alisa

Please don't compare my experience to your own. We all seem to have different amounts of damage. I am now 59 yo. I've had HPPD since 2009, last drug use age 30. I did a lot of very strong LSD about age 15 and then mild usage of psilocybin and mescaline. I had some really bad trips that I didn't come down from for days. I would say I had mild visuals from time to time if I smoked weed for instance. I stopped all drugs and alcohol age 30. Oh yeah I had quite a bit of trauma in my whole life and these times impaired my vision and reality. So at 56 I had an extreme surgery and had a horrible time in icu. couldn't breath etc. When I got home I was seeing like hieroglyphics on all light surfaces and walls, felt like not in my own body. Horrible. I can't tell you how many MDs saw me. Finally after 2 yrs I wound up up in a psych unit and this wonderful psychiatrist dxed me in 5 min. It happens very rarely late in life that in cases of Ptsd And this botched med/surg procedure and just different combinations of life events. I developed full blown hppd. For many months it was a nightmare. Finding this sight and for me medication and time helped. I have a great life today. I'm so thankful for all of your stories and hey if anyone is over 50 with this get in touch with me ok.

You guys really crack me up.

I have both and it makes life kind of crazy. If my sxs of ptsd are acting up it worsens the visuals and visa versa. My HPPD started like 30 yrs after taking a lot of very strong LSD in the late 60s and early 70s. It's very rare for this to happen. Ptsd is partially what brought this on so late. I haven't seen much talk on here about it, but I think it's somewhat related in the damage to the brain dept.

The way words sound coming out of my mouth is the same, but I do have some issues with communication. Like sitting at a large table of friends at a restaurant. I stay a bit mute, because the more going on around me the more distracted I get. I usually just talk to the person next to me. Other people's speech is difficult. I don't always catch all the words someone says. I just ask them to repeat. I think some of this is due to visual distractions, too. I don't let these things keep me from going out though. At first it did, but I'm adjusting and really enjoying my life in spite of it all. Alisa

Oh yeah I am the one who got this 30 yrs later or maybe it was just dormant. One reason for that I think is that I stopped doing drugs and alcohol in 1983 and then when I had surgery and was in ICU they pumped me full of drugs. I don't think anyone really knows. For this to happen is the rarest of things so don't worry. I also have ptsd, maj. depression, learning disability etc. I don't pay particular attention to these dxs, because most everybody these days has some combination of these things. Sorry I get long winded at times.

Hello Boogres, I'm a lot better than I was and doing very well actually. Glad someone, somewhere remembers me, thanks. Hope you're good. I had stopped driving, but I'm driving again. I can't deal with the highway though. Getting out of self really helps and playing music. How have things been with you? By the way I take a good deal of medicine. Neurontin, clonodine, Cymbalta, and Wellbutrin. Together these meds seem to be helping. I can't take benzos. Take care

Well, now I can't see your name to spell it right, something like Ghonan, sorry. Anyway hi. The color thing I don't understand. The thing that you're describing is a little different for me. It's usually green or purple not real bright, but like a section of the wall will have color for just a minute. I've even thought that someones wall was painted that way. It's really good to be able to talk about this stuff. Even though we experience this somewhat differently it's also similar.

This is really interesting. I don't smoke pot or take any other drugs, because I'm an addict, but at night when I close my eyes I see stuff things besides my visual stuff. I haven't said anything to people around me, because most of them think I'm crazy already. If I relax my mind I feel a kind of pulling toward the center and I start seeing a tiny vortex of light. If I try to see it I loose it. It 's crystalin in composition. It comes closer and moves for a while then goes away. It can happen during the day, but rarely. I have also seen shadowy crowds of people like on a movie. Well now I sound totally crazy. I agree with Jay. It can be kind of pleasant. Like doing meditation. Does any one see mild colors that move just like a lava lamp?

Wow, it's crazy this is coming up right now. I just read some of my old med. record and it has psychosomatic all over it. It makes me so angry I could scream. I had one doc who in a sarcastic manner would ask, well what do you see, exactly. I answered something like geometric patterns on the wall and he rolled his fucking eyes. Do they understand how painful it is to be treated like this? I had something like a psychotic break and finally in the hospital a doc who really cared dx me. The docs I have now pretty much have let me explain it to them and they are almost letting me prescribe my own meds. We are basically experimenting. What worries me is how many young people are being locked up for psychosis when they could have pretty normal lives with the right care. I hope this gets out there soon.

Wow, it's crazy this is coming up right now. I just read some of my old med. record and it has psychosomatic all over it. It makes me so angry I could scream. I had one doc who in a sarcastic manner would ask, well what do you see, exactly. I answered something like geometric patterns on the wall and he rolled his fucking eyes. Do they understand how painful it is to be treated like this? I had something like a psychotic break and finally in the hospital a doc who really cared dx me. The docs I have now pretty much have let me explain it to them and they are almost letting me prescribe my own meds. We are basically experimenting. What worries me is how many young people are being locked up for psychosis when they could have pretty normal lives with the right care. I hope this gets out there soon.

Congratulations! It is definitely a challenge to operate in this world with HPPD. I was very discouraged the 1st 2yrs, but then I just started trying things. I'm a singer-songwriter and I just started back playing in clubs. It's really weird when I get on stage because the lights a are so bright it's like I'm in one big bright light and I can barely see the mic in front of me. But if you think about it music comes from your heart and soul and I just close my eyes and play and it's alright.

Hello Tigress, So happy to read your story. What a journey! Your the first person I've found who took their acid trips in 69-70. I was 15-16 and took way too much acid. Also continued on drinking and lots of drugs. I think I was too messed up to know if something was wrong. I started college, marriages, children, all those life things. I don't think I paid a lot of attention, because maybe I was ashamed. When lying in bed off and on I saw like hieroglyphics in pastel on the ceiling. It was so rare I never gave it much thought. My story got stranger when I had thyroid cancer and surgery when I was 56. It's a long story, but basically things went wrong and I was in icu with a paralyzed throat, struggled to breath for a long time. When I got out I was seeing patterns on walls and faces. And I really felt like I was on a bad trip. I kept asking one md after the other could this be from acid 40 yrs ago. Oh no, we are just so f-ing more powerful and smart than you. You are psychosomatic. After a year of this I did wind up in a psych unit. Thank God for the one Dr in the whole hospital (Vanderbilt Med Center) who knew about this and he'd only been there 2 wks being assigned to me. He diagnosed HPPD in 5 min. I'm just one of the rare cases that HPPD came upon after anesthesia and severe stress. Lucky me I'm doing ok take clonidine and neurontin and wellbutrin. Hope I hear more of your story

Boy,there is a lot of different information here and I have some trouble processing a lot of information. As a matter of fact I try to process as little information as possible. My Dad was a doctor, probably of Dr. Abraham's generation and those guys didn't do a lot of drugs and mostly they don't understand addiction. It's sort of like if you were studying cures for liver disease you would be way to busy to council the patient's in your study about their alcoholism and depression You might suggest AA or psychotherapy,but that would be all you had time for. It seems to me that HPPD is one of the most seriously puzzling brain problems you can have. I'm 58 yrs old and I have kind of a settled life. I can't imagine being young with HPPD and all the drugs that are around and having to go to work and school and all that. I don't even drive, because my vision is really bad. I write music in my little condo in Nashville. I'm a retired Nurse. I also took so much acid in the late 60s and 70s. That it came back on me after an operation 2 yrs ago where there were complications that put me in a ptsd state when I couldn't breath for an extended period of time. Hard to explain, but when I left ICU I was seeing hieroglyphics on walls and in certain light it looked like people's heads were shimmering. I had barely seen a little of that if I didn't get enough sleep or is I was hungover, but it was very brief. Anyway as usual I got way off track. I'm a recovering alcoholic and drug addict and that's actually in my favor. If a Dr tries to give me klonopin I know from countless experiences that I will abuse it the minute I get home. I take Clondine, Neurontin,wellbutrin, cymbalta. Cymbalta is the only SNRI that's not as bad on my eyes and it really helps me. Depression is another defect of the brain. Great. Wellburin used to make me nervous, but the colodine offsets that. They give it to kids who take ritalin also for the same reason. I used to believe that it's better not to take any medicines, but it has to be on an indiviual basis. I tried not taking them for a goodwhile and ended up in the hospital for 2 weeks. Good luck to all of us on here. This is a tough thing to have and I wish everyone well. I think HPPD screws with our emotions too

Hi I survived the 60s and took quite a lot of the very strong acid they had back then. I have HPPD that cropped up 30 years later. I'm told this is rare. Several of my friends that ended up being diagnosed as schizophrenic probably had HPPD. Unfortunately HPPD was not well known back then. Heck it's not well known now. There are plenty of us "old folks" around. I've pretty much stayed the same for about 2 years now and I guess I will find out if this worsens as I get older. I'll let you know.

Be careful out there.

I suspect he is absolutely right.

I'm sipping coffee as I make this comment. I know it's bad, but I don't do any alcohol or drugs any more. Maybe one day I'll quit this too. No coffee after noon though. Mornings are still kind of a shock for a while after I wake up. I'm lucky I am retired so I play guitar and it kind of grounds me. I generally stay away from chaos as much as I can. It's getting better. I also have a time in the evening when I'm tired sometimes a little panic sets in, but now I'm kind of prepared before it happens. Taking a warm bath helps a lot and maybe watching a movie. Be gentle with yourself.

Jake congratulations on no drugs for 9 months. That makes a big difference. I think in the beginning it seemed to get worse, because I didn't understand that certain situations made my symptoms worse. At first I thought nothing about going into any kind of loud situation where there was a lot of stimulation and boy did that make it worse. I would do stuff and come home and visuals and feeling unreal would be really bad. I try if I can not to get around too much chaos and everything has leveled out for me quite a bit. And I know there's hope, because quite a few people simply recovered after a while, but unfortunately they don't come to this site anymore. And as far as forgetting about having hppd for me playing guitar or getting into music is the best. For some reason my visuals don't bother me so much when I get into a movie. As time goes on I find more things that help. Otherwise it is pretty much with me all the time. I also think they will figure out the chemistry that will alleviate the symptoms, hopefully.

It's really weird to hear that someone else has this symptom. I mean I don't know if it is just like yours, but it comes and goes and then may not happen for a long time. I sometimes get a tingling in my chest that even makes me feel a little queasy. And it is often in the morning when I wake up. I've thought it could be a little over stimulation to the vasovagal nerve. I don't know. I have so many strange symptoms. Hope you sleep gets better. Some times a change in the weather going from one season to the next effects my symptoms some.

Light moving through trees bothers me whether it is day or night. At night running through trees you're dealing with a couple of problems. With hppd we already have a problem with the way light bounces off things and at night it seems worse to me. Hard to tell where things start and stop. With you running you're combining your own movement with the distortion of moonlight penetrating all different shapes of limbs and leaves. The woods can be scary even if you don't have hppd. I was riding in the car with my brother at a time of day where the sun was slanting through the trees in just a certain way and we were gong about 60mph. I can't tell you all the colors I was seeing for just a brief moment. I asked my brother did you just see all those colors? He said nope. I hope this helps.

Thank you for posting these symptoms, for it seems I have had some form of each you have mentioned. It's very isolating and nearly impossible to explain to normal folks. I go to AA meetings and before this happened I really enjoyed being there, but now it's gotten really hard. I go to smaller mtgs, but I still have trouble following the topic, looking at faces that seem to be moving, if a fan is going, oh my god, it's like super strobing. Still well worth it though and I do better one on one in a quiet spot without distractions. I take Neurontin, clonidine and Welbutrin which helps some. I'm open to other treatments. My most bothersome symptoms: When I close my eyes it looks like thousands of black birds are flying around. And sometimes in the midst of this a gently moving glob like a lava lamp, usually in lavender or green. All walls and surfaces are covered in squiggly lines and the air moves with visual snow, but I'm pretty used to it now. Some tinnitus, strange feelings in my body, like my arms or legs don't belong to me (if I touch or massage these parts I feel a little more put together) Anyway, I'm glad I'm not alone and I think we can help each other and it won't be as bad. This is about as long as my attention span lasts so bye for now. Alisa

So glad you are doing this work. I know it must be grueling, but really necessary and much appreciated. Good luck and many thanks. Alisa

Hi Penny, Thanks for responding to my ravings. I really do feel alone out here. In 2009 I had a thyroidectomy for thyroid cancer. It's a long story, but I ended up in icu unable to breath very well and lots of complications. When I got home from that I noticed what I described as hieroglyphics on every surface and kind of a strobbing thing. I'm 58 now and in the 60's I took really strong acid like it was candy. Throughout my life from time to time I've had a few mild occurrences rarely of some trails and patterns but only for a matter of seconds. Now it was so bad I couldn't drive. No one would listen. And yes I have serious PTSD, but I just stay in continuous therapy and I was on SSRIs. Went to a neuro-opthamologist and my visual field tests were totally off. I'll tell you what, most docs are clueless about this. I ended up in the psych unit convinced I must be schizo. Luckily I had a psychiatrist who had seen this once before in someone who had not taken drugs for over 20 yrs. He attributed it to being in ICU struggling to breath and fearing for my life, all sorts of anesthesia and the previous disruption of my neurotransmitters due to LSD were probably always in delicate balance anyway. I'm sorry you had this for a long time before it was diagnosed. I was also relieved, but it's screwed up my life in a lot of ways. I haven't had it that long. What has happened to me is really, really rare and probably a bit of bad luck on my part. My neuro-opthamologist has never seen a case. I don't want people to be scarred this can happen to them. Part of having PTSD involves serious damage sometimes to the amygdala and hippocampus of the brain, which are also involved in neurotransmitters. One part of the diagnosis is that when they stopped SSRIs it got slightly better. I wish I could take klonopin, but I'm a recovering addict and it's too risky. The clonidine is an alternative that helps a bit. It's basically a blood pressure med and I guess its calming effect on the cns is better than nothing. It's weird because it has also been used to help people withdraw from opiates. If I can find some better informed docs Maybe I can find something else. I take .1 mg 4x a day. I would like to hear how HPPD came about in your life. Sounds like you are functioning pretty well. I guess I'm just an old train wreck. Alisa

I don't know anyone except on this site who has HPPD. The psychiatrist who diagnosed it had only seen it one other time. Don't get me started on how painful it has been for me and probably most of us to be passed from one doc to the next. I've even had one doc who rolled his eyes at me when I told him I saw squiggly lines everywhere. I recently had surgery and when one of the surgical residents saw HPPD on my record and I explained it to him. He said "Does anyone really buy this?" Nice huh. The place I had surgery is one of the largest and most prestigious teaching hospitals in this country and the world and they have no clue. Lostcause, I truly relate to you and you are not a lost cause. Although I feel that way myself sometimes. I'm lucky, I think to be in a 12 step program with lots of other folks who experimented with drugs and some of them have had temporary flashbacks so they can understand. But even quite a few of them don't understand whatsoever. I can't drive because of this and I don't do well in situations with a lot of people and noise, so some just think I'm not that friendly or something. Oh well. At my age and with all the crazy things I've done I'm lucky to be alive. And Dan thank you for the story. I hate that I can't take benzos, because I'm told this provides a lot of relief for us. Take care Alisa