Hello

[TheForeverTrip]

So ive been suffering from HPPD for about 2 years now, after getting into a bad car accident while on shrooms. I haven't cared really about getting better until now, because I thought my life was over and might as well ride it out, you know? Recently though I've gotten inspired to try to work on fixing my brain. Figured its worth it to post here, as I will be trying a bunch of supplements (I know not recommended but i'm on the edge), as well as ceasing from all drugs. IDK how active this forum is now, but I figure its worth a shot. As I keep hearing that reaching out to a support group, and other people can actually help symptoms, at least cope with them. So thank you, if you have any tips for me I would love to hear them.

[AF44]

Hi there!

I’ve had HPPD for about 25 or so years now. It was horrible. I went to a lot of doctors that did CT scans on me, eye doctors, etc. and all my tests were normal. I knew what was happening to me was from the LSD I dropped, but I was way too ashamed to admit I had taken drugs (and kind of afraid I would be in trouble for taking illegal drugs.) I just chalked it up to, ok, I gave myself brain damage from doing LSD and figured that was that. What made it worse was that back then (late 90’s) no one had ever heard of HPPD. I had never even heard of it. I wish I had because I would have known to cut down on caffeine, not taken cold medicines, never drink energy drinks, etc because it would flare so bad sometimes and I couldn’t figure it out. The WORST part was the DP/DR. I felt like I was trapped behind a wall of glass and nothing seemed quite real, and I couldn’t concentrate. One day in 2009 (?) I was having a HORRIBLE flare. I had been drinking sooo much Red Bull and taken medication for a cold. It was beyond the point. So for the heck of it, I started Googling my symptoms and lo and behold…a whole page on HPPD! I was so “happy” I cried. The article said that clonazepam helped the symptoms. I immediately went to a neurologist, who did not believe me, and thought it was just migraines. I said to him, “So I’ve had an 11 year migraine?” I couldn’t get anywhere with him so I left. Then he called me and said when he was on his lunch break, he looked up HPPD. He was still pretty skeptical, but open-minded enough to start me on clonazepam. My symptoms were 99% gone. I could not believe it. No more DP/DR, and no visuals. My eyesight was so clear and beautiful. Anyway, I’ve been on clonazepam ever since. I take it every single day. The flip side of the coin is that doctors are reluctant to prescribe it because it is a benzo. So far, I have been beyond blessed to keep getting it. Maybe because I have been on it so long they figure it would do more harm than good to take me off of it? I don’t know. However, I live in great fear of the day I can no longer get it (you never know.) So part of me wishes I had not taken it, but a big part of me is glad because it helped me so much. Nowadays there are other medications that are supposed to help that are not addictive. Maybe you could look into that? I don’t trust supplements in any way, shape or form, but if they help you then that’s great! Sorry, I tend to meander and then lose track of what I was talking about! Lol. Some good tips are never take drugs again (which you said and that’s awesome because some people still take drugs or want to! I don’t get it.) Don’t take cold medications, they have DXM in them. Avoid energy drinks and don’t drink a lot of caffeine. Never take an antibiotic from the fluoroquinolone family. (You can look up what drugs are in that class of medications, but basically anything ending with “floxin” or “flaxin”, and avoid Ciproflaxin like the plague. It’s a terrible medication even if you don’t have HPPD.) Sounds weird but don’t keep focusing on it. Alcohol makes it worse. Drink in moderation. Don’t be afraid to tell your doctor. The diagnosis is in the DSM-V. Let them know that. I guess that’s all I can think of for now. Sorry this is so long!!! This forum is AWESOME. The people here are so great, they know what you’re going through, and there is a lot of good info on here.