I think I have HPPD - what should I do? Part Two

So you think you might have developed HPPD, part two

Hello! Welcome to the second part of the series on what you should be doing if you think you may have developed HPPD. If you had your drug experience relatively recently, I would suggest that you close the blog as per the advice of part one. 

HPPD is sensitive and intense stuff, so I’ll ask any readers currently worried to try some deep breaths again, as in the introduction to part one. If you’re reading frantically, your heart is racing, your vision is narrowed and you feel a sense of scrambling for answers, I would advise that you put the device down and try to regain some calm. A state of acute anxiety is not one in which you will be best-placed to process information that may, I hope, be of use. 

Is this HPPD?

So: you took drugs and you’re noticing some weird things that may well be scaring you. To check if this could be pointing at HPPD, ask yourself:

1. Have you been experiencing unusual visuals for some time - several weeks, months, maybe years - since you took drugs?

Take note of how many of these apply to you and how often. Note, HPPD is diagnosed when these visuals are not better-explained by another mental health or neurological condition, including head injury, brain infection, existing problems of migraine-with-aura, or schizophrenia.

• I experience what appears like T.V. "static" projected over my vision during the day, or especially at night. 

• Stationary objects appear to sway side to side, wave up and down or move. 

• I see lights/colors that ring around the perimeters of objects. 

• I see an image of an object when I look away from it.

• When I read, I see white and/or black shadow "ghosted" images of the text.

• I notice geometric patterns in my field of vision when my eye is either open or closed.

• Spontaneously, an object will appear larger or smaller than it actually is. 

• I see objects leaving trails behind them as they move, like long exposure photography.

• I feel detached from my body, as if I am observing it from a distance. 

• I experience the world as dream-like, alien and unreal.

• I hear ringing in my ears

2. Are these visuals impacting your quality of life, work, hobbies and relationships?

Take note of how many of these apply to you, and how often. Because of these visuals, do you experience:

• Difficulties concentrating

• Difficulties seeing

• Panic and anxiety

• Confusion and overwhelm

• Depression and sadness

• A desire to isolate

• Self-consciousness and embarrassment

• Worry that your life will never be the same

• Worry that you are ‘going insane’

If you fulfilled a number of these criteria, it’s possible you may have developed HPPD. It may be reassuring to know that there is a ‘thing’ for whatever you’re experiencing; it may also be daunting and worrying. Try to keep calm and read on.

Hearing the news that you have developed HPPD can be very frightening.

Be reassured: it may be a struggle, but you can recover!

Clearing up misinformation and concerns

1. HPPD is not schizophrenia or psychosis. Unlike those in active psychosis, people with HPPD are not separate from external reality. In particular, they do not experience delusions (i.e. thoughts, ideas or fantasies - often bizarre - that significantly stray from available evidence) or hallucinations they believe are ‘real’.
   

2. While HPPD is defined in the DSM-5 (the Diagnostic and Statistical Manual, or the book used by psychiatrists to guide diagnoses of their patients) as a ‘re-experiencing’ of psychedelic trips, evidence is increasingly making clear that the symptoms are more complex.

   • You don’t necessarily have to have experienced any of these symptoms beforehand while tripping.

   • These symptoms are not necessarily linked to the use of psychedelics or related drugs, either, and appear in a wide variety of other conditions that affect visual perception (migraine-with-aura, Visual Snow Syndrome, epilepsies, etc.).

   • In the case of HPPD, these symptoms are treated as drug-induced. Note, even SSRIs and antibiotics can create similar visual effects, too!
     

3. What does this mean? It weakens the idea, inherited by many HPPDers (especially at the acute phase of having first developed the condition), that they are ‘perma-tripping’!

   • Better put, it seems that HPPD describes a broad but consistent set of conditions in which people develop significant changes in visual perception after psychedelic drug use, many of which can be caused by other factors or appear in other conditions.

   • Rather than being a unique condition affecting ‘druggies’, HPPD is suggested to lie on a spectrum - even with normal visual perception, which can include many of the same phenomena (especially on ‘static’ on blank surfaces or in the dark, or floaters)! In fact, you may be surprised to learn that people with anxiety, depression and neurodivergences can experience certain visual ‘oddities’ associated with HPPD, even without ever having taken drugs. You aren’t as ‘abnormal’ as you think!

   • That said, the visual symptoms people experience with HPPD can be very psychedelic, which is what makes researchers and clinicians suspect that HPPD points at something special and unique. These psychedelic visual phenomena can be very reminiscent or identical to those experienced while under the influence of psychedelic drugs.

   • All that still wouldn’t mean you are actuallly perma-tripping. LSD and other drugs leave the body and are processed within 48 hours!
     

4. HPPD is diagnosed depending on whether it involves ‘clinically-meaningful distress’ and impairment to social and occupational function and quality of life. If you read further down, you’ll see that people can experience these symptoms in ways that don’t necessarily bother them.

   • This suggests that focusing on the distress itself can be a useful strategy ahead of seeking to reduce the visuals directly (see more below).

A holistic series of questions 

For those still with us, it’s essential to do a check-in on your lifestyle and general state of mind when handling HPPD. It may have brought something very new and troubling into your life, but it’s not a thing that should be viewed separately from your wider life. 

Ask yourself the following questions. Be honest! Perhaps it’d be helpful to get a pen and paper and write down your answers one by one, taking your time. 

Each question follows the same format: asking yourself if there is anything, however small, you could be doing more - or less of - to pursue a particular task or goal, both directly and indirectly related to HPPD. Note, some of these may feel like they have nothing to do with HPPD at all, but they all do! Recovery is closer to home than you might think, and can take place in areas you might not have assumed were relevant. And why start small? This is one of the principles of exposure therapy, one of the firmest evidence-based modalities in all of clinical psychology and psychotherapy. 

Doing anything towards recovery and restoring quality of life might seem big and unconquerable in abstract, yet there is always something you could do. Think about it: if you get even 1% better each day, you’re 5% better after 5 days (less than a week, of course). That might seem small, but that’s one-twentieth. Politicians and business leaders on senior boards would do a lot for 5% of the vote! And what is it after 2 weeks? 14%. 3 weeks? Over one-fifth. Small steps each day towards your recovery will reap exponential gains, however hopeless you may feel. 

The HPPD Recovery Mountain

One step at a time!

Let’s get started. Take deep breaths. It’s possible you might hear a very negative voice: a source of ‘catastrophic thinking’, in which your mind defaults to the worst possible option or answer. Have trust that there will always be something you can do. Accept that this voice is only there to protect you against what could be a very strange and threatening new reality. Acknowledge that voice’s presence, but remember that you don’t have to listen to it.

1. Is there anything, however small, you could be doing more - or less of - to increase the quality of your sleep?
   
   

   • Low-quality sleep is significantly associated with anxiety, irritability, low mood, depression, confused and unclear thoughts, feelings of depersonalisation-derealisation, and the direct symptoms of HPPD.

   • Ask yourself:

     • Are you consuming caffeine products or using nicotine in the afternoon or the evening? 

     • Are you exercising too late, or not exercising at all?

     • Do you frequently over-sleep and feel groggy?

     • Do you nap a few times during the day?

     • Are you using devices an hour before sleep time or during the night when you wake up? 

     • Do you have regular waking and sleeping hours? 

     • Could your bedroom be a more equitable temperature, either colder or more hot (too much of either is bad for sleep)? 

     • Could you stretch and relax yourself more before sleeping instead of getting into bed all tense and taut? 

     • Could you get blackout curtains, or save up to get some? 

     • Are you working too late?
       
       

   • Improving in any of these factors, evidence suggests, could raise the quality of your sleep.
     
     

2. Is there anything, however small, you could be doing more - or less of - to increase the quality of your diet?
   
   

   • Low-quality and high-sugar diets consumed over the long-term are associated with anxiety, inflammation and high degrees of nervous system arousal. Some evidence also suggests that a carefully controlled diet has helped some people with Visual Snow Syndrome (VSS), a closely related condition to HPPD.
     
     

3. Is there anything, however small, you could be doing more - or less of - to get less ‘in your head’ and more ‘out in the world’?
   
   

   • Do you notice that you experience breaks, however brief (perhaps even thirty seconds to a minute!) from thinking about HPPD when you’re doing something external - especially when you do something you love

   • Ask yourself:

     • Is there anything you could learn, improve at, or practice with your favorite hobby? 

     • Do you have anyone, however tenuous your connection, with whom you could speak about something that isn’t HPPD-related? 

     • Are there any tasks at work, college, high school, university, you could be doing more of? 

     • Are there any goals or achievements you have set that you could be working more closely towards?
       
       

4. Is there anything, however small, you could be doing more - or less of - to reduce your baseline levels of anxiety?
   
   

   • Feeling anxious can be a big trigger for raising the intensity of people’s HPPD and making them notice it more. Dealing with all the above could help to reduce baseline anxiety, but you can also target the source through other kinds of personal work. 

   • Aside from the HPPD you are currently experiencing, have you ever struggled with persistent anxiety and/or low mood for any period? Do you believe these may still be lurking in the background, perhaps having been amplified by the drug experience? 

   • Only you can know the specifics, but ask yourself:

     • Is there anything you could do to make progress in dealing with your wider mental health or personal issues? 

     • Are there problems in your relationships or personal life you could make any impact on? 

     • Are there any conversations you know you’ve needed to have for a while but haven’t yet held? 

     • Are there any ways in which you could be more forthright, authentic and strong in your conversations and dealings with others?

     • If you feel you need it, is there anything you could do to find a therapist or care professional?
       
       

5. Is there anything, however small, you could be doing more - or less of - to increase the quality of your attention?
   
   

   • Do you find yourself monitoring for visual symptoms almost-automatically? Do you want to stop fixating on HPPD but your mind keeps going towards it? While it may seem impossible right now (How could I not focus on the visuals when they’re so intense and always there?, you ask), this doesn’t mean you can’t or shouldn’t improve the quality of your attention. With dedicated practice, you can train your attention to:
     
     

   • Be stronger and more resilient

     • Could you spare any time for doing a longform task, ideally with any less distraction - or, ideally, without distraction at all?

     • Could you spend forty minutes with a new album in ‘deep listening’, paying close attention to the unfolding sounds and the way they course through your mind and body?

     • Could you read a new book - even just for ten minutes? 

     • Could you find a recipe for a delicious new meal - buy the ingredients, prepare and cook them, eat and serve them - while not playing with your phone, and paying close attention to your body and the sensations the process engages?
       
       

   • Be better-directed

     • Could you spare any time to try a technique like Attention Training (Wells 1990), which has been shown to be a promising and easy way to improve your attention and reduce anxiety?

     • Could you invest five to ten minutes a day trying an exercise in mindfulness?
       
       

   • Work over a broader surface area of your senses

     • For those possibly experiencing HPPD, visual perception can become a very overwhelming area of sense engagement. It seems that many of us can lose touch with our other senses! 

     • Even if you were experiencing a disturbing and intense visual, is it possible for you to invest any time or mental energy on, say, the sensations of your stomach, the sounds in the room, the whir of traffic outside?

     • Could you spend any more time tasting the flavors of the food you eat - even if it’s only a matter of a few seconds of a meal?
       
       

6. Is there anything, however small, you could be doing more - or less of - to increase your degree of comfort with the visuals?
   
   

   • ‘Folk wisdom’ in the HPPD community suggests that ‘acceptance’ is a core cognitive requirement for recovering from the distress and overwhelm of HPPD. Even if direct acceptance - especially with all its downstream associations, implications and impairments - seems impossible right now, working ‘within and around it’ (almost like a psychological superspy, or devotee of the Art of War) by focusing on all the factors described above can create patterns of momentum that make acceptance easier.

   • In terms of direct acceptance, it’s significant to realise that - no matter what - your HPPD looks exactly as it looks right now. That doesn’t mean it won’t decrease in intensity over time; it just ‘is what it is’ at any one moment, and it won’t kill you. In fact, just as Alan Watts described with his notion of the ‘Backwards Law’, the more you resist what you’re experiencing right now, the scarier your experience becomes and the less it listems to your resistance! Between the two steps is anxiety. And what does anxiety do to HPPD? It makes it worse!

   • Ask yourself:

     • Could you try, even for ten seconds, to accept the visuals you’re experiencing right now and not resist them - to treat the visuals as ‘just fine’? If that sounds like a step too far, could you try doing it for a few seconds, or even one second?
       
       

   • While the HPPD may seem entirely negative, it is also possible that there is something you might enjoy about the condition. For instance, while my visuals can be a source of distraction and discomfort - and slight annoyance, especially while I’m trying to follow a lecture or a work call! - I do enjoy them occasionally. It’s hard to know for sure, but I feel that my HPPD might have enhanced my sensitivity to music, too: when I put on an album I enjoy, sometimes it’s as if I’m in quite an altered state (a pleasurable one, that is)!

   • Some degree of enjoyment is the case for many people with post-psychedelic visual changes (PPVCs), which could affect as many as three-fifths of lifetime users (although, be reassured, probably in ways that are less intense than full-blown HPPD).

   • If there is something you enjoy, accepting and nurturing this fact doesn’t deny that you’d overall consider HPPD not worth the costs. But, speaking pragmatically, it might make whatever burden you’re dealing with easier-to-handle.

   • It’s possible, too, that you might have developed personal emotional associations with your HPPD - a sense of embarrassment,  for instance, or self-blame, angst, regret, a feeling of being a ‘freak’, a ‘weirdo’ or ‘broken’. Ask yourself:
     
     

     • Is there anything you could do to increase your sense of competence and self-worth? 

       • Could you set a goal, however small, and achieve it?

       • Could you make any improvement in the external tasks, perhaps like those described in point 3?

       • If you really struggle with self-worth - and perhaps have for a long time, before the HPPD took effect - could you do anything to work on this, like finding a therapist, trying even one self-loving metta meditation practice, or generally working on your baseline anxiety (point 5)?
         
         

     • Is there anything you could do to reduce your self-consciousness?

       • Could you introduce yourself to someone you’ve wanted to speak to or make any first move in making a new friend?

       • Could you do anything spontaneous or outside your comfort zone?
         
         

     • Is there anything you could do to listen less to the negative voice in your head?

       • Could you spare any time - perhaps even five minutes a week! - to write down our ‘automatic thoughts’, or those negative thoughts that come into your head in relation to HPPD in a worksheet?

       • Do you notice that these negative thoughts occur in any particular environments - for instance, at work, school, home with family, where there might be a context for the HPPD and its associations to express themselves?

       • Could you spend any time to work out why these environments and triggers may have these effects, and anything you could do after reflecting on them (whether you need to change your environment, adjust to your triggers, contemplate the meaning and possible changes required in your relationships, etc.)?
         
         

   • Evidence from psychotherapy suggests that dealing with these negative thoughts and promoting relaxation and calm can reduce both anxiety and the direct symptoms of HPPD.
     
     

7. Is there anything, however small, you could be doing more - or less of - to serve others more?

   • HPPD can be an incredibly isolating experience. It might feel like you’re living in a totally different world (although, as you may recall from the misinformation section above, this isn’t necessarily the case!). This is a point of overlap with many mental health conditions like depression and anxiety, which can be driven by a gnawing sense of obsession with one’s perceived flaws and imperfections.

   • Rather than starting from a default position of, ‘How will this affect me? How am I appearing flawed in this situation? How is my HPPD destroying me right now?’, would it be possible to start from a position of ‘you, everyone else and the world’?

The Mountain Summit

If you decide to put in the work, the process of recovering from HPPD could change your life

This is fine, Ed, but I notice you haven’t mentioned psychiatric drugs or doctors’ visits yet.

First, wait for part three! I will also cover the issue of whether you can continue taking drugs in another blog.

Second, I believe that working on growing in all these dimensions may prove very helpful, and even prevent the need for visiting the doctor. You may be surprised at how much personal growth working on your HPPD recovery manages to foster.

Remember, have courage and take time to breathe!