I have had HPPD for about four months now. I know it's not a very long time for how long it can last but, it's so awful living with this every day. The only way I'm personally able to describe it is that the air around me is suffocating, like a have no space in an empty room filled with breathing walls, visual snow, static or tiny patterns. Another thing I have is very bad depersonalization and it's the whole reason why my anxiety comes out like it does. Before I had HPPD I have only had an anxiety attack 3-4 times but now I get one almost every other day and it's so hard to manage hanging out with people in fear that I will start freaking out of no where and have to be alone. Usually when I am inside of an attack everything is so colorful and it looks like I'm on mixtures of drugs and it can last anywhere from a couple of seconds to an hour or 2. The only thing I like so far about this whole situation is that I've been able to find myself through art. I've found that if I'm feeling anxious I can just draw something and it will really help me forget. Everyone always tells me that they like the things I do and how they love that I found a unique style that belongs to me. I'm very happy that those people are supporting me even though I still wish I hadn't done the things I did to get this way. It all started when I did 3 psychedelics in over the corse of 8 days including: LSD, LSA and DXM. It took a while for my symptoms to come through but I can tell that all 3 of these drugs made a huge difference in my life because I feel the things I felt to this day when I was in all of those trips. I have been on a few medications so far to help the visuals and depersonalization. Including Prozac, Busbar, Abilify and Gabapentin. All of these drugs made things worse for me and I wish I never took any of them. Except for Gabapentin because I have a feeling it might work in a higher dosage. I have talked to my psychiatrist about HPPD and she had no clue what it was and didn't seem interested. She just jumped the gun on antipsychotics and labeled me as "psychotic" (because she's an asshole) I've done enough research to know that only in very small cases do antipsychotics help HPPD because it isn't the same thing as Psychosis at all. In my research ive found that Primarily benzos including Klonopin, Valium and Xanax work the best for depersonalization and visuals. And levetiracetam has been able to just help visuals. I really want to find a psychiatrist who understands instead of one who asks me if Acid and LSA are both LSD. I need someone who actually knows about drugs but my mother won't let me switch. Is there anyway that I can get her to understand or believe me and get me the medications I need without seeming like I'm pharma-shopping?
I've had what i believe to be HPPD for about 3 years now, after a slew of mushroom trips around age 15. I cant pinpoint exactly when i started showing symptoms because i feel they came on very subtly and gradually, and after 3 long years, seem to still be worsening. I remember the first thing i noticed was a light visual snow or static fuzziness that i could only see at night or in dark places, then slowly it started becoming more noticeable with time. I would start then seeing the visual snow or static fuzziness during the day time, most noticeably when looking at something solid and with minimal detail, like a wall or a cloudless sky. The trend of it getting worse continued, i would start getting progressively stronger tracer vision, beginning with things like car and street lights at night. As before, over a few months these symptoms began to translate over to during the day time. Now its to the point where i get tracers as simply as slowly running my hand past my eyes, and the visual snow is strong like what you see on a television that isn't getting any signal. The visual snow even forms into psychedelic shapes sometimes, spirals and things that look like your phone screen when there is grease on it. This is most often at night and in the morning when i am tired, but is not limited to that. When i close my eyes all i can see are these weird colorful randomly moving shapes and images. If i do something like read a book or read something on my computer, when i close my eyes i just see randomly occurring letters and numbers, and this lasts for 15 minutes or so. Florescent lights make all the symptoms particularly strong, so you can imagine school was quite difficult.There are halos around almost everything i look at, especially letters and numbers. My memory and ability to think straight and clearly feels like its degenerating. I cant focus on anything, and having ADHD doesn't help aha. I've also dealt with things anxiety and depression and depersonalization and severe migraines so that cant be helping. Ive completely stopped all substances except alcohol, the occasional cigarette and the occasional joint to help deal with the stress. But i used all 3 of these things and more up until about a year ago. none of it was hallucinogenic though
My point of posting this was not to for attention or plead my case on how hard it is to live with. I know there are people on here that have it worse than i do, but i rather just posted this to see if anybody can relate to my experience so far and has dealt with a similar situation. I haven't read many stories of people with HPPD that seems to be progressively getting worse, so i'm just seeing if someone can confirm its HPPD and not something else. I've been to countless doctors across Toronto and most of them have even heard of HPPD, let alone how to treat it haha, so i kind of gave up on the medical route. Ive had brain scans that all came back negative for anything so HPPD seems to be the only thing i have found that matches my symptoms. Its a scary thought thinking about what it might amount to if the symptoms keep exaggerating like they are doing now. Its only been three years so its pretty debilitating thinking about what it might be like after 10...20...years etc if it doesnt stop, as i only just turned 18 aha. This is my first post so any replies or support really helps, thanks. -Cal
For the first couple years I jumped around to different doctors. No one had answers. After all this time I finally got the courage to google it. I can't beleive a lot of answers were so close this whole time. Ive been on Effexor now for more years then I can remember. It barely keeps me afloat. Ive been reading these pages all day and keep hearing about Kepra. I made a doctors appointment. Any advice about dosage or combinations would be greatly appreciated.
Should I just avoid it and not take it?
My doc prescribed it because, as some of you may know, I have/am developing a psychotic disorder.
I know it's primarily a dopamine antagonist and that HPPD seems to primarily be linked to the serotonin system. But as I've read on this forum and elsewhere, anti-psychotics should be avoided.
However, it seems like most people are talking about atypical anti-psychotics, which are both dopamine and serotonin antagonists, rather than typical anti-psychotics like haloperidol.
In my research, I haven't found many reports of using haloperidol to treat HPPD or using haloperidol to treat comorbid psychosis with HPPD. I've read the Moskowitz study, but in that cases it was used to treat flashbacks, not necessarily HPPD since before the diagnostic criteria were introduced into the DSM, flashbacks and HPPD were lumped together, so it isn't exactly clear whether they were treating flashbacks or HPPD.
I haven't seen many anecdotal reports either. The ones I have seen are mixed in that they say it either 1) helps, 2) does nothing, or 3) makes HPPD worse. What's disappointing about these anecdotal reports is that the authors don't include much information such as their particular dose, other comorbid disorders, hallucinogen that most likely caused their HPPD, other medications and dosage, etc. They just say whether it worked, didn't, or made things worse.
So, if there is anyone on this forum that has tried haloperidol and is willing to give a detailed description of their experience, I would very much appreciate it if you could post in this thread and help me determine whether I should try this med or not.
I obviously want to treat the psychotic symptoms, but at this point, my HPPD is what's causing me the most distress, worsening it simply for the sake of treating another disorder that isn't causing me much distress would just push me over the edge.
Here's my detailed report:
Comorbid disorders: Major depressive disorder, panic disorder, schizophrenia/psychosis NOS Current psychiatric medications: 1mg clonazepam twice daily (helps with anxiety), 100mg lamotrigine twice daily (some improvement of visual symptoms) Current non-psychiatric medications: Albuterol, 2 puffs as needed for asthma Past medications tried for HPPD/other disorders: Escitalopram (stopped at 2.5mg once daily, made HPPD worse, 3 day trial), risperidone (stopped at .5mg twice daily, made HPPD worse, only lasted 1 day) [NOTE: These were taken in roughly the same time period] Drug(s)/hallucinogen(s) most likely to have caused HPPD: DPH (diphenhydramine aka Benadryl), used on a nightly basis for ~2 years at doses of 150mg+, potentially MDMA (only ever tried once), potentially THC (only ever tried once, had a severe panic attack) Proposed dose of haloperidol: 2mg once daily tapering up to 5mg once daily Other proposed medications/supportive agents: Benztropine 1mg twice daily to control EPS of haloperidol The main reason I want a detailed report is so I can make a better judgement as to whether it will worsen it or not and thus whether to take it or not. The detailed report gives me an indication of what the underlying cause is and what system is affected in particular. Knowing the drug that caused it and what drugs made it worse/better gives me an idea of the neurotransmitter system that's affected the most by your HPPD. In my case, it seems like mine is primarily linked to the serotonin system and acetylcholine system considering that my drug of choice was DPH, a well known anticholinergic, and that serotonin antagonists made it worse. In particular, for me, it seems like I likely have an acetylcholine deficiency and something funky with my serotonin system (potentially a sort of serotonin toxicity since risperidone blocks serotonin from being absorbed and escitalopram increases it, thus highly increased levels of serotonin).
Thanks in advance