Cluster headaches: improving access to effective treatments
- About cluster headaches
- Current medical options
- Alternative treatments with strong evidence for effectiveness
- The ethical need to remove legal obstacles to access
- OPIS strategy, advocacy tools and campaigns
- References and resources
About cluster headaches
Cluster headaches, sometimes referred to as Horton's syndrome and informally as suicide headaches, are a form of trigeminal autonomic cephalalgia and have been recognised as one of the most excruciating pains known to medicine. Unilateral and centred on one eye, the agony they cause is often compared to having a red hot ice pick driven though the eye into the brain, and sufferers are reported to have suicide rates about 20x the average. The colloquial term "headache" strongly misrepresents the extreme severity of the condition.
Attacks typically last one hour, with a usual range from 15 minutes to 3 hours, and they can repeat from once every second day to several times a day, even as often as 8-10 times in a day. Patients are often woken up several times during the night by attacks, and they go to extremes, including banging their head against the wall and punching their head, to try to distract themselves from the severe pain. About 85% of patients have episodic clusters lasting 1-3 months, occurring once or twice a year at the same time of year, during which they have daily recurrences at the frequency mentioned; the other 15% have chronic clusters that can last for years, often with multiple attacks per day and without a single day's break. Cluster headaches affect about 0.1% of the total population at some point, though one review puts the figure at 0.2-0.3%, meaning that approximately 8-20 million people globally will suffer from cluster headaches.
Current medical options
Current medical treatments to prevent and abort cluster headaches include prescription drugs, high-flow oxygen and electrical stimulation of the vagus nerve, and they can all bring relief. However, no treatment is universally effective. For example:
- Verapamil, used to prevent attacks, is only moderately effective, and it can have cardiovascular side effects.
- Prednisone can be very effective in preventing attacks, even more so than Verapamil, but because of the serious side effects of taking oral steroids, it is usually only prescribed for about two weeks at a time, and attacks typically recur once it is stopped.
- Sumatriptan is one of the most rapid-acting and effective means to abort attacks when injected under the skin, but it doesn't always reduce the pain sufficiently, and as it can also have cardiovascular side effects, there are limits to how frequently it can be used (typically just twice a day), and therefore not every attack can be safely treated. Furthermore, the more frequently a medication is taken to abort attacks, the more likely it is that "rebound" attacks will occur.
- High-flow oxygen delivered through a non-rebreather mask can be highly effective and is safe, though it can take 15 minutes until it works, not all patients respond, and having an oxygen delivery device constantly available presents logistical constraints.
- A recently approved antibody-based drug, Emgality, offers a new means to significantly reduce the frequency of attacks in many patients, though it does not abort them.
Some of these treatments are costly and may therefore not be available to all patients, especially if not covered by health insurance. In addition to the limits to current therapies, cluster headaches are typically misdiagnosed, and it can be several years before a patient is correctly diagnosed and prescribed appropriate treatment.
Alternative treatments with strong evidence for effectiveness
It has been observed that several drugs belonging to the indoleamine chemical family – including psilocybin (the psychoactive component of "magic mushrooms"), LSD and DMT (N,N-dimethyltryptamine, the psychoactive component of ayahuasca) – can be dramatically effective in aborting attacks and, at least for the first two (for which there is more extensive data), aborting and preventing cluster episodes, in the majority of patients. The evidence comes from a large number of anecdotes from users, desperate to find effective treatments, and more systematic studies of online fora, surveys and interviews (see reference section below). One study found that both psilocybin and LSD provided >70% of those who tried them with at least moderate protection from attacks, and complete preventative efficacy in 40% of cases – greater than that reported for any other conventional medication. Several participants reported that a single dose of psilocybin or LSD prevented attacks, shortened/aborted a cluster period, or induced remission from chronic cluster headache. According to other reports (ref 1, ref 2), inhaled DMT can abort an attack in as little as 3-5 seconds.
There are a few clinical studies currently underway with psilocybin (ref 1, ref 2) and LSD (ref) to treat cluster headaches. Aside from their efficacy, these drugs might be safer to use than existing treatments, because of their inherent properties and because they do not need to be used as often. Indeed, a recent Phase I clinical trial on psilocybin found no adverse effects. These drugs also offer the potential to markedly reduce the cost of treatment.
Interestingly, the hallucinogenic properties of these drugs seem not to be required for their therapeutic effect: sub-hallucinogenic doses of psilocybin and LSD have been found to be effective for aborting and preventing cluster headaches in some patients, although others required larger doses. Furthermore, a non-hallucinogenic analogue of LSD, 2-bromo-LSD (BOL-148), appeared to have similar efficacy to LSD in a small-scale clinical trial. (As it is patent-protected and expensive to manufacture, it appears to be currently unavailable for use.) With DMT there is anecdotal evidence that sub-hallucinogenic doses (e.g. 3 mg) can abort attacks in some people, while in others, "breakthrough" doses of 20-30 mg may be needed.
Another related chemical with highly promising evidence for effectiveness in aborting and preventing attacks, that is only mildly hallucinogenic, and that can be legally purchased "for research purposes" in some jurisdictions, is 5-MeO-DALT. (Note that this is not the same chemical as 5-MeO-DMT, which is powerfully hallucinogenic.) There is also evidence that LSA (lysergic acid amide) can be effective, which is contained in certain commercially available seeds, though reports of side effects suggest it should be used with caution.
In addition to their usefulness for cluster headaches, there is evidence that some of the drugs mentioned here, such as psilocybin, can also be very effective in treating migraines, which of course are also highly debilitating. A clinical trial has already yielded evidence for efficacy in reducing migraine frequency.
There are additional treatments that many patients find to be effective. In particular:
- Taurine-containing energy drinks are reported to bring relief when drunk quickly when an attack starts.
- A specific high-dosage vitamin D3 regimen has been found to be highly effective in preventing attacks - details can be found here. (Note that vegan sources of vitamin D3 and fish-free omega-3s can be used.)
See the References and resources section below for more detailed information.
The ethical need to remove legal obstacles to access
The severe legal restrictions on the possession and use of most of these drugs complicate research and development and limit their availability to cluster headache patients. Even 5-MeO-DALT, which is only mildly hallucinogenic, has been subjected to similar restrictions in some jurisdictions. Unsurprisingly, most health services make no mention of the potential of these drugs, despite their apparent effectiveness compared to approved treatments. Increasing numbers of clinical trials on psilocybin, LSD and MDMA for the relief of post-traumatic stress disorder (PTSD) and depression, and the trend towards decriminalisation/legalisation of marijuana, are de-stigmatising the use of mind-altering substances. But such stigmas remain, and are probably a significant reason why more politicians are not yet prepared to take a strong stance to facilitate their therapeutic use.
It is nonetheless an ethical imperative that patients in severe or extreme pain be able to access and try the most effective treatments available. When governments restrict such access, compel patients to break the law and risk arrest and criminal prosecution, or impede the development of such treatments out of excessive caution, their policies are not aligned with their ethical responsibilities. Of course, as is the case with access to opioids, a balanced approach is necessary to prevent abuse, and care must be taken to ensure that a drug does not actually cause more harm than it relieves. However, in the case of cluster headaches, there is currently no such balance, and the restrictions in place allow extreme suffering to persist that could, in fact, be prevented.
OPIS advocates that people suffering from cluster headaches should be able to access the most effective treatments known.
OPIS strategy, advocacy tools and campaigns
Our approach includes:
- Raising awareness among physicians worldwide to help reduce time to diagnosis
- Communicating about cluster headaches and evidence for effective treatments
- Providing useful information to patients worldwide
- Advocating for changes in legislation to reduce legal barriers to accessing effective treatments
- Supporting efforts to develop promising therapies
OPIS publications and videos:
- In November 2020 we released a policy paper, co-signed by several prominent neurologists, ethicists and other experts, titled Legalising Access to Psilocybin to End the Agony of Cluster Headaches
- To accompany the policy paper, we produced a 2-minute animated video to vividly convey the reality of cluster headaches and the urgent need to remove legal barriers to effective medication
- Post by Jonathan Leighton on the blog of Journal of Medical Ethics, November 2020, explaining the issue: Removing the legal barriers to treating the excruciating pain of cluster headaches
- Presentation by Jonathan Leighton from June 2020 describing cluster headaches and our work to improve access to effective treatments: Relieving the Pain of Cluster Headaches
- OPIS webinar from June 2022 featuring two patients with SUNCT and SUNA, extremely painful neurological conditions with similarities to cluster headaches, one of whom had dramatic success with LSD and ayahuasca.
- See also this front-page story about one of these patients, mentioning OPIS, in Swiss daily 20 Minutes.
We have been communicating the policy paper and video to politicians, advocacy groups, neurological associations and experts, with the goal of improving medical access to psilocybin and related substances, and ensuring that cluster headache patients can legally acquire and use these substances for therapeutic purposes.
OPIS is collaborating with several cluster headache patient organisations and groups, including Clusterbusters, Cluster Headache Community, Finnish Horton Association, with whom we are pressing for Nobism and Australia New Zealand Cluster Headache Support. We also collaborate with the International Drug Policy Consortium (IDPC), the UK-based nonpartisan advocacy organisation Conservative Drug Policy Reform Group (CDPRG), International Doctors for Healthier Drug Policies (IDHDP) and TheraPsil, with whom we have a partnership to facilitate medical access to psilocybin for cluster headache patients in Canada.
Please contact us if you would like to collaborate or support our efforts in any way, or let us know if you found any of this information helpful. We are grateful for donations to support our advocacy work.
Important note and disclaimer: The information supplied here does not constitute official medical advice. We strongly encourage anyone contemplating use of any potential therapies mentioned here to make informed decisions and to educate themselves, including about the possible experiences that may be had and about any risks associated with the legal status in their jurisdiction. Inhaling DMT in particular can lead to powerful experiences that could be traumatic to the uninitiated. It is especially important to be accompanied by someone trusted, and not to wait until the onset of a cluster headache for any trials.
References and resources
General information about cluster headaches
- National Migraine Centre Cluster Headache Fact Sheet
- Ashley Hattle, Cluster Headaches: A Guide to Surviving One of the Most Painful Conditions Known to Man
- J. Fletcher (2016), "My Experience with this Deadly Situation"
- Videos of people have cluster headache attacks (warning: these make for difficult viewing):
- 4-minute documentary produced by the Finnish Horton Association for Cluster Headache Awareness Day, 21 March 2020
- VICE article: Cluster Headaches Are Way Worse Than Migraines
Support and advocacy organisations and communities
- Clusterbusters, a US-based patient advocacy and support group that provides resources, including pages on various treatment options, general information on treating and preventing cluster headaches with psychedelics like psilocybin and LSD, and more detailed information on how to "bust" and prevent cycles with psychedelics using the dosing method
- Cluster Headache Community, a friendly and supportive Facebook group that also provides a collection of files with information on various treatment options
- r/clusterheads, a reddit community for cluster headache sufferers
- OUCH - Organisation for the Understanding of Cluster Headache, a helpful UK-based support group that, however, does not openly advocate for the development of the drugs mentioned here
- Nobism, an initiative to allow cluster headache patients to collect data on their cluster headaches through an app and have it analysed, to better determine which treatments work for them
Academic papers, talks and posters about the use of psychedelics to treat cluster headaches
- R. Andrew Sewell et al. (2006), Response of cluster headache to psilocybin and LSD (a paper based on interviews with cluster headache sufferers)
- Emmanuelle A. D. Schindler et al. (2015), Indoleamine Hallucinogens in Cluster Headache: Results of the Clusterbusters Medication Use Survey (the full text is not freely available online; adaptation of one figure showing the success rates of different substances in a preventative capacity can be seen here; note that some were only tried by a very low % of patients)
- Martin Andersson et al. (2017), Psychoactive substances as a last resort—a qualitative study of self-treatment of migraine and cluster headaches
- Talk by Bob Wold, founder of Clusterbusters (17 June 2013): Treating Cluster Headaches with Psychedelics
- Talk by Prof. Torsten Passie of Harvard Medical School and Hannover Medical School (19 April 2013): The Use of LSD, Psilocybin, and Bromo-LSD for the Treatment of Cluster Headaches
- Mitchell D. Post (2014), Treatment of Cluster Headache Symptoms using 5-MeO-DALT (full text here)
- Mitchell D. Post (2015), Cluster Headache Patient Survey: 5-MeO-DALT (full text here)
- Presentation by Mitchell D. Post on 5-MeO-DALT and the importance of citizen science for cluster headache patients (2015): Cluster Headache & Citizen Science
- Emmanuelle A. D. Schindler and Christopher Gottschalk (2019), Cluster Headache Preventive Therapies
- R. Andrew Sewell et al. (2008), Response of cluster headache to self-administration of seeds containing lysergic acid amide (LSA)
- Brandt R.B. et al. (2020), Pharmacotherapy for Cluster Headache
- Peter Batcheller (2014), A Survey of Cluster Headache (CH) Sufferers Using Vitamin D3 as a CH Preventative
Articles and posts about the use of psychedelics to treat cluster headaches
- Daily Beast article: Longtime Sufferers of Cluster Headaches Find Relief in Psychedelics
- VICE article: How Psychedelics Helped Me Deal with Excruciating Cluster Headaches
- Zamnesia blog: Combating Cluster Headaches With Tryptamines
- The Third Wave article: Could Psychedelics Cure Cluster Headaches?
- Psychedelic Times article: When Headaches Won’t Stop: Why Some People Are Choosing DMT and Ayahuasca to Treat Migraines (mentions cluster headaches as well)
- Cluster Headache Frequency Follows a Long-Tail Distribution, a post in the Effective Altruism Forum based on data from 270 participants of an online survey, by Andrés Goméz Emilsson, consciousness researcher at the Qualia Research Institute (QRI) and member of the OPIS Advisory Board
- Treating Cluster Headaches Using N,N-DMT and Other Tryptamines, a post in the Effective Altruism Forum about different approaches to making DMT available to treat cluster headaches, including both philanthropic and investor-based routes, by Quintin Frerichs of the Qualia Research Institute (QRI)
- Hell Must Be Destroyed, a whimsical essay with a serious message about cluster headaches and the importance of reducing suffering, by Andrés Goméz Emilsson
- I Took Magic Mushrooms To Treat The World’s Worst Headaches... And Got Arrested For It, an article by Jeremy Tucker about the dramatic relief he obtained with psilocybin mushrooms and his struggles with the justice system when they were found in his car. (Excerpts: "The pain was gone; the attack, aborted." "The mushrooms hadn’t made me feel poisoned or sick... So complete was the relief it seemed mushrooms actually were cluster headache’s antidote... I wanted to stop traffic and shout magic mushrooms cure cluster headaches! at the top of my lungs.")
- OPIS: Cluster Headaches and Psychedelics, interview with Jonathan Leighton, Executive Director of OPIS, in Truffle Report, 19 December 2020
- Erowid, a website providing detailed information on psychoactive substances
- How to Find Psychedelic Mushrooms, an article on the website of The Third Wave that provides some guidance to obtaining psilocybin mushrooms such as Psilocybe cubensis in jurisdictions where they have been decriminalised.
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Last updated 25 September 2022
Credit: Photo "Hell" by VasenkaPhotography used under CC BY 2.0 license