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Brooks Was Here


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I have moments where my behvioral/emotional symptoms are under control but add some stress, a little sleep deprivation and that fact that I'm now in my mid 40's and have lost all personal contacts and at times I feel I have nothing left to live for anymore and my depression goes into a tail spin. This condition manifests itself, at least with me in waves but sometimes there are no discernable triggers. Maybe it's the thought that there is nobody doing anything about HPPD, that nobody cares and that this is how it's going to be for good. 

Tinnitis
distortions in my visual field
pain
depression

This is just a horrible, horrible way to live and I hate the cards I've been dealt. I'm finally going to see a psychiatrist as I don't know what else to do especially having tried a few medications that did little or nothing to help me cope. We simply have nobody in our corner bringing this condition to the national stage. I was hoping 5 years into my 15 yeart sentence that awareness and education into HPPD would be firmly established but it hasn't. That would have paved the way to research and motivate clinicians to direct some focus on this horrendous, life destroying condition. I can't tell how long I'm going to last like this. It's the lonliness and isolation that effects me the most as I used to be a very social person. I miss life, miss living and all the things that come with a rich fulfilling life; family, friends a home. I have virtually none of those things now and unless something miraculous happens with HPPD I don't know how I can live while being starved emotinally and being tortured mentally. That's whay HPPD is for me. 

Oh wait, I just did the math, I've had HPPD for 17 years, 17 long painful years of being a shambling mound, a mental train wreck and emotional catastrophe. 17 long painful years of waiting for a miracle and it hasn't happened. The only test that shows any abnormailities is the QEEG? That means to me that all options haven't been exhausted because they haven't been tried and at this rate, help will never come. I can barely, barely function at work and paying bills just to eat and have a roof is not a life. For 17 years I've been nothing but a burden to my parents after contracting HPPD. Prior to that the world was my oyster. I miss the old me. He was fun and super cool; could be the center of attention sometimes or just hanging out with the crowd. He was a hard worker, loyal to his friends and the people he loved. An adventurer who loved to travel and see the world, experience different cultures, try new things. Deeply interested in languages, eastern philosophy, politics and the sciences. Was very athletic and enjoyed pushing his body to his limits. Basically he loved life and did his best on whatever level he could to make a difference.

That's my HPPD eulogy. I could fill content that would make War & Peace seem like a short story both pre and post HPPD but if I"m lucky enough that will come at a later time. If not, may this post serve as a warning to you newcommers. Let is serve as a means to motivate you to band together and do something about HPPD before your ability to be productive is so hampered as it has become with me. Find a way to make a difference otherwise you sadly might end up like me; friendless, penniless, sick and alone....

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Be happy you have no contact with this disorder you dont have to go any were anymore. No birthdays, no big parties. You have to deal with hppd because you cant be social anymore you have to be happy about not going out. Its too stressfull.

We are in the same boat as you man, if i didnt had hppd i would have been in Amsterdam drinking and Gambling. Im happy i now enjoy a little beer behind my tv.

I dont have tinnitus so i dont know what thats like. I do have dpdr and the visuals things. Im not going to tell you to be positive i know its hard, but like your name says keep hope.

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I feel you on the social part. Though you are exactly a decade longer in this Journey. While i am younger, i do no longer believe that this will go in to remission by its own. Perhaps there will be a cure in the future, perhaps not.

It really is like a candle faded and another one started when i got HPPD. I miss the old me but at the good times i catch a glimpse of it. I will never be back to my old self since i cannot do all the stuff that was a part of me, the part that got me HPPD Btw.

But how do we manage? We co-op, try anything to get a better life even if that means starting a new one.

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The social thing is what kills me.
I don't miss hallucinogens AT ALL. 
In my drug history I was a proud recreational pot smoker and did hallucinogens a handful of times.
Had two bad experiences but I didn't know about HPPD.
One time on X and the other after eating way to many shrooms. 
It was stupid but didn't think I'd end up like this.

When it comes to a cure even a functional one I can guarantee it is never ever going to happen despite the breakthroughs in medicine in the near horizon because apart from Dr. Abraham and David, nobody cares. What these men have done are nothing short of phenonmenal but it's not enough and because of that there will be no calvary, no knight in shining armor nor magic pill, ever.

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Have you truly forced yourself to be social? You need to do it again and again and again... but it does slowly get better

 

I hid from the world for 3 years, then I just got sick of being controlled and defined by my illness. It is still intensely difficult to function at things like social events (benzos have made that better).... But the less stressful things, like playing team sports, I find can be pretty easy now on a social level. Make a bit of small talk about the match, get in on a couple of jokes and you are part of the gang. I recently moved back to the uk and have made 10 or more friends at football and that is just from sheer will and determination. Can I keep eye contact? Not well.... Do I get nervous for an hour or so before the game at the thought of interacting with people i don't know too well? Yep... Do I get paranoid that they might think i'm weird and don't like me? Sure, but that passes once i make a bit of small talk.

 

As with a lot of things in life,... The anticipation is often worse than the event. Get over that and you can claw some of your life back.

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The social thing is what kills me.

I don't miss hallucinogens AT ALL. 

In my drug history I was a proud recreational pot smoker and did hallucinogens a handful of times.

Had two bad experiences but I didn't know about HPPD.

One time on X and the other after eating way to many shrooms. 

It was stupid but didn't think I'd end up like this.

When it comes to a cure even a functional one I can guarantee it is never ever going to happen despite the breakthroughs in medicine in the near horizon because apart from Dr. Abraham and David, nobody cares. What these men have done are nothing short of phenonmenal but it's not enough and because of that there will be no calvary, no knight in shining armor nor magic pill, ever.

Hope1 i think you need to change your user name buddy boy, as the above doesn't sound hopeful at all.

I feel your pain man, i really do. However maybe conceal your negative thoughts a little as most of this community dont need to hear it

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Man I felt rlly sad after reading this as I can relate to everything u just said :(

I just made a post about my qeeg results in the main and general forum here if ur interested to see:

http://hppdonline.com/index.php?/topic/3995-qeeg-results/#entry24839

And also I know of a faith healer who can heal hppd ...go and see John of god in Brazil I plan on going back to see him in a couple of months time.

I fuking miss being social too and that fkn emotional connection to the world and other people.,,I feel emotionally starved and deprived every second it's complete torture

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Jimmyb84...
If I were less than forgiving, I'd lay right into you but let me impart you with a bit of wisdom....
It's bad enough having a neurological disorder that makes you mental but with the wonders of age come other problems and when you add them together, whether it's arthritis, diabetes or a combination thereof, you can bet your silly ass that the pain takes HPPD to a whole new level. But hey, what the hell do I know. Not to many 17 year survivors with severe HPPD around that could tell you different, eh? 

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Hope1

I really do feel for you man and I wasn't intending to shoot you down exactly.

We are all suffering with this hppd madness, that's why we are here, No? and like you i also struggle to manage another co-existing dehibilating condition.

Admittedly my initial comments lacked symphethy and I must apoligies for the coldness, however i try remain Hopeful which was meanly my point.

Hope is all we have

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