Sign in to follow this  
Followers 0
Gold Panda

How to succeed dealing with HPPD...and how to mess it up again

13 posts in this topic

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

 

 

 

 

0

Share this post


Link to post
Share on other sites

Thanks for your story-

 

I've been feeling especially disabled lately, after feeling pretty good for a few months.  Keep up the good fight! You have a good reason to get out of bed in the morning and do your best now.  I can't even imagine caring for a child.

0

Share this post


Link to post
Share on other sites

Man, I cannot imagine what you're going through right now. I'm at 20 months of HPPD-DP/DR and I've had to claw my way inch by inch from the abyss of living hell just to get to a point where I'm OK day to day. I've thought about it before and I really think if I somehow had this happen again I might just go through with suicide considering how much I've struggled with ideation already. But that's all speculation. Perhaps I'd be more motivated to beat it again since I know how to and did it once before. I just don't ever want to put myself in a position to be there. Dealing with HPPD one time is already one time too many...

From everything I've read MDMA is just about the worst drug for getting HPPD, next to acid perhaps. Those two seem to be pretty common on this board and seem to result in the most intense symptoms. Speaking of which, my symptoms are almost EXACTLY similar to what you've described. I was in an entirely different world when this first happened to me a few summers ago. It was like living inside a cartoon: 2-D vision, streamers everywhere, a total disconnection from your body and the experience of a unified self. It was all so surreal but after 20 months I've made tremendous progress and imagine that in another 20 months or so I should be well on my way to overcoming this for good. 

If I could offer a bit of advice, I'd suggest cleaning up your diet as much as possible, leaning towards a paleo style diet with limited to no gluten, lots of veggies, fruit, etc. Of everything I've tried nothing has helped me more than totally transforming my diet and becoming a die-hard health nut. I started my dieting about six months ago and have made more progress in that time than I did in the entire year prior. I honestly went from suicidal to being pretty content with my condition and not noticing it every single moment of every day, which is pretty huge considering I couldn't do anything without noticing it before. If you want anymore information on dieting, supplements and what's worked for me I'd be happy to send it your way. 

Keep your head up though mate. I really believe in the body's ability to heal (that's essentially what it does in a nutshell), especially if you provide it with the necessary fuel it needs (aka, whole, healthy food). Also, be sure to listen to your own advice and give yourself plenty of time to heal. Don't irrationally think you're doomed after a few months or even years. You might have this for a long time but this condition takes a long time to heal from so you always have to keep that in mind and never give up. 

Good luck though and let me know if you want any further info on good health practices. 

 

0

Share this post


Link to post
Share on other sites

Thanks guys.  I am definitely looking to give myself the best chance of recovering again in 2017 through the best possible diet (maybe not hardcore paleo but certainly much more fruit and veg based and no processed crap), as well as upping my exercise regime.  The little boost a workout gives you can be the difference between making it through the day or not.  I'm going to enter a couple of running races too to give me some goals to aim for.  The more you achieve with HPPD, there you reduce its power over you.   

I've seen a few people on this forum talk about wanting to have kids but worrying about being able to be a parent with HPPD.  It's a tricky one.  I won't lie, it can be difficult being on duty 24/7 and coping with the broken sleep etc.  But my philosophy throughout this has been to not let HPPD prevent you doing anything in life.  My daughter is only one year old and I find playing with her very therapeutic (we're on about the same mental level at the moment lol), but I worry a bit about dealing with bad behaviour and so on when she's a bit older.  On balance though it's a magical experience and if you want kids, I don't think you should let HPPD prevent you.  It gives you a real purpose in life.  Even if I might have messed up my own life to an extent, it will still have been all worth it if I manage to bring up my daughter well.  99% of parenting is just giving love, and I still feel very able to do that even with HPPD.  I'm lucky to have such a great wife who is an amazing mum though - being a single parent with HPPD would be unsustainable IMO.

If you're not interested in kids or feel it would be too much, I strongly recommending getting a dog.  In fact I think dogs should be standard issue for those recovering from HPPD.  The routine of feeding and walks gives you a daily routine to follow and there's something about the unconditional, uncomplicated affection a dog gives and receives that is perfect for people in our predicament.  

0

Share this post


Link to post
Share on other sites

Could not agree more with regards to dogs. I got a dog about three months ago and it was the best decision I've made since getting HPPD. Pets give you purpose, take your attention away from your symptoms, allow you to establish a routine and can make you happy knowing you have something that loves you and needs you, most of all. I cannot recommend getting a dog enough. Who knows, it might even save your life!

0

Share this post


Link to post
Share on other sites

Hopefully the fact that you managed to more or less overcome it once means your body/brain or whatever can do it again. One thing to make sure not to do is to beat yourself up about falling back into drugs again... That just adds an extra layer of stress... Its' done... Learn from it, but don't over analyse it.

good luck mate

0

Share this post


Link to post
Share on other sites

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. 

1

Share this post


Link to post
Share on other sites

Hiya, I haven't really used this site for a few years as after 10 years of ups and downs with many relapses I got better with the help of dr Abraham. The site does seem a bit dead compared to a few years ago.

I have also had similar experiences with hppd and also have a new born daughter.

After many years, with dr Abrahams help! I identified the triggers for my hppd are stress and anxiety.

viscious circle really, the hppd gave me anxiety and panic disorder and the panic and anxiety would make my hppd flare up.

A combination of meds to calm my anxiety and a refusal to be held back by all of this actually saw most of my symptoms fade to a comfortable/ manageable level to the point of actually forgetting I had any disorders for periods of time.

Over the last few years I have build a successful business employing 8 guys and have had a baby daughter, I have also bought several properties which I'm currently renovating.

unfortunately with my stubbornness and refusal to let anything stop me, I have reintroduced a lot of stress back into my life.

My anxiety has flared up this last month

I have slowely been increasing my citalopram to control it and am now on the max I also take lorazepam daily.

I'm currently functioning ok and Keeping my anxiety at bay seems to control the hppd.

I don't like being reliant on benzodiazepines and I'm trying to figure out a better plan ATM.

possibly taking l-methylfolate as a supplement along side my citalopram to improve its effectiveness once again. Hopefully if that works I would come off the benzos.

I had posted in the meds section to see if anyone had tried l-methylfolate to no reply.

Anyway I guess a combination of combatting my panic disorder and trying my best to ignore my symptoms and lead a normal life has over time faded my symptoms.

 

 

0

Share this post


Link to post
Share on other sites

Hey everyone. I've had hppd for like 10 years. Or atleast I think it's hppd. I'm not exactly sure. I first got it when I was 18. I had smoked some weed that made me trip out like really bad. I had never taken acid or hallucinogens before so I don't know if the weed was laced or if cuz I was on meth when I smoked weed they mixed together. But I was tripping out Real bad. I had been doing cocaine for some months and I decided to try meth. I was on it for 3 days and then smoked the weed. I figured it was the meth that had made me trip so I went back to doing cocaine and said I'll never do meth again. Well one day a few months later I decided to smoke some weed again and it made me trip out so bad again. This time I never went back to normal. I've never been the same since. I thought nothing looked real my vision was off and my vision was choppy. I felt all these weird things in my head and body. I've just been real messed up. It also messed with my cognition and executive functioning. I was supposed to go to the military but was unable to because of this. I struggled everyday just to make it through. I thought I was doing okay when I was 21 cuz I was making it by as a waiter at a restaraunt. I new things weren't right still but I thought I was doing okay. I would still drink and do cocaine here and there. Well 2 years ago when I was 26 I started a new job at a car dealership. I wanted to try a career as a car salesman. Kind of forgot how messed up I was from hppd I guess. Well things just got worse and worse. My cognitive function is horrible. I thought I had dementia or wet brain at one point. I feel Horrible sensation after horrible sensation. One day I thought I had a stroke. I can't even comprehend what I've been through and stil going through. I quit the car dealership went to the mental hospital. I've now been in the mental hospital 6 times since two years ago. I've tried all kinds of medicine. It seemed everything did nothing or Made me worse. I'm writing on here if anyone has any idea of what medicine to try. I have read somewhere about kolonopins, and Keppra and sinemet. Can someone help me with info about those and how to take them. I am desperate. I am writing suicide notes out now and planning for my death as I am not about to end up being stuck in a mental hospital for the rest of my life. I pray god will forgive me but I don't think I will be alive much longer. If anyone has any suggestion for help please help me. 

0

Share this post


Link to post
Share on other sites

Klonopin is pretty much the only thing that helps me, med wise. It is highly addictive and tolerance building though, so you will need a plan of action. I take it 4 days a week and then 3 days off, with a 10 day break every 2 months... This has worked for me for 6-7 years now, no tolerance, no withdrawals.

1.5mg reduces my symptoms by about 60%, maybe 70%... It means I can get out there and get stuff done.

Neither Keppra or Sinemet didn't work for me, but has helped other... Certainly worth a try.

Keep on fighting... PM me if you need anything.

0

Share this post


Link to post
Share on other sites

I come here to say that I messed up completely after having recovered. More than one year abstinent and I took MDMA one day.. Nothing happened. Fast forward the last four months I have been taking drugs and alcohol like 2-3 times per week. MDMA, 2cb, cocaine, speed, a lot of alcohol, marihuana... The HPPD is worse, but not as bad as it was in my worst.. not even near.

The problem now is not HPPD. The problem is that I'm a fucking addict and I messed up. I can't stop. I need Naltrexone. If I don't stop now I will probably commit suicide in one or two months. I can't stand this anymore. I'm completely ashamed of myself. But Naltrexone fucking works. I take it for a few weeks or even months and the cravings and addiction dissapears. This time I just won't lose. I won't go to any situation in which there is alcohol or drugs. I won't befriend with anyone that takes drugs or gets drunk weekly. And if I have, I will take Naltrexone so I know there is no risk.

0

Share this post


Link to post
Share on other sites
On 1/30/2017 at 1:53 AM, boozebome said:

The problem now is not HPPD. The problem is that I'm a fucking addict and I messed up. I can't stop.

You need a rehab for your drug addiction. There is help for sure. I did this and I'm abstinent now. Find a rehab clinic for your addiction. Go to your doctor and tell him that you have a drug problem and need help as soon as possible because you can't stop. Doc will help you. You are going to be drug free I'm sure. Don't tell yourself it's not possible to become rid of it. I also did. I know the first time it's hard. I was in a clinic and in the first time you have difficulties for sure but also because you're in a clinic where everyone just wants to get rid of addiction you have motivation to do so also you're out of your current environment and you have time to really change. Please do it!

It's not "too late".

Edited by hppdvictim92
0

Share this post


Link to post
Share on other sites

I was sober till I went to a party with the wrong people.. and the cues were too much. That was some months ago.

Now I'm in the process of recovery: Naltrexone for the cravings and blocking all the people who take drugs. I know it's possible! For almost all of 2016 I was sober. There are groups for alcoholics and addicts in the city where I live, but I just can't be bothered. I know that Naltrexone plus separating myself from the people and places where I can find or promote drugs use is sufficient.

Edited by boozebome
0

Share this post


Link to post
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
Sign in to follow this  
Followers 0