A rough guide for coping with HPPD after six months of first-hand experience

[K.B.Fante]

On May 8, 2015, I took one hit of acid. Ironically, this was perhaps the best and, eventually, the worst day of my life -- at least up until this point. I had so much fun with some of my best friends tripping acid in the desert, drinking beer, camping out and being generally insane (something I seem quite good at), but obviously since that time I've been living in hell 24-7.

 

HPPD is fascinating. How is it that for over six decades since the first studies of HPPD we've yet to figure out what exactly this is? Leading researchers, like Dr. Henry David Abraham, have devoted large portions of their professional careers to studying the effects of hallucinogens and other hard drugs to the brain and yet HPPD remains somewhat of a mystery. We know drugs leave lasting impacts on the mental landscape of the brain -- and in the case of HPPD, debilitatingly so -- yet for whatever reason society seems determined to turn a cheek when it comes to acknowledging the severity of these post-drug symptoms. It absolutely boggles my mind to think there are hundreds, perhaps thousands of people out there every year coming down with HPPD and never having known about this sort of possibility prior to their drug usage. If there's any calling to come from this, for every person out there reading this message board, it's to spread the word about HPPD with a vociferous voice. From friends to family members to teachers to cops to robbers to the president of the United States of America to the British Prime Minister and the tribes leaders deep in the jungles of South America and Africa -- people need to know about this!!!

 

In the future, however far it may be, someone somewhere will eventually crack HPPD, design a medication that will greatly decrease symptoms and severely relieve the pain of thousands of HPPD sufferers across the globe. But until that point, we're all stuck. Some of us are improving, some getting more sick and some retaining a relatively constant level of mental anguish year after year. I consider myself to be of the "improving" category, and after six months of HPPD, here is what I've learned:

 

1. There is no lottery ticket for overcoming HPPD; there is no cure

 

Jay said it best in a recent post: There is no cheating HPPD. For months I thought if I just did this, if I just did that, if I just took a certain medication, or saw a certain doctor or ate a certain food that I'd magically find the cure to HPPD. Unfortunately, your brain does not randomly weld back together millions of damaged circuits because you decided to eat an apple on Tuesday or because you took Vitamin D on Wednesday. Your brain has taken millions of years to evolve. It is one of the most spectacular specimens on planet Earth and most definitely one of the more complex. When you take drugs and subsequently acquire HPPD, you damage your brain. For your brain to therefore heal, it takes months, sometimes years or even decades. And sometimes, sadly, it does not fully heal at all. The point is this: Do not trick yourself into believing full health and recovery is right around the corner. If you truly have HPPD I can strongly assure you that you're old life is not within grasping distance. To heal takes time, and lots of it. So if you have HPPD my advice is to kick back and smell the roses (if your sense of smell is still functioning), because you're gonna be here for a while.

 

2. Doing drugs post-HPPD is to risk potential longterm brain damage

 

It seems every week or so somewhere on this board is a conversation about doing drugs, which drugs to do and how much of that specific drug that person should take. For the life of me I cannot understand how these conversations even exist. Doing drugs in unison with HPPD is just about the worst thing you could possibly do. I've learned since having HPPD that my brain is extremely fragile. Even the slightest rise in pitch from a person's nearby voice triggers my brain to convulse. And barking dogs -- they're the absolute worst. Because for the last six months my brain has been in shock, just as is the case for everyone else out there with this condition. HPPD is trauma, plain and simple. And when you're recovering from trauma the last thing you want is more of the same thing that got you there. Do Iraq war vets come back from the Middle East, go to their backyards and ignite pipe bombs in order to cope with their PTSD? Of course they don't, and if they did they'd be declared legally insane -- if they don't die first. Why on earth then would you do drugs to somehow cope with HPPD? What you need is to distance yourself from drugs as far as possible. I haven't had even a sip of alcohol in five months, nor caffeine or anything else. And you can bet your sweet ass the last thing I'll ever do again in my life is drugs, because believe it or not, I rather enjoyed my sanity prior to HPPD -- crazy as it sounds.

 

3. The brain reflects the body's health

 

If there's one thing the brain has been biologically engineered to do over millions of years of evolution, it's to move. This is fact. The brain is designed to exercise, and it rewards itself when the body obliges. One study from the past decade showed patients with clinical depression were happier after six months of rigorous exercise as opposed to six months of psychotherapy. In a recently published book about the most critical aspects of maintaining good health as you age, exercise was listed No. 1. But you don't have to take my word for it. Research the benefits of exercise yourself. It's astonishing. There is simply no better way to overcome mental and physical health obstacles than to move. And when you really push yourself, exercising rigorously until you've expended all your energy, the brain has been shown to rewire itself at a rate that anybody with HPPD would consider highly encouraging.

 

In addition to exercise, eating healthy should come in as a close second on the list of things you absolutely must do to improve HPPD. We've all heard the phrase "You are what you eat." Well, this is more true than most of us would like to believe. Whatever your body consumes is fed to the brain and eventually expressed in physical form. Eat at McDonald's for a week straight and you'll feel like death. Eat nuts, grains, beans, seeds, berries, celery and other fruits and veggies proven to be excellent for the brain and you'll feel more alive than ever. Eat all that stuff for months and years, and your brain and body will in turn transform. I've seen the results already. Eating healthy and exercising have made a difference. They've contributed to my decreasing symptoms and growth towards regaining full health. When I go without either I feel it, and more importantly, I see it in my visuals. I therefore will continue to remain healthy and I have little doubt I will fully recover as a result.

 

4. The brain reflects the mind's curiosity

 

Think of your brain as a muscle. It's in poor condition and you want to make it stronger. Just like a muscle, you have to exercise it in order for it to build strength. But lifting weights one day does nothing. It's when you lift every day, over and over and over, that you start to see results. But the fact is, you have to have the drive and determination to accomplish this feat. Body builders work tirelessly for years to reconstruct their physique and to do the same with your brain requires a similar amount of exertion.

 

I don't know the science behind this, and perhaps I could be totally full of it, but I believe the more stress you put on your brain the better. Brain fog is an absolute nightmare, but I've noticed an increase in my brain fog coincides almost always with an increase in information processing. You don't get brain fog watching TV because watching TV requires no effort. You get brain fog instead when you read challenging books, when you try and hold lengthy conversations, when you attempt to switch rapidly from one task to another, when you attempt to inject lots of information into your brain at one time. And though it's painful and extremely frustrating, I firmly believe that brain fog is an indication of a mind at work, and that's a good thing.

 

My advice would be to try and exercise your brain every day. You don't have to overdo it, just as long as you're creating stimulation upstairs. Every time you learn something new it activates a certain part of your brain and in order to build that part of your brain back up it takes constant activation all the time. Play Lumosity, read, learn a new language, learn to play a musical instrument, take up astronomy or knitting or cooking or anything else that gives your mind stimulus. Though I can't prove this as a reason for my recovery I neither can disprove it, and I strongly believe it's helped me, if for nothing else than to pass the time, stay busy and keep my mind off my symptoms.

 

5. Stay busy and get into a routine that promotes healthy well-being

 

Prior to HPPD I was just about the least routined person I knew. The highway was my best friend. I traveled all over and hitchhiked across several different countries, and when I arrived home I traveled more, only in smaller distances. I never worried about where I was going to sleep or what I'd encounter the next day. And yet, since acquiring HPPD I've discovered this type of lifestyle to be impossible. The best way to cope with HPPD over the long haul is to set up a daily routine and stray from it only when absolutely necessary.

 

Every day I wake up and read for about an hour. I then eat my healthy breakfast -- a combination of eggs, yogurt, fruit, nuts, grains and certain milks, all foods that promote cognitive brain function -- and go to work where I stay busy all day long. When I don't work, I go to the park and play basketball, then I stretch and run, come home and take a cold shower and do some writing. Every other day I do sit-ups and pushups and I have certain websites I check as well. By the end of the day I'm tired and I meditate every night for at least 15 minutes and I then sleep well. When I wake up, I do it all over again.

 

My old self would characterize this new lifestyle as bland, but now that I have HPPD I couldn't disagree more. This type of routine is absolutely vital to ensuring my recovery. Staying busy is without a doubt one of the most critical parts of dealing with HPPD on a daily basis. Every time I've hit an extreme low, it's always been in combination with boredom. When you have time to think, you naturally start to think of your symptoms since they're the only thing right there in front of you. Then you think about how terrible your life is, how good it was prior to HPPD, and before you know it you've completely gone down the rabbit hole. To have HPPD is to be constantly running. You can occasionally stop for a breather or for water, but from my experience it's best to resume your movement before the demons have a chance to catch up.

 

6. Make peace, stay positive and embrace the pain!

 

The mental battle with HPPD is like nothing I've ever experienced before. It's unrelenting and perpetual. It never stops. In this sense, it's absolutely vital to make peace with your condition. To continue my analogy from above, you have to accept the fact that you're going to be running from here on out. You do not have a choice. And it does no good to dwell on the past. Though you may never fully embrace your new life, what you can learn is to adopt a new tolerance for pain.

 

Gautama Buddha spent a decade finding himself sometime during the sixth-century BCE, traveling and living without any ties to the material world (he even lived completely naked for a while), and what he discovered formed the basis for his religious following that permeates the world today: Life is suffering. That is the single-most emphasized revelation he discovered after 10 years of inquiry into the natural world and the primary foundation of his philosophy eventually passed on in his early teachings. Of course, this couldn't be any more applicable to HPPD.

 

There will be times when HPPD just wins out. When you can't take it any longer. I've had a handful of these times during my sixth months living with HPPD and it's been truly demoralizing. I always simply gave up, went to my room, laid on my bed and dived deep into my depressive mind. And I truly think it's OK to do this. You can't always maintain an unwavering sense of optimism throughout this process. That's just not realistic. What matters, however, isn't that you cave in, it's how you respond afterwards. You have to always get up and search for the light one more time, get up and face the world another day, and you have to do this repeatedly over and over. And when you make this sort of resiliency a habit, you in turn grow as a person. You become more patient, more wise, more capable of handling the eventual suffering that will inevitably come your way. But, this sort of pain and suffering is just how life is conducted, as Buddha stated over 2,000 years ago. It's how you chose to embrace it, to live with it and make it your ally or enemy that truly dictates where you end up when it's all said and done.

 

7. Surround yourself with those who understand, not those who refuse to believe

 

HPPD, as is the case with most traumatic experiences, provides a unique opportunity to see which people around you care and which people are rather more preoccupied by their own self interests. I'm not saying selfish people are therefore bad people, but what I am saying is that selfish people aren't exactly the best types of people to surround yourself with when enduring HPPD. I learned this the hard way but now that I know I feel it important to pass along.

 

You will find out early on which people make you feel comfortable and which people have either no effect or a draining effect on you. When you discover the people who care and want to help you, try and surround yourself with those types. Connect with them, talk to them, tell them what's going on, but also be sure to maintain a certain amount of space. You need this both for yourself and for the sake of those dealing with you. What I'm absolutely certain of is that the more time you spend around the selfish and draining people, the more drained and helpless you therefore become.

 

This is an extremely difficult aspect of dealing with HPPD. It makes you see people through a totally different lens (even more so than the already distorted lens of your visual symptoms). And you shouldn't harbor any deep-seeded resentment towards people that don't really understand what's going on with you. All you need is to create space between them. That's all it takes. You can still maintain healthy and positive relationships with them, just as long as you don't rely on them to guide you through this journey.

 

Again, find those who understand you and make an effort to surround yourself with them. There are really good people in the world and they are there to help. The feeling of knowing people are there for you makes all the difference in the world when you're trudging through a dark and empty place where you feel desperately alone. Trust me on this one.

 

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After six months of living with HPPD I'm still a long ways from being fully recovered. Truth is, I figure I'm somewhere close to the halfway mark, but I also don't know for sure. Perhaps it will be a year, or two, or even three before I feel like my old self again, but what I do know for certain is that I'm improving, and with HPPD that's about all you can ask for.

 

I don't think the above methods are in any way novel. This board is teeming with similar advice to exercise and eat right, to stay away from drugs and keep busy. But what I do know is that the above recipe has worked for me. It's worked people. I repeat: IT'S WORKED! For those suffering with acute HPPD, any crack that sheds light toward the end of the tunnel, however far away it may be, is welcomed. And that's exactly all this is. It is a very dim and far away light, but it exists and it's real. I'm here to tell you.

 

I'll be around this board a lot and if anybody has any questions they'd like to ask feel free to message me. I'm no encyclopedia, but I am keeping an active journal about my symptoms as well as keeping a close eye on how they're changing and how long it's taken them to disappear. Perhaps I can lend some advice, perhaps not. Everyone is different and different symptoms require different forms of living. If you disagree with anything or want to correct me please do so below so that we can keep this dialogue ongoing and improving.

 

Lastly, I'd just like to wish everyone good luck and godspeed. This has been without question the toughest six months of my life. I don't know that anything in the world could prepare someone for HPPD, but it's vitally important we do our best to encourage one another and to be there for support. In closing, I'd also challenge everyone to view this condition as a calling to help others. Ask yourself what you're doing to help promote HPPD awareness. Who are you talking to? How loud is your voice? And where are you directing your message? The only way we're going to prevent other people from potentially obtaining HPPD is by making sure they know about it before drugs enter the picture.

 

Again, good luck everyone and remember to stay positive, challenge yourself and always look to the future!

 

-- K.B.

[256]

It truly is a demon like no other. Your case and mine seem to be very simillar. You have me beat by 2 weeks though so congrats on the 6 month mark! I'm continuing mechanical engineering classes at my university, just joined a fraternity and got a beautiful girlfriend so things are looking up. I still contemplate suicide daily but have enough reasons to tell myself not to. PM me if you ever need to talk or just want to.

[Jay1]

Great post and something everyone here should read... Only thing I don't fully agree on are some parts of point 1... We don't know the mechanics of HPPD and brain damage is unproven... I am sure there are neural issues at play, but that is different to brain damage. Also with "Do not trick yourself into believing full health and recovery is right around the corner.".... I don't think it's a bad thing to hold out as much hope as possible of a very quick recovery but it absolutely MUST be backed up by all the actions you go on to mention.

 

I also think that people should try and go med free, whenever possible, in those early months,,,,, Learning to live with hppd without a crutch made me a far stronger person, I know my baseline, i know my trigger points, i know how to bring myself down from dp/dr episodes or panic attacks.... These skills are essential and will be harder/impossible to learn while medicated up.

 

Again, great post... Thanks

[K.B.Fante]

Thanks for the response Jay. Your opinion is always highly valued.

 

I tried to be as vague as I could about the actual mechanics of HPPD since I don't know. I guess I assumed there was some sort of damage up there because my doctor said HPPD is like suffering a traumatic brain injury, given recovery time and and similar symptoms. I'd really like to keep digging and reading the research articles here to find out more about the specifics. 

 

In terms of recovery time, I hope I didn't dissuade people from being optimistic. As I say in No. 6, staying positive is key throughout this process. But there's a difference between being optimistic and being realistic and I think if you're too much either way it can be harmful. For example, when I first got HPPD I was incredibly optimistic that I'd get over this in a few weeks, then a few more weeks, then a month, then another month, and every time I held out optimism I was completely shattered when I realized this wasn't going away anytime soon. I became very depressed, and thought about suicide a lot during these times, and as we all know, that's not a good combination of emotions to pair with HPPD. Once I finally made peace with the fact I was going to be this way for a very long time, much longer than I ever thought, I stopped being depressed and anxious and making plans and started setting up a firm routine that promoted good health. And this was a turning point for me, just coming to terms with the length and slowness of the process. Perhaps it's not for everyone, but I do think it can really help to sit yourself down and say, "This is me. This is who I am now. If I stay healthy and work hard it will change. But right now, and for the forseeable future, this is the life I've been given." I guess I'm just saying that the HPPD recovery process is a long haul that takes lots of work and discipline and is not something you wake up from one day feeling completely cured -- at least not the type of HPPD I have.

 

I too would agree about meds. When I first got HPPD all I wanted was meds because it was so painful and I thought meds would be the only thing that would help. Benzos have worked for me in tight situations but I also got put on Lamotrigine which was supposed to be really good for HPPD and actually made my symptoms a lot worse. From my experience meds just mask the symptoms temporarily, but I don't know that they actually improve HPPD. Is this accurate to say? I mean, I don't really know since I've only been on a few, but I do know that outside of the benzos I've been prescribed virtually every chemical substance that's entered my body has exaggerated my symptoms, even those that were supposed to help like vitamins and Lamotrigine. But again, to each his own. If meds work for you then all the better.

[Jay1]

Yea, you are right... Cautious optimism is probably the best approach... Keep in mind that you can recover from this, but don't start worrying about timelines and checking for improvements all the time.

[K.B.Fante]

That's exactly right Jay. I truly believe setting up timelines, checkpoints and other dates to be at a certain point in your recovery is only setting yourself up for massive dissapointment and depression. With HPPD you are not in control. You cannot decide to be better in one month because you have a wedding to attend or a date or a function or anything else. You really have to let go of these imaginary timelines and embrace whatever one HPPD gives you. It's best to take it one day at a time.