I hope you are all as well as can be.
It's been a long time since I posted. This is largely because my HPPD does not affect me anymore. I still have visual distortions but I no longer have any other symptoms that I attribute to HPPD (I feel anxious at times and feel lethargic at others but I do not feel that I can relate that to my HPPD; it's just part of my experience).
I have read many posts of this nature on the board and largely ignored them, but with my own experience to offer, I think it is important to reiterate the psychological aspect one brings to HPPD. Put simply, a huge step in my own recovery was psychological. In other words, what I thought needed to be resolved neurologically, actually turned out to be psychological in nature. Before I go any further, let me make very clear that I am in no way suggesting that HPPD is purely psychological or imaginary. It is most definitely neurophysiological, and believe me, I really suffered like the rest of you. There were times when simply physiologically I was unfit and incapable of exerting any kind of cognitive control over what was going on.
Much of recovery is just-a function of time. This means waiting for your brain to start mending itself. However, we may then feed our own psychological baggage into this process, and that can halt or severely impede the recovery process. An example of this was my own obsession with these forums as I tried to find ways of treating/curing HPPD whilst also spending lots of money on supplements. If you find these things helpful, then do them by all means. However in my opinion now, as someone who tried just about every supplement going, I think that is all a waste of time and money. I think one might obtain much more relief of symptoms from an appropriate form of evidence-based psychotherapy such as cognitive-behavioural therapy (CBT). or cognitive-analytic therapy (CAT). What seems to help is a therapy that provides both insight as well as an explanatory model for showing how HPPD symptoms link to other life events.
I would go as far as saying I had a form of OCD. It is not surprising that when one's perceptual system is uncontrollably altered, one tries to find ways of controlling the situation, or indeed other unrelated aspects of their life. Loss of control is a common psychological stressor. The problem is when one develops coping responses that are maladaptive. In my opinion, spending lots of money on supplements and trying to obsessively control my condition through research (when I have no such qualifications) was a maladaptive coping response. Don't forget that OCD is a neuro-physiologically based anxiety disorder, and the compulsions are symptoms of anxiety.
The big revelation to me, though, was this. A truly fantastic psychologist came into my family life as my mother’s new partner. He knew about HPPD and believed me. He also knew and recognised it as a neurological condition. But, he offered me ways of coping with it and tackling it psychologically. We got into my family history a bit. I have always had a problematic relationship with my father. What we eventually got around to was that the HPPD, my visual distortions, had become associated with this.
Painful emotional memories stored in the hippocampus, a part of the brain’s limbic system, can become closely associated. Opening one “misery memory” can open a whole directory, as it were, of other “misery memories”. Alleviating ‘Misery memory number 1” (e.g. my relationship with my father) may have alleviated an associated “Misery memory number 2 “(HPPD phenomena). And why might these memories (and not others) be triggered? I suggest that the common factor was that in neither situation could I find a solution and that I felt helpless and traumatised by my own impotence. I couldn’t fix my father’s irrational beliefs and behaviours -despite my best efforts, and I couldn’t fix the HPPD - despite my best efforts.
What triggered my HPPD was taking lots of psychedelics at a time when I was undergoing a year of severe emotional issues due to, as I believed at the time, breaking up with my first girlfriend. But that was not actually why I 'went off the rails' for a year - that's just what I thought. I went to therapy during this time (with a totally unrelated psychologist to the one mentioned before), thinking all my issues were to do with breaking up with my girlfriend; and this clever psychologist got me talking about my Dad, and in relating a story to her about him, my body welled up with emotion and I shed floods of tears. I had a huge emotional cathartic release after realising that everything I was feeling was to do with my father. I felt one hell of a lot better after this; it was a profound epiphany, and I just accepted it and made what I could out of the troubled relationship I had with him. However, I still carried some issues with me, which I thought were all to do with my HPPD, but which I now believe to be connected with this aspect of my life.
My HPPD visuals were to a large extent emblematic of my troubled relationship with my father. Once a reliable father-figure (who was also a sympathetic and empirically grounded “no BS” psychologist) entered my life, much of my HPPD went away. There were still some visual distortions, but there was clinically significant improvement.
So in my case, there is a clear link between my HPPD and my relationship with my father. My girlfriend had broken up with me largely due to my then aggressive nature which I thought I had inherited from my father. I blamed my father for this when I was going off the rails and felt that it was all his fault. That's when I started taking drugs; that's when I got HPPD. When my emotional issues regarding my father were sorted out, I was fully recovered.
The proposition here is that I actually had made enough of a recovery to live 'normally' quite a while ago, but I was bringing my own emotional baggage from elsewhere and pinning it on my HPPD - and it was all this emotional baggage that was making me feel depressed, lethargic, anxious and more. It wasn't the visuals / the HPPD that were doing this. The visuals represented this particular emotional problem, so taking notice of them triggered other emotional problems. And because the visuals are omnipresent, life became a massive struggle. I think this is also why people report so many relapses/modulations with HPPD.
Although my visual disturbances are quite bad now, indeed worse than they have been at other times, I am cognitively and emotionally much improved. I recall that when my interpersonal relationships were good, my HPPD phenomena were much improved too.
We all know that stress / other issues in life make the situation worse. But we think of this in the short term. I wonder how many people that have chronic issues with their HPPD have had a good look into their life histories. I wonder if for many sufferers whether that is what the issue is and whether the HPPD is the scapegoat; something that triggers suffering? If someone has big emotional issues, how can they expect to cope with a neurological disorder?
What am I saying then? I am saying that one should stop considering everything as an HPPD symptom - and try to have a very deep look at one's life - one's upbringing, education and other life experiences.- preferably with professional help. It is worth trying to see if much of one’s HPPD symptom- complex can be resolved internally, or by mending or coming to terms with these other things. If you know you have big unresolved family problems or stuff from your childhood, you can be almost sure that it is probably a large aspect of your not feeling well. At the very least, anyone suffering from HPPD should be aware of what the different forms of psychotherapy are, how they work and what they can do to alleviate or help manage HPPD symptoms.
Finding a good and relevant form of psychotherapy can be really difficult, which is why so many people dismiss it. The only thing I can say is that good and appropriately qualified psychologists and psychotherapists are out there and could help you to change your life. Also, it can take quite some time and effort before you see results, but it is worth it; so stick with it.
Here are a couple more examples from my own life. I have a neighbour who is ill with ME, and his illness very much defines him and how he interacts with other people. He uses his illness as a form of interpersonal currency and gets something from people feeling sorry for him. He hardly leaves the house, is hyper-vigiliant (a little noise and he is worried). When one of our windows is open, he thinks someone is burgling our house. He is basically, very anxious, and also brings other psychological crap to the table; such as the neighbours having to be quiet when he has his afternoon nap.
In this case, there is loads going on psychologically. If he were mindful of this, perhaps he would feel better. Or, at very least it would be useful for him to see that his hyper-vigilance / anxiety / attention-seeking behaviour is maladaptive and that he uses his condition to create more issues for himself.
Another example is a friend of mine with ADHD. He, I have no doubt, needs medication to function properly. He attests to how much the medication helps him. But despite this, he dismisses CBT as well as other psychological approaches. He just relies on the medication, but then forgets that like anyone else, despite having a condition, he has to be mindful about his life and make a conscious effort to change his behaviours. His approach is very much just, “I take the pills and then they make everything work”. But they don't make everything work, because he doesn't try to organise himself, or realise that behaviour is not just controlled my medication.
In the same way, because we have visual distortions and other difficult symptoms, we still need ways of coping. Some of these have to be psychological. Mindfulness meditation is probably the best thing you can do for this. Practising 'witnessing' the visuals and not perceiving them as negative i.e de-conditioning yourself from seeing them as negative, is crucial. This means that the negative association with the stimulus is broken. Hypnosis can also be very useful for ‘de-conditioning’.
In summary, don't let your illness define you and don't let yourself make excuses for not taking control of your life in adaptive ways i.e "There is no point seeking psychological help, because this is a neurological problem and it will not help".
Also remember that everyone experiences changes in emotions such as anxiety and depression transiently. These mood shifts are are part of normal living experience. It is so important to speak to people who feel well physically and emotionally and ask them how they are doing. You will soon see that there is always someone in this clinically normal population who is experiencing something negative. It may not be anywhere near as bad as how you feel, but it is an important reminder that you are not the only one, and is a helpful way to get out of your own head. An example from my own life is that when my lethargy had gotten a lot better, I still thought for ages that something unusual was going on but then realised that lots of people my age were sleeping/feeling groggy as much or more than I was!
I think learning mindfulness and really being aware of one's maladapative coping responses is such an important thing for managing this condition. The term has negative connotations because it has become popularised and has been appropriated by the self-help industry/capitalist agenda. But seriously, it could save your life. Mindfulness is much deeper than meditation. Meditation has its place, but living mindfully is the key.
Living mindfully is a skill that requires the discipline of the self observing self-experiences dispassionately and without judgment. When we live mindfully, we are aware that our thoughts are mere reflections of reality; some more accurate than others. When we live mindlessly, we “con-fuse” thinking and reality. Our thoughts can really spook us. By contrast, when we “de-fuse”, we are mindful of the fact that our thoughts are not reality; we separate thinking from reality.
In addition, fighting HPPD will make it worse. Nodding to it non-judgmentally when it enters consciousness without trying to banish it will, paradoxically, improve things.
Let's remember as well that ultimately, underlying psychology is physiology. So improving your psychological health is also improving your physiological health. They are different aspects of the same thing.
I hope this doesn't come across as cynical or negative in anyway. I mean this all in the most positive light as I believe taking this on board can speed up recovery. I would be interested to hear your thoughts/experiences of a similar nature.