AF44

Update: you were right Jay! Total “bakeover” haha, that’s what we called it when we smoked wayyyy too much pot the previous night. I noticed my symptoms started getting worse, and not only that, I was so brain fogged and “duh” I couldn’t even think straight. I was going to bed at like 6:30-7 in the evening! The night before last, I got a horrible night’s sleep. I kept waking up all night and then got up at 4:30. Last night I didn’t take the Melatonin and I feel so much better! I got a good sleep and my visuals went down and I actually feel like I can think straight! Woohoo!

I was literally about to say the same! Like, Siren001, tell us all of the wonderful, heroic actions you are taking to try to “cure” this. Are you actually DOING anything? Do tell. All you do is repeat yourself and personally I think you are a huge pain in the ass and totally negative.

I’ve heard of qEEG. How does it differ from a regular EEG? I guess what I’m trying to ask is how a qEEG can show something different? Does it show that we have HPPD? I worded that stupidly but hope I’m making some kind of sense

Definitely keeping busy helps! Sometimes days would go by and I wouldn’t notice my symptoms hardly at all because I had so much going on. It was lovely and made me happy!

This sounds very strange, but I got to thinking about it while reading a post on tinnitus. I had extremely bad tinnitus as a child, ongoing. Ever since I was like 5 or 6. I just remember that it bothered me because it was so loud but other than that, I didn’t think anything of it. When I would close my eyes (at night, to go to sleep) I would see patterns. 3 different ones. Blue, green and red “minus sign” looking shapes that marched in a line (sorry, I can’t think how else to describe it.) Then it would switch to a different pattern that I can’t remember. The third was “bubbles” all clustered together, pink ones, like soap bubbles. The pattern would repeat in exactly the same order. I thought it was really cool. Like I said, I was a little kid. I mentioned “the lights” to my dad once and he was alarmed and was like, “What lights?” I tried to explain it but of course he didn’t know what the hell I was talking about, lol. When I got HPPD, I would see exactly those same patterns!!! I was like, wtf?? It scared the hell out of me for some reason. I’m not sure why I posted this, but any thoughts?

My sensitivity to stuff is off the charts. I quit doing any drugs after I got HPPD, but I smoke cigarettes and am a coffee fiend. The coffee definitely makes my symptoms worse. Cigarettes don’t affect me. I was drinking a lot back then (I haven’t had a drop of alcohol in over 6 years now) but I do remember it making my symptoms a lot worse. I won’t give up my coffee though!!

Yeah I hear you. I can’t take anything like that, cold medicines, etc. It’s pretty ridiculous how many medications and supplements make my HPPD worse. It really sucks. Like, I’m anemic and the dr tells me to take iron supplements…and I take them for a day or two and then poof! Can’t take them. What the heck.

I have Chronic Fatigue Syndrome in addition to my HPPD. (You can research it and see if your symptoms match up, but from the way you describe it, it sounds like there is a chance you do have it.) I get so exhausted sometimes doing small things it’s ridiculous. I actually bought a shower stool because just standing in the shower exhausted me, and when I tilted my head up to wash my hair I would get dizzy. Also, you can get full body aches at times. And my legs would get numb and tingly as well. All my meds I’m on definitely don’t help lol. You should look it up.

Absolutely I consider it torture. I’d rather be tortured physically.

Drug-drug interaction is particularly interesting to me. When I got the HPPD, I was on Ciproflaxin (an antibiotic for a UTI.) It is a HORRIBLE antibiotic and in my opinion should be taken off the market. There are so many horror stories from people who have taken Cipro just by itself. I wonder if the Cipro combined with the LSD caused my severe HPPD? I just remember my trip starting out completely INSANE and I was like wtf.

Oh thanks! I didn’t know what cev was and I have it lol

Sorry, not makes me feel better that another mother is going through the same thing, more like it’s calming ME down to know I’m not alone with my son having it. I’m sorry that I didn’t word that right.

I am so sorry to hear about your son and I share your pain more than anything, as I myself have had HPPD since 1998 from doing LSD. Your post is a year old, so I don’t know if you will see this or not. I’ve mentioned it several times on this forum (people are probably getting tired of hearing about it!) but at the end of October, we had a small Halloween get-together. My 15 year old son wanted his hair dyed pink as part of his costume. He has extremely long, thick hair (all of us ladies are so envious! ) I sprayed three cans of that awful Halloween hairspray on his hair. We were in the living room with towels on the floor. I didn’t think to open a window. The smell was so awful we we joked that it was like breathing bug spray. A day or so later, he came to my room (I was already in bed) and said he felt “lightheaded.” I thought maybe he was dehydrated, so I told him to drink some water. The following morning, he told me he was lightheaded and woozy, I told him to drink water. (Yes-water is the cure-all for everything…not.) Later that day, he told me that he had static in his vision, tracers, and that objects were warping and looked like they were “breathing.” Having HPPD myself for the past 25 years, I knew that his symptoms were textbook HPPD. I of course panicked. I took him to the ER just to double check there wasn’t anything else going on. His CT and bloodwork were normal (of course.) After awhile, he stopped mentioning the visual symptoms (I guess the warping and breathing objects went away, thank goodness,) but he was having what we termed “motion sickness.” He described feeling like the wall was moving towards him, a feeling of swaying and rocking when he was still, and “wavy” vision, like when the heat comes off a bbq (that’s how he put it.) He missed so much school I had to talk with his counselor about alternative options. (I didn’t mention HPPD to anyone.) From what my son described, it basically sounded like he was trapped on the carnival ride from Hell. The doctors gave him meclazine for motion sickness, which helped a little bit, but not much. I myself have been on Klonopin for about 14 years now, every day. It took so many of my symptoms away it was astonishing. However, the flip side is that I’m basically trapped on it, and the withdrawals and rebound HPPD would be hellish. So I think it’s good that he doesn’t want to be on medication. Jay always gives wonderful advice. He told me that it will probably fade or even go away after awhile. Not guaranteed, but definitely hopeful. I take solace in the fact that he is young and his brain has more elasticity and a better chance of healing. I guess my best advice is to be there for him and try to maybe distract him from his symptoms. With my son, he likes to play Tetris (luckily he is still able to focus on games and things) and I play Tetris with him. We watch shows together on TV. I think his anxiety ramps up his symptoms (that’s kind of a “duh” thing to say.) He has just started an online program through his high school and he already seems to be feeling better. Also, he now has a therapist. I think you should stay positive and hopeful. It’s hard. Myself, it’s bad enough that I have HPPD, but it is utterly heartbreaking knowing that my son has it. At least it is a known diagnosis these days, back when I got it, no one had ever heard of it, not even me. I just chalked it up to “Well, I gave myself brain damage from doing drugs.” I have no idea if this post has helped in any way, but (as horrible as it sounds, and I so wish your son had not gotten HPPD) it makes me feel a little better to know that another mother is going through the same thing I am. I will pray for your son, and I believe he will heal but that it will take time.

Hi! I know I’m late to the party on this one, being as it’s the end of November and all, but your experience is so similar to mine it’s uncanny! I got HPPD in 1998 and have had it for what, 25 years? (I can’t math right now, haha.) I never took any drugs again though I did drink a lot which distracted me from my symptoms, but obviously was just making everything worse. Your advice is spot-on. Thanks for sharing your story!

You are dead on! I’m definitely stuck on mine. Helped a lot but in a way, wish I had never taken anything

Thank you! I thinks it’s so odd that I got it, and he got it. I believe in God and I think He makes everything happen for a reason, even bad things. I thought the same thing…I was doing a lot of acid and smoking tons of weed. As soon as I got HPPD, I never took drugs again. Who knows what road I would have gone down? Maybe I would have tried other drugs like heroin or cocaine. Being 15, maybe this will prevent my son from wanting to try drugs (to my knowledge he has smoked pot, and “done cough syrup” at least once that I know about.) I didn’t even think that stupid colored hairspray would have so many hideous chemicals in it that it could cause this to happen! But I suppose it’s like when people huff glue and bug spray and all that other crazy stuff. Thank you for responding! I do feel better about the situation, everyone here has been so supportive and has given me good advice and hope! It’s only been a month, so hopefully his symptoms will start to die down. His worst symptom is “motion sickness.” That’s what we call it. But by “motion sickness” he means that he feels like he is swaying and moving around while he is sitting or standing still, and that objects appear to come towards him, they “breathe” and warp, he sees the wavy vision (he describes it as the heat that comes up from a bbq, I totally know what he’s talking about because I remember having that.) Basically the way he’s describing things makes it sound like he is stuck on the carnival ride from Hell. That’s the part I’m most worried about. He has the visuals and I think the DP/DR, but the “motion sickness” is the worst. Then I myself start to panic when he mentions it! He doesn’t mention it often, he’s pretty stoic, so I know that when he brings it up, it must be pretty bad. Luckily I am a stay at home mom, so I can be here for him 24/7. That’s a blessing!!

Lol! I’m so happy to hear that you are feeling better!! And I will continue to hold my nose and walk away when my stepdad takes a hit off his pipe

Hi Alain, Don’t be scared. When I first got HPPD it was horrible. I panicked from the derealization-that was almost, if not more, horrible than the visual stuff. Ironically, panic creates more derealization! The symptoms will eventually lessen. I think it’s great that you have the DR therapist and the intake for the group. I also have an anxiety disorder. I think it’s a vicious circle, the anxiety aggravates the HPPD symptoms, and then the symptoms cause great anxiety, ‘round and ‘round she goes. Keep us updated!!!

Totally. I can’t take any kind of anything with an antipsychotic in it. I was put on some weird medication called Saphris and it was awful. Everything looked red! I mean, like if you had red lightbulbs in the room instead of regular ones. And my visuals were way worse. The same with Seroquel (sp?) when I was put on it. I was so hyped up I was pacing around the house calling my therapist to ask how it would be before that crap was out of my system. I have heard antipsychotics are the worst thing you can take for HPPD, especially Risperidone. . I know I’m not spelling these meds right which is annoying, lol, sorry.

I don’t really know (which isn’t helpful lol.) I’ve had HPPD for 25 years and have been on clonazepam for about 14 years, so I don’t remember if I had that or not. What I remember is that after awhile my HPPD symptoms became tolerable, and then I would get flare ups, and those would eventually settle down. So maybe you are having a flare up and it will settle. I believe it will. I think resting your brain will help. Like when you have a concussion, you’re not supposed to do anything to stimulate your brain. I know it’s probably unhelpful but for real, try not to panic because it just makes everything more awful. Also, lie down and put a cool wash rag on your forehead. That’s my go-to for everything. My son and husband were just teasing me about it a few days ago, but I’m convinced it helps! I’m so sorry you are having these symptoms, but I assure you, I believe they will go down even though it may take awhile.

Yeah that’s a lot of Klonopin! I take 3 mg per day. What is Pregabalin? I guess I could just look it up lol

I get flare ups whenever I am sick with a virus and sometimes they last only a couple few days, or sometimes a week or longer but then the flare up settles down again.

This is stupid but when you said you wondered if you ripped your eyeballs out, would the visuals go away? I have literally thought the same thing myself. I keep hoping I’ll go blind as a bat. My best friend (who does not have HPPD but knows all about mine) said that probably wouldn’t work because I still see static and all that when I close my eyes. So yeah, it’s a brain thing, sigh. oh and I probably sound completely ignorant, but what is CEV?

Thank you for your story, Gabriel! Truly. I think I posted this (and bothered poor Jay1 by sending him a panicked email, lol, to which he kindly responded to and his words of comfort and wisdom helped tremendously.) I have had HPPD for about 25 years. I got it in 1998, two months before I turned 20. It was BAD. Blah blah…fast forward, to make a long story short, for Halloween I sprayed three cans of pink hairspray in my son’s hair for his costume. We were not in a well ventilated area; basically we were both “huffing” the fumes from this hairspray, more so my son, who is my youngest and is only 15. About a day and a half later he came to me describing classic HPPD symptoms. It about killed me. I have been praying his symptoms will go away. So to hear your story gives me so much hope. My son is very healthy and I’ve been letting him sleep in and take it easy so he can “rest his brain” lol. I love this forum and I can’t even tell everyone how much I appreciate them sharing their stories, fears and advice. Back when I got it, no one had ever even heard of it including myself. Now it is a recognized disorder and science has taken great strides to try to figure out what causes this and how it can be helped. Thank you!!!

I am terrified of secondhand weed smoke as well. I actually hold my breath if I happen to be around it. Or I’ll walk away. I don’t know anyone who really smokes it though except my stepdad, at his house (it’s legal here, so actually there are times that the smell will drift in the wind if I’m out and about.) I panic when I even smell it. Since I’m never around people who smoke it, I don’t know…so I don’t have a clue if my HPPD could get worse from it. But I firmly believe that your flare will fade. Also, it’s a “duh” thing to say, but if you can, try not to panic. I have had flares from different things and they eventually go away.