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alisa

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Everything posted by alisa

  1. I've taken clonidine for 5 yrs and I do think it helps. It's actually a heart and bp med. They found it helped some vietnam vets with ptsd and visual pxs. I have sort of pulsing geometric shapes I see on walls and surfaces and also hbp so it calms 2 birds with one stone. lol oh yeah shapes are much less noticeable . good luck I think part of it is I've also adjusted over time.
  2. Wow, I feel you brother, but I can't agree you're in hell alone. And good for you by being open and honest you've made the first step. It is f'd up that there is no one in my general acquaintance including so called specialists that comprehend this thing. I can just remember thinking not that long ago when My head was spinning in the midst of all these symptoms you describe. Then I went through some kind of raging thing I didn't understand. Neurontin and clonodine have helped me and no other drugs. Of course I'm 60 yrs old and I had to clean up my act or die long ago, but not without help along the way. Hey I'm a songwriter and I like your song a lot. Keep writing and tell just how you feel. That's another part of the healing process for me. You've gotta be brave as well, because most folks don't know how hard it is ti expose yourself to help others in this particular creative method. Oh yeah, my life is good today and there is peace today with this strange burden. Please keep writing. You helped me so much today!
  3. I have a feeling that many visual snow people just have never admitted to drug use or never been asked. Now it could get complicated between the lilly white visual snow sufferers and the trashy drug addict hppd people. I do believe in the migraine visual snow because I think there is some kind of damage that may come from migraines that causes visual snow. I can just see it now "How dare you! I have visual snow not that disgusting hppd". Hey I'm laughing while I'm writing this. Since acquiring hppd I also have a problem with not always knowing what is appropriate to say and it's even harder with all the different cultures on this site. Forgive me if I don't make sense sometimes. Honestly though I have had people say they don't follow what I'm saying, but that has kind of happened to me my whole life. alisa one of those trashy drug addict hppd people
  4. In my own experience I would make sure that any neurologist you go to has a good understanding of HPPD. There is nothing more horrible and damaging then being told this disease is all in your mind. And to be told this over and over by different so called experts in there fields could push anyone over the edge of sanity. When you know there is something wrong with your brain and everyone just pats you on the head and sends you to the psychiatrist and of course a shrink has many lovely diagnosises they can pull out of a hat and cause further damage. All this is done with the best intentions in the world. I am one of the lucky ones who after being hospitalized for so called psychosis I became a pt of the only MD at Vanderbilt Med Center who was aware of HPPD. I still have HPPD, but I can deal with it. I'm just so glad for my brave brothers and sisters on this website. Peace and love.
  5. There are also a bunch of different drugs they use for anesthesia and it takes a while for them to wear off. Hope you feel better.
  6. I'm always more depressed and anxious in the winter time. When Spring comes it's like a dark veil has been lifted.
  7. I'm 60 yo and pretty much out of the loop, but I relate to what everyone has said here. I think I would really be happy to meet another Hppder. It's kind of a lonely place to be at times. I have met very few people in my life who are truly understanding about the human condition. They are definitely out there though. The good thing is you have a chance to meet a more sober and together girl, because I think most of us don't party like we used to. Hopefully with a clear mind they have evolved to a place that is non-judgemental.
  8. Hello to everyone. I'm sure I'm the oldest HPPDer to comment on this subject, 60yo. The genetic idea is a complicated one and I doubt seriously if anyone can say it's absolutely positive that our kids could have hppd w/o a substance. Problems with childrens eyes can have other sources like adhd, nutrition, stress, needing glasses. I can say I was different than my friends who took acid back in the 60s. I had a bad trip almost evertime. I always got further out there than anyone else. For me I believe it was a combination of environment and genetics. My parents did the best they could but for them parenting meant beating ur kids and poor supervision, brutal really. So if I was born with a fragile brain chemistry and raised by mature loving adults maybe I wouldn't have tried drugs and wouldn't have developed HPPD. To make things worse think about the chemical aspect of thinking one of your parents may beat you to death. PTSD has definite permanent effects. Emily, sounds like your boy is great and he has a very loving Mom as well. Sounds like he has a super intellect, too. Over use of our brains can cause some strange things, too. You probably already know all this,but if I can be helpful in any way I will try.
  9. this is interesting. dark rooms give me an opaque backround that looks something like thousands of black birds flying around. I hate mirrors too cause i don't recognize myself half the time and in stores that have lots of mirrors and bright lights I get disoriented easily. As long as I know I can return to my quietly lit room and play my guitar I do fine.
  10. This is just my own experience. I don't know if it helps. I really think I had psych pxs as a kid. Then when I started using chemicals about 12 yo I liked the feeling, but I was also looking for something to change my incredible anxiety and lack of focus. For the next 20-30 yrs I tried everything in excess hoping it would make me like everyone else. Sometimes it worked, but my brain is also generally fried because of it. LSD in the 60s and 70s damaged my neurotransmitters, so HPPD is just the icing on the cake of my madness. No really I have PTSD and depression basically and I see an MD and therapist for these things. Hppd changed my whole life in other ways aside from the mental part, but having both is tough but manageable. This site is the best. Didn't mean to write a book.
  11. That sounds really interesting. Certainly sounds like that cop has HPPD. I may be wrong, but it seems there are more people on here from other countries. Also sounds like MDs from these countries also have a better knowledge of HPPD than in the US. Or at least I have seen a great deal of scepticism here. I know I can't be the only person in Nashville who has this. One MD said people may have it and suffer in silence because they don't want to admit drug use.
  12. I really hardly think about it at all. I think it took me a few years, but it really helped me to find this site. I felt like I was the only one who had this. I kept trying to explain it to people, but that just made me feel crazier. Man, I really have learned to take care of myself and I hardly notice it. If I get stressed it gets a little worse, but just knowing this is basically a problem with neurotransmitters in my brain being off and not something fabricated by my mind helps a lot. In the beginning I thought I was a goner, but I really enjoy my life now. No regrets. Take care
  13. Don't we mothers have enough to blame ourselves for. Kidding aside, I do see a lot of good points on this subject here. I talked to a geneticist at Duke regarding my sons heart defect. One of my questions was why does there seem to be an increase in defects in babies these days. He said it could be any number of things and to just look at the ozone layer and the millions of chemicals that have been added to our world. Anyway, I thought that was interesting
  14. http://www.youtube.com/user/alisafillmore?feature=results_right_main For 2muchmandy It sounds like you're doing a lot better and that's great. Mine's a lot better too, but being older I don't how well we clear up.
  15. I'm sorry, but I'm really a dufus on computers. My son set up 7 songs on you tube and I think there are duplicates of it so it comes up on the right side. There's a picture of me sitting on a stool playing guitar. I'll ask my son later how to fix this. I'm sorry for the trouble, but I'm excited someone wants to hear my songs. Thank you
  16. I love seeing this stuff. I recorded a few things since HPPD. There is a rough recording of my songs on youtube @ Songs by Alisa Fillmore.
  17. Hi Mike, I've learned some things in my life will increase my sxs or even add a change. Once when I was really stressed I had a kind of strobing thing that lasted for a few weeks and then was gone. If I don't get a good nights sleep my visuals are a lot worse. Also when I'm very stressed or even when I don't eat right my visuals and DP/DR increase. If anything HPPD has caused me to lead a much healthier life. Take care
  18. I'm so glad I'm finally figuring how this sight works. There is so much good information and encouragement. I am better because I'm driving again. I just don't drive at night or on busy highways. I go out a lot more, but I still feel safest when I get home.
  19. I like reading about these wild dreams everyone is having. I still before I open my eyes in the morning wonder if my hppd is gone. And I'm always like oh well there it is again. The flashback word makes me angry, because I had an ongoing argument with an MD who didn't believe in hppd and said it was in my mind, because flashbacks don't last. I think what might happen is that while we sleep the neurotransmitters build up and for us it's probably unpredictable what we may see when we wake up. If I wake up in darkness I still may be totally disoriented. I pretty much have to hold onto the wall to get anywhere. It's like a strobing kind of thing and more hallucinatory with shapes. Ferett, I'm really glad that you are experiencing a lessening of symptoms. It seems that people who catch this thing early have the best chance of recovery. Take care everybody.
  20. Odysseus, Sorry I'm just getting back to you. Just saw your question about friends. It was back in the 70's. And I love to talk about these 2 guys. They were normal, but considered somewhat eccentric, shy, artistic. They loved acid and MDA and it was plentiful back then and super strong and they loved it. When everyone else had quit taking it, they kept on. They started being irritating at parties and never seemed to come down from their trips. Sounds a little like me, but I pretty much stopped after a few years. Paranoid delusions, actually seeing people, unpredictable were some of there symptoms. They also had mental illness in their families. Sadly they spent the rest of their lives living at home or in institutions. I believe there is some kind of genetic predisposition to this. Just like in my family several of us have a type of high cholesterol that can't be helped with diet and exercise. HPPDers may have a more fragile neurotransmitter system. I just think my friends could have possibly been helped early on. Even messed up my friends were really special people. This has all just been speculation on my part. I mean who am I, just a mere speck upon this planet. Or maybe we have been touched by God and are here to lead our miserable fellowman to the truth. Please know I have a weird sense of humor. That came before the HPPD.
  21. Hi Makeitstop, I'm glad you found this sight. It's helped me a lot. The Ptsd for me was diagnosed about the same time as HPPD when I was 56. My childhood was the main source and then I used drugs to cover it up. If you have been deployed I can't imagine what you've seen. I always thought what was going on with me couldn't be PTSD until I learned more about it. My whole life had trauma sort of ongoing and then my 14 yo daughter was killed in a horrible car accident and then my Mom and Dad died shortly after. I don't want to get into a sob story. I had serious med problems and after being in ICU a few years ago I came home and my vision was like I was seeing hieroglyphics on the walls and I felt like I was in imminent danger most of the time. No doc could figure it out. I really lost it about a year later and a very smart Psychiatrist diagnosed Hppd, which in very rare cases can be dormant in past LSD users. I used a lot back in the late 60's also many other psychidelics. Sorry I'm going on and on, but I still have a scattered brain. I had always had a few trails and patterns, but now it was horrible and constant. Good news is once I knew others had this ( and we're all such cool people haha) I started calming down and now I'm enjoying life keeping it real simple. I probably stay home too much, because I'm most comfortable here. I get out as much as I can though, because it's super lonely and I invite anyone who is on here to talk. And yeah those pictures freak me out, too! Good luck.
  22. Thank you guys for sharing this. You've described my sxs exactly. I don't think my friends really understand most of what I've told them about HPPD. I go to AA mtgs and it gets me in there alot. I'll just be listening to someone in the group and I'll begin to not be able to register the words I'm hearing and than I feel like I'm in a bubble of my own and I also somehow feel like I'm outside the bubble seeing myself. It's not that vivid, it's just hard to describe. I just take a few breaths and kind of rub my arms and legs and it will usually pass. When it first happened it was horrible, but not so bad anymore.
  23. I'll bet you feel like you've given birth in a way. Or at least as close as you can get to that. Congratulations and thanks for myself and all hppd sufferers for your very hard work. I'm glad I've been able to watch some of your journey. How cool. I just read an article that really ticked me off. It is a conclusion of the neurology dept of Vanderbilt that HPPD is not to be considered a neurological disease.
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