HPPD for 48 years

[Tigress7]

Hi I haven't been on this forum for 4 years!!! Long time. Just want to say I've had HPPD for 48 years.....and I learnt to live with it!!! Grateful if anyone could let me know if there has been any new research into the condition please? There still seems to be an shocking amount of ignorance about it. Thx.

[dayum_son]

Damn 48 years.... That's some time eh .

Well there have been many speculations like always when it comes to HPPD but AFAIK, no progress so far.

[Tigress7]

Mmmm very bad indeed. I tried to explain HPPD to my doctor recently, he totally discounted its existence. I was in a very bad state with (what I know now to be HPPD), when I was 16 in 1970   No doctor, specialist, psychiatrist etc. believed me, and I was made to feel like a total maniac. Very bad times. But I survived and learned to live with it. I hate  of think others going through that nightmare because of ignorance. Heigh ho.

[jbalsa2]

On 11/28/2018 at 6:39 PM, Tigress7 said:

Mmmm very bad indeed. I tried to explain HPPD to my doctor recently, he totally discounted its existence. I was in a very bad state with (what I know now to be HPPD), when I was 16 in 1970   No doctor, specialist, psychiatrist etc. believed me, and I was made to feel like a total maniac. Very bad times. But I survived and learned to live with it. I hate  of think others going through that nightmare because of ignorance. Heigh ho.

Hi Tigress, 

Here in Canada it's starting to become a somewhat known condition, in some places more than others. The addictions and mental health clinics are aware of it - and the psychiatrists at the clinics typically prescribe lamotrigine and clonidine in combination to treat it. 

At the university of Alberta hospital the head of the psychiatry department is actually seemingly well versed in the condition and had actually told me that my best bet with treating the condition would be to test out an atypical antipsychotic called pimavanserin. Unfortunately this antipsychotic is still brand new meaning that it costs roughly $28000 us dollars per year for treatment.

[subzero]

13 hours ago, jbalsa2 said:

Hi Tigress, 

Here in Canada it's starting to become a somewhat known condition, in some places more than others. The addictions and mental health clinics are aware of it - and the psychiatrists at the clinics typically prescribe lamotrigine and clonidine in combination to treat it. 

At the university of Alberta hospital the head of the psychiatry department is actually seemingly well versed in the condition and had actually told me that my best bet with treating the condition would be to test out an atypical antipsychotic called pimavanserin. Unfortunately this antipsychotic is still brand new meaning that it costs roughly $28000 us dollars per year for treatment.

PharmacodynamicsEdit

Pimavanserin acts as an inverse agonist and antagonist at serotonin 5-HT_2A ^[5]receptors with high binding affinity (K_i 0.087 nM) and at serotonin 5-HT_2Creceptors with lower binding affinity (K_i 0.44 nM). Pimavanserin shows low binding to σ₁ receptors (K_i 120 nM) and has no appreciable affinity (K_i>300 nM) to serotonin 5-HT_2B, dopamine (including D₂), muscarinic acetylcholine, histamine, or adrenergic receptors, or to calcium channels.^[1][6]

Pimavanserin has a unique mechanism of action relative to other antipsychotics, behaving as a selective inverse agonist of the serotonin 5-HT_2Areceptor, with 40-fold selectivity for this site over the 5-HT_2C receptor and no significant affinity or activity at the 5-HT_2B receptor or dopamine receptors.^[2]

^{……………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………}

It’s like playing  Russian roulette . look at its mechanism of action . it is working on 5-ht2a which is responsible of visual phenomena . It’s known that visual cortex has a-lot of 5-ht2a receptor and activating or deactivating this receptor will play a rule in how you see things .In the end it’s your choice.you take the drug experiment or stay away till they make more studies on hppd .

Edited December 2, 2018 by subzero

[MadDoc]

I've been dealing with this for 40+ years.  It became apparent  around 1979, but in retrospect the signs were there as early as 74.  How have you dealt over the years?  

Edited December 16, 2018 by MadDoc
Foolish typing

[Tigress7]

Hi!! The first few years were extremely hard, absolutely no one believed me and considered me an attention seeker. I seemed to grit my teeth and get on somehow. I think I just had to. I did tons of studying. This helped ease me out of myself. I did two degrees and a masters.  I worked in quite pressurised jobs which also helped. Gradually over time I managed to overcome the sense that I had totally fucked up my brains. - and sort of got used to the hood symptoms - which (touch wood) have got no worse - but they remain. However if I could go back in time I would never have taken LSD. Hppd caused me a lot of stress and anxiety when I was young and I should have been having a great time!!

Love and peace

[MadDoc]

@Tigress7

Our lives have some parallels.  I thought I was the only one in the world with this disorder.  None of my friends had anything similar.  Back then, who could you talk to?  Not to mention, there was no internet.

I also threw myself into school and got a graduate degree.  Got married, raised a family, and have a career.  I think staying focused and setting goals is what got me through.  I'm approaching 60, and life is good.  I still have persistent hallucinations but they don't bother me  much anymore.  

Edit:  worth mentioning,  when I'm focused I don't hallucinate or at least it moderates to some extent.

I used to love taking psychedelics, but if I could do my life over, I'd totally avoid them.  This disease just isn't worth it.  Hindsight I guess.

Edited March 27, 2019 by MadDoc
Blah blah blah

[Tigress7]

The parallels are indeed interesting. The first time I took LSD was in 1969 -then a few more times in 1970. I honestly didn't take a lot!! This is why my HPPD thing is sooo bonkers!  I have had the symptoms for 49 years..... it's crazy.

But focussing really helped me too, that's why I became a study freak. 

But the early years were he'll ..... If I could turn back the clock I would run a mile from LSD.... but what can you tell a naive 15 year old?

By the way, have you ever spoken to your friends/family/doctor etc. About the hppd? If so, what's the reaction? I don't even bother now....

Anyway good luck to you - you've overcome too!!

[MadDoc]

Back in the early 80s I spoke to a doctor about it.  The doctor basically said I deserved what I got for taking illegal drugs.  That really shocked me.  I haven't brought it up with a doctor since.  Quite a few years ago I told another doctor I had a "stress disorder" but never mentioned how it came about.  She sent me to meditation courses and it helped immensely.   I have a young primary care physician now, I'm thinking about bringing it up with her.  I figure, why not?   I'm almost 60, I've learned to live with it.  

I've been called a workaholic because I'm always working on something.  It keeps the hallucinations at bay.

Yeah, it's been a long haul, but life is good and I'm happy.  

Thank you for your reply.

[Tigress7]

Hi!! Thanks for your response. Another question.........do you think of the reason why you got HPPD? It seems a pretty rare condition....and surely even more rare to have hung around for so long (in both our cases). Do you think it was the acid.... some bad batch? Or does it relate to a psychological disorder? I was far too young to take LSD, psychologically immature, with a very unstable childhood. 

Anyway keep well, keep working!

Kind regards

 

[MadDoc]

Interesting questions I've thought about it a lot over the years.  I stay in contact with some of the people I used to dose with.  They dosed as much as me and we took the same variety of psychedelics.  I'm the only one who ended up with hppd.  They all report being a little more strange than most, but no overt symptoms.  

When I was really young, I could see cartoons playing out in the branches of the trees at night if I stared long enough.  I would see shapes in the space between branches during the day.  It's like I born with some sort of enhanced pattern recognition or visual imagination.  This was long before I discovered drugs.  The visuals I have now aren't really the same, but I wonder if I was predisposed or if my brain was wired differently.

I sometimes wonder if I had only taken "clean" LSD, would I have been afflicted.  When I was young the acid we got wasn't very pure.  I suspect it was mixed with something like speed or STP (DOM) because it was speedy and would last for 18+ hours (DOM wasn't uncommon back then).  Clean acid isn't like that.  I wonder if that adulterated "acid" had something to do with it.  I also think dosing so young (and so often) was a factor.  Started just before my 14th birthday and continued until I turned 20.  

My childhood was stable.  No abuse or anything like that.  My folks are good people.

A lot to ponder, but no firm answers.

[Tigress7]

Hi thx for considered response - very interesting. I too definitely had a heightened 'visual awareness' when I was a kid. I'd often make patterns and shapes from clouds, tree bark, fire, soil etc. Anything and everything really. I think I thought everyone did this......I wonder if that's the answer to the HPPD issue? Anyway we must be damned special.....!! Perhaps in another life - free from lsd - we'd have been Michelangelo's......who knows??

Keep well.

[MadDoc]

When my daughter was about 5 or 6 she said to me "Dad, I like to make pictures in the trees".  She's now making a respectable living as a working artist (ok, I'm bragging a bit, I'm SO proud of her).  In any case I too wonder if this predisposed me to the visual aspects of hppd, my most significant symptom.

Again, thank you for your responses. Communicating with someone who has had visuals for so long, and thrived, really helps.