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Hello fellow HPPD'ers!


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Hi everyone!

First off, I'm glad to be accepted here. I was going to post a couple of weeks ago. But I got caught in watching all episodes of a tv-show back to back trying to push out how awful I feel. And then I just don't do anything but that. Anyways, here I am!

I could give you the long story, but I think it's all pretty similar to your experiences. Over a year ago I had a single experience with XTC, and after that my life was never the same. I was 17 at the time. First thing I noticed was a different feeling in my head. Found it very strange, but presumed it would pass in time. Thought process had changed immensely, memory became deficited, attention even worse. Overall cognitive vigilance which I held so dearly, I had lost, along with my self-confidence. Anxiety set in, and so the journey began in finding out what the hell happened to me. Months passed, different theories, brain-damage etc. etc. Sure you guys all had the same phase. Tried nootropics, supplements, healthy living, the whole 9-yards. Nothing seemed to ameliorate my affliction. As time passed, the initial anxiety smoothed out a bit, not much, but enough to start noticing the visual effects. Now they where there from the start, but the cognitive aspect was more prominently present for me. I had this "thoughts can influence your perception of reality" idea, and presumed the changes in thought caused this diminished perception. Then after more searches I read about HPPD. That night I was lying on the couch, paying attention to the ceiling, and hell indeed I had HPPD! Flickering lights swirling and crawling around the ceiling where the first of many symptoms I noticed. I started noticing more: objects would disappear sometimes, nothing would stand still, it all swayed and morphed, colors would changes (hues), visual snow was pretty evident as well, depth perception was off, sometimes clouds and stripes of shadow would appear, float, and disappear whilst changing color. Bright dots would appear and connect lines between them. I might be missing some things here, but you get the picture. I read up more on HPPD, and got pretty demoralized when I read of the rarity of the matter, and the little information available on the subject. And that there was no established cure. I gave up for a time, thought I had screwed my brain for good now, that I would never return back to reality. My memory recall was altered: all bad memories long forgotten came back to me, all good ones faded drastically and the sensual recall of the activity was nowhere to be found. Visual recall was so vague. My fondest memories were reduced to a mere intellectual "knowing" that it had happened. Often I found my only motivation to persist, to lie in this "knowing" that I had once been who I was, and that I had been content and happy for long periods of my life. That, and humor.
Anyway I started trying anti-depressants, some from friends, some ordered online. Fluoxetine, Tianeptine, Selegiline, nothing really helped. Only thing I find so far is that Modafinil makes me better at math, but not nearly the same level as I used to be.

Somewhere inbetween all that I also tried Tabernanthe Iboga. That's a story for another day.
Finally decided to go to the doctor, which referred me to a psychiatrist. After finding out about the 3 month waiting list, I tore the refferal letter to pieces, and forgot about it. Two months later I decided I had done everything I could possibly do to help myself in my knowledge, and that I had to make an appointment. In the meantime I had read about Levetiractam/Keppra, and found some inspiring stories. I went to the doctor, said I couldn't live like this any longer and needed help a.s.a.p. Couple of days later I was at the crisis service where they had never heard of HPPD. Great. I'm sure you all know how hard it is to describe HPPD to someone, let alone have them understand what you are going through. Now I got referred to the addiction clinic, on the presumption they would know more about drug related disorders. And behold, I must wait another 4 weeks before being able to talk to them, let alone actually persuade them into prescribing me Keppra. What a long and tedious trail of scared self-proclaimed professionals one must travel to get the help they need.


Well that was pretty lengthly after all, my apologies. It doesn't describe my entire experience with HPPD, yet it paints a basic picture. Anyhow, this is where I stand now. Once more I have to wait. In the meantime I hope to be able to contribute to this forum. I have found it a great source of information. I hope to be able to add some experience with Keppra in the future, for those who could use a succes story (which I am ofcourse hoping, my story shall be). Enough rambling :)

Thanks to r.trudeau and HBB for helping me out!

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  • 2 weeks later...

Haha I think we all know how hard it is to get someone to understand hppd. Where are you? Somewhere in the US? 

Tell me about it, my mom is still convinced im schizophrenic, even though she hasnt the slightest clue what the symptoms would be lol If I was schizo, I wouldnt even be able to tell the difference between the real world and my "delusions."

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