Jump to content

Suggestions for supporting a loved one with HPPD?


Recommended Posts

My son at age 18, used LSD a handful of times.  He came to me shortly thereafter and told me his trip would not end. He told he thought he had HPPD. Since that time, 4 years ago, I have sought help from no less than 50 specialists on the east coast of the USA, with literally no help. His GP put him on Clonipin, and it lessened his anxiety for a bit, but he is "shark-bit" from any drug, he decided to get off of it, and did. As a result, he experiences debilitating HPPD symptoms including VS, trailing, flashbacks and crippling panic attacks. As a single mom, it is heartbreaking, and I have no one to talk to about this. Any ideas on what I can do to help my only son? Before this, he as an honor student, star athlete, and the favorite kid at school. He now is a shell of what he was before, always sad, crying and very dark.

Thank you.

Link to comment
Share on other sites


I'm so sorry for what has happened to your son, and what you are going through as well.

You said he took Klonopin for a while, and it sounds like he doesn't want to take it because he's now afraid of drugs (I haven't heard the term "shark-bit" before, just guessing). Klonopin can be very helpful, especially if his symptoms are as bad as you say. I've been on Klonopin for over a decade, and while it isn't ideal, it's better than suffering constantly. I've found the minimum effective dosage to be 2mg a day, less than that isn't helpful. He'd need to be taking it every day though, and it's a very addictive drug, so it's worth weighing the pro's and con's, if he'd be willing to take it.
If you search the medication section of this board, you'll see people have tried other medication treatments, with varying degrees of success, but I can't vouch for them.
I have found lifestyle changes like getting enough aerobic exercise, eating healthy, and perhaps giving mindfulness meditation a try, might be helpful for you son. It's also important for someone with HPPD to avoid things like Caffeine, and obviously he needs to stay away from other drugs, especially pot, but it sounds like that's already how he feels. It's also important to avoid SSRI anti-depressants, and anti-psychotic drugs, they can make symptoms worse, sometimes permanently.

I'm not at all surprised that out of all those specialists none have been helpful, I'm sure the majority of us here can tell you we've been through the same. There isn't a lot of research out there on HPPD, and Doctors are never trained in it.

The best advice I can give you to help your son, is to try and understand the condition as well as possible. That's something that is a wedge between me and my parents: they don't fully understand it, which further drives frustration and depression. You came here looking for help for you son, so I have no doubt this is already the case, but it's worth mentioning that sometimes those of us with HPPD may need to vent about it, without judgement. Other times we may not want to talk about it. Perhaps finding some new hobbies for him to focus on that aren't overly visually stimulating, and are relaxing, especially if they give him a feeling of accomplishing something. One thing I find with HPPD is that I often feel "what's the point in trying, my life is basically over", but by having a goal that you can reach, it shows that you're still kicking, and you're still capable.

The other thing that could help him, is to visit a support board such as this one. Sometimes it can just help to know you're not alone, and talking to people with the same condition can be very helpful, as unless someone has it themselves, there's only so much others can understand.

It's also worth mentioning that some people get lucky and have it go away. I had met a Doctor for psychological testing (for different reasons, not relating to HPPD) and he confided in me, after he saw in my chart that I have HPPD, that he also had HPPD, from LSD, and after about 10 years it just went away. I don't know how common it is to go away, as there are people who still have it decades later, but it's worth holding out hope that it is possible.

I'll try and think of other things over the course of the day.

I'll be thinking of your son today, and you as well.

Take care, and if you have any questions or need any advice, you can send me a PM as well, I try and get back to people as quickly as possible.

Link to comment
Share on other sites

  • 3 years later...

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.


Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.