Criminally in Pain – When Politics Meets Medicine

Earlier this year I captured some thoughts on the plight of cluster headache sufferers and the broader issues raised by research, or rather the lack of research, into a particular drug. I’ve updated the original article with only a few changes, as unfortunately nothing much seems to have progressed….

While society vacillates over the role of controlled drugs in medicine, the devastating pain of cluster headache is driving some sufferers to the ‘magic’ of the psilocybin mushroom, turning them into lawbreakers of the highest order.

More Than A Headache

Imagine that for two or three months of every year you are taken out of your normal life and, for an hour each day, sharp metal spikes are driven into your brain via your eye socket – all with no anaesthetic!

The metal spikes may be dilating blood vessels pressing against the trigeminal nerve behind your ear, causing an acute, disabling, pain down one side of your head, but the analogy well describes cluster headache, a rare condition of devastating reality for around 10,000 UK sufferers.

Drugs give some control, but they don’t always work, and can carry serious side-effects. With only a partial solution to their plight, the self-labelled ‘cluster heads’ have become a highly motivated collective of self-helpers; electronically networked, and characterised by a willingness to try anything for some relief. This acceptance of risk, where the alternative is an untreated condition, has led some sufferers to experiment with unconventional substances, like the psilocybin found in ‘magic’ mushrooms that, apart from any incidental mind trip, have the major side-effect of leaving the experimenters at serious odds with the law.

Copyright All Rights Reserved EBC Jones 2008

Forbidden Research

The issues here parallel those of the more widely publicised medicinal cannabis controversy, and concern drugs that, despite their illegality, sufferers find effective. In this case, because the mushrooms contain the psychedelic neurotransmitters psilocybin and psilocin, consumption or open research is strictly forbidden in both the USA and Europe – detractors are threatened with harsh prison terms. Despite this, it looked in 2006 like some progress was forthcoming, with the publication by Harvard researchers Dr Andrew Sewell and Dr John Halpern, of survey results from 53 cluster sufferers who were also illicit users of psilocybin and LSD. The overall positive indicators from the study gave supporters hope that the way would now be clear for full, in-depth and approved, clinical trials – and ultimately legal prescription status for psilocybin. But even now in 2008, with the Federal Drug Administration (FDA) yet to approve the required clinical trials, it doesn’t look like psilocybin will any time soon be added to the palette of approved remedies; this despite the researchers’ recommendation for further work.

What Is Holding Things Up ?

The US researchers put it down to the over politicisation of the ‘War on Drugs‘ in that country. Politics and an inflexible policy approach do seem to be holding back the valid scientific study of psychedelics, in this case at least, with legitimate patients left as the real victims.

Until a more enlightened policy environment prevails, the best advice for cluster sufferers, who just cannot resist that next cup of mushroom tea, is to keep one bloodshot eye firmly on the door.

Postscript

One hopeful sign, albeit anecdotal from my own experience but consistent with some limited published studies, is the efficacy of Melatonin as a treatment. Melatonin is chemically related to psilocybin and serotonin, and is the drug used to ‘reset the body clock’ in countering jetlag. It’s certainly more legal than the fungal alternative, but is still a prescription drug in the UK (ironically it’s available over the counter in the USA). It only remains to say that if you suffer from CH or know of someone who does, the first course of action should always be to consult a doctor.

Find Out More

OUCH – Organisation for the Understanding of Cluster Headache

www.clusterheadaches.org.uk

www.clusterheadaches.com

Multidisciplinary Association for Psychedelic Studies (MAPS)

Also see: “The Effects Of Psilocybin And LSD On Cluster Headache: A Series Of 53 Cases.” Abstract.

Sewell, R. Andrew, M.D.; Halpern, John M., M.D. National Headache Foundation’s Annual Headache Research Summit. February, 2006.