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Hallucinogen Persisting Perception Disorder (HPPD) Support Forum


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rachel last won the day on March 2 2016

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About rachel

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  1. Thanks so much for this insight. I really appreciate it. I will be sure to refer to it as visual snow rather than hppd, though I'm still hesitant to discuss it at all with my dr being as how the symptoms (if not fully understood in correlation to the disorder itself- which there is so little information on, particularly for non drug related cases) might seem like a psychosis in and of itself. I don't suffer from psychotic symptoms of any kind (unless the kitchen sink isn't actually speaking to me... jk), so I was a bit miffed by the respiridone prescription as perhaps a bit extreme for what I was told would be an effective off label adhd treatment when accompanied by stimulant meds. There is not a lot of information I can find about it helping adult adhd (actually nothing I have found online. Only childhood cases). I would consider antidepressants and wanted to ask about this, but it is heartening to hear these also might worsen symptoms. My only job I have right now is driving and it is very hard at night due to the problems with access glowing, halos, light trails and all such other night distortion, etc. (Honestly I probably should never be driving at night to begin with so I really do think want any worse symptoms than I already have.) I Googled 'Benzodiazepines' (this u say helps the vs/hppd?) but it doesn't seem like something they'd prescribe for me. I do also worry about the mention of addiction (hence the never taken drugs thing ) as there is a lot of family history of this I just presume I have an addictive personality by genetic default not to want to risk it, and the stimulant medication for adhd (also that I havent taken yet) reports high risk for abuse as well. You said you 'had' hppd.. does this mean that you are experiencing some kind of recovery or lessening of symptoms? If so, may I ask if you were being tested with any medication that helped at all? It is not bothersome to me- particularly as I don't know a vision without it. It's weird because although I've never experienced a normal vision I feel I fully understand it and it would be nice particularly at night (tho maybe unsettling to not have anything to look at when I'm spacing out) but not something I really care if I ever get. What I am most most most eager to heal is the auditory tinnitus I got after taking the anticonvulsant medication Topamax. It is VERY bothersome to me and if there is any hope for drug induced hppd then maybe there is for drug caused tinnitus as well? ?..?? It's been 6 years now with the tinitus and it's very very loud. It's pure f--king awful
  2. Wow. I got.. teary reading your post. I wasn't expecting to be emotional here but your words spoke to my recent thinking I was maybe even too afraid to ask myself. I have been wondering the exact same since learning more about this and speaking with a psychiatrist for the first time just last week. (Haven't mentioned hppd but the thinking of my childhood and past has been prevalent ). I have had all aggressive symptoms of HPPD at least as early as 5-6?years (that I can remeber) so really I don't know a life without it. I was always healthy other than some anxiety disorders (ocd 7-13 years, and adhd 7- present). Neither were ever treated medically (family of such avoidance of mental disturbance ). But yes, I've always wondered if the HPPD was a trigger for this (which I only learned of much much later as an adult) particularly for the adhd in its common relation to distraction and the adhd being linked to the childhood anxiety disorder/ocd. Back then (1990s) I doubt anyone new of it and my descriptions of the distortion were views as healthy imagination (and in jr high school of course i was the enlightened aura and all particle seeing psychic to the universe I thought). Here it is, tho: A) life wouldn't be different because life is here what it is and this is you as you have been. We could both beat our heads against the fuzzy wall of after images but what good would it do usm And B.) HPPD is NOT solely germane to drug use. There are MANY people and children who have never taken any drugs (I'm the shy nerd vegan who barely drinks and never even tried pot) who have lived their whole lives knowing nothing else. Some just assume all see just as such (I know I did for a long time) and just become the annoying guy for the optometrist or doctor to assume is lying about either a psychosis or drug use they haven't experienced. It is theororized that those drug users with the he condition may have already had it to some degree (or even fully) and didn't realize until the psychedelic experience 'awoke' these pathways and prove impossible to ignore long after the drug has left the system. I can tell you how very very easy it is to ignore when you aren't aware of the disorder and grow up striving to both live and assume normality in society. I can only imagine how hard it is for people who attain this after otherwise healthy vision and how unsettling must be. I don't know what the experience of healthy vision is and perhaps this is why I am not encumbered really much at all by hppd until recently in my continuation this may had something to do with my early childhood adhd, anxiety disorder and depression which I have credited to pretty much ruining me. C: Please don't penalize yourself for past drug use as I am sure you are aware is not healthy. You may have gotten the symptoms eventually, and even if not- how could you have known at the time while taking it this would happen? Life is what we make it. It could had been different, and so could today. The past doesn't exist in preswnt reality any more than tomorrow does. Today could be shit or today could be the best day of our lives, and that has f--- all nothing to do with whether or not we have HPPD or not. So love yourself, friend. I won't tell you to learn to love or even accept HPPD , but love and accept yourself as you are right now. Even the stuff you've done and the challenges you live with today. That's not me trying to be some tape coach cheerleader or anything. That's just the reality of it and the only damn way to live really without going bat-shit crazy. Sorry for rambling on (adhd perhaps I have to learn to accept too). Thank you for sharing about this. It means a lot that someone else had these questions. I do wonder. And you aren't alone. Be well. Love and best to you. ♡♡♡
  3. Much more mild for me. More the aura frames lapse sometimes soft texts on next page when reading. But I imagine it would be quite diaturbing to see theses things so clearly. (Its hard enough to grab my keys on my way out the door as it is. And I can't begin to fathom the idea how in other ways this would interfere with daily function). I would avoid driving at night completely as many of us hppd people do or- also driving /operating hazardous objects while fatigued (which in my experience exacerbates symptoms I've found.) Sorry for your struggle I hope there is some treatment along the way. You have my sympathy and support. Be well. ♡♡
  4. This is very interesting. I live in the states and all water here is fluoridized. I have been wanting to nix it 100 percent recently-- it's been on my mind. If I am successful at managing myself 100 percent fluoride free (I live in an area I should be able to purchase FF water) About how long might I see results in a lessening I'd HPPD symptoms of successful? ? and I eat mainly 100 percent organic raw plant based. I was 100 percent raw vegan for almost 1 year about 8 years ago and to say my physical and mental health improved significantly would be an underestimate. I still had horrible habits not germane to the lifestyle which included fluoride toothpaste and other toxic substances outside of diet alone. I do want to try again and do it properly. How long do you suspect I might see results with HPPD after the ommition of fluoride? How long after you restricted the chemical did you see improvement?? (I have had non drug induced HPPD since early childhood and have always lived in the USA and drank tap water here all througy childhood but only one of siblings to have hppd. Have never taken drugs or any psychedelics. Non smoker nondrinker etc.)
  5. Yes light problems and light after image at night are significantly more prominent for myself as well in contacts than glasses. I don't have astigmatism that I know.
  6. Found this forum online am very much hoping to learn from people who have had non drug related early childhood onset hppd (no history of drug use either psychedelic /presceiption/other) childhood. My earrliest recollections or the distortion were during pre adolescence. I only recall being anxious of these symptoms at night after dark as I would ask to sleep with my parents because I was seeing dots, or the air was moving, etc. Other than that, the visual abnormalities were mostly ignored except when used as distraction, etc. I never fully knew I was seeing things differently than everyone else, ans of course there is the risk of sounding psychotic as Im sure many here relate when trying to describe this. I did suffer anxiety disorders in early childhood including a rather aggressive OCD that began to subside post puberty. Additionally, ADHD that didn't subside even through adulthood, and depressive symptoms in adulthood. This year I sought medical treatment for depression and ADD symptoms which have both never been treated (either by CBT/medication) till now. I am concerned about taking drugs if they will aggregate HPPD, as among which I was prescribed was an an anti-psychotic drug respiridone (as an off label treatment for ADHD with additional disorder and depression). What lead me to this site is that it online I read this drug had made HPPD symptoms worse in patients. I didnt mention to my dr the hppd (honestly its not something that i even think about), but i am worried in that after taking the migrain medication topomax 6 years ago (which is also off lable from its primary use as an antiepileptic), I now suffer from percent and very persistent and aggressive tinnitus (constant ringing of the ears) which does bother me emmensely. I am concerned if non drug induced HPPD individuals might be hyper sensitive to side effects to medication (particularly worsening symptoms of hppd and auditory tinnitus which was not present previously). I also mention this as the rare possible side efdect of respiridone was permanent neurological imapirment (something like terret spasm parkensins or something... horrifying. Prior to now, I had never used any prescription medication (even as a child for neither the ADHD or OCD). However now in adulthood as I may be using them (my dr gave me prescriptions for ADD- I just haven't filled them), it has proven problematic, as although I do want treatment I am fearful of side effects including the worsening of visual snow, tinnitus, and especially the potentially dangerous ones I worry I might be more susceptible to considering both my history with the tinitus side effect and the lifelong HPPD already present. I worry this sensitivity might make me prone in sone way. Im hoping to learn more from non drug caused HPPD people here, particularly whom may have struggled with it as a child, and if anyone knows from experience/other insight if there are higher risks to side effects. Thank you.
  7. Hi. Is Qzi still on or someone else with likewise symptom history of childhood onset hppd with no history of drug use? The above bio is near mirror to my own, particularly it having begun in early childhood. I am very curious as to this disorder at the moment as I appear to be sensitive to side effects to medication (particularly worsening symptoms of hppd and auditory tinnitus which was not present previously). Before the onset and through adulthood, I had never used or needed to, any prescription medication. However now in adulthood as I am using them, it has proven problematic. I worry this sensitivity might make me prone to perhaps other neurological side effects of the medication (noted as especially rare but potential). I have concerns, particularly after the tinnitus that I might be in that category of the 'rare but potential. Visual snow is definitely not solely germane to post or present psychedelic drug use. I am hoping to learn more from people here, particularly whom may have struggled with it as a child.
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