God awful noise becomes a study in sado masochism nothing more, like choosing to spend your life with a vengeful little vandal who spends his days goading you and pissing on the remnants of your smashed up life.

Its crazy how my life turned 180 degrees, it is just mind blowinggg. I still cant process in my head how I went from a healthy 28 year old who graduated college, who loved life, was optimistic, etc to a complete wreck when it comes to health. Last year during this time I was happy as hell and I was like holy shit I am so excited to get a job (now that I graduated), buy a car, fall in love, go vacation, buy a house, get engaged, etc. I had it all planned out and I was like nothing can stop me now..literally nothing....hahaha well Tinnitus came along then it increased to Severe, got severe H, Dark eye floaters which cover my vision (left eye), Visual Snow, Insomnia, Balance Problems, and High Blood Pressure. In matter of months all I worked and hoped for fell apart. I am still in shock that my life pretty much went from amazing and carless to suffering and mere survival. I dont cry anymore, its stupid to cry for something that happened...this is my life now and I accept my disabilities/limitations and the fact that I will never be the same person who I was before.

 

[Bam]

....you get used to starring death in the face every time you get up, knowing that today might be the day when you will have to end it (not want to but have to),

I am still in shock that my life pretty much went from amazing and carless to suffering and mere survival...... I will never be the same person who I was before.

This is how strongly the ATA and the BTA tinnitus awareness should be presented. They need to get off the fence! On one hand trying to push for awareness and a cure and on the other publicising this whole 'it's a bit annoying but you learn to ignore it' spiel. They alienate the very people they're representing because they're too weak to admit that a lot of us live in permanent hell or are being compelled to kill ourselves! Just this week it looks as though we've possibly lost at least one person off this very forum to suicide. Several others like myself are living on the edge every single day.

Before T with my standard of health and modern medicine I put my life expectancy at say 90. Now I literally, no word of a lie, think my life expectancy is 2-3 months. That's a shocking statistic for someone who doesn't have a 'terminal' illness. Now Their argument is that they'll scare people. Good! Terrify them! Because if you don't then the endless noise in their head will.

 

[glynis]

Just this week it looks as though we've possibly lost at least one person off this very forum to suicide.

Bam ,I would not say this unless it was a fact but in that case im sure a statement would be put up by staff.
love glynis

 

[Bam]

Bam ,I would not say this unless it was a fact but in that case im sure a statement would be put up by staff.
love glynis

Hey Glynis. I did clearly say 'possibly lost' so not stating that as a fact, but sorry if it's been misconstrued. x

 

[Error404]

@Bam (Knoll? ;-]),

The BTA are indeed strange. There was a representative at my local tinnitus support group, and she started going on about how we can all mask it by hearing aids, listening to nature sounds, and being mindful etc. Then about 4-5 of us said that ours is unmaskable and 24/7. She didn't seem to quite believe us, implying that if only we had the right attitude it would diminish. But I don't see how, at least in my case, that's possible when I have an obvious physical cause (deafness) - unless she can restore my cochlear's to normal functioning the T isn't going anywhere! I found it all somewhat patronising. Better to acknowledge that there are people like us and that perhaps a more aggressive treatment approach is warranted than "being positive."

 

[Tinker Bell]

Hey Glynis. I did clearly say 'possibly lost' so not stating that as a fact, but sorry if it's been misconstrued. x

Yet why even speculate that we have lost "at least one member" this week? I have been on a thread where members speculated that a poster had committed suicide. Poster eventually showed up and was okay. Their spike and anxiety attack had resolved so they had not been frequenting TT.

ETA: Rather than speculate that a member has committed suicide, reach out to the moderators via a PM and ask about the specific member(s). They can then contact the member. If someone is suicidal, it would be good for a TT moderator to have a chance to reach out to them. If someone has committed suicide, perhaps a loved one will login to their account and see that we are concerned. Knowing that others reached out to your loved one can be comforting.

 

[Bam]

@glynis Also out of curiosity how are staff ever going to be able to verify such an occurrence?

Okay I'm being constantly misquote here so once again.....I said 'possibly' lost and I stand by it. This thread was created by someone who tried to personally message me saying he was putting my words in a suicide diary to his family. You all read that. I'll be honest it shook me up, I panicked, and tried my best to contact him and encourage him to stay alive. As far as I'm aware he's not reappeared. There is a tiny likelihood he's spontaneously improved so as I said I fear he's 'posssibly' gone. You can not argue with my logic on this.

 

[Bam]

@glynis sorry Glynis that was supposed to be for @Tinker Bell

 

[Tinker Bell]

@glynis sorry Glynis that was supposed to be for @Tinker Bell

I realize you said "possibly" but my question was why even speculate. I also cross posted with you and mentioned how they could possibly know. I have been on a forum where moderators reached out via PM. A family member than logged on, saw the PM, and responded. The moderators were then able to let our online community know. Sadly it's a community where this happens relatively often — it's not a tinnitus forum.

The author even mentioned in his post that he does not frequent here often. I sincerely hope he is well; but posting a vent then not responding happens often and is not enough evidence to suggest possible suicide.

Oh and the last time I pointed that out on a thread members were annoyed . . . and then the author showed back up.

 

[Bam]

. and then the author showed back up.

I sincerely hope so.