When the Party’s Over-a case of HPPD

Marcel was 25 years old, living and working in Manhattan. The son of Algerian immigrants, Marcel had grown up in a suburb of Boston. Three years after his graduation from a small, private college in New England he was employed by a major communications firm. The company hosted a retreat at a hotel, consisting of structured group activities during the day and impromptu partying at night. A co-worker offered Marcel ecstasy, and he figured “why not?” He had taken psilocybin, also called “magic mushrooms” twice in the past. Three hours later Marcel found himself in the emergency room, unable to see. The ER physician was at a loss of what to do and simply had Marcel stay in the hospital for observation. Fortunately, the blindness resolved in a few hours, and Marcel was sent home. In the 20 years following the incident, however, some of the symptoms have persisted.

Now age 45, Marcel currently suffers from near constant anxiety. He dislikes going out, preferring to stay at home with dim lighting since visual stimuli are simply far too intense. A visit to an optometrist could not confirm any physical reason for his problems. When asked about his symptoms Marcel remarked, “I see what appear to be floaters in my vision which follow a predictable pattern when I move my eyes. It's like semi-translucent dark swirls, almost like seeing heat coming off a car hood in summer. Afterimages of light linger longer than they should. It seems as though the left side is worse than my right side. There is also a link to stress when seeing this phenomenon, which seems to increase visual, which feeds into the anxiety portion of this condition.”

Drinking makes symptoms worse, so Marcel refrains from alcohol. Although the visual symptoms are the most troubling, he also suffers from tinnitus. Visits to a variety of physicians, ranging from primary care to neurologists, resulted only in more confusion. Marcel noted that the doctors seemed frustrated. Ultimately, Marcel began to do his own research, finding one of the few specialists in hallucinogen persisting perception disorder (HPPD), a condition that is recognized in the DSM-5. According to a survey study, about 4% of recreational drug users experience HPPD-like symptoms.¹

The physician confirmed that Marcel’s symptoms are characteristic of HPPD, which can be caused by a variety of drugs, including LSD, ecstasy, psilocybin, and cannabis. He prescribed Sinemet (carbidopa-levodopa) and then later tried Wellbutrin (bupropion). Although some individuals with HPPD benefit from these medications, they had no effect on Marcel. There is no approved treatment for HPPD, so all prescribed drugs are used off-label. He also received Prozac (fluoxetine) at one point, which according to Marcel, “didn’t make a dent.”

Dr. Henry Abraham of the Department of Psychiatry, Tufts Medical School, has researched and treated the condition for many years.² He is considered an expert in this field. He discussed HPPD and its treatment in an interview with Neurology Times. Dr. Abraham noted “there’s a tremendous lack of understanding of this condition and a tremendous lack of awareness.” He and colleagues have discovered several things about the little-studied disorder, including that it indeed has a specific neurobiological basis, characterized by occipital disinhibition and increased coherence when the eyes are closed.³ Coherence refers to hypersynchrony of brain waves.

Abraham has also found that medications that increase dopamine activity can help. He recently noted that about a third of 20 patients treated with Sinemet and tolcapone showed improvement in HPPD symptoms. Each patient served as his own control, but the study was not blinded or randomized, limiting the certainty of the finding.⁴ He speculates that these agents, which increase dopamine activity, “facilitate the focusing, increase pre-pulse inhibition, and filter out visual noise.”

Unfortunately, the condition can be misdiagnosed as schizophrenia, with negative consequences for patients. According to Abraham, “HPPD patients often have been given dopamine blockers which makes the condition worse…it anything they’re traumatized by the healthcare system rather than helped by it.”⁵

Greater recognition and ruling out other conditions is criticalas a first step, according to Abraham. This includes first considering tumors, multiple sclerosis, temporal lobe epilepsy, Lyme disease, and other chronic central nervous system infections. Barriers to treatment include a lack of recognition of the condition, and stigma against those who have inflicted neurological damage to themselves, even if unwillingly. There is also a feeling of helplessness among some physicians that HPPD is untreatable and irreversible.

According to Abraham about half of those with HPPD will fully recover over five years. In addition, treating the comorbidities can actually help alleviate the core HPPD symptoms, since anxiety and depression appear to trigger the hallucinations. Benzodiazepines “can be helpful by reducing anxiety, which then decreases reactivity to environmental stimuli,” he noted. Clonazepam seems to be the most effective.⁶

He also advises non-medication approaches for those suffering from HPPD, specifically 1) incorporation of an activity that requires intense focus in one’s life and 2) psychotherapy. “HPPD is largely a peripheral visual system problem, so it helps to maintain a fovealized life,” advises Abraham. “Cultivate something that requires focus and attention.” He gave the example of a patient who became a martial arts expert, which greatly reduced, though did not eliminate, her HPPD symptoms. Although it has not yet been empirically studied for this use, cognitive behavioral therapy (CBT) may also help.

When asked whether or not his symptoms have gotten better over time, Marcel replied “it changes…better in some ways but worse in others. My images in the left eye have gotten worse. Tinnitus started years later.” Overall Marcel feels that his life would have been quite different if he hadn’t developed HPPD, and wishes more professionals would take an interest in HPPD, noting “the future is lacking any concrete hope without research. That feeling is universal among those who have it.”

Hopefully, greater awareness of HPPD can lead both to prevention and effective treatment of this greatly unrecognized medical problem.

Names and details regarding Marcel have been changed to protect anonymity.

References:

1. Baggott MJ, et al. Abnormal visual experiences in individuals with histories of hallucinogen use: a web-based questionnaire. Drug Alcohol Depend. 2011 Mar 1;114(1):61-67.

2. Abraham HD. When the trip doesn’t end. The Psychologist. Sept 2014. https://thepsychologist.bps.org.uk/volume-27/edition-9/when-trip-doesnt-end

3. Abraham HD, Duffy FH. EEG coherence in post-LSD visual hallucinations. Psychiatry Res. 2001 Oct 1;107(3):151-163.

4. Abraham HD. Catechol-O-methyl transferase inhibition reduces symptoms of hallucinogen persisting perception disorder. Annual Meeting of the Biological Psychiatry Society, 2012.

5. Abraham HD, Mamen A. LSD-like panic from risperidone in post-LSD visual disorder. J Clin Psychopharmacol. 1996 Jun;16(3):238-241.

6. Lerner AG, et al. Clonazepam treatment of lysergic acid diethylamide-induced hallucinogen persisting perception disorder with anxiety features. Int Clin Psychopharmacol. 2003 Mar;18(2):101-105.