lrisner59@yahoo.com Posted March 22, 2011 Report Share Posted March 22, 2011 I have had HPPD for 33 years. have much experience with different treatments and would be happy to share my knowledge with anyone. Just want to help. There have been some things really beneficial and some not so. One thing I can tell you is that it is No reason not to lead a full productive life. If you put yourself in the position of a blind man and say this is the life I know and must live then you will . Life is truly what we make it. Acceptance was the biggest challenge for me but once I made that step the rest was easy. I invite any and all to ask anything they like as I said after 33 years I think I'm qualified?? Good luck and please ask away! Larry Link to comment Share on other sites More sharing options...
GuiseppeTheGreat Posted March 23, 2011 Report Share Posted March 23, 2011 do you use at all anymore? like anything: weed, alcohol, cigarettes, MDMA, etc, or do you recommend i stop all use? Link to comment Share on other sites More sharing options...
ludwig80 Posted March 23, 2011 Report Share Posted March 23, 2011 do you use at all anymore? like anything: weed, alcohol, cigarettes, MDMA, etc, or do you recommend i stop all use? Not to speak for Idr59 but lay off the weed and anything harder. Alcohol and cigarettes seem to not effect nearly as much as anything else(unless you're me and have liver issues). HPPD can always get worse and it can always come back. I believe Jay said back in the day we HPPD'ers tend to forget alot of the hell we went through at the beginning and when things get better we find ourselves asking if we should mess around with substances again. That rings quite true I believe. I've seen to many people, including myself who have gotten better and the worse again. So I recommend don't messing with the drugs anymore.. Just my .02 cents though. Take what you will. 1 Link to comment Share on other sites More sharing options...
LarryC Posted March 23, 2011 Report Share Posted March 23, 2011 I have had HPPD for 33 years. have much experience with different treatments and would be happy to share my knowledge with anyone. Just want to help. There have been some things really beneficial and some not so. One thing I can tell you is that it is No reason not to lead a full productive life. If you put yourself in the position of a blind man and say this is the life I know and must live then you will . Life is truly what we make it. Acceptance was the biggest challenge for me but once I made that step the rest was easy. I invite any and all to ask anything they like as I said after 33 years I think I'm qualified?? Good luck and please ask away! Larry I have had it about as long. Thing is I had 18 years of being hppd symptom free. Then came back with a vengence as symptoms increase and added over time. Not drug related recurrance. Now life is difficult again on that level. Link to comment Share on other sites More sharing options...
1998 Posted March 25, 2011 Report Share Posted March 25, 2011 I have had it about as long. Thing is I had 18 years of being hppd symptom free. Then came back with a vengence as symptoms increase and added over time. Not drug related recurrance. Now life is difficult again on that level. Hopefully you'll go symptom free again sometime soon Larry. The fact that you didn't use any drugs and it came back is confusing as hell. Do you have any guess what could of caused that? Maybe a stressful job, or a change in life style. I'm sure you would of mentioned the connection. I just hope that doesn't happen to me as well, couldn't handle much more anxiety! Take care Link to comment Share on other sites More sharing options...
LarryC Posted March 25, 2011 Report Share Posted March 25, 2011 Hopefully you'll go symptom free again sometime soon Larry. The fact that you didn't use any drugs and it came back is confusing as hell. Do you have any guess what could of caused that? Maybe a stressful job, or a change in life style. I'm sure you would of mentioned the connection. I just hope that doesn't happen to me as well, couldn't handle much more anxiety! Take care Yes. It happend after I over excerted myself on a hike that I should not have done since I have fibromyalgia sine a young age. I mentioned that on the way down, after already being exhausted and body srained, that we took a rock narrow path that was more likely a water drain. Had to step from small rock to rock on a downward slope. Kept erking my neck and snapping back. Afterwards, my hiking companioon drank and got a bit nasty which pissed me off. This went on into the parking lot. I was physically and mentally tense for days. In my correspondence with Dr. Lerner, he said that it was well known in his practice tha pressure on the neck or eyes can retrigger hppd symptoms or bring about hppd symptoms fo those who have the tendency waiting for something to bring it up (from their past drug use I am assuming) I was not given a solution though. T The symptoms started mild and then more severe and more symptoms. Some that I never had before. Like I never had static, vibtation, phophene in the dark, long periods of tinitus. I developed the vibration and phosphene static about 1 1/2 years into the initial afterimages. I then had constand tinutus 3 years after thinitial onset of symptoms. This all started im May of 2003 and I have had no improvement since. Link to comment Share on other sites More sharing options...
jkrs Posted April 4, 2011 Report Share Posted April 4, 2011 I have had HPPD for 33 years. have much experience with different treatments and would be happy to share my knowledge with anyone. Just want to help. There have been some things really beneficial and some not so. One thing I can tell you is that it is No reason not to lead a full productive life. If you put yourself in the position of a blind man and say this is the life I know and must live then you will . Life is truly what we make it. Acceptance was the biggest challenge for me but once I made that step the rest was easy. I invite any and all to ask anything they like as I said after 33 years I think I'm qualified?? Good luck and please ask away! Larry can you please share which treatment options worked and didnt? thanks Link to comment Share on other sites More sharing options...
minderbinder141 Posted April 5, 2011 Report Share Posted April 5, 2011 Acceptance was by far the hardest part for me and I think most. It's so great hearing stories from people who have gone through the same things. I felt so alone for so long with this... Link to comment Share on other sites More sharing options...
John Smith Posted April 7, 2011 Report Share Posted April 7, 2011 What still pisses me off the most is that my "friends" don't believe me...they all say static and trails and afterimages and shit are "normal." Theyre all worth shit to me now. 1 Link to comment Share on other sites More sharing options...
Br0k3nS41nt Posted April 7, 2011 Report Share Posted April 7, 2011 Yeah, I can talk to only one friend about it, the only one that believes me that has see me have panic attacks when I had them everyday. I don't know what I would have done without him. He is more messed up than me, and it did him well to guide someone through some of the same places he has gone through. My other friends don't believe/care though, I am just a big hypocondriac, I have given up trying to confide in them, but I knew that from day 1 Link to comment Share on other sites More sharing options...
John Smith Posted April 7, 2011 Report Share Posted April 7, 2011 I know man. I wish the fuckers could live inside my head for one day...theyre all really into drugs, it kind of scares me to think that some of them might choke on their words some day. Link to comment Share on other sites More sharing options...
1998 Posted April 8, 2011 Report Share Posted April 8, 2011 ppl started thinking I was crazy when I tried to explain hppd at first, so I think it's best to act like I just have an anxiety condition when it get's unbearable. If you want somebody to believe you just look at wikepedia, you would think that would help doc's understand to. Link to comment Share on other sites More sharing options...
lrisner59@yahoo.com Posted November 16, 2011 Author Report Share Posted November 16, 2011 I will concur with most of what I've read on this thread. Stay away from drugs and alcohol and lead a healthy lifestyle. Is true that when we're feeling well we think we can go back and do the same stupid shit again. Truth is we are prone and predisposed to this condition for reasons they don't quite understand yet. Better be safe than sorry. I also say don't worry about telling the world about it because it's so rare that most Psychiatrist haven't believed me until I told them the DSM # they could look up. Once I told them they can only treat the symptoms . Those suffering from this know more than the average psychiatrist so know you're fighting a courageous battle and that you should be proud you're fighting and trying to understand. Hang in there all my fellow HPPD'rs! Link to comment Share on other sites More sharing options...
VisualDude Posted November 20, 2011 Report Share Posted November 20, 2011 A few years ago, saw a psychologist and asked about HPPD. She knew about it and said it wasn't what I had because is wasn't from recreational durgs. Point 1 - There are some docs out there that know it. Saw an HPPD 'expert' who knew you can get it outside recreation drugs. He said that people with HPPD can live normal productive lives. And that HPPD was only a subset of my problems. Point 2 - You can live normal, happy productive lives if the problem is just HPPD Lastly, an old saying: "When 20 you worry about what people think about you. When 40 you stop worrying. When 60 you realize they weren't thinking about you anyway" Point 3 - Be selective about seeing help and wanting people to understand. Most cannot understand, and frankly their interest too understand is limited. Find happiness in understanding yourself and finding ways to function better. Humor helps. If anxiety is unbearable, find something to cut it. Solutions are there, even if it is just coping. We have a somewhat 'private' battle. Link to comment Share on other sites More sharing options...
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