Hi friends —
My experience with HPPD started about 4 1/2 years ago, with a single dose of MDMA.
For me, my symptoms are: anxiety/panic, DP/DR, visual snow, flashing solid colors, some tinnitus, and seeing movement in geometric patterns.
Also: I used to always be a “crier” and someone who feels their emotions very deeply. During the first few weeks of HPPD, I cried so much, some times out of misery, some times out of gratitude to still be alive, some times because I heard some beautiful music and felt connected to it. But then after a few weeks my emotionality faded, which I assume must have been a psychological coping mechanism. I was so overwhelmed with anxiety that I had to shut down emotionally to stay sane. So no more tears or feelings of meaningful connection. I still want to feel those cry-feels so bad!.
Over the next two years I got better at managing my symptoms, but saw little to no improvement in them. I was still smoking weed often (my bad) & still couldn’t really FEEL, and my anxiety was off the charts 24/7. It was absolute hell every waking day.
A little over two years ago I started on 10mg Celexa, and the improvement I saw in my anxiety levels was life changing. Not gone completely, but I started feeling significantly better and my anxiety attacks became fewer and farther between. Worked my way up to 20mg, which is my current dose.
A few months ago I finally found a neuro who is actually familiar with HPPD, who added Lamictal, ramping up VERY slowly (I only got up to 37.5mg/day). In the first month (2 weeks on 12.5, 2 weeks on 25) I started to notice my visual symptoms clearing up slightly and my brain feeling a bit clearer. It was actually the best I had felt since before HPPD and I was excited to continue ramping up on the lamictal, hoping it might help get me to a place where I can really feel emotions aside from anxiety again.
After that first month though, things started to get unpleasant again. Bouts of anxiety attacks, some good days, some very bad. It felt like I had been consistently alright for a while, but now my worst symptoms are pushing their way back in. I also developed minor muscle twitches every few minutes, which was completely new. I was prescribed Klonopin after a particularly bad anxiety attack and now I take 0.25mg when I feel myself getting panicky. I don’t like it, but it does keep me from panic. I quit smoking weed then (a few months ago), but that hasn’t helped.
My hopeful suspicion is that perhaps I’m experiencing SSRI “poop out” with my Celexa, and could therefore ideally switch SSRIs and continue with lamictal. My neuro says the only way to know that for sure is to come back off the lamictal and see how it feels to just be on the Celexa again. Back down to 25 from 37.5 lamictal and feeling a bit worse actually, but my neuro says I need to get down to zero and wait two months to see what the deal really is. I’d much rather keep my lamictal dosage as is, and try switching to a different SSRI, as that just feels more “right” to me - but she’s the professional so ...
If it turns out that I’m actually not tolerating lamictal well, I am interested in looking into sinemet... it seems to have been a wonder drug for some people here, but I would be very worried about developing dyskinesia, as I work in a field where that could ruin my career.
No targeted questions here really, just looking to share relevant experiences/advice with other HPPD’ers. ❤️
PS: for anyone doing the ol’ downward mental spiral in these forums and feeling hopeless (like I used to), things WILL get better. I’m still having struggles but I’m not in hell like I used to be, and life is very worth living for me right now! I have my bachelors and masters degrees, a solid career at 25, wonderful friendships, and going by objective criteria, am a fully functional human being. You will be okay! Keep advocating for yourself!