I'm Losing It. Not Doing Well.

[dpdx]

@dpdx and increased T. Again reduced blood flow in the ears. It's too busy going to your heart etc to keep you alive because it thinks you're being attached.....That is how messed up T is. It fries your entire nervous system. That's why there needs to be a cure. That's why it kills people. Period.

I knew that it destroys the brain and body. Last year during this time I was a Healthy 27 year old, year later I have severe tinnitus, severe hyperacusis, VS, Dark eye floaters, high blood pressure, balance problems because of HBP. I can only imagine what will happen next year, three years, five years, 10, 20, 30..... scary.....

 

[Bam]

I knew that it destroys the brain and body. Last year during this time I was a Healthy 27 year old, year later I have severe tinnitus, severe hyperacusis, VS, Dark eye floaters, high blood pressure, balance problems because of HBP. I can only imagine what will happen next year, three years, five years, 10, 20, 30..... scary.....

God only knows. I wish I could say you'll be fine but it's going to require some special kind of tough. And I include myself in that.

No word of a lie I'm sitting in a field by Brighton university that is next to a motorway and my T is screaming over the top of it. I'm sitting in this field with my dog while all my friends are working which I can no longer do because even though I'm still sharp and smart, I can't be relied on to get up in the morning and my mental health is all over the shop. I used to have my own business and 30 people working for me and now like you I can no longer even follow a simple TV show and I can't relax at all. EVER. You said it spot on

When I here friends whinging about problems at work I want to shake them and say wake the f*** up! But then I realise I would of been just like them. There is no way you can grasp the magnitude of severe T until it's too late.

 

[Jcb]

I knew that it destroys the brain and body. Last year during this time I was a Healthy 27 year old, year later I have severe tinnitus, severe hyperacusis, VS, Dark eye floaters, high blood pressure, balance problems because of HBP. I can only imagine what will happen next year, three years, five years, 10, 20, 30..... scary.....

I feel your pain man, you never know what will come tomorrow? T can be pretty unpredictable, as there is still a lot we don't know about it. Your T could lower by its self, it could go away all together, you just don't know what tomorrow will bring? I have floaters as well, they are absolutely horrible.

 

[dpdx]

What caused it to go severe?

I did a caloric test (ear syringing) and on top of that VEMP Which is 110db (they put electrodes on your cochlea). From then my T went from 2/10 to 9/10 and I developed severe hyperacusis on my right ear (the most tested ear), this was on January 15, 2018 and today is July 4,2018..I saw 0 improvement.

 

[jjflyman]

@dpdx However I would say anyone pushing 70 complaining of this can **** right off! You expect this sort of crap then.

Are you saying someone 70 should "suck it up" and not feel upset about Tinnitus?
At what age should we stop treating older people's medical conditions because they should expect problems?
I'm 58, should I "**** off" too? What age is the cutoff for sympathy?
Just asking

 

[Tinker Bell]

I did a caloric test (ear syringing) and on top of that VEMP Which is 110db (they put electrodes on your cochlea). From then my T went from 2/10 to 9/10 and I developed severe hyperacusis on my right ear (the most tested ear), this was on January 15, 2018 and today is July 4,2018..I saw 0 improvement.

They surgical inserted electrodes on your cochlea? That would have created a hole or holes in your ear drum, which could cause increased tinnitus. I am unsure how they would have reached the cochlea without a surgical procedure. It's well beyond the ear drum, not visual to the eye.

 

[dpdx]

They surgical inserted electrodes on your cochlea? That would have created a hole or holes in your ear drum, which could cause increased tinnitus.

nope, they placed electrodes on face and below ear.

 

[dpdx]

They put it below the ear so the sound can be emitted towards the cochlea...I hope it makes sense.

 

[Tinker Bell]

nope, they placed electrodes on face and below ear.

Sorry you said:

(they put electrodes on your cochlea).

Electrodes below the ear emitting sound toward the cochlea is significantly different than electrodes actually on the cochlea.

 

[dpdx]

Sorry you said:

Electrodes below the ear emitting sound toward the cochlea is significantly different than electrodes actually on the cochlea.

that's it..sorry about that, but it still caused further damage.

 

[vermillion]

If someone has committed suicide, perhaps a loved one will login to their account and see that we are concerned.

That's not always possible (computer passwords etc.)

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.

Hello Ban. I am still here. Still struggling.

I have severe tinnitus and those things do work. It all depends on the individual and their frame of mind.

I don't understand how they work. I had been doing CBT the last year. One session per week. It's all about to accept that you are disabled and that your life is not whole anymore. I do not understand how CBT can give me back my job, my friends, the ability to enjoy myself out, socializing with music, the ability to create, to play the piano again, to dance again, to travel freely, the ability to relax etc. CBT is just to facilitate the acceptance that you have passed to the side of illness.

This is how strongly the ATA and the BTA tinnitus awareness should be presented.

I suppose those organisations have to follow the "political correct" protocols.

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.

You didn't fit to her standard protocol that she had been trained for, so you are a misfeed and she would wish to get rid of you asap.

Conclusion: There is no actual help for those who suffer bad. It's a tragedy and a hellish fortune to inherit.

 

[glynis]

@Bam and members.
We lost a member a year or so ago due to another medical condition that was fatal and a family member contacted Tinnitus Talk and a thread was put up as he had passed away .
He was a lovely man and so if we did loose a member and Tinnitus Talk were notified then a post would go up .
love glynis x

 

[Wolfears]

@Bam
He was a lovely man and so if we did loose a member and Tinnitus Talk were notified then a post would go up .
love glynis x

Sorry to hear about that member passing,,but I'm pretty sure that notifying a discussion forum about someones death is a rather rare occurance.

Lot of these guys don't even have anyone to notify, or their family members are so completelly dismissive of the seriousnes of this condition that they have alienated themselves from the tinnitis sufferers, whom they most likely labeled as "whining weirdos, who won't get on with their lives", reinforced by the various press relases and propaganda, which is downplaying this condition to just a minor annoyance.

I'm pretty sure that the actual number of the ones we don't find out about is nothing short of frightening.
Just my personal opinion.

 

[Bam]

Lot of these guys don't even have anyone to notify, or their family members are so completelly dismissive of the seriousnes of this condition that they have alienated themselves from the tinnitis sufferers, whom they most likely labeled as "whining weirdos, who won't get on with their lives", reinforced by the various press relases and propaganda, which is downplaying this condition to just a minor annoyance.

This is why you won't here from my family.

 

[john paul]

I developed dark eye floaters, starbursts, and visual snow.

Can you explain what dark eye floaters and starbursts are?

 

[fishbone]

That's not always possible (computer passwords etc.)

Hello Ban. I am still here. Still struggling.

I don't understand how they work. I had been doing CBT the last year. One session per week. It's all about to accept that you are disabled and that your life is not whole anymore. I do not understand how CBT can give me back my job, my friends, the ability to enjoy myself out, socializing with music, the ability to create, to play the piano again, to dance again, to travel freely, the ability to relax etc. CBT is just to facilitate the acceptance that you have passed to the side of illness.

I suppose those organisations have to follow the "political correct" protocols.

You didn't fit to her standard protocol that she had been trained for, so you are a misfeed and she would wish to get rid of you asap.

Conclusion: There is no actual help for those who suffer bad. It's a tragedy and a hellish fortune to inherit.

I don't consider myself disabled, because I have tinnitus. I have not used CBT, but I have used and had benefit with TRT. Hey, I get where you are coming from. Tinnitus has changed my life and it is what it is. My old ways of life are no more, so I created new ways to enjoy my life. The name of the game with tinnitus is ADAPTING. It's never easy, it's not, but IT CAN BE DONE. I love loud music, I love dancing, I love parties. Unfortunately it cannot be done anymore.

In life we CAN adapt and We can change. As I say in my posts, we need a strategy to deal with life and tinnitus. We need a plan that works for us. This takes planning, guts ,courage but it CAN be done.

 

[Bam]

I don't understand how they work. I had been doing CBT the last year. One session per week. It's all about to accept that you are disabled and that your life is not whole anymore. I do not understand how CBT can give me back my job, my friends, the ability to enjoy myself out, socializing with music, the ability to create, to play the piano again, to dance again, to travel freely, the ability to relax etc. CBT is just to facilitate the acceptance that you have passed to the side of illness.

Spot on description of CBT.

 

[john paul]

One other thing I dont understand is why the hell aren't people taught about this. This is truly terrifying in all aspects and knowing that it can cause visual snow is scary. People need to be educated that this is a serious condition that can seriously damage an individual's life and reduce it to mere survival.

It cant understand it either. Its the only thing that really fucks me up, iv got over the regret, the self blame all this kind of stuff but i just cant get past the education/awareness part. I really feel let down, its hard not to get angry sometimes. In certain circles, like musicians circles yeah everyone knows about Tinnitus but thats because most of them have it. I once did a paint spraying course at college and the tutor really made it hit home about the dangers of dust and paint toxins. He just spent that 20 minutes really making it hit home about WHY health and safety is so important. But that was mainly dust and paints nothing to do with noise so it just wasn't on my radar but lets just say iv been a big fan of dust masks ever since..

 

[dpdx]

Can you explain what dark eye floaters and starbursts are?

This is a dark eye floater.

 

[GregCA]

I don't understand how they work. I had been doing CBT the last year. One session per week. It's all about to accept that you are disabled and that your life is not whole anymore. I do not understand how CBT can give me back my job, my friends, the ability to enjoy myself out, socializing with music, the ability to create, to play the piano again, to dance again, to travel freely, the ability to relax etc. CBT is just to facilitate the acceptance that you have passed to the side of illness.

I think you may be a bit confused as to what CBT is and what to expect from it. Please read more at https://en.wikipedia.org/wiki/Cognitive_behavioral_therapy -
It will not give you back your job directly, but it may give it back to you indirectly, if the hold back is due to irrational thinking. And in many cases, it is, which is why it is such a useful too.

But when the hold back is due to other reasons, CBT is not expected to help you: you will not be able to feel "no pain" when you stick your hand in the fire simply because you're "willing your pain away". It is not intended to do that, just like it is not meant to decrease the volume of T in your head, or reduce H.

The secret to reduced disappointment is accurate expectations.

 

[dpdx]

Are you saying someone 70 should "suck it up" and not feel upset about Tinnitus?
At what age should we stop treating older people's medical conditions because they should expect problems?
I'm 58, should I "**** off" too? What age is the cutoff for sympathy?
Just asking

Well If I was 71 years old and I got visual snow, severe tinnitus, severe hyperacusis, dark eye floaters...then I wouldnt give a damn because I know I would kick the bucket soon. I wouldnt care because I would know that I have achieved things in life I wanted to, like finding a great job, meeting the significant other, buying a new car, buying a home, getting a dog, kids, traveling, socializing, etc. Now the problem is when you are 21, 25, or in my case 28 ( got tinnitus when I was 27)... I just graduated college last year and as soon I was about to start living this happens. I cant do any of these things mentioned above as I have accumulated so much damage to my ears. My Tinnitus is a blasting loud sound combined with Severe Hyperacusis is a toxic combo, it prevents me from working and I have difficult time falling asleep how loud it is. I think EVERYONE who has T deserves sympathy but the most people who deserve it are people who hadn't had a chance to experience life. Imagine a teenager who is 17 getting all of these conditions described above vs somewone who lived a full life and got them at 68. There is a difference you see, but I still feel sorry for any human being dosent matter what age who has to go through this. I am just envious of older people who got it because I didnt even have a chance to live life (Spent years and years in college getting degrees), and then BAM! all that work wasted. Life with tinnitus is survival, everyday is a challenge with this...it pretty much robbed me of my life I desired to have.

 

[vermillion]

I think you may be a bit confused as to what CBT is and what to expect from it. Please read more at https://en.wikipedia.org/wiki/Cognitive_behavioral_therapy -
It will not give you back your job directly, but it may give it back to you indirectly, if the hold back is due to irrational thinking. And in many cases, it is, which is why it is such a useful too.

But when the hold back is due to other reasons, CBT is not expected to help you: you will not be able to feel "no pain" when you stick your hand in the fire simply because you're "willing your pain away". It is not intended to do that, just like it is not meant to decrease the volume of T in your head, or reduce H.

The secret to reduced disappointment is accurate expectations.

Thank you Greg. In general I count your lines throughout the forum. I know that you suffer greatly however you manage to maintain a reasonable spirit in this noise. I'm surely not expecting that CBT would affect my symptoms. I opted for CBT for the very same reasons you mentioned. Unfortunately I am still lost. I am deeply sorry that I can't get better.

 

[glynis]

@vermillion ,
White noise generators could help and your ears will have a better sound indoors and out for your auditory system to adapt to so less reaction from other sounds when your out and about.
Might be worth a shot!
love glynis