Note: I kept my story pretty short and I capitalized the main things in my story that really improved my symptoms in case you don't want to read my story/symptom part (I understand these are hard to read) These strategies worked for me, and I want you to give them a try. Think of these things as your good "work" to heal. Go to work every day. You have a purpose.
I have dealt with HPPD for 3 years now. In this first paragraph I want to prove to you how bad it was, so that you'll trust my advice when I tell you how I, my body and mind, got better. I did mushrooms (very bad long-lasting trip) one time in my life to celebrate the job I just landed at a Two Michelin Star Restaurant in Manhattan, my dream job, and because of that one choice, I got full blown, want to kill yourself HPPD. (I didn't know what I even had until two years later.) Everything around me was constantly moving. At the onset, I was in bed for weeks, eating saltines, throwing up. I had to sleep upright because I could feel these waves shooting to my head very hard if I laid flat. I had to get a piece of foam to put over my bedroom window to sleep because my eyes were so sensitive to light. When I closed my eyes, I saw these white shapes constantly moving...there was no escape. I felt like my nervous system was on fire. I felt like I was walking on a boat, I couldn't feel still. Laying in my bed, I wasn't still... even sitting in a chair I was clinging to the arms. It got worse when I went outside. The sun was so bright I could see a metallic circle shape. The grass was highlighter green, the sidewalk looked like it was curving too far up. I couldn't see details on anything. Walls coming in on me, floors moving under me. I was house-bound, period. I have pages of symptoms ----I could go on, but you all know it fucking sucks. It's not fair and the thought of dying was comforting to me, as it probably is/was for some of you. I am trying to tell you how bad it was so that you will HAVE HOPE to know how much BETTER I have gotten.
After waiting months to see a neurologist, he shrugged me off and ended up telling me I had "anxiety." That day I left johns Hopkins Hospital with my mom, dad, and aunt who came with me, I felt hopeless. Like this couldn't even be explained medically? Physically? Like WHAT THE FUCK AM I GOING TO DO? I didn't want to go to other doctors, even GOING to a doctor when you have really bad HPPD is horrifying. The fluorescent lights alone in there exhausted me. The worst part of that day was not being able to give my parents hope, watching them watch me struggle with no fucking medication to take home to get all better, no fucking resolution. When researching online, I could find nothing on what I had. So, i decided that I was going to get better, on my own, period.
I started going to BIKRAM HOT YOGA about 3 times a week. Have you done yoga with hppd? The symptoms get worse in there. You have to stay still and my body is rocking back and forth,the floor is moving... the walls around me are moving and the instructor is just telling me BREATHE. REALAX. And I did. I did not feel sorry for myself. No, I did, a lot. I just didn't let the pity make me stop going. I went every other day, and slowly, I noticed a difference. Each class you do the same postures, and every week I would notice one thing about a class when some symptom had improved. About a year in, I would go to yoga and the whole night after I feel much better. I pushed myself through every posture and practice and visualized them as "wringing out" my symptoms, like the sweat that was pouring out of me was my HPPD leaving. I still think like that, and i still go every other day because if I don't my symptoms come back. It's a great part of my life now, and I actually enjoy it.
Another VERY important step is THERAPY:
I was having vertigo at the time as well, and I was able to get insurance to cover therapy because vertigo was covered. Thank god because therapy is FUCKING EXPENSIVE AND IS A LUXURY TO MOST. I would describe my symptoms to the therapist, and she didn't know what it was either...but we started doing something that was VERY HELPFUL and could help you guys out there....we started having me re-tell my story of the trip. Whenever I re-tell the story, my symptoms got WAY WORSE. I felt like I was there, the floor started moving, the clock ticked so loud, my peripheral vision was shrunken, the waves in my body rushed through to my head, my whole spine was sore I couldn't feel the many parts of my body or the difference between my body and the chair. After we did that, she would walk me around that floor of the building and I would slowly come back to hell, but less shitty hell. I started to realize delving into that fear head on was the thing that improved my symptoms the most. We did this every week. And slowly, it was like my brain knew I was confronting that fear I felt in the trip and it slowly got more manageable every time. Guys, talking --it could be about ANYTHING to ANYONE is helpful. Just get your feelings out, and then slowly maybe you'll be able to talk about the trip. What made HPPD so hard for me was ANXIETY CAUSED WORSE PHYSICAL SYMPTOMS. So, when anything at all made me anxious I would anticipate getting even more anxious because I knew I would feel more movement, I would see more trippy shit, I felt completely out of control. So, this led me to give up control (not easy, I am very ambitious and driven) which made me recover a lot faster.
I couldn't drive at first. It took me months to go to, like, Target by myself. I started out by driving to a royal farms down the street. It was terrifying because I didn't know what would happen, I was away from home, and the car vibrations I could feel very strongly, especially when the car was in idle. When the car was in idle I felt like I was having a panic attack, I felt like I could slip into vertigo or out of this world in a second. It's so hard to explain. But I kept driving, every day I would try to go somewhere a little further and further.
MEDITATION worked wonders for me. Just lay down, set your phone timer for 10 minutes, and focus on your breath. If thoughts pop into your mind, which they will, just let them in, and let them go. This 10 minutes a day I started doing I think was healing my brain, along with the yoga, and therapy. It gives your mind a vacation from the hell your going through.
Another things is DEEP BREATHING. Learning to breathe from your stomach (I have always been an anxious person, and never even knew how to do this..) saved my life. Let your whole belly fill up and let the air press against it. It is such a comforting feeling. When you feel like the world around you is moving and pulsing but you learn to train yourself to breathe deeply, you can get through it. You just have to not give up, that's it. It will get better.
BODY CONTACT/Massage: Whoever it is, your mom, your boyfriend or girlfriend, husband/wife, anyone, just laying and feeling someone next to me actually lessened my symptoms.
Do as many things with good, real friends and family as you can. It will help you heal, and your symptoms aren't as strong/noticed when you are around other people. In this time, I found out who my real friends were. In this time, I have also become a lot more content as a person. I am more comfortable in my own skin because I know how unbelievably worse life can be. It gave me perspective, and perspective created gratitude for the things I did have: a boyfriend who wasn't allowed to sleep at my house (parents) laid next to me at night and waited until i went to sleep because I was so scared. I had my mom to drive me to therapy (I couldn't drive for a long time).
Thich Naht Hahn: Reading was hard for a while, the words would move around and it made me nauseous. So i listened to his books on audible. They helped me get through a lot. Especially one called Living Without Stress or Fear. His voice is so soothing and he makes you feel like he understands exactly what your going through.
Its been three years now, and I went from living in my parents basement, my mind and body broken, most of the time feeling hopeless, torn apart, to living on my own with my boyfriend applying to film school for comedy script-writing. I still have symptoms like trailing, mild waves, and other things, but I know they will heal, because of how much they have improved since the beginning. I am FUNCTIONAL, and some days I actually don't even think about it. I will only get better, and I know you guys can too. I am here if you need encouragement, or if you need to be told to suck it up and keep moving. I was weak and lost, but I am strong now and I can help you too.
Think about a year from now or a month from now what goal you will achieve, whatever that means for you. Keep focused on that goal. I used to make a goal for every month something I would build myself up to doing (like driving on the highway was a huge one, or even going to a restaurant which was something I could not do in the first year)
Every time something gets better or a symptom goes away or you do something you couldn't do before, make a note in your phone calendar. As you look back over the months, you realize how far you've come, and you realize that everything is going to be okay.
Stay Strong, It's gonna be okay. Take it one day at a time.
Hi. I'm 57 years old and I've carried a deep secret most of my life. I see visual patterns everywhere. They are most prominent in anything with a fine grain. Tar, sand, carpets, curtains, textured ceilings ... you get the idea. I see patterns, shapes, designs, animals, faces, Aztec glyphs, etc. as if intentionally created by an artist. They're not static either. The slowly move, shift, and transform. If I'm looking at a wall I "know" it's a wall. I don't believe the hallucinations are actually visible to anyone else so I guess I'm sane.
How did this happen? Just before my 14th birthday I entered High School. An older friend of mine asked me if I would like to try "acid". I had smoked cannabis with him before and he assured me it was similar. Well, acid in the early 70s was quite strong and it was a long day. From that day forward I had this issue with seeing visuals I described earlier. My earliest memory of this was after smoking some cannabis I saw the outline of a flower appear on the fabric covering a speaker. I kept taking hallucinogens until I was about 20 years old and then stopped taking drugs all together.
However, the visuals never went away. I can look at a sidewalk and it looks like all the little sand grains were laid out in complex designs. It's as if "random" doesn't exist in my visual experience. I've learned to deal with it in my own way. I look at it as my ability to not just see the mundane. This disorder hasn't stifled my ability to solve complex problems, get a degree, raise a family, and work in a professional career. In a funny way it's like an old friend. I think I might miss it if it "cleared up".
I was stunned to find out that there was a term for what I have. For years I figured I was borderline schizophrenic because I was seeing things. Hiding this disorder has caused great anxiety in my life because I knew it wasn't "normal" and I never knew if it would get worse. I'm hoping to find other people with symptoms like mine. I'd also like to give people hope because I've lived with this for over four decades and life is great.