In this thread, I will try to pinpoint the cause of HPPD based on what current studies are suggesting. For years, I've felt the need and desire to find a solid hypothesis on the cause of HPPD. I felt very uncomfortable not having an exact idea about the cause of HPPD, which for me, was necessary to have hope for future treatments.
I hope one day, we as a community will have a consensus on the cause of HPPD so that there is a scientific foundation to start with. How much better would it be, that to a new user, instead of having to say "We have no idea what causes HPPD", we're able to say: "You probably have damaged some specific neurons in your brain which are now causing your symptoms". That should be more relieving and also makes it easier for the user to put into perspective that this disorder is not the end of the world.
I have found two quotes from HPPD studies that suggest brain damage is a cause of HPPD:
"It has been proposed that symptoms of HPPD are caused by damage to inhibitory interneurons expressing 5-HT2A serotonin receptors to which most hallucinogens bind. This loss of cortical inhibition (21, 22) may manifest in aberrant occipital delta oscillations (23–25) associated with visual hallucinations." [source]
"The available evidence suggests that HPPD symptoms may be a result from a misbalance of inhibitory-excitatory activity in low-level visual processing and GABA-releasing inhibitory interneurons may be involved." [source]
With "damage", I suspect they mean the death of GABA-releasing neurons through overstimulation of 5-HT2A receptors. This damage may extend to other brain areas, and cognitive or psychiatric symptoms may be involved. The reason that the damage doesn't resolve on its own is that neuronal loss is tenacious and creates a non-permissive environment near the site of injury, preventing proper healing which results in persistent functional defects.
This thread is a work in progress. I will try to post updates when I have time to read more studies.
Hello HPPD community / Family
As many of you may know, over the past 10 years a joint collaboration of a team of HPPD sufferers went out contacting leading experts in various parts of the world in a plea to find help and answers.
After many years we had success, reaching top experts who became willing to help, and from there started a joint collaboration with leading experts from various parts of the world, i.e. Johns Hopkins USA, Kings College London and St Vincents Australia. This also included the direct Input Of Dr Henry Abraham to create the most in depth Protocol and study ever with the intent to find the actual cause of HPPD and then effectively be able to treat it or even find a cure for the condition.
We have been neglected for far too long and this is our chance to actually get real and significant help. It is the responsibility of all of us (not just leaving it up to a handful) to move towards our desired objectives.
In this way, we are asking anyone who would like to contribute financially to please do so. At present the team is working on a shoe string budget, though to make real progress and to start to do real work, working with real HPPD sufferers we are in great need of funding now.
This is our one chance to really make a difference and to make history, and to hopefully make HPPD history.
I am asking anyone reading this to please find it within yourself to contribute by whatever means possible financially as soon as possible.
Donations can be made directly to:
Macquarie University NSW
(just include an note that it is for the HPPD study / Protocol, Being Lead by Professor Harry Mcconnell)
find a link to the study here :
Hallucinogen Persisting Perception Disorder (HPPD) Protocol: Multimodal Neuroimaging to uncover neurobiological pathogenesis — Macquarie University (mq.edu.au)
From the depth of my heart please find it within yourself to give what you can. With our combined efforts,something from everyone we can achieve what we needs to happen, to move forward now and get the treatment and help that many of us of us have been waiting decades to receive.
Please and thank you!!!
Well... I don't qualify for having a disorder since it no longer causes distress in my life.
I'm writing in this section to describe my symptoms from the days I intentionally exacerbated them for recreation. Since stimulants worsen symptoms... I'd smoke the most powerful stimulant... crystal meth.
Being overly tired also worsen symptoms. So I'd stay awake for a couple of days. I'm mean... I was smoking meth. Lol But it wasn't enough sleep deprivation to cause a normal person to see things. I would then top it off with some weed.
I would see certain words written on my face, objects, in the shadows from tree leaves. The words had meaning to me. My favorite musicians name and the "friend"'s name who introduced my wife to the drug that ended up causing her to go through drug-induced psychosis for several years.
While bright light often makes symptoms worse... going into a darker environment that would allow my my brain to run wild the less available visual stimuli. I'd look into a mirror and the highlights and contrast would create fantastic visuals.
Such as when I would place my spaced out fingers on my face, lots of highlights and contrast when spaced apart. Steadying them on my face kept them from moving around. My fingers would turn into what I ended up calling "my townspeople". The fingers most frequently became couples dancing with each other, or embracing one another in some way. Sometimes it looked as though they were doing chores.
One time I was watching my wife sleep... and an entire scene from "Dazed and Confused" was what I saw. Not my wife.
Formanoit two weeks I saw smiley faces almost everywhere. Humans always see faces in patterns... but this wasn't that. Think of smiley face stickers. Those things everywhere. Lol
Much more I could tell ya, but I'm tired of typing. I hope at least one person found this interesting.
Hi I have had hppd for 2 years and its been a dessent into hell.. It started very mild then anti histamines celexa made it worse..then i tried for a year to make it better clonapam was always my go to but was aware of dangers os treated with respect.. The next big spike was lions mane... gabapentin as working untill inclusion of lamotragine and then boom up another level. im no longer ina space where i can just live with it. intense snow visuals flies buzing around tactile bugs 247 makes my life unbearable.. gutted as two years ago i could barely see any snow let alone the rest... I decided as a last resort before ending things to move to a hot beach and see if the weather and see might rebalance my nervous system.. every spike i have had never came down just pushed me up...
Right now i started keppra 1000 take clonaspam every other day and started risperadone for tactile ahllucinations ( i am aware of the risks but i have no choice)
I have carbomazapine clpbazam topimerate and phenoarbital as back up. i am thinking antipeileptics are my best chance for relief...
Would appreciate any advice i eat well relax etc but ignoring my visuals and ignoring the tactile sensations is not piossible..I need treatmentt I know some people used peptides.. Im basically trying to save my life...so any thoughts ?