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Still undiagnosed after all these decades.......


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I originally found this site a number of years ago.  I was so emotional when I finally found a diagnosis for problems that have plagued me since I was 16 years old.  The following is my story which I have on hand for anyone that will listen..........

 

I am an American living in Spain for the past 20 years.  Around 12 or more years ago, I stumbled upon information about HPPD.  I am self-diagnosed.  I am currently in Tampa, FL waiting to get into a Veterans Dusl-Diagnosis program.  When I first found out that there was a label for what hell I had been through, I soon found out that getting diagnosed with HPPD would be a daunting task.  Before coming to the States this time (have been in the States since April 2 - Tampa since April 15).  While sorting through my papers (another daunting task for me) I came across something I wrote 9 years ago.  Here it is:

Intro-HPPD.txt
I have had HPPD since I was 16 years old, after taking LSD many times, my first trip being at the age of 12 or 13.  I began having multiple flashbacks.  One day, after smoking marijuana (unlaced) with a friend, I was walking home by myself.  As I walked up a hill, my body was going up the hill, but my mind was sinking into a pit (hell). As I approached the main highway at the top of the hill, I had full-on LSD symptoms, and a dire feeling of no returning from this.  When I got home, I asked my mom, "Mom, am I in hell?".  She responded, "Did you take drugs?".  Like I said, I was no stranger to brief flashbacks, but this was totally different.  I knew that I was in hell, and my mother really wasn't my mother, along with everyone else in this hell.  From that point on I had visual/auditory hallucinations 24 hours a day, and also the sense of tripping.  I became so paranoid that I left home and later joined the Army.  It only got worse, and I began seeing a psychiatrist who put me on Thorazine.  When I went oversees I stopped taking Thorazine.  I did manage to serve 2 of my 3 year enlistment.
I tried to lead as much of a normal life as possible.  I was deathly afraid of sharing my experiences with anyone, even my closest friend, my wife.  I self-medicated during this time with alcohol and drugs.  The label of being a paranoid schizophrenic has stuck with until this day.  
I sought help from psychiatrists and doctors, and was either labeled an alcoholic or drug addict with schizophrenia.  Needless to say, I have been through many hospital stays, and the professionals are skeptic, at least.
I am 52 now, and while on the internet in Spain, I found a site about HPPD.  I cried when I finally had a diagnosis (self).  I printed everything I could on HPPD and presented it to both psychologists/psychiatrists I was seeing in the Spanish Health Care System.  They were less than receptive to something they had never heard of, and probably thought I was trying to get some benzos.  They just don't have the time to research, and are very skeptical.  
Some of the main symptoms I have are, but not limited to -
Visual snow
Tinnitis (possibly age related or combination)
Light retention/sensitivity
Auras everywhere
Objects seem to move
Colors can be very dull or very intense and fluctuate
Floating patterns with and without color
DT/DP, etc.
I am tired of getting nowhere and now find myself looking for help from someone that is open and understanding.  I do not make these things up and wouldn't wish what I have been and am going through on anyone.
END

Last week I found a good article on HPPD from The New Yorker magazine.  I decided to share it with my extended family, as I have shared with them personally after the above self-diagnosis.  Even though they don't understand, they support me.  The following is the link I shared and commented on verbatim on Facebook:

I've had HPPD since I was 16..... in an out of shrink's offices, rehab, etc. Yet, after all this time, most mental health professionals have never heard of this condition. My hope is to shed some light to my friends and family of what I'm still experiencing at 61...... Hopefully, someone in the VA will listen to me this time......
http://www.newyorker.com/tech/elements/a-trip-that-doesnt-end

I went into VA hospital in Tampa on Apr 23-30 for detox only....  I am now waiting for a telephone call from the VA...  While in detox I once again tried Risperidone, with the same bad outcome.  I feel like jumping out of my skin, and have little hope that doctors in the VA will actually diagnose me properly - and I know they will think that I am trying to get something for nothing.  If I don't get real help this time, I'm not sure what will happen to me......

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Try to take klonopin you wil feel more relaxed if you dont recover after so many years i better to use it there is no choice the best way to cure psygocial its to sport or to go walking 2 hours 2 or 3 times a week after few months you wil feel better like i go swimming fitness sauna walking outside its helping great i have sishoprenia to buth now i am in good condition last 2 monts txn to sport we need postive energie with naturaly way buth you need hard work for it i search for 3.5 years and at least i make progress

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Try to take klonopin you wil feel more relaxed if you dont recover after so many years i better to use it there is no choice the best way to cure psygocial its to sport or to go walking 2 hours 2 or 3 times a week after few months you wil feel better like i go swimming fitness sauna walking outside its helping great i have sishoprenia to buth now i am in good condition last 2 monts txn to sport we need postive energie with naturaly way buth you need hard work for it i search for 3.5 years and at least i make progress

I think with the Veteran's Administration Dual-Diagnosis program - I'm spinning the same old wheels....  What I really need is referrals to doctors that will diagnose me.....  Currently, I'm in the Tampa, FL area.... but willing to travel outside state if need be....  any suggestions????

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