18 Years Later: Hi! My Name is Allen.

[Allen85]

Hello All, My name is Allen. I've browsed this site randomly over the past couple years but was afraid share. I'm in my 30's and have had HPPD 2 for 18 years. I was diagnosed 5 years ago after a seeing countless doctors through the years. Recently I found out my wife was pregnant and I became determined to find a treatment or, god willing, a cure. When I was in my mid teens I took lsd about 5 times and I was a chronic marijuana smoker. The last time I took lsd I smoked weed at the same time and I had the worst experience of my life: My heart began to race uncontrollably, my arms and face became numb; I saw long blury trails on everything and I felt hot and cold all at once. It was so intense that I thought for sure I was going to die. In desperation, I curled up in a ball on my couch, closed my eyes, and began to pray to god repeatedly to make it stop and let me live, until eventually I fell asleep. I woke up the next morning and thanked god I was alive. I swore of lsd forever. Unfortunately that didn't stop me from trying to party with my friends as usual. Every time I smoked weed after that I would have severe panic attacks and almost black out. When I'd drink alcohol I felt like I had a lump in my throat and couldn't breathe. A couple weeks after that horrible trip I woke up to a dull version of the same type of visuals I had the night of my bad trip, I was petrified and began having random panic attacks. I finally told my mother what I did and what happened since and she took me to the doctor. The doctor swore it was depression with anxiety and completely dismissed any lsd involvement. She prescribed me Effexor and xanax. The effexor didn't help at all and it made my heart race. The symptoms were not going away. I was afraid I damaged my brain beyond repair. Shortly after I withdrew from school and became a hermit. The xanax helped a lot with anxiety but the visuals remained. Through the years I saw about a dozen different psychiatrists and none of them knew what was wrong with me and continued me on benzodiazepines and ssri's. I lost my insurance and couldn't afford all the doctor appointments and medicine, so I began getting zoloft and Vicodin off the streets to self medicate. Eventually the visuals became less intense and my panic attacks were less frequent. Although the visuals and anxiety are a part of my daily life, I still manage to function. Some days are worse than others but I forced myself back into society and I got a good job in construction, and married my girlfriend who has been with me through this whole experience. I got off the vicodin with suboxone and continued the zoloft. With the news of our first child, I found a new determination to get rid of this horrible disease for good. I told my doctor that I wanted to try anything we can to make this stop and she agreed to start prescribing me different medications to see what, if anything, will work. She prescribed clonidine last visit and I started it 6 days ago. Unfortunately it hasn't helped my visuals at all and last night I began having strange thoughts and seeing weird images when I closed my eyes. I'll keep everyone updated on how it goes. I'm really hopeful that something will get rid of this for good. Wish me luck and good luck to all of you.

P.s. I am thankful to whomever started and maintains this site. I hope we can get this horrible disease more attention and find a real treatment for it.

[Jay1]

Hi Allen, welcome to the site. I have tried all the meds that are supposed to help hppd and have yet to find anything that works outside of benzos. I prefer to just keep away from meds now and use benzos 3 days a week to ease my anxiety (usually over the weekend when I can be more sociable). I am sure you have built up some good coping mechanisms during your years though and will have no problem helping to raise your child!

[Allen85]

Thank you for the reply Jay! I just want to enjoy my child's life as a "normal" person. I settled with coping a long time ago but I'll hate myself if I don't try anything I possibly can to make this stop. If you don't mind me asking... Have you tried lamotrigine or levetiracetam? 

[JuliaB]

Hi Allen, 

Thanks for sharing your experience. I am new to the site but I have been living with this disorder since I was 16. I am now 23 years old. I can sympathize with what you are saying. It's so hard to live a normal life when the experiences of the past keep coming back to haunt us. I stopped all drug use since I was a teenager but I am still paying for my mistakes to this day. I've never tried any medications but I do know what generally will trigger an episode: stress, lack of sleep, not eating well, and lack of exercise generally trigger an episode/flashback for me. Sometimes it's just random. When it happens to you, how do you cope? Wishing you all the best.

 

Julia

[Allen85]

Hi Julia, thank you for the response. My coping mechanisms are hot tea, vapor rub, and sleep. Basically anything to reduce anxiety helps a little. My symptoms are all day, everyday. Sometimes it flares up for a couple weeks and those can be pretty dark days. There are times I feel in control and others when I feel completely alone, like I'm watching my life pass by. The palinopsia and depersonalization are the symptoms I fear the most and unfortunately they are the most prevalent. Just like you, it becomes more intense with lack of sleep, stress, and being inactive. I hope someday soon we can at least find a treatment to help. Even something to stop the after images would be a blessing. 

[Jay1]

On 8/3/2019 at 12:18 PM, Allen85 said:

Thank you for the reply Jay! I just want to enjoy my child's life as a "normal" person. I settled with coping a long time ago but I'll hate myself if I don't try anything I possibly can to make this stop. If you don't mind me asking... Have you tried lamotrigine or levetiracetam? 

Yea, i've tried pretty much everything that's ever been mentioned on this forum! Nothing works for me, sadly. 

[David S. Kozin]

1 hour ago, Jay1 said:

Yea, i've tried pretty much everything that's ever been mentioned on this forum! Nothing works for me, sadly. 

Yes, Jay is doing pretty damn well considering. So, if managing the board, paying for it and regular life successfully is a measure of success handling the disorder than I think Jay is doing quite fine. However, visuals are probably just as they were a few years back. 

 

- dk

[Allen85]

I'm sorry to hear that Jay. I'm glad you're fighting through it though. 

[Nashfull]

Hey Allen, 

First off, Congrats on the little one on the way buddy! As a father of two little ones I just wanted to assure you that In no way will HPPD determine the type of parent you are. I enjoy every second with my girls and they adore me. Now it may take me a little longer to read them bedtime stories with the text vibrating and all but they just think daddy is a slow reader lol. Best of luck with the meds, I unfortunately have never had any luck with them. I have a great career in the medical field and a wonderful family. HPPD sucks but I learned a while ago it doesn’t have to dictate your life.  

 

[Allen85]

Thank you for the words of encouragement. I just wish I didn't feel like a stranger in my own body. That terrifies the most.

[John doe]

Idk if anyone will see this but I’ve had hppd  for a year and it was so bad at first I had just moved somewhere else without my parents I was underage atm and the day before I left I got a really bad trip on lsd and like four weeks after I started getting flash backs of lsd and I would get really scared I felt like if I was still on that bad trip i would just feel so weird and after months of having a lot of panic attacks and feeling literally like shit like I just wanted to dend it like I didn’t want to live like that at all and I to this day haven’t told anyone about me having good because I’m too scared to tell my parents and stuff but after so long of feeling like shit and not wanting to tell anyone and researching stuff I said to myself like dam I need to fucking fix this myself cause wth is anyone else gonna do to help me anyway so I just would kinda meditate and I realized that most of the feeling like crap part was just anxiety so Idk how tbh I just got rid of my anxiety a lot with my own thoughts like I just started seeing the good in a different way and that’s what helped a lot I stopped researching and trying to find a “cure” because tbh we all know there is no cure like I just now see it as a new way of living and I can’t be constantly thinking that I need to fix the problem when the problem can’t just be fixed tbh like I still have visuals and honestly now I’m just like oop oh well I can’t be like i don’t wanna see this anymore blah blah like nahh I just think damn atleast I can still see man there’s ppl who are blind and stuff like ok I see visuals but I’m still living I can still see it’s just a new way of seeing stuff sometimes I just think of my eyes as if they were a camera and think like damn my eyes just downgraded to being a shitty camera ngl also taking long walks and hikes and stuff helps even if you see a lot of visuals outside cause for me the most visuals is looking at the sky I can’t look at the sky without seeing like snow like and static like stuff but honestly what helps the most is to realize that that’s just how it will be for a while or for forever we never know but we can’t spend all our days crying and being anxious about it life goes on and even if it’s a big change a bug difference of how you see stuff you can handle it tbhhh and if you think you can’t that’s literally just the anxiety trying to stop you from being you

[xero817]

On 8/6/2019 at 9:44 AM, Nashfull said:

Hey Allen, 

First off, Congrats on the little one on the way buddy! As a father of two little ones I just wanted to assure you that In no way will HPPD determine the type of parent you are. I enjoy every second with my girls and they adore me. Now it may take me a little longer to read them bedtime stories with the text vibrating and all but they just think daddy is a slow reader lol. Best of luck with the meds, I unfortunately have never had any luck with them. I have a great career in the medical field and a wonderful family. HPPD sucks but I learned a while ago it doesn’t have to dictate your life.  

 

hey @Nashfull

 

how bad is your vibrating vision? is it only w/ text?

how persistent is it? 

thx 

Edited April 1, 2021 by xero817