I still have most of the same neurosensory symptoms today, to varying degrees. Worse, other drug interventions that I’ve tried have added to the symptom list over time. But I’ve been so uncomfortable that I had to try them.
I have windows of ease now, but not comfort. I function better, even with these overbearing distortions, and yet I feel my whole self locked away somewhere, buried under:
a bit of “visual snow” in my field of vision (like static)
intense sensitivity to bright lights (headlights, traffic lights and LEDs)
raging tinnitus (ringing in the ears/brain) which at times reduces when I’m engaged in an activity
hypersensitivity to the emotions of others, as well as news articles or TV shows
a constant level of medium-to-high irrational fear and anxiety, especially anticipatory anxiety (which I never had before)
depersonalization/derealization: an out-of-body feeling
pins and needles in my hands, feet, head, and face
I’m emotional in the mornings with an onslaught of intrusive thoughts
tension on the right side of my body, especially my neck
easily exhausted, due to the need to overwrite these symptoms in my consciousness
There’s the inventory. Symptoms that I’m trying to resolve and, when they flare up, simply accept.
And when you add that all up, doctors have suggested that it sounds a lot like any or all of the following. Forgive the info dump before I carry on with the story.
A chemical or medication-induced brain injury
Often called PWS/WS “persistent withdrawal syndrome,” “discontinuation syndrome” or HPPD, “hallucinogen persisting perception disorder”
How are these ideas related? Serotonergics (SSRIs/antidepressants) and hallucinogens — which also act on the serotonin network — negatively affect a small proportion of the population, sometimes in pretty dramatic and potentially life-altering ways (see “surviving antidepressants,” but be warned). The sleeping drug I took was serotonergic, and I’m not sure if it was the only offending agent. I just know the cause-and-effect of what happened to me with that drug in that moment. The symptoms of HPPD and WS look similar to the list above, but the expression of symptoms can vary from person to person.
These days, lots of folks are using hallucinogens, and not just recreationally. They are experimenting with them after some high-profile advocacy for their potential to “expand consciousness,” or “erase trauma.” In another story, a woman who overdosed on LSD believes that it cured her chronic pain from Lyme disease.
While HPPD refers to “hallucinogens,” catalysts can include “psychedelics, dissociatives, entactogens (like MDMA), THC, and SSRIs.” SSRIs are not hallucinogens, clearly, but produce a similar set of problems. All of these things have been around for a long time — and I can’t stress this enough — they’re often casually suggested by clinicians and practitioners of all kinds, especially to deal with trauma.
I don’t want to go too far down the rabbit hole of HPPD/WS, because it is terrifying, and all of the drug therapies have been a profoundly traumatizing chapter of this story, starting right from the initial prescription. Suffice it to say that chemical-induced feelings of doom and suicidality are relentless for HPPD/WS sufferers. It entraps them in a terrible hell.
It’s also very hard to know who is vulnerable. With respect to hallucinogens, there are claims that folks with underlying issues might be the most at risk, but paradoxically, and problematically, there are just as many flippant claims that hallucinogens are a panacea for those with mental health challenges. Try to make sense of that contradiction.
Some theorize that HPPD symptoms are partly due to the damage or dysfunction of GABA interneurons (which have an inhibitory effect), the hyperexcitability of glutamate receptors (which have an excitatory effect), and the induced hypersensitivity of the serotonin network.
Drugs to increase GABA, like clonazepam, and other drugs that reduce glutamate, are prescribed for folks with HPPD and WS. SSRIs are a terrible option for those with hallucinogen-induced HPPD, usually making it worse, but they’re also often the first thing prescribed by mystified health professionals.
It’s commonly thought that “reinstating” SSRIs can make WS symptoms disappear, but sometimes the body rejects just about any psychotropic medication after experiencing the hell of coming off of them.
There is likely a coming onslaught of folks, seemingly normal before their injury, who will get stuck in a bewildering loop of perceptual confusion, even from just one dose. It sounds absurd, and the incidence is not well-reported due to the way it mystifies doctors (and because there are entrenched interests), but if you listen to just a handful of folks, you’ll hear the same damn story time and time again.
SSRIs rapidly alter the brain’s fundamental architecture (after 3 hours). Hallucinogens do, too, by acting on serotonin receptors and the default mode network. And as the external world becomes more choatic and scary — from pandemics and inflation to war and climate change — more people will turn to drugs that promise to “erase” trauma.
What folks are really looking for is meaning and connection, a way to enhance neuroplasticity, and maybe some help dealing with life. This leads us to…
Emotional trauma stuck in the body (PTSD) / a nervous system imbalance
The trauma of deep isolation following a period of personal turmoil is undoubtedly an ingredient here, even though I’m not convinced it’s the main one due to the way the symptoms emerged during that moment. At this stage, however, I also carry the trauma of living in an unfamiliar body with perceptual distortions. Unless or until that eases or becomes normal, the trauma persists on a daily basis. It’s a vicious cycle.
Somatic emotions — emotions that are trapped in the body due to nervous system hyperarousal — can be released with a range of techniques and strategies. I’ve tried many of them and will outline their effectiveness for me in a future post.
My somatic therapist introduced me to Polyvagal theory (PVT). PVT, as coined by Dr. Stephen Porges and narrated by Deb Dana, offers a particularly promising theoretical framework to “rewire” your nervous system for safety and connection. We live in an electronically-mediated world where we’re attuned to perceiving life-or-death threats everywhere, and not just from the big threats listed above, but even from snippy texts, tweets, and emails. Difficult partners, difficult workplaces. Online dating. Everyone in the industrial world stands to benefit from the fundamental insight offered by polyvagal theory. It’s something our bodies understand at an intuitive level and are craving following years of electronic disembodiment.
It’s worth mentioning that one of the world’s leading experts on HPPD strongly believes that the brain’s systems are entirely intact following the “injury,” that there is no permanent brain damage, and that the brain’s perceptual filters need to be re-trained using somatic therapy techniques. Interesting, but sorta nauseating if you’re in the thick of the symptoms. More on that some other time.
Bacterial and parasitic infections (“Lyme”), perhaps influenced by exposure to serotonergics or other toxins
And now perhaps the most curious idea. Many functional medicine practitioners believe that contemporary humans are full of all kinds of junk whose consequences we’re ignoring: from heavy metals to bacteria, fungi, and parasites that feed off of a steady diet of nutrient-deficient food and drug cocktails. It isn’t well known, but Lyme, a bacterial infection, can produce neuropsychiatric symptoms that overlap with the ones I posted above.
What is Lyme? Lyme disease is caused primarily by the “borellia” strain of bacteria due to a tick bite, but there are almost always co-infections with bartonella and babesia, which makes it very hard to treat.
There is some indirect research to back up claims about the relationship between serotonergics and bacteria: antidepressants increase bacterial and fungal resistance (to antibiotics and antimicrobials, respectively), and seem to induce mutation and/or evolution of bacteria, as well as highly defensive behavioural patterns. Poultry exposed to SSRIs developed severe infections of E. coli. But there isn’t much research about what happens to humans, except that serotonergics have a massive impact on the gut microbiome, usually by inhibiting rather than inducing bacterial growth.
Anecdotally, though, it’s astonishing to hear how many people (who think they have HPPD or WS) discover that their symptoms ease or even disappear when they seek treatment for bacterial infections. The reason is plausible: SSRIs might be prescribed to folks suffering from Lyme due to the presentation of neuropsychiatric symptoms. And since the drugs aren’t dealing with the underlying cause, when people come off, they also believe the drug made their symptoms worse.
Tests for Lyme and associated co-infections are notoriously hit-or-miss. Treatment usually involves several long courses of antibiotics, and the relief is often temporary as the bacteria repopulate following a course of treatment. But I found a different therapy in Europe that makes exploring this option more compelling.
There we have it. Three theories, and an incalculable number of ideas to deal with them. Thanks for sticking with me as I lay this heavy foundation.
Just this week, I started to explore theory #3 more seriously after years of work on #1 and #2, so that’s what I’ll describe next.