hppdonli

My Secret Disorder (it is not HPPD) that I must discuss to end my misery.

6 posts in this topic

I wrote this a stream of thoughts. It will be disorganized, but it would never happen if I didn't do it this way. At least, it would not happen now. It is important I get it out, and that you realize the sentences may be inverted or a section missed and picked up. I did not go back to edit it, and you will understand why.

 

 

I am David Kozin, and I want to let something go so I can succeed. If I do not work on this every day, I will never reach my potential and remain in hiding. Writing this may or may not be a good idea, but so far not saying anything causes me hours of stress each day that incapicitates me so much that I won't turn on a computer or leave the house because the anxiety is so high.

 

I am sure what I am going to say is not a surprise to some of you. However, I feel it is very important to mention and to discuss it publicly because I have reached the point where I am dedicating as much energy to managing my symptoms as I once did to HPPD. 

 

I have ADHD. Unfortunately, it is sad that I must validate myself more than this, but the overdiagnosis of ADHD and lack of understanding of the disorder warrants it. Additionally, if you only see my history as bullet points in terms of my few but notable accomplishment you will think I am joking. If you have been with me since 1998 on this or one of the previous versions of the message board, it will make sense and purhaps you knew I had it before I did. Let me start the validation.

 

 Without hesitation, I can say that ADHD has been the most debilitating disorder in my life. Attention disorders are associated with HPPD, but my ADHD began as early as I can remember. I always knew something was wrong, but until extensive testing, the results of my qEEG re-examined and an honest look at my life with family and friends did I know exactly what it was. I am deciding to talk about it because I have added an additional handicap to my success and with being fair to this community and my self but not talking about it and letting the problems associated with it pile up until I had to face it seriously or I would probably be in a much worse place right now.

 

 

In 1998, Dr. Abraham sent me to Dr. Frank Duffy for a Quantitative EEG (qEEG). The finding on my study was very unusual, but we didn't look at it as diagnosing any other disorder other than HPPD and to rule out other disorders that can cause visual symptoms. 

 

WHAT IT SHOWS from my report:

 

"Sprectral data are surprisingly abnormal with consistently excessive fronto-central theta.

 

In comparison to an age appropriate normal database theta is increased by 3.49 SD broadly in the frontal and central regions without asymmetry.

 

n comparison to an age appropriate normal database, Theta is increased by 2.56 SD bilaterally in the fronto-central region with no asymmetry.

 

The front theta raises the possibility of a mild encephalopathic process as well."

 

WHY THESE ARE VERY ABNORMAL RESULTS:

 

THETA IN FRONT CENTRAL AREA IN EXCESS WOULD HAVE PREDICTED WITH 95% CONFIDENCE ADHD DIAGNOSIS

 

"After a very consistent and growing body of evidence, The FDA approved qEEG for testing ADHD along with clinical evaluations. It is the best marker that I can use to "prove" ADHD just like we use it to prove our HPPD. "

 

"Current research findings suggest that most children with ADHD display fairly consistent EEG differences in brain electrical activity as compared to normal children, particularly with respect to their increased frontocentral theta (4-7 Hz) activity during primarily resting state conditions. "

 

"A recent meta-analysis of 9 studies with a collective sample of 1,498 subjects found an effect size (ES) of 1.31 (95 % confidence interval [CI], 1.14-1.48) and an average excess of 32 % in theta band power for children with ADHD relative to controls"

 

 

ALSO:

 

 

I was sent for a 6-hour neurocognitive evaluation at University of Michigan. The results demonstrated expected measures in areas except attention. I scored in the 5th grade level for writing an essay with handwriting. Measures of attention scored in the severely imparied range and in the 4% for ADHD. 

 

The first book I completed (Read from start to finish in any manner of time) was in 2009 after starting medication and work with a learning specialist and counselor. 

 

My symptoms have created extreme levels of chaos in my life, and I consistently underperformed in academics except in the intense cases of hyperfocus on areas. I was the highest scoring student in math in an 8th grade evaluation, but never received a grade higher than C despite my love of math. The process of working "through" problems sets quite literally makes me so anxious that if asked would I rather work through a 100 question basic multiplication paper and do the problems in order (example: 3 x 32 =) for a Class Grade or just receive a C+ and not do the test... I would feel less anxious about an automatic C+ than going through the process of working 100 problems, despite my ability to do them. 

 

I almost did not graduate high school because I received a D- in American History (the most basic course that ALL students pass based on an elementary knowledge of the topic [e.g. What are the three branches of government?]. I also received a D- grade in mandatory Home Economics. The balancing of a check-book, budgeting and how interest is calculated.

 

Yet, I was voted the National Honor Society President of my class. I had the raw skills and ability to hyperfocus on a new and exciting topic for a day that to save myself from failing a Math course in 1991 I took one day too learn the C language with a computer to write a program to use logic for diagnosis infectious diseases based on Y or N questions from a book. A full 20 pages of single spaced code. After that, my interest in programming was challenged because for some reason (I just can't explain it) I was UNABLE to move forward with learning programming and reading books on the topic. 

 

I wrote the software for the Depersonalization research in 2 days on self-medicated (without doctor approval) Adderral learning PHP and writing an extensive database application to pass approval of Mount Sinai School of Medicine's IRB. It worked. 

 

I have over 10,000 unread e-mails, mostly information e-mails, but the level of panic when I try to address this is overwhelming despite knowing that not reading the e-mails would be worse. 

 

I have over-drawn checking accounts for about a total of $30 x 100 = $3000 dollars in charges and five closed bank accounts. 

 

What is most important, is that just as much as people are unable to comprehend seeing what we do or how a person so underweight that they risk heart failure yet consider themselves fat or why a person with OCD must go through a routine with no basis in reality or logic and despite them knowing this to be true... they still have to do it or the anxiety and feeling inside is so distressing that it impairs life.

 

 

Nobody wants to operate like this. I didn't want to fail out of two colleges. I didn't want to not answer e-mails. I didn't want to pay $3,000 for maybe 500 dollars of items. I never wanted to miss doctor appointments, meetings with anyone, classes including when the Final Exam would be.

 

ADHD was not understood or on the minds of teachers during my educational development. I was called lazy, self-endulgent and my parents would punish me and judge me for not completing a basic chore or remembering a time. Never, did I get in trouble or disciplined for an action where I flagrantly attempted to make another person's life more difficult or harm or do harm to anyone. I was the gold star behavior student, but I would have teacher's in tears yelling at me for not completing assignments that they knew "I could do." 

 

Well, at the same time my self-esteem was destroyed at its heart. It has been for so long. Having started this message board and knowing it has helped so many is the only comfort I have when I start to think that my life has been pointless. 

 

I have been without health insurance for three years and living a chaotic life during them. I ended up in Iceland in a tent for 3 months, which was an amazing experience but everything I intended to do never materialized. I have yet to finish even a computer game to completion, but like Flight Simulators or a game with a 10-minute goal to win or lose. I master skills to create something, but implementing them is where I struggle every day. Every day, I punish myself further and finally had to be very forward with people about my condition and my attempts to work on them behaviorally in an intensive way and also with medication. 

 

I recently decided to reduce my klonopin dose, which cascaded into a disaster of monthly withdrawls, days where I would fear opening my computer because hearing the sounds of the emails that are there would bring me to a full panic. I have 30 phone calls I have not answered, but would love to, but fear that my delay in actions or missed appointments would be on the other end. Yet, I can't go foward with what I know I can do, what I have already done that to a normal person would be completed in a few days. I have a research study for Characterizing all of the vision disorders that was approved by Harvard's IRB, and not executed for different reasons, and it would help so many to be used but putting it in a program desite the benefits even I would selfishly get still make it a challenge. 

 

It took me 7 months, two of those months consisted mostly of anxiety over writing my HPPD story for a major British Journal. My girlfriend at the time was very understanding, but I could see how it upset her to see me struggle over something that I literally completed in less than 30 minutes when I was asked to do it against after I passed my deadline and removed myself from a short description of my HPPD. So much wasted time worrying and the anxiety over such small tasks that I can do, but just need to work with professionals and friends and family, but most importantly myself to find ways to work and live up to my potential. I have done it once, when I began medication and had a four person professional support group at college that let me read my first book and worked around my challenges, learnined cognitve ways to get past issues and have students actually say they wish they had my work ethic, which is a statement that brought me to tears when I first heard it. 

 

So, I have 10k emails. I am going to have someone assist me on deleting the mass of it (anything from companies/etc) and to reduce it down to about 5 emails that are really important. 

 

I am going to ask for help to put the survey together with Limesurvey for us to get it ready. 

 

I have put together so many articles on volunteer management, the laws both domestic and internation, to the point of nausea including having the system to let people volunteer even if as simple as saying, "Hey You, could you take my 130 article database of HPPD papers already in a word document and look for new ones on medline and post them?"

 

I now have Medicaid because of an extension and because of "Obamacare" it comes with a health plan like everyone else and it begin the first of next month. Specialists in ADHD advised I would qualify for Social Security Disability, but I know when I had the write treatments and if I can just delete this garbage without fear and simplify life that I can excel for sustained times with medication and a lot of effort on the skills and letting others help me.

 

I am going to send this out, and ask nothing from anyone but help explain my biggest challenge and that an unanswered email was not because I did not care and in order to move forward I will need to set aside the massive amount of data and thousands of files in folders lost to me and reduce to the basic goal right now of a executing all of the things I have learned and prepared for to let others join in making the Society of Perception Disorders a reality and not fear help and let others decide how they will judge or perceive me. 

 

Thanks for reading this far, I could not have done it. I started writing this at 11:30 and now I am sending it.

 

I am returning to my normal klonopin dose, because this increased anxiety is unmanagable and a horrible decision that I made to do at this point (reduce from 3mg to 2mg) which I have tried off and on and i have been taking 3-4mg of Klonpin daily since 1998. This is not the time to stop. 

 

I will be in a few day radio silence, but will contact key individuals that I have promised to be in touch with and move forward.

 

 

Sincerely,

 

David Kozin

 

 

 

Here is my internet browsing history during that time:

 

2:26 PM

theta power adhd severity - Google Search

www.google.com

 

 

2:26 PM

theta power adhd severity - Google Search

www.google.com

 

 

2:06 PM

file:///Users/thunderbolth/Downloads/d912f50858005f3c01.pdf

file:

 

 

2:06 PM

A meta-analysis of quantitative EEG power associated with attention-deficit hyperactivity disorder. - Google Search

www.google.com

 

 

2:05 PM

A meta-analysis of quantitative EEG powe... [J Clin Neurophysiol. 2006] - PubMed - NCBI

www.ncbi.nlm.nih.gov

 

 

2:05 PM

Clinical Utility of EEG in Attention-Deficit/Hyperactivity Disorder: A Research Update

www.ncbi.nlm.nih.gov

 

 

2:02 PM

Clinical Utility of EEG in Attention-Deficit/Hyperactivity Disorder: A Research Update

www.ncbi.nlm.nih.gov

 

 

2:01 PM

Clinical utility of EEG in attention-defic... [Neurotherapeutics. 2012] - PubMed - NCBI

www.ncbi.nlm.nih.gov

 

 

2:01 PM

Specificity of quantitative EEG analysis in a... [Psychiatry Res. 2002] - PubMed - NCBI

www.ncbi.nlm.nih.gov

 

 

2:00 PM

Clinical Utility of EEG in Attention-Deficit/Hyperactivity Disorder: A Research Update

www.ncbi.nlm.nih.gov

 

 

1:58 PM

theta eeg Standard deviation to be significant - Google Search

www.google.com

 

 

1:58 PM

theta eeg Standard deviation to be significant - Google Search

www.google.com

 

 

1:58 PM

Understanding Brainwaves | Center for Attention Deficit and Learning Disorders

centerforadd-az.com

 

 

1:58 PM

Understanding qEEG Brain Mapping | Center for Attention Deficit and Learning Disorders

centerforadd-az.com

 

 

1:58 PM

ADD and ADHD in Adults | Center for Attention Deficit and Learning Disorders

centerforadd-az.com

 

 

1:57 PM

ADD/ADHD Explained by Dr. Silverman | Center for Attention Deficit and Learning Disorders

centerforadd-az.com

 

 

1:55 PM

theta eeg Standard deviation to be significant - Google Search

www.google.com

 

 

1:54 PM

Case Studies in Applied Psychophysiology: Neurofeedback and Biofeedback ... - Google Books

books.google.com

 

 

1:54 PM

theta eeg Standard deviation - Google Search

www.google.com

 

 

1:54 PM

theta eeg Standard deviation - Google Search

www.google.com

 

 

1:54 PM

Variability of EEG Theta Power Modulation in Type 1 Diabetics Increases during Hypo-glycaemia - Springer

link.springer.com

 

 

1:54 PM

http://link.springer.com/chapter/10.1007%2F978-3-319-00846-2_133#page-1

link.springer.com

 

 

1:53 PM

theta eeg SD - Google Search

www.google.com

 

 

1:52 PM

Introduction to Quantitative EEG and Neurofeedback: Advanced Theory and ... - Google Books

books.google.com

 

 

1:52 PM

http://books.google.com/books?id=PigKJuOSvbMC&pg=PA124&lpg=PA124&dq=theta+eeg+Standard+deviation&source=bl&ots=Ah4cIsVJEl&sig=qPdTTyL94Jahre-dFHl2crca-I8&hl=en&sa=X&ei=ndGhU6uhBufL8wHWqYHoCA&ved=0CDoQ6AEwBQ

books.google.com

 

 

1:51 PM

Lab #9 Quiz flashcards | Quizlet

quizlet.com

 

 

1:50 PM

theta eeg SD - Google Search

www.google.com

 

 

1:50 PM

http://journals.psychiatryonline.org/data/Journals/AJP/3732/109.pdf

journals.psychiatryonline.org

 

 

1:46 PM

http://cdn.intechopen.com/pdfs-wm/40099.pdf

cdn.intechopen.com

 

 

1:46 PM

theta eeg SD - Google Search

www.google.com

 

 

1:45 PM

theta eeg SD - Google Search

www.google.com

 

 

1:43 PM

theta eeg SD - Google Search

www.google.com

 

 

1:43 PM

theta eeg - Google Search

www.google.com

 

 

1:35 PM

Daubert and Frye Admissibility of QEEG

www.appliedneuroscience.com

 

 

1:35 PM

theta eeg SD chart - Google Search

www.google.com

 

 

1:34 PM

https://www.google.com/search?q=theta+eeg&es_sm=91&source=lnms&tbm=isch&sa=X&ei=Qs2hU_HWO82UyASSo4DICQ&sqi=2&ved=0CAYQ_AUoAQ&biw=1157&bih=603#q=theta+eeg+SD+chart&tbm=isch&facrc=_&imgdii=_&imgrc=tffD2T0wJc9v0M%253A%3BTjZUAIJzXvDHtM%3Bhttp%253A%252F%252Fwww.plosone.org%252Farticle%252Finfo%253Adoi%252F10.1371%252Fjournal.pone.0034789.t006%252Flargerimage%3Bhttp%253A%252F%252Fwww.plosone.org%252Farticle%252Finfo%25253Adoi%25252F10.1371%25252Fjournal.pone.0034789%3B1964%3B1610

www.google.com

 

 

1:34 PM

theta eeg SD chart standard - Google Search

www.google.com

 

 

1:34 PM

https://www.google.com/search?q=theta+eeg&es_sm=91&source=lnms&tbm=isch&sa=X&ei=Qs2hU_HWO82UyASSo4DICQ&sqi=2&ved=0CAYQ_AUoAQ&biw=1157&bih=603#q=theta+eeg+SD+chart+standard&tbm=isch&facrc=_&imgdii=_&imgrc=HQEd9az8lVM4WM%253A%3BWqiw9F-Z5cFRBM%3Bhttp%253A%252F%252Fjn.physiology.org%252Fcontent%252Fjn%252F104%252F3%252F1825%252FF5.large.jpg%3Bhttp%253A%252F%252Fjn.physiology.org%252Fcontent%252F104%252F3%252F1825%3B896%3B1280

www.google.com

 

 

1:34 PM

theta eeg SD chart standard - Google Search

www.google.com

 

 

1:33 PM

theta eeg SD - Google Search

www.google.com

 

 

1:32 PM

theta eeg SD - Google Search

www.google.com

 

 

1:32 PM

theta eeg SD - Google Search

www.google.com

 

 

1:32 PM

theta eeg SD - Google Search

www.google.com

 

 

1:32 PM

theta eeg - Google Search

www.google.com

 

 

1:32 PM

theta eeg - Google Search

www.google.com

 

 

1:32 PM

Specificity of quantitative EEG analysis in adults with attention deficit hyperactivity disorder - Google Search

www.google.com

 

 

1:30 PM

http://www.noropsikiyatriarsivi.com/sayilar/382/buyuk/19-27.pdf

www.noropsikiyatriarsivi.com

 

 

1:29 PM

Specificity of quantitative EEG analysis in adults with attention deficit hyperactivity disorder - Psychiatry Research

www.psy-journal.com

 

 

1:29 PM

Redirecting

linkinghub.elsevier.com

 

 

1:27 PM

consistently excessive fronto-central theta - Google Search

www.google.com

 

 

1:27 PM

onsistently excessive fronto-central theta - Google Search

www.google.com

 

 

1:27 PM

http://books.google.com/books?id=w1YrFypvmn8C&pg=PA391&lpg=PA391&dq=consistently+excessive+fronto-central+theta&source=bl&ots=J-lS9YZBxY&sig=RpviaDPTvwEcLPb542XUwcZuqOQ&hl=en&sa=X&ei=EcuhU8nXKseLyASfuIGYBg&ved=0CE8Q6AEwBw#v=onepage&q=consistently%20excessive%20fronto-central%20theta&f=false

books.google.com

 

 

1:26 PM

Handbook of Clinical Child Neuropsychology - Cecil Reynolds, Elaine Fletcher-Janzen - Google Books

books.google.com

 

 

1:23 PM

ADHD

www.qeeg.com

 

 

1:23 PM

consistently excessive fronto-central theta - Google Search

www.google.com

 

 

1:23 PM

Depressie

www.brainclinics.com

 

 

1:21 PM

ADHD

www.brainclinics.com

 

 

1:21 PM

ADHD

www.brainclinics.com

 

 

1:06 PM

QEEG and EEG Biofeedback Fact Sheet

www.qeeg.com

 

 

1:06 PM

https://www.google.com/search?q=theta+Standard+deviation&oq=theta+Standard+deviation&aqs=chrome..69i57j0.10915j0j4&sourceid=chrome&es_sm=91&ie=UTF-8#q=theta+Standard+deviation+eeg+database

www.google.com

 

 

1:06 PM

theta Standard deviation - Google Search

www.google.com

 

 

1:04 PM

Behavioral and Brain Functions | Full text | On the analysis of EEG power, frequency and asymmetry in Parkinson’s disease during emotion processing

www.behavioralandbrainfunctions.com

 

 

1:04 PM

fronto-central theta SD eeg - Google Search

www.google.com

 

 

1:03 PM

fronto-central theta SD eeg - Google Search

www.google.com

 

 

1:03 PM

fronto-central theta SD qeeg - Google Search

www.google.com

 

 

1:03 PM

Theta rhythm - Wikipedia, the free encyclopedia

en.wikipedia.org

 

 

1:03 PM

Theta rhythm - Wikipedia, the free encyclopedia

en.wikipedia.org

 

 

1:00 PM

Electroencephalography - Wikipedia, the free encyclopedia

en.wikipedia.org

 

 

12:58 PM

Electroencephalogram (EEG) | Johns Hopkins Medicine Health Library

www.hopkinsmedicine.org

 

 

12:58 PM

anesthetic_theta

www.stanford.edu

 

 

12:48 PM

http://sccn.ucsd.edu/~scott/pdf/LooMakeig_Neurotherapeutics12_share.pdf

sccn.ucsd.edu

 

 

12:48 PM

qeeg adhdh - Google Search

www.google.com

 

 

12:48 PM

New EEG Based Test Helps Diagnose ADHD with Greater Confidence

www.medgadget.com

 

 

12:48 PM

Press Announcements > FDA permits marketing of first brain wave test to help assess children and teens for ADHD

www.fda.gov

 

 

12:48 PM

CDC - Attention Deficit Hyperactivity Disorders (ADHD) Homepage - NCBDDD

www.cdc.gov

 

 

12:48 PM

CDC - ADHD, Research - NCBDDD

www.cdc.gov

 

 

12:48 PM

CDC - ADHD, Symptoms and Diagnosis - NCBDDD

www.cdc.gov

 

 

12:47 PM

CDC - ADHD, Articles - NCBDDD

www.cdc.gov

 

 

12:47 PM

CDC - NCBDDD Publications Home

www2.cdc.gov

 

 

12:47 PM

Search Results: adhd qeeg

www.cdc.gov

 

 

12:11 PM

http://www.bcbsnc.com/assets/services/public/pdfs/medicalpolicy/quantitative_electroencephalography_as_a_diagnostic_aid_for_ADHD.pdf

www.bcbsnc.com

 

 

12:10 PM

Neuropsychiatric EEG-Based Assessment Aid (NEBA) System - Google Search

www.google.com

 

 

11:32 AM

Lifting the Fog: A specific guide to inattentive ADHD in adults

www.scribd.com

 

 

11:31 AM

Scribd

www.scribd.com

 

 

11:24 AM

Google

www.google.com

 

Yesterday - Tuesday, June 17, 2014

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The history of browsing and reading while writing. I could re-write this to make so much more sense, but I think people will be able to work through it. 

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David, I just want you to know I hate reading, but I read through all of that because it spoke to me. I could literally feel the emotion put into that man. You should write a book someday, please make it a graphic novel though, because a book without pictures is rubbish (;

I symphathize with you man, and I really wish you wouldn't have such low self-esteem. I've been contemplating suicide a lot lately (HPPD's been a real pain in my ass) and I just want you to know, if I hadn't stumbled upon this website, that you created, I probably would've ended it already. I know it's sick and twisted, but just knowing someone else out there is having the same problems I am makes me feel a little less alone. So please, give yourself some more credit. :) you've helped a lot of people, there's no reason people can't help you. I'm a firm believer in karma, and I'm also a firm believer that you'll be able to get this ADHD thing under wraps. Don't sweat the small stuff, and try to look at the glass half full. :)

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Well, I had no issues reading it or understanding so you did a better job than you think or we just happen to think on the same wavelength. I too have found that after I'm done writing something typically it makes more sense when I reorder the sentences which is probably why my introduction topic wasn't so great. I've also had allowed my inbox to remain untouched for much too long at times and the only reason why I don't now is thanks to having a smartphone. Your experience with ADHD fascinates me for it sounds like we had similar work habits in school. I would almost always ace tests or assignments done in class but homework was something I had a hard time focusing on so I almost never did it unless I had time during school. My overall GPA was 2.49 but my senior year was 3.8 thanks to it being only 5 classes long and 3 of them being music classes.

 

Procrastination would be the name of the symptom that I experience the most and I don't know why. I can become so worked up or anxious about doing something fast enough or getting it correct that I must take my focus off of it somehow so I can try to back to it with a clear mind. By the time I get done relaxing I may have forgotten that the assignment needs completing or try to rationalize putting it off until before school which hardly ever happened successfully. It's effecting me severely at this time because it's even worse when you have no deadlines or even a significant other to help motivate you to get things done in a timely manner. Maybe you don't feel it so much as procrastination but I'm sure one way or another it's common to our disorders.

 

My plan of attack is to focus on getting a Bachelors degree and I'm thinking that my going in at the age of 34 is better than if I had entered when I was 18-21. Finally I'll have a main goal and then all of the little ones in between and if I allow life to happen to me while still staying focused maybe more will happen than just earning a degree. Sounds like you do come up against deadlines and goals but I guess they don't seem as important enough to the world than it does to you. It's as if we feel selfish for wanting even just a little bit out of life so we're more likely to give than to take. Take my advice and try to remember that we do deserve a place within this world and if you cannot seem to find if where you live there are other options and causes that would like at the very least only your effort and time. 

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David,

 

While I am a different person than you,

too much of what you wrote rings true

 

You communicate quite well,

yet life is a disorganized hell

 

You have family and friends as assets,

allow them to help you organize your baskets

 

First get the H out of ADHD,

then you can better focus and see

 

To many projects will spread you too thin,

and accomplishing them will end up grim

 

If your goal is Society of Perception Disorders,

in time you will establish its boarders

 

As you're drowning in emails, and PMs, and text,

deleting them will leave you less perplexed

 

I'll not burden you with more of the same,

but be assured you are quite sane

 

And with time your life will be tame...

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