Hey all, been a bit since I've posted here. I've been holding up well, and even though I get the occasional DP/DR, I'm managing. I'm heading back to school real soon, and was wondering if anyone had any experience with non-stim ADD meds. Used to take Adderall, but had some really bad DP/DR the day after, and have read that in general stims are not great for HPPD. Doc just prescribed me some Intuniv ER (Guanfacine HCL ER) and said it should kick in after a couple weeks. I'm worried if I should even start taking it though, and pretty much no one has any input on non-stim ADD meds with HPPD online. If anyone's had some firsthand experience, or even some scientific as to why it should/shouldn't make my HPPD worse, I'd greatly appreciate it
I have had HPPD for 15 years,
I am much better now than when it started, I have tried so many natural and psychological techniques that I feel its the right time to test if certain Medical treatment could work.
My main symptoms are now anxiety, depression, heavy brainfog, visual snow, problems reading - writing, focusing and depersonalisation sometimes.
I have found a neurologist in the city of Barcelona where I live, and I will like to ask you guys for a favour before I meet him:
is there is an order for which meds are to be tried first?
which meds in your view have been the most successful in treating some symptoms?.is there a page with these things online?
I tried a low dose of diazepam and the day after my symptoms where very high again so I stopped, same thing with an antidepressant.
Having said all of this I will like to share some hopeful news too: I have been fortunate to have had days with almost no symptoms, have traveled extensively, managed to finish my BA in fine arts, lived in various countries, got my drivers license, can now read (even though i get confused sometimes), I can hold conversations much better (less DP), at the beginning of this disorder my life was very very miserable now its a lot better.
Thank you for reading.
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.