Shattered Perception, A Journey with HPPD and Visual Snow

[brake]

I wanted to write the first book on HPPD to spread awareness, get funding for research, warn others about the dangers of psychedelics and also maybe give others a guide to how to navigate the disorder that just got it and had no idea about it. But unfortunately I didn't have enough content for a book. I don't want to write a full blown personal biography, I wanted to stick to the subject. I added pictures as well to give people an idea of how the visuals look. Enjoy!

Shattered Perception, A Journey with HPPD and Visual Snow.pdf

[yarkadin]

I just read this... this is really, really good.  Thanks for sharing your story!  You put a lot of great detail in it and obviously did your research.

So you got the disorder about the 6th or 7th try with LSD.  We really have a lot in common with the symptoms and going through all sorts of doctors, and also the initial panic and anxiety.  I never did try many drugs, afterward... and I only took LSD once in my entire life.  I've since talked to others who took LSD, or Mushrooms, or even cannabis, just ONCE, and were fucked.  Interesting how some people who take LSD many times are fine and then they take it just one instance (perhaps something to do with the strain/composition itself?) and they get HPPD.  This sort of shatters the genetic predisposition hypothesis... and that was coming from Abraham, by the way, I still remember him telling me that on the phone, even though he pulled that info straight out of his ass and didn't know what the fuck he was saying.  I mean, don't get me wrong, it is still possible, many genetic effects only trigger in certain circumstances, but there's no objective evidence.

So Lamictal helped you a bit (do you remember the extent?) but ultimately wasn't worth it due to the side effects?  That's why I am not going to even try.

We are riding on indirect medications, nothing specific has been designed for HPPD.  What's worse, lazy writers, the majority, copy and paste the same information over and over in websites without doing in-depth research... so we get reports about drug X and drug Y being recommended for HPPD, when in fact it doesn't do shit for most people.

I feel like we got a lot in common here... you did a lot, you tried a lot, you seem to be trying to make the best of your life.  Really high respect for that and for sharing this.

Edited September 1 by yarkadin

[brake]

6 hours ago, yarkadin said:

I just read this... this is really, really good.  Thanks for sharing your story!  You put a lot of great detail in it and obviously did your research.

So you got the disorder about the 6th or 7th try with LSD.  We really have a lot in common with the symptoms and going through all sorts of doctors, and also the initial panic and anxiety.  I never did try many drugs, afterward... and I only took LSD once in my entire life.  I've since talked to others who took LSD, or Mushrooms, or even cannabis, just ONCE, and were fucked.  Interesting how some people who take LSD many times are fine and then they take it just one instance (perhaps something to do with the strain/composition itself?) and they get HPPD.  This sort of shatters the genetic predisposition hypothesis... and that was coming from Abraham, by the way, I still remember him telling me that on the phone, even though he pulled that info straight out of his ass and didn't know what the fuck he was saying.  I mean, don't get me wrong, it is still possible, many genetic effects only trigger in certain circumstances, but there's no objective evidence.

So Lamictal helped you a bit (do you remember the extent?) but ultimately wasn't worth it due to the side effects?  That's why I am not going to even try.

We are riding on indirect medications, nothing specific has been designed for HPPD.  What's worse, lazy writers, the majority, copy and paste the same information over and over in websites without doing in-depth research... so we get reports about drug X and drug Y being recommended for HPPD, when in fact it doesn't do shit for most people.

I feel like we got a lot in common here... you did a lot, you tried a lot, you seem to be trying to make the best of your life.  Really high respect for that and for sharing this.

Lamictal was not worth it for me due to the side effects but for you it might be. I never spoke to Dr. Abraham but I did speak to Dr. Stephen Locke also from Boston. He said my first visit would be $500 and the follow-up visits would be $250. He told me he treated over 100 HPPD patients and that I rather go to him than a random doctor that has no experience with HPPD because that's like going to a surgeon with no experience. You would rather go to an experienced surgeon. He gave me a contact who is a neurologist in NYC but he said he never heard of visual snow. He was also expensive and these people don't take cheap insurances. So I have not seen a specialist yet but my eye doctor said I'm not his only patient with visual snow, he actually has a few others.

Thanks for reading it and I appreciate your input!

Edited September 1 by brake

[yarkadin]

$500 a visit... these people are FUCKING OUT OF THEIR MINDS with GREED... and exploiting desperate people to rip away that money...  that fucking pisses me the fuck off to no end, that really burns me up... I went to one psychiatrist this year and I got a bill for about $470 too.  This fucking son of a bitch asshole waited two months to charge me, my insurance page registered $380 at first, and then on his site (he's tied to a big hospital like many doctors these days) was instructed to pull out about $90 more.  For what?  I contacted his criminal accomplice and she said she would return me the $90... by default, in response to my complaint, she added it as credit for a future visit.  Can you imagine the nerve of these people?  I told her to charge it back to my card.  I'm still waiting for that to happen about 2 weeks later.  I want to drop a nuclear bomb on these people who are supposedly practicing medicine in order to help people... even more so if they actually care for HPPD and are such gurus on the disorder, they should do it pro bono for research purposes, to gain more insight, etc.

Lamictal doesn't do anything for most people... that's what I've gathered from the last few months of reading these forums.  I haven't read of a single person who was significantly "cured" by it.  Thus far: I read a lot of rumors, one online case study with no follow up or controls (i.e. zero evidence of anything positive actually happening), and a few people on these boards with vague and nebulous comments about their problems softening up a tiny bit (which could have happened anyway over time), nothing significant.  Please, PLEASE prove me wrong.  Anyone.  Now you could be right, Brake, that it does wonders on me if I give it a try, but I just am not in the mindset of performing a gamble with myself with a medication whose side effects are diarrhea, double-vision, rash, tremor, swollen nymph nodes, shortness of breath, blistering, nausea, indigestion, itching, third limb growth, incontinence, cranial explosion, etc.

Anyway, I need to cool down, I'm sorry, lol... love.

Edited September 1 by yarkadin

[brake]

On 9/1/2024 at 6:10 PM, yarkadin said:

$500 a visit... these people are FUCKING OUT OF THEIR MINDS with GREED... and exploiting desperate people to rip away that money...  that fucking pisses me the fuck off to no end, that really burns me up... I went to one psychiatrist this year and I got a bill for about $470 too.  This fucking son of a bitch asshole waited two months to charge me, my insurance page registered $380 at first, and then on his site (he's tied to a big hospital like many doctors these days) was instructed to pull out about $90 more.  For what?  I contacted his criminal accomplice and she said she would return me the $90... by default, in response to my complaint, she added it as credit for a future visit.  Can you imagine the nerve of these people?  I told her to charge it back to my card.  I'm still waiting for that to happen about 2 weeks later.  I want to drop a nuclear bomb on these people who are supposedly practicing medicine in order to help people... even more so if they actually care for HPPD and are such gurus on the disorder, they should do it pro bono for research purposes, to gain more insight, etc.

Lamictal doesn't do anything for most people... that's what I've gathered from the last few months of reading these forums.  I haven't read of a single person who was significantly "cured" by it.  Thus far: I read a lot of rumors, one online case study with no follow up or controls (i.e. zero evidence of anything positive actually happening), and a few people on these boards with vague and nebulous comments about their problems softening up a tiny bit (which could have happened anyway over time), nothing significant.  Please, PLEASE prove me wrong.  Anyone.  Now you could be right, Brake, that it does wonders on me if I give it a try, but I just am not in the mindset of performing a gamble with myself with a medication whose side effects are diarrhea, double-vision, rash, tremor, swollen nymph nodes, shortness of breath, blistering, nausea, indigestion, itching, third limb growth, incontinence, cranial explosion, etc.

Anyway, I need to cool down, I'm sorry, lol... love.

Why did they charge you that much? Is it a specialist? Did they run a lot of tests on you? Is it a combined bill for all of the visits in total?

[yarkadin]

I have a HDHP, a "high deductible health plan" So I pay upfront all costs, full blast, until I reach a deductible limit (which I will never reach unless I am hospitalized or diagnosed with some very serious illness that needs persistent treatment).  So in effect I am seeing what doctors charge insurance plans in the USA.  It is not TOO shocking to me since I already know that the American healthcare system runs on pure unmitigated greed, but it has brought it up squarely to the surface.

This year I decided I'll go through a bunch of tests and here are some of the costs I incurred, roughly:

Ear nose throat doctor: about $200 visit (visit was maybe 20 minutes), and an additional $200 for an "operation" which was a 5 second (literally!) insertion of a coil device in my nostril to check for polyps.  I had to call them later to make sure it wasn't a mistake.  The lady at the line just said, "Uh huh... we know about that, and we count that as an operation".  5 seconds = $200.

Dermatologist: $150 visit, I saw there for maybe 5 minutes max.  Another $200 to remove a 3 millimeter mole.  That counted as an "operation", little knife cut, voila.  Again, the "operation" took maybe 20 seconds.

Hepatologist: Looking for any liver issues, x-ray cost $400... procedure took about 10-15 minutes total.

Family doctor: These routinely cost me about $100 a visit

Most recent visit, psychiatrist, 40 minute session.  $470.

The people who invented the HDHP and the HSA plan are millionaires in congress, in the Senate and House, who make about $175,000 annual salary and reportedly get good government health care.  They are completely disconnected and living on another planet from ordinary people.

I am not really complaining or whining here... I have an okay salary.  I am just saying, this is grossly unfair to most people and a thing such as an HDHP should never exist in the first place.  If a society supposedly has a huge surplus of money or has its shit together, it should be able to accommodate its population with healthcare.  That's all I am saying. 

Again this thread went into a huge unrelated digression and it's totally my fault, sorry about that.

Edited September 4 by yarkadin

[brake]

18 minutes ago, yarkadin said:

I have a HDHP, a "high deductible health plan" So I pay upfront all costs, full blast, until I reach a deductible limit (which I will never reach unless I am hospitalized or diagnosed with some very serious illness that needs persistent treatment).  So in effect I am seeing what doctors charge insurance plans in the USA.  It is not TOO shocking to me since I already know that the American healthcare system runs on pure unmitigated greed, but it has brought it up squarely to the surface.

This year I decided I'll go through a bunch of tests and here are some of the costs I incurred, roughly:

Ear nose throat doctor: about $200 visit (visit was maybe 20 minutes), and an additional $200 for an "operation" which was a 5 second (literally!) insertion of a coil device in my nostril to check for polyps.  I had to call them later to make sure it wasn't a mistake.  The lady at the line just said, "Uh huh... we know about that, and we count that as an operation".  5 seconds = $200.

Dermatologist: $150 visit, I saw there for maybe 5 minutes max.  Another $200 to remove a 3 millimeter mole.  That counted as an "operation", little knife cut, voila.  Again, the "operation" took maybe 20 seconds.

Hepatologist: Looking for any liver issues, x-ray cost $400... procedure took about 10-15 minutes total.

Family doctor: These routinely cost me about $100 a visit

Most recent visit, psychiatrist, 40 minute session.  $470.

The people who invented the HDHP and the HSA plan are millionaires in congress, in the Senate and House, who make about $175,000 annual salary and reportedly get good government health care.  They are completely disconnected and living on another planet from ordinary people.

I am not really complaining or whining here... I have an okay salary.  I am just saying, this is grossly unfair to most people and a thing such as an HDHP should never exist in the first place.  If a society supposedly has a huge surplus of money or has its shit together, it should be able to accommodate its population with healthcare.  That's all I am saying. 

Again this thread went into a huge unrelated digression and it's totally my fault, sorry about that.

Oh yeah that's more of a plan when you're healthy just don't want to pay thousands for cancer, emergency room visits, accidents, etc. My salary is not good lol but at least the people I work with are nice and my health insurance covers most of the bill. There is room for advancement in the future though which is what I am counting on.

[Spartan]

I have downloaded this. Have not had a chance to read yet tho looking forward too. 

Congratulations for stepping up and getting it done!  

[brake]

14 hours ago, Spartan said:

I have downloaded this. Have not had a chance to read yet tho looking forward too. 

Congratulations for stepping up and getting it done!  

Thank you very much

No pressure bro!

I hope it does something good for fellow HPPDers

[Spartan]

3 hours ago, brake said:

Thank you very much

No pressure bro!

I hope it does something good for fellow HPPDers

Most welcome bro

Absolutely! Just doing my best to download correctly, then can dive in from there.  

Yes definitely!  Thankyou