Hi everyone,
I've been a long time lurker on this site and had become a very infrequent visitor as my HPPD generally seemed to be improving and I was managing to cope with life pretty well. Unfortunately, a self-inflicted major flare up has led me back here. I thought it might be useful to tell my story, to share what helped in my first recovery, and to warn others who may find themselves in the same situation that led to my relapse.
First became afflicted with this weird and appalling condition in summer 2013. I had been at a music festival in the UK, and right at the end - after 4 days solid of booze, MDMA, ketamine, coke, various hallucinogens etc - I suffered a massive panic attack. I did several NOS balloons in quick succession causing my vision to go into slow motion and I thought I'd died. Very unpleasant. The irony was this was supposed to be my last blow out after 6 years of quite sustained carnage. I wasn't a total psychonaut and was managing to hold down a decent job. I'd probably done acid and other hallucinogens about 10 times in that period but MDMA and Ketamine I was doing very regularly - at least a couple of times a month. But my wife and I had identified it had got too much and I had accepted a job overseas which was partly our way of getting away from the party scene for a while. So I very nearly got out in time, but sadly fate dictated otherwise. At this point I had no idea HPPD was even a thing.
3 days afterwards we moved away to Thailand. I was a bit shaken by the panic attack experience but there were no vision issues. I felt a bit depressed in the first few weeks away but this was to be expected having left our old life behind and missing friends and family. After about 2 months I started to notice that my vision felt very slightly off, but I put this down to antibiotics I was taking at the time. After 3 months we returned the UK for a flying visit where we went out with mates and got on it as per the old days - mostly MDMA and ketamine. Cue another panic attack, a sense that something was really very seriously wrong, and full blown HPPD.
We got back to Thailand and the next 6 months were hell as the major symptoms worsened (anxiety, panic attacks, depression, floaters, visual snow, depth perception issues, afterimages, DP/DR etc) and as I came to terms with what had happened. This was the worst period of my life and I was bordering on suicidal. I was terrified I was descending into schizophrenia and felt like I'd ruined my life irrevocably. I self-diagnosed HPPD through this site and other online resources. I needed to take a few weeks off work but soon came back and somehow kept it together. After about 6 months I started to feel the situation stabilise and over the next 18 months I very slowly got better. The key things that helped me were:
- Avoiding stress. I was lucky in that I was getting good pay and the pace of life abroad was relaxed so I had plenty of time to just chill and get better. Being in Thailand I could go for a massage and that helped a lot. Plus I did lots of yoga and just tried to chill. My wife was an absolute rock and helped me with this.
- Exercise. There are no downsides to working out as much as possible. It likely does you good in terms of aiding long term brain recovery, but it's worth it for the short term boost in mood alone. A great distraction and depression killer. I also figured that although I had become a less confident and less mentally sharp person, I could at least look my best. This is important in an ego-shattering condition like HPPD. Getting into shape is an absolute must when recovering from HPPD.
- New Experiences. We were lucky to travel a lot and seeing new places and meeting new people really helped with a feeling of moving on and putting the past behind me.
- Abstinence. I continued to drink booze as it relaxed me, allowed me to be sociable, and doesn't seem to have long term negative impacts. I also started to drink coffee again slowly with no adverse effects. But I stayed completely clear of any other substances. The feeling of getting further and further away from last having done drugs helped my mindset and made me feel like I was going in a positive direction.
- Supplements. I tried a few but the one that really helped me was Magnesium (the good stuff Magnesium Glycinate). I take it before bed and as well as helping me sleep well it also seemed to sharpen my vision 10% or so.
- Not letting HPPD prevent me doing anything in life. This is important. I kept on playing football and socialising even though my vision was driving me crazy and my instinct was to become a hermit and wallow in my misery. You need to get out there and own the condition rather than let it own you, no matter how hard it is at times. That means accepting invitations to parties, taking on new challenges etc. The more you achieve with HPPD the more you realise it doesn't have to be a life sentence.
- Time. Most things get better with time. Even if your symptoms don't get objectively better, your brain should acclimatise to an extent and you will come to terms with what has happened over time. So if you're in the depths of despair, hold on. It will get better.
After 2 years away we returned to the UK. I still had all the visual symptoms but they were fading into the background. We got a dog and my wife became pregnant, ultimately giving birth to our beautiful daughter. My visual symptoms bothered me every day of course but DP/DR had faded completely, I was managing with life, and I was generally happy. Once I got back to the UK we started hanging around with our old friends and I even felt sufficiently emboldened to do some coke at a party, which wasn't the smartest idea but didn't do any long term damage.
By summer 2016 - 3 years in - I was completely on top of HPPD. I still wished to get my old vision back but ultimately I was living a happy life and having been to hell and back was content with where I was. Unfortunately this is where the story takes a turn for the worse. I went to a music festival and thought f*ck it, I'm almost recovered, I'll just do some MDMA to reconnect with friends. I had read warnings from others on this site like Jay (how I wish I had heeded them), but the call of the old ways is strong and I couldn't resist. I felt fine at the time, no anxiety etc, although I wouldn't say I felt very euphoric on it like the old days. About a week after the festival I was walking the dog and suddenly noticed the world warping like never before. Over the last 6 months my vision has slowly disintegrated and is now about 10x worse than it ever was first time round. I now have awful trails, afterimages, a terrible sense of depth perception, and a feeling like I am seeing the world through a camera with a very slow frame rate. My vision basically looks like a video game from the 90s. DP and DR are back, worse than ever. I'm struggling to be able to read and am having an awful time at work. It's been doubly exacerbated last few days as I've been ill and took some Lemsip containing phenylephrine, which has caused my HPPD to spike further. I'm so depressed as I can barely look my beautiful daughter in the eye and just want to be as normal as I can be for her rather than some useless retard.
So the lesson is NEVER, EVER assume you are well enough to drugs again. Maybe there are some lucky souls who get away with it, but it will f*ck the vast majority of us up, especially MDMA. I'm fortunate to have semi-recovered once, so I will follow the same steps as last time and hope for the best. But life in the UK is a lot more stressful and I have a lot of responsibilities now. And I'm worried that I might have had only one shot at recovery, which I've now blown. If anyone else has ever been in the same boat I'd love to hear how you managed to cope with a self-inflicted relapse like this.
Anyway sorry this is so long but I hope my story is both encouraging for those just learning to deal with this, and also serves as a warning to others to be as careful as possible around drugs in the future. I'm going to try and contribute as much as I can to this forum now to help others out, and hopefully to report some improvement over the next couple of years.
Massive love and respect to everyone dealing with this sh*t. Keep on fighting. I'm pretty much a dyed in the wool atheist, but if somehow there is an afterlife, I'd hope we'd all be given a massive amount of credit for fighting this to our dying breath.
GP xx
Thanks mate. I know from last time that it gets better with time so am trying to draw strength from that. Totally agree about not dwelling on mistakes although it's not easy. Forgot to say that the first time I got this I had some CBT sessions which really helped. Obviously makes no difference to the neurological shit going on, but can help in managing how you react to the symptoms. My therapist was great at highlighting how pointless it was to dwell on the past, or to catastrophise about the future. This is essential for staying sane with this condition - you can drive yourself mad going over old regrets or fears for the future.