By Loukas iliop
Hello to the hppd family. After having hppd, a form of visual snow and some dpdr from weed ive been on my worst days of my life. I was panicing, having panic attacks, checking in every minute pf an hour and basically living in some sort of paranoia. 7 months later i started ignoring it and felt immediatelly better. Im now on my month 8 doing no fap, cold showers, no sugar diet, 4 liters of water a day and listening to positive affirmations daily. Evem though all those thing i still experience a lot of nightmares where i also have dpdr hppd etc. Yesterday i saw a very scary realistic dream with some sort of a demon into it. I woke up sweating and being in a lot of discomfort. I closed my eyes and saw the demon appearing and next to him that star or whatever its called just like afterimages (which im used to them trust me :p). They lasted for about 20 seconds amd they were very scary. I have never had tryied amy psychedelics, i have done mri tests and they are perfectly fine , ive given a schizophrenic test (although) i didnt have any symptom(because i was worried) and o had nothing. Before that day i was on day 12 of nofap, doing cold showers, had sugar free diet, being better with my mental state and working out. The only problem i had with my sleep is that i couldn't sleep well last year when i had none of those things ironically. Also, i sometimes experience sleep paralysis but not this time . im a little worried . can anyone relate to this?
Boy, have I had fun struggling to explain this over the years.
Having read implications that people can naturally develop HPPD without the use of drugs, I feel brave enough to come out and propose...
I believe I was born with HPPD.
Yes, there are an endless amount of possibilities of what can happen to a child before their memory develops. The unknown aside, my mother swears upon her life that she was emotionally compelled to be clean during her pregnancy. She did however try recreational substances in the years before her pregnancy. That's all there really is to factor into the early development without getting into genetics. Fast forward to my mental awakening: My earliest memories go as far back as 2 years old, with a high amount of detail for a small handful of experiences. HPPD's visual snow began as early 3 years old, no sooner than 4. I can't tell you anything else about my life with more certainty.
Staring at a moonlit ceiling while lying in my parents' bed, unable to sleep, I could conjure up the visual snow and follow it about for entertainment until dozing off. I distinctly remember it starting as a zebra-like puddle which grew in unnaturally rippling waves. I was obsessing over this nightly until it began to take color and move like a three-dimensional flock of birds descending from the gypsum ceiling to toil about as a flock of hundreds of birds would. (Side note: Growing up with white Gypsum walls/ceilings is a disastrous trap for obsessing and worsening the condition. In my worst episode, I was seeing morphing, endless crude depictions of the black plague in my gypsum-walled home, aprox 16 y/o.)
Depersonalization symptoms set in around 4-6 years old, the beginning of which I described as having, "woken up for the first time;" but I was already awake. I asked my mother if she felt it, worried it was a natural phenomenon I'd just experienced. This took place on the usual morning drive to school.
At around age 10 I 'lost control' due to obsessive habits mixed with social stress, and began to have increasing difficulty with reading. At the same time I developed a sensitivity to horizontal stripes of almost any two colors. They force a sensation of false-vertigo, nausea, anxiety/nervousness, poor sense of balance or the need to steady myself all with an alluring fixation on this rather distressing visual. It's taken a long, long time to learn to limit the amount of stress this causes to a manageable level. Object-specific color changes usually occur with a pearlescent effect, and are a rather relaxing replacement for the old habit of obsessing (wall staring). Strangely, I find both the visual snow and object specific color changes to be... slightly controllable during dawn and dusk. I can really only give it the last mental nudge to get started, but otherwise can't control the outcome. I can also intuitively fight the potential minor trigger sensation/stimulus in an effort to squelch micro-episodes. Sometimes it takes a bit more than just conscious ignorance, which I really cannot describe yet.
Along with this came high-ceiling spatial distortion. Basically what I mean by that is... Any warehouse sized store such as Target, Walmart, Raley's, Costco, Sam's Club, Sports Warehouse or even hardware depots will all force sensations of losing balance constantly between peripheral warping. I can only describe this as feeling like walking in a hamster ball. I must say this one snuck it's way into my childhood at random before becoming a staple of my symptoms. It takes intense concentration, energy and physical control to navigate the store. (merely forcing myself to remember the experience to describe it with better accuracy sent me into a slurry of funny typos!)
I've always been regarded as dramatic or 'overly dramatic' for complaining of such sensitives growing up. None of my complaints were taken even remotely seriously, allowing me to steep in these issues and make them grow worse. Of course, my family speculated in all the wrong directions when they did listen, only creating more stress and many unnecessary issues through years of misunderstanding. I can't tell you how great it felt to shed the hysteria pinned upon me of potential mental illnesses once I learned about HPPD and shared it with my family, regardless of whether they believed me or not.
It would be useful to note that I also went through roughly 10 years of chronic lyme disease, which definitely worsened my visual symptoms. I'm now 20 and going on a year and a half lyme-free (supposedly). My lyme treatments did not seem to have any particular effect on my HPPD besides the associated stresses of treatment. While moderately tamed down in severity, my visuals are still occurring daily. Experiencing my visual distortions is about as normal as breathing now, occurring or interacting with my daily life as subconscious thoughts do. I avoid recreational drugs adamantly as they can throw me far out of the balance required to keep my own peace.
The medication combination I've found to help lessen my HPPD (prescribed for reasons other than HPPD) are Low Dose Naltrexone, Cymbalta and medicinal cannabis extracts. The LDN (Naltrexone) has been my only successful combatant against depersonalization, albeit a slow creep. 10mg Cymbalta once in the evening is just enough to help reduce possibly over-exciting stimuli from actually being too exciting. Yet, I still can't sleep in a dark room most nights.
In fact, my difficulty sleeping is what's driven me to write this introduction. I've been skipping stones on the issue all my life, but it's only been getting worse. I used to sleep with lights off as a teen no problem. Now I absolutely need a lamp in the corner of my room to be lit until sunrise. I'm in an odd pickle, since this situation leaves me seeing pockets of visual snow on a nightly basis when trying to sleep. If I try to sleep in darkness or near-darkness, the slightest flicker of visual snow explodes into momentary images or after images of rather terrifying things; usually large or distant faces of ambiguous or monstrous nature. Sometimes straight out of media, sometimes abominations of the imagination. I find these frightening because they occur like jump scares, when I least expect them and only for a nano-second. I'm not one to obsess over violent or scary things, instead I'm unsettled rather easily, so I prefer to avoid thinking on such things. Perhaps that practiced avoidance is what's nurturing this emerging issue. Anyways, therapy is not helpful for this, as the phenomenon doesn't seem to be entirely tied to my state of mind. Certainly provoked under stress, but definitely no recurring themes or obsessions which could fuel these more severe night-time hallucinations.
I've tried chopping this up to many other diagnosis by myself since my 20+ doctors over the years have never been able to guess at anything better than visual synesthesia or eye damage from frequent TV usage. Much of dealing with HPPD seems to be oriented around self-discovery rather than self-treatment, in my opinion. I'd love any feedback from others who believe themselves to have been dealt a similar hand in life, since we seem to be too few to notice or be noticed.
❤️ - J.L.
June 11, 2019
SUBJ: Faces of HPPD Survey/Research Published – RESULTS!
Dear HPPD Online Community:
As a mom with a grown son with HPPD, I was so fortunate to come across this forum several years ago for information and support. David Kozin, who runs this board, is an amazing man to have created and maintained this website and kept up his work/studies over the years – all the while suffering with HPPD. I would like to thank him for this platform, and well as thank those of you who participated in the survey that I launched four years ago to collect data about individuals who had received an official diagnosis of the disorder.
Fast forward…. Here it is June 2019. Long overdue for the published report, however, I lingered – always hoping to gain a larger sample of subjects.
I am fortunate to have a PhD in psychology, experience in research, and a heart to try to make a difference. Instead of publishing a book, it only made sense to get the results in the hands of the scientists and medical professionals through scientific writing. I am so happy to tell you… the peer-reviewed medical journal, Addictive Disorders & Their Treatment, published by Wolters Kluwer publishers, has reviewed and accepted my manuscript for publication in an upcoming issue. Last week the article completed rounds of publication editing and formatting. The article is posted at their website for advance release.
Lewis, DM, Faces of HPPD: Hallucinogen Persisting Perception Disorder Patient Survey Results and a Descriptive Analysis of Patient Demographics, Medical Background, Drug Use History, Symptoms, and Treatments. Addictive Disorders and their Treatments. Forthcoming 2019.
The link is here: https://journals.lww.com/addictiondisorders/Abstract/publishahead/FACES_OF_HPPD__Hallucinogen_Persisting_Perception.99733.aspx
(NOTE: This direct link will change probably in a month or two when the article is given a print-issue date – right now, it is advance copy, undated. In the future, you can search the article at https://journals.lww.com/addictiondisorders/ .
While the article is available for immediate download, many of you know that publishers charge money for copy downloads (this one is $49), and authors cannot give away their copy. This, I know, is not a good thing for some within the community who do not have the funds.
However (here’s the good news 😉), I contacted the publisher and obtained permission to publish a summary of the results (the important data!) and I created an infographic that provides you all the results. I am including it here as a .pdf file, attached. It’s reader-friendly, and I hope it provides insight.
I want to mention some findings that particularly concern me: the high rate of suicide ideation (among other co-morbid psychological/psychiatric symptoms reported), and the significant number of individuals who reported being unable to work due to HPPD. I feel strongly that HPPD needs recognition as potentially disabling – and I believe there are some individuals who may need government assistance (eg, Social Security Disability benefits). My future work leads me in the direction of carving a path for HPPD as a qualifying mental disorder for eligibility for assistance. I will keep you posted on that.
Again, thank you so very much for those who partook in the survey.
My best wishes to each of you for good health and peace of mind,
Doreen M. Lewis, PhD
Faces of HPPD Infographic - LEWIS.pdf