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Hi everyone. I survived HPPD, got lucky with a medicine, am now almost without symptom, have a psychology degree, and am here to help anyone.


HBB
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Had HPPD for 3 years. Near suicide for 2 of them. Inches, inches, inches away. About a month before I, if I had to guess, believe I would have killed myself, I tried one last medicine, Keppra, and it cured me 90 percent. I just graduated with a psychology degree from Ole Miss. I am a piece of shit for not being on here sooner to help ANYONE who is afraid, has question, wants advice, just needs someone to talk to, is on the verge of suicide, anything and everything. I owe my life to this site, as it sustained me until I was absolutely and entirely lucky to stumble, after trying about 8 other medicines, something that cured me. And trust me, I know how much hearing someone say "cured" can make you want to throw up you want it so bad. And I would absolutely not say it if I did not mean it one hundred percent. My visual imperiments, after-images etc, did not improve at all I don't believe, but everything else absolutely did. Short term memory, long term memory, ability to speak, derealization and depresonalization decreased by about 90 percent, perhaps more.

I even have a list of testimonials to the benefit and effectiveness of Keppra for other people that I compiled in my last ditch attempt to not kill myself, and it is quite honestly what I think convinced the doctor to let me try it. I still have this file that I would love for everyone to have if they want it.

So, finally back to return the favor this site gave me, in that it kept me alive like a life boat until I simply got supremely lucky. If anyone is scared, just needs to talk, or are about to kill yourself, I will talk to you, any time, any place, about any thing. When I had HPPD, I was essentially schizophrenic, my sexual orientation mutated into a bysexual sort of thing that was so horrible I would hurt myself to try to feel manly again. I have no problem with any sexual orientation, but I was not gay before HPPD, but I did have the experience of being drawn sexualy to a man, imagining some form of sex with him, with my own father even (that is how merciless the disorder was), and then my former, actual self would sort of snap back into reality and it would literally feel like I had just been raped. It was like desiring to smash one's head into a brick wall, doing it, and then coming to consciousness as a person who did not like their head smashed into a brick wall.

Trust me, I have been as low, pathetic, spat upon, disowned, a dissapointment, a disaster, a person who wrote "Happy Birthday" to himself on the dust of his TV screen because no one else was there. I have been, I truly believe, about as low as one can be before suicide. I say all this to encourage anyone to be absolutely not embarrassed in any way if they wish to talk about any sort of problem.

I can provide you with philosophy to cope with HPPD, as I would have died much sooner if I had not derived some of these things. I can provide you with how to find/talk to a psychiatrist. I just really, really, desperately want to help ALL OF YOU. If I could hug you all and cry with you, I would, and if you came to my house, I would do that if you needed it. Again, I owe my life to this site.

That's it. You can respond to this post if you want to get in touch with me. Also, my email is Locrian4@gmail.com. If you need help, let me know.

-Hays

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Thanks for the post HBB

My visual imperiments, after-images etc, did not improve at all

Do you have visual snow?

after trying about 8 other medicines

Would you please list the other meds that you tried and their effects? It would be most helpful for me. Thank you

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Thanks for the kind responses guys. Good to see you guys again. I feel like I know you guys. For so long I was a member of hppdonline, but I didn't actually join for years.

To Visual, I never got snow.

As for the medicines, I think keppra may be the only one that I am absolutely without doubt worked. Lamictal may have worked, and I am still on it, but I don't know if the effect I thought it gave me was placebo. I tried Namenda, which is a drug meant for Alzheimer's patient's to be able to speak and articulate better, to find words better. Didn't help. Shit, what else. I've tried Zyprexa. Didn't work. Actually made me worse I think. How bad are your symptoms? Are they mostly visual?

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Hey HBB, great post. It's good to hear. Truthfully, I think of suicide just about every single day, and have for a while. Then I often think, well, my parents shouldn't have to outlive their son, so that love has kept me alive for a while now.

But i'm interested in keppra. I keep hearing about this medicine. I'm diagnosed Bipolar, have had that diagnoses for about 6 or 7 years. I've read keppra is used to treat that as well, and don't think it would be too far a stretch to get my doctor to prescribe, but i'm not really sure how to go about it. I'm certainly willing to give the medicine a chance though, at this point. The visual aspects of HPPD can be daunting, but they don't bother me near as much and the brainfog/cognative/mental/depersionalization aspects I often get. I feel these syptoms are what are truly preventing me from living my life at this point.

I even have a list of testimonials to the benefit and effectiveness of Keppra for other people that I compiled in my last ditch attempt to not kill myself, and it is quite honestly what I think convinced the doctor to let me try it. I still have this file that I would love for everyone to have if they want it.

Would you mind sharing this with me? Also any knowledge you have about Keppra, ect...I would be very grateful for.

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  • 5 weeks later...
  • 4 months later...

I was on phenobarbital for about 2 years which almost cut my own visuals in half. Although the med would take care of the visual manifestations of HPPD, all the barbiturates and benzos that I have tried have decreased my mental clarity, short term memory, and my methods of information processing.

Due to these undesirable side-effects, I discontinued use about 7 months ago. Not to mention I am a heroin addict in recovery (barbs are addicting and I was abusing my script)... My visuals are getting quite severe, and I just don't know what to do. Again, thanks OP for being so open and willing to help others... I have known about this sight for a while, however, I was reluctant to join until now. I am literally crying out for help!

I first noticed my HPPD at the age of twelve. I have been using various drugs since a few days after my 9th birthday, and my psychedelic use became an every-other day habit by the age of 12ish. The symptoms were manageable, and I did not believe it was a serious condition. I was thinking that it would go away, and the idea that more hallucinogen use couldn't make it any worse never occurred to me. Due to, for lack of a better word, an overdose on 2C-E, combined with MDMA and ketamine, my visual distortions were severely aggravated. This little accident was contributed to weighing 2C-E out on a scale and licking my gloves... I was under the impression that there couldn't be that much powder stuck to the nitrile. This was over 2 years ago, and my opiate, ketamine, and benzo abuse has been exacerbated ever since... Up until almost 6 months ago, at which point I admitted myself to detox, as well as a treatment center. It is frustrating to me that, after being clean for half a year in three days :) my symptoms seem to be getting steadily worse. I am so very desperate to get help. I feel like my HPPD will be probable cause of my very possible relapse... which will lead to my likely death considering I have no tolerance and, if I'm in relapse mode, I will have a fuck it behavior anyways.

What can I do? I desperately need some help right now... I am sorry for the lengthy post, but please understand that I am seriously worried for my life right now. I have been suicidal in the past, and on more than one or even ten occasions, I have attempted heroin OD... I am not worried about today or tomorrow, or even next week... But I feel like if things keep getting worse I will go FUCKING CRAZY! I am fighting a ketamine relapse right now, because for some bizarre reason, dissociatives seem to calm down almost all of my symptoms. Are there any non-drug related treatments or therapies? Polarized eye glasses? I am seriously open to anything right now. I am even open to anti-psychotics or non-addictive drugs. Thank you in advance, and I am grateful that someone started (and someone is running) this website.

-ROW

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I'm only 20. As far as symptoms go... As far as visuals go, the worst one is the constant fluidity and movement of anything with a texture... For example, granite counter tops, Persian rugs, carpet, wood grain, etc. It gets hard to read late at night if I'm stressed or tired or whatever. Sometimes, but not often, I get auditory symptoms... Mostly helicopter blade sounds but also shouting or yelling that I can't make verbal sense of. Whenever I'm in any sort of light, colors are more vivid and intense than they should be (but I've had the condition for almost half my life so I'm not sure what normal really is anymore). I get aura-like glowing around everything but mostly people.Different plants glow different colors... Pine trees are blue, oak is purple, grass is orange... Any solid color or any surface without a lot of texture is like TV static-y... But if I get close enough to most surfaces, like within a few feet, any perceivable texture will compound the static. Mad halos and tracers... I really don't like to drive at night because cars look like a worm-like blob of red and yellow light (from the headlights and brake lights and stuff like that). The halos are more distracting than the tracers but both complicate driving or using my computer or playing video games. I used to love video games but now it is quite hard for me to stay engaged due to visuals but also a lack of focus or attention. I might sound like I'm making it sound worse than it is, but I know it was never this bad until I did god knows how much 2C-E... I've never felt anything close to normal after that incident. But the weird thing is that, when I dream, I don't seem to notice or at least remember the symptoms... Until I cross over into lucid dreaming... Which used to happen a lot but I get lucid much less often these days.

As far as mental clarity goes, I don't usually have a lot of it. I feel like the way I did on high doses of mushrooms or mescaline or any triptamine/phenethylamine for that matter... As in I have very little short term memory and shit for an attention span. I also heavily used ketamine for like 4 or 5 years, so I disassociate on an hourly basis... As in almost threshold K-hole type circling above my body, going up into the ceiling corners, etc. It is nothing like DID, or multiple personality disorder, but it is frustrating (and for the most part involuntary) in its own way. I seem to either have no focus or I hyper-focus on a usually trivial thought or behavior... I laugh way too much and cry way too much... And probably due to my symptoms I have been diagnosed several times with BPD, borderline personality disorder. I could go on... I confuse opposite emotions for each other. Sometimes I am confused whether or not I am crying or laughing... Probably due to, in part, to not remembering what the hell I was crying/laughing about. I feel like I'm ranting so I'm going to stop... But if you want or need more information I could probably take up pages. Everyone I've talked to said it is a pretty atypical, or at least intense case of the disorder but I have never had the chance to talk to someone who isn't a therapist/doctor until now. It is somewhat comforting to be able to relate to people who have the same issues... I have never met anyone who has gotten it, and it frustrates me because a lot of my old friends did a lot of the same shit albeit not to the same extent.

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Wow, you got a lot to deal with.

As far as "Everyone I've talked to said it is a pretty atypical", what you describe sounds like your brain need to relearn emotional control, memory control, etc - classic with certain brain injuries. The fact that your dreams are mostly 'normal' may indicate that the majority of your problem is sensory perception and control - not your core 'self'. This is very promising and gives strong hope. There are things a counselor can guide you through to gain better emotion control - find one who doesn't knee-jerk put you on meds. Meds are useful, but you need to learn attention control and there are mental exercises for this.

HPPD is a sensory/perception disorder. Some of your symptoms seem like a dopamine disorder (my favorite topic) but your situation is complex. And being compounded with addition issues, you need to work very carefully with your doctors.

What have your doctors suggested you do now? Do they think you have HPPD? Are you currently on any medications?

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What symptoms are characteristic of dopamine disorder and what are symptomatic of HPPD? I am fairly certain I have HPPD, and most of my stress is due to the visual aspects of the condition... I have never had anyone suggest I have dopamine disorder, so I sincerely appreciate the input. I can't think of anything else that could cause my visuals, and I am fairly certain that most if not all of my issues were nonexistent before my heavy psychedelic use. Is there more hope than not considering I did most of the damage when I was younger? I have heard arguments for hope relating to plasticity, and I have heard discouraging input concerning brain development and the lack thereof.

I have a doctor who I am seeing now that specializes in addiction. He has not conjectured about l-dopa issues, but considering my symptoms he is fairly certain I have HPPD. Schizophrenia, Bi-polar, and addiction especially runs in both sides of my family... So perhaps I could have some psychotic breaks due to abuse/use. I don't usually feel psychotic but some days are worse than others. As far as therapy goes, I have had about three months of residential treatment with an emphasis on CBT... In fact, that is pretty much all we did for therapy. My anxiety and delusions have gotten much better through processing using CBT...

My doctor is basically telling me to deal with it on my own. I am on dexedrine, 20mg twice daily, and that seems to help a lot with my inattentive tendencies. I haven't really done much attention control exercise, so I really really appreciate your input. And also about my dreams, I should say that I don't notice much distortion until I get lucid, but I think it is really there. Perhaps I am just having trouble remembering it. I have had the condition for a good while, so I seem to notice it less every month, unless I'm consciously aware or paying attention to my symptoms. I am getting much better at emotional control and my memory is slowly improving as well. It seems like clean time has helped with this, for sure.

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You guys should stop believing all that dopamine, seretonin, noradrenaline bullshit. They discover 5, 6 different neuroreceptors and them suddenly they are the cause of every mental disease. "Lack" of a chemical. Seems legit. LOL. Seriously, just think about it. If your computer had a virus and your technician told you the problem was that you were receiving too much spam emails and that you should stop using emails to fix the problem, would you believe him? Well, that's the same. I bet someone can show that people opening too much emails are more susceptible to having viruses. Yet it doesn't have nothing to do with the virus or the solution. The solution is cleaning your system internally, and only a good programmer, who understands the system, can make a antivirus capable of that. Our brain is a software too. It is not because someone can show a relation between receptor quantity and a disease that have a causal relation. Seriously, THINK. The neuroreceptors are just a tool used by it to perform some physical tasks. They are like the diodes in our computer ships. They have NOTHING to do with the internal software and have NO ability to "fix" something broken there. Please just think about it, and stop those meds!

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Thanks for the input windscar, I'm pretty open and vulnerable to any explanation right now so it is always good to get another perspective on things. Just curious, for what reason should I stop taking my meds? I was on mood stabilizers up until a few months ago for borderline personality disorder as well as bipolar 2 & I feel both better and worse now that I am off of them. As far as the ADHD stuff goes, I know i don't need it, but I do much better in school when I do take it. Now that I got my BS I'm doing grad school stuff and I can't really imagine not taking it considering all the work I have to put in... Maybe I should give it another chance though. I have gone months without and months with, either way the HPPD hasn't really gotten all that much better. Maybe I wasn't giving it enough time without the dexedrine to heal? I have gone a year and a half without any improvement of any personality disorder stuff or axis I stuff so I really don't know what to do...

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What symptoms are characteristic of dopamine disorder and what are symptomatic of HPPD? … I have never had anyone suggest I have dopamine disorder … I have a doctor who I am seeing now that specializes in addiction. He has not conjectured about l-dopa issues, but considering my symptoms he is fairly certain I have HPPD.

I simply draw attention to the reports of people with HPPD responding favorably to dopamine agonists (dopamine boosters). As an example, response to Sinemet is ONLY if there has been injury to dopaminergic systems (like with Parkinson's) – that is its pharmacology. Yet apparently 30-50% of HPPD sufferers who try respond favorably. There are a handful of people here who have tried it. For some it does nothing at all (like drinking water), for others, the response is substantial.

Schizophrenia, Bi-polar, and addiction especially runs in both sides of my family...

Schizophrenia is a dopamine disorder treated with antipsychotics (anti-dopamine) http://en.wikipedia....f_schizophrenia

Addiction is also a dopamine issue (the entire reward system is dopamine dependant) http://en.wikipedia.org/wiki/Substance_dependence#Role_of_dopamine

Even Bipolar has some dopamine connection http://en.wikipedia....ine_transporter

I am on dexedrine, 20mg twice daily

Dexadrine increases dopamine http://en.wikipedia.org/wiki/Dextroamphetamine#Pharmacology

As far as the ADHD stuff goes, I know i don't need it, but I do much better in school when I do take it

ADHD relates to dopamine http://en.wikipedia.org/wiki/Attention_deficit_hyperactivity_disorder#Pathophysiology

 

You guys should stop believing all that dopamine, seretonin, noradrenaline bullshit. They discover 5, 6 different neuroreceptors and them suddenly they are the cause of every mental disease. "Lack" of a chemical. Seems legit. LOL.

There are dozens of neurotransmiters identified. However, only the major players have enough research to give ideas of how and where they are used. The real issue is how all your neuronal circuits are functioning. If a med helps, bravo.

Seriously, THINK. The neuroreceptors are just a tool used by it to perform some physical tasks. They are like the diodes in our computer ships. They have NOTHING to do with the internal software and have NO ability to "fix" something broken there. Please just think about it, and stop those meds!

How long can you drive a car with a broken axle? Will driver skill make the car go indefinatily?

Believe me, if a diode or transistor in your computer is blown, no amount of programming will fix the problem. Some cases, such as a specific memory location can be masked out with software (since how memory is used is a parameter of software) but if a piece of the CPU is blown – good luck. Time to buy a new machine.

We cannot buy new brains. But there is a distinct advantage with a brain – plasticity. But note that only the most superficial damage can be rerouted without affecting the whole system. Larger repairs are detectable if not outright noticeable.

 

In the end, meds can be useful. But it is impossible to know what helps until you work with your doctors and try things. If a med helps (and its rewards are greater than its risks), then by all means use it a while.

Now if HBB, who was at the point of suicide for years, feels 90% better on Keppra - then we should consider this. Also, bring out the party balloons and celebrate his success.

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OliverW, a simple reason, nobody knows what those meds are doing with your brain. Isn't that enough? I would only use meds if I *definitely*, being aware of withdrawals, couldn't live without them.

Believe me, if a diode or transistor in your computer is blown, no amount of programming will fix the problem. Some cases, such as a specific memory location can be masked out with software (since how memory is used is a parameter of software) but if a piece of the CPU is blown – good luck. Time to buy a new machine.

Yes, but they are giving names to socially unaccepted behavioral patterns, and blaming physical, scructural problems for them. This is insane! Read about lobotomy. Why should not I belive that our theories today are as absurd as that, just harder to disprove? Throwing chemicals on our brains to cure specific problems. Doesn't make sense. Maybe I'm wrong, but I prefer just to prevent. LSD teached my leasson.

I definitely won't be using any med until we KNOW what HPPD is.

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I'm pretty much with Windscar. I'm convinced that doctors don't know crap. The human body and especially the human brain are just too complex to do trial and error on. Obviously the degree of severity of HPPD plays into my opinion. I have mild HPPD that I can live with so I'm not going to screw with my brain. But if my HPPD was more intense like Oliver's then I'd say its worth a shot.

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Yeah, I am kinda stuck because most of the medications I have been on in the past are substances of abuse, and I just can't do addictive shit anymore... At least downers. I have no desire to abuse my ADHD stuff, but that is the only med I feel comfortable with, and it is the only thing I can really get away with. I want to say I am just going to deal with it, but some things become overwhelming over time. Plus I don't have a doctor who understands my condition. All of this plus other disorders make medications a tricky thing for me. It seems like something will help one condition but will compound another. I am feeling very stuck and confused, but I really am feeling better about things now that I have joined this sight.

As far as l-dopa issues, I am a believer in catecholamines being a major foundation of my perception as well as my personality and executive functions... I do recognize that the medical field still has a long way to go in understanding the true nature of their function, but at the same time I believe that finding similarities between different people and understanding the pharmacology of certain medications is a great tool to get a peak at the inner workings of our minds and brains. Just because I don't know the specifics of a condition or med doesn't mean I am against taking pharms. I don't think humanity will fully understand any of this stuff, at least in my lifetime, but I do think that if a med helps, and the side-effects don't outweigh the benefits, then why not take it?

And Visual, thanks for the reminder on dopamine disorders. I always knew l-dopa was a neurological facet of many of my conditions... But it was enlightening to see all the conditions piled on top of each other and seeing that dopamine has implications for all of the disorders. What about borderline personality disorder? I would assume that, because it deals with the inability to control any and all emotion, l-dopa would be implicated in some way. Thanks again!

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Oh, thank you, aztec99!

OliverW and Visual dopamine has nothing to do with our problem, men. Trust me. I swear. It is used by our entire brain, everywhere, from our motor coordination to hormonal balance. Good luck targetting a specific problem with dope meds.

I don't think humanity will fully understand any of this stuff, at least in my lifetime, but I do think that if a med helps, and the side-effects don't outweigh the benefits, then why not take it?

Because we don't know the side effects. Many meds used openly today are slowly killing our brains.

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Yes, but they are giving names to socially unaccepted behavioral patterns, and blaming physical, scructural problems for them. This is insane!

I agree with this one

I'm convinced that doctors don't know crap. The human body and especially the human brain are just too complex to do trial and error on

Human knowledge is very limited, but if you are smashed in a car wreck, doctors can be quite useful. Medical practice and medical research are about 20 years apart. And drugs are big business, which skews the whole thing.

I definitely won't be using any med until we KNOW what HPPD is.

That may be wise. Certainly developing HPPD is a wakeup call about potential effects of drugs - but remember prescription meds are milder then recreational drugs. They are also consistent in potency. Also, HPPD is a multiple system malfunction.

OliverW and Visual dopamine has nothing to do with our problem, men. Trust me. I swear

You can swear all you want - but dopamine is a primary factor in my problem. Quality of life is substantially improved. You say "trust me" regarding an opinion on a med you haven't tried. Are you saying I, Merkan, or the few others who have benefited to not trust their own reality? Even if you had tried it and it didn't help - that is you, not the whole world.

Dopamine's involvement for many with HPPD is too obvious to ignore. The evidence literally screams from the air. It is simply a matter of time before researchers rigidly define it through reductionist methods. Perhaps they will even work up models to help an individual know if it will help them personaly. One can wait or one can try...

It is used by our entire brain, everywhere, from our motor coordination to hormonal balance. Good luck targetting a specific problem with dope meds.

You are right, you can't target one spot. I am fortunate to need such as small amount since that minimizes side-effects. And yes, all meds (including Sinemet) have downsides.

As far as Sinemet goes, it is simply an option besides Klonopin. It will probably help fewer than Klonopin will. And it may only help in conjunction with another med. But it not adictive and one of the safer meds available. And it is cheap (not sexy)

Ultimately, if a person is able to pursue goals, keep a job, have a family (if they want), etc. - there is little reason to take any med.

OliverW,

I really don't know if Sinemet will help you - noone can know for sure. But it is a something you could talk to your doctors about. They may blow it off or they may be interested. But your famiily history is interesting from an "epigenetic" standpoint. And you already take a med that increases dopamine.

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Haha epigenetics is so interesting! I love that you mentioned that. I have been thinking a lot lately about all the genes I have turned off and all the activated genes that my ancestors have passed on. I would love to do some research in the realm of epigenetics and maybe try find a correlation between psychological disorders among other physiological diseases. Yeah I will take it as it comes and see whether or not a med would help me depending on my progress. I really appreciate how open you are to conflicting , and thanks for the input. I don't think I will bring up any meds with my doctor in the near future, but I'm not ruling anything out for sure. If things stay the way they are I think I will have to do something... Even looking at things as being a gift and trying not to focus on the negativity (thanks Jay1!), HPPD still makes it hard for me to function day to day, let alone situations that require my full concentration and attention. I really don't subscribe to the whole complete abstinence thing as far as meds go, but I figure, if I can manage without them then that would be great... I'm just taking things a day at a time right now.

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