On the Treatment of Cluster Headaches
Cluster headaches (AKA suicide headaches) are recognised as being amongst the most painful experiences known to man (Matharu and Goadsby, 2001). They derived their nickname from cases in history before treatment and diagnosis was possible, when sufferers had to be placed under observation for fear of suicide (Horton 1939), probably not just as a result of the physical pain but also from the psychological distress of knowing that the pain will return. It has been suggested that possibly the majority of cluster headache neurologists will have known patients who have committed suicide as a result of their condition (Green, 2013).
Unfortunately, since around mid-2012, I have suffered from the worst version of cluster headaches: the chronic version. I received my diagnosis in 2013 as trigeminal autonomic cephalalgia.
The good news is that after more than a year of suicidal thoughts, dozens of hopeless trips to various neurologists and doctors (most of whom genuinely had no idea how to diagnose my condition), and waking up to a pain that can’t really be put into words, I finally discovered a cure. The bad news however, is that the cure is not legal in most countries, worse still, it is not legal in the United Kingdom where I currently reside, and leading experts in the fields of neurology and medicine in this country are not willing to support a campaign for a reclassification of the substance (I will go into further details on this later).
This article will look in some detail at the substance known as psilocybin: one of the main compounds that is commonly found in the families of psychedelic (AKA. magic) mushrooms. I will explain how it works, why it works, why it’s more beneficial than existing pharmaceuticals, how it compares against current treatments and the ethics behind why its use should be permitted. I will do this by presenting both my personal case history as well as other data that I have collected to support this article.
[Revision 2]: Please note that I mention both psilocin as well as psilocybin. Don’t let this confuse you. Almost all psilocybin is converted to psilocin by the body after ingestion (see Psilocybin – Summary of knowledge and new perspectives (2013) – Section 3.
Before I go any further, I need to make a disclaimer: this article has been in the works for over a year, it is not to be interpreted as a suggestion that I am in any way endorsing the use of an illegal substance, nor that I am in possession of one; I will not be held liable for anyone else’s actions as a result of reading this article.
[Revision 1]: For cluster sufferers within the UK/EU who need a way around the legal aspect, you can fly to Spain (for under £100 return within three hours from London). Psilocybin for therapeutic use is not illegal there (see the law – select “Spain” from the country profile dropdown). If you want to visit Spain to consume magic mushrooms, that is your right to do so and you cannot be prosecuted for it.
[Revision 2]: You can also fly to Czech Republic or Netherlands, where the use of psilocybin is legal/decriminalised too.
Ethics and Overview
Psilocybin is a substance that has been shown by experts to be less harmful than alcohol. According to a publication in science journal The Lancet (Nutt et al, 2010), it is in fact the least harmful of all drugs :
David Nutt is the former chairman of the ACMD (Advisory Council on the Misuse of Drugs), who was fired by the government (Guardian, 2009), for the above publication, which suggested that alcohol was more dangerous than ecstasy, LSD and cannabis.
As you can see from the image, it is suggested that alcohol harms more people than any other dangerous substance. My own research supports the idea that it often leads to violent and uncontrollable behaviour, which can cause innocent third parties to get hurt or even killed. In 2013 there were more than 8,000 alcohol-related deaths in the United Kingdom, of which more than 400 were the direct result of mental and behavioural disorders caused by alcohol (Office for National Statistics, 2013 [see also: reference table 3 for specific data on causes of death]). In 2011-2012, there were over 1.2 million alcohol-related hospital admissions. Over 200,000 of these were due to mental and behavioural disorders caused by alcohol (Health and Social Care Information Centre – p48).
Prior to 2005, fresh magic mushrooms, on the other hand, were legal to possess and supply. There is no data on any official government statistics website or press website that gives a clear indication of how many hospital admissions and/or fatalities were the direct result of magic mushrooms. This could suggest that the data is either insignificant and/or inconclusive. If you can find any statistics on this from official sources, you can reach me at email@example.com and I will add them here for comparison in a later revision. In the meantime, my main point is that even the highest doses of magic mushrooms are far less likely to cause a problem in society when compared against even moderate levels of alcohol (supported by van Amsterdam et al, 2011).
There is little scientific evidence supporting the idea that magic mushrooms can cause any serious or lasting harm, however there is a whole heap of evidence that suggests its therapeutic use may be beneficial for more than just one medical condition.
Based on my own experience and research, the vast majority of pharmaceutically-approved treatments for cluster headaches actually poses a significantly higher threat to a person’s safety and well-being than psilocybin.
The use of anything other than psilocybin in my case would involve some element of suffering for me.
I have yet to come across a substance that can completely abort cluster cycles and prolong remission periods the way psilocybin can without any side effects.
Law and Political Discussions:
In the United Kingdom, magic mushrooms are a Class A substance that carry a penalty of up to 7 years in prison as well as an unlimited fine for possession alone. Production and distribution could lead to life in prison in addition to an unlimited fine (Drugs Penalties, GOV.UK).
In 2005, the government made a rushed decision to clarify the laws on psilocybin, reclassifying fresh magic mushrooms from “completely legal” to “Class A” – the same group as heroin. This decision was not scientifically supported and no evidence was presented to suggest that the use of magic mushrooms could be harmful.
Sir Michael Rawlins (Chairman of the ACMD): “I have no idea what was going through the minds of the group who put it in Class A in 1970 and 1971”. The Home Office has admitted that it has never conducted any research into psilocin use and that there is “no clear evidence of a link between psilocin use and acquisitive or other crime”.
Professor Blakemore: “If one could look at all the evidence for harm available now, including social harms, one would say [the classification of magic mushrooms] is wrong”.
Paul Flynn MP: “The policy appears to have been driven by something other than evidence” and warned that “other more dangerous mushrooms, not covered by the current law, could be substituted for those that are prohibited”.
In 2006, an independent technical report by RAND confirmed “National Statistics show that for deaths in which drug poisoning (listed on the death certificate) was the underlying cause of death, between 1993 and 2000 there was one death from magic mushrooms and 5,737 from heroin” and that “the lethal dose for humans is about one’s own body weight in mushrooms”. (The Evidence Base for the Classification of Drugs, 2006).
Public Discussions and Implications
One of the biggest and most challenging struggles I face (aside from cluster headaches), is talking to people about using magic mushrooms. Even hinting at the idea is an immediate justification for most people to pass judgement and criticism, and the majority of people in my experience are always very quick to judge when it comes to something they know little to nothing about. Ultracrepidarianism at its finest…
I’m not going to pretend that there is no recreational factor to psilocybin outside of its therapeutic benefits, but I can almost guarantee that if it were not for my cluster headaches, I would never have even thought about trying it. That being said, now that I have used (and continue to use) hallucinogens, I have to admit that my standpoint on drugs as a whole has changed completely. I’ve adopted the motto “don’t knock it till you know it” – and by knowing, I’m talking about really understanding something inside-out, and not just knowing a fact or two.
I think the focus on psilocybin should be less about whether or not it’s dangerous and more about whether or not it can be used responsibly. Of course it’s not going to go down well if you take 5g of dried mushrooms and look at pictures of monsters, but if you are in a relaxed and familiar environment where you can feel safe and calm, then a trip on magic mushrooms is probably one of the most incredible experience you could have. There is a sense of enlightenment, a sense of timelessness, a distancing from reality and (for me) a completely new perspective on the understanding of consciousness. I speak for a lot of people when I say that this can be both pleasant and rewarding.
Sadly the governing bodies of cluster communities like OUCH have chosen to shun me because they cannot open their minds to the idea that an illegal substance might be the answer that most of their followers are looking for. I could ultimately say that I don’t care and just do this all in secret, but I’d be lying, because I do care, and I know exactly what other sufferers are going through.
It doesn’t help that one of the leading experts on cluster headaches continues to reflect psilocybin in a negative light. I have spoken to Prof. Peter Goadsby a number of times (his team actually diagnosed me during a trial for the gammaCore device, which I later dropped out of – more details below). We discussed the use of psilocybin, as well as clarifying his position on the matter. What he has said in public over the years suggests that he does not condone the use of psilocybin; in 2005, he made the following statement to the Guardian:
“It’s possible that mushrooms have some useful effect but it’s far from proven. Cluster headaches are such a devastating problem that people will turn to anything that seems to work.”
Less than a year later, Dr Sewell’s study on the therapeutic use of psilocybin and LSD to treat cluster headaches was published. In the same year, Prof. Goadsby remarked the following in an interview by Nature.com:
“I think there are better things to test, there seems to be a large number of people who think it’s been useful to them, so it’s a reasonable thing to consider.”
Then in 2011, in an interview with Science Magazine, directly in response to Dr Sewell’s study:
“These are just a few patients in a completely unblinded study; you would certainly expect some placebo effect, still, this is an interesting study, and it certainly warrants further investigation.”
I’m not trying to bash the man, by all accounts he’s an extremely intelligent and humble person, he’s helped a lot of people and he’s widely recognised as one of the world’s leading experts on cluster headaches, in-fact I’ve referenced him more than once in this article alone. But it’s for precisely that reason, that without his full support, neither psilocybin nor LSD (nor any other classified substance) will ever see the light of legality in the UK for therapeutic use in the treatment of cluster headaches, and a part of me thinks that Prof. Goadsby is not completely oblivious to this.
Assuming that it did become legal to use psilocybin and/or LSD, Prof. Goadsby would probably lose a number of patients who would simply switch from using his prescribed treatments to self-medicating at home with a mushroom brew. It was only a year or so ago that the gammaCore was trialled by his team at UCL, a trial of which I was initially a part of but later withdrew from because I discovered psilocybin…
When I asked Prof. Goadsby if he would support a petition on the reclassification of psilocybin, his response was something along the lines of needing to “see more evidence that it works”, which wasn’t very helpful or encouraging to say the least.
International Clinical Research
For the last 2 years, I have gathered every publication that I could find relating to the therapeutic use of psilocybin. There are a number of studies that suggest it is effective in migraines, anxiety and depression, as well as cluster headaches. I have read that LSD also works but I have not been able to obtain it or try it for myself and so I can’t comment on this.
My specific focus for this article is on psilocybin/psilocin because that’s what has worked for me. LSD is extremely difficult to produce/obtain without clearly breaking the law, so I have only ever been able to try analogues of it, all of which did little to nothing for the cluster headaches. Analogues that I have tried include LSZ, AL-LAD, PARGY-LAD and 1P-LSD (none of these were illegal at the time of consumption but most are illegal as of 2015 in the UK).
Some of the data I have collected go back more than 10 years. In fact, one of the most important and significant studies was the aforementioned study published in 2006 in the American Academy of Neurology. This was not a placebo-controlled study, but as mentioned in the discussion:
“Participants were not blind to their treatment, raising the possibility of a placebo response. However, cluster headache is known to respond poorly to placebo; controlled trials have shown a placebo response of 0% to prophylactic medications such as verapamil, capsaicin, and melatonin, and less than 20% to abortive medications such as sumatriptan. Therefore, it seems unlikely that we would have found more than 50 cases of apparent response to psilocybin or LSD through placebo effects alone.”
In the above study, 53 cluster headache patients who made therapeutic use of psilocybin or lysergic acid diethylamide (LSD) were interviewed. 22 of 26 psilocybin users reported that psilocybin aborted attacks. 25 of 48 psilocybin users and 7 of 8 LSD users reported cluster period termination. 18 of 19 psilocybin users and 4 of 5 LSD users reported remission period extension:
Personal Research and Data
I have explored about a dozen forums and social media platforms from 2013-2015, recording individual reports of legitimate and successful therapeutic use of magic mushrooms. The result is a compilation of qualitative data and my final report reads this:
“From the 179 cases that I could find on the therapeutic use of psilocybin to treat a medical disorder, gathered from 11 different websites (including forums and social media outlets), around 93% (167) of these reported favourably, i.e., these people reflected that they had an overall positive and effective therapeutic experience, and that their condition was either cured or controlled through the use of psilocybin-containing mushrooms.”
The report was not limited to the effectiveness on cluster headaches but also included depression, anxiety and migraines, among others.
I have not published the above report because many of the sources for these data are not visible to the public without registration. Moreover, the vast majority of people from whom I collected these statistics were not aware of being participants in my own research, so it would be unethical for me to publish the report as a legitimate point of reference, further I don’t want to get into trouble and this is, after all, just a blog post. Please therefore consider this as more of a guide. If you are a cluster sufferer and you would like to submit your own qualitative report for my records, you can do so by emailing me at firstname.lastname@example.org.
Personal History and Diagnosis
In my experience, first-line treatment for cluster headaches include a preventative and an abortive. In my experience, preventatives most commonly prescribed include verapamil and various anticonvulsants, whilst abortives usually consist of either subcutaneous sumatriptan and/or high-flow oxygen. Other effective drugs include indomethacin, lithium and ergotamine.
My condition was initially misdiagnosed as trigeminal neuralgia, and this was before I saw my first neurologist. Treatment started with carbamazepine (200mg, twice daily), which was helpful to begin with but eventually became ineffective and the drowsiness, constipation and pitch changes were frustrating as well as unusual, so we changed to gabapentin (800mg, three times daily), this initially was quite effective too but also made me very drowsy. This too started to lose its effectiveness after a few weeks and at times I would take anything up to 6g of gabapentin per day. Although that did make me feel really good and euphoric, it wasn’t doing an awful lot for the cluster attacks, and I would still be waking up at 4am screaming. Plus I was riding around on a motorcycle at the time and this became a bit of a problem. Furthermore, it put a very sudden and definitive stop on my badminton training.
It was around this time that I was referred to the first neurologist who tested for trigeminal nerve defects and concluded nothing but ordered a scan. The scan came some months later and also returned nothing. By this point the pain was getting so bad that I started to do my own research, at that time into trigeminal neuralgia…
Within a few weeks of the first scan, the pain was so extreme that I had to seek emergency care at my local hospital after the attack had subsided. A duty neurologist from a different hospital recommended prednisolone (80mg for two days, then 60mg, then 40mg over the four days that followed). This was helpful and cleared up both the haemorrhaging in my eye as well as the daytime attacks within only a couple of days. The night-time clusters were still a problem though, and at this point I demanded to see a neurologist, which fortunately was organised within a few days, but only after outlining that I would rather commit suicide than to keep dealing with this.
The neurologist I got to see diagnosed the condition as trigeminal autonomic cephalalgia, cluster headaches at night with SUNCT-like symptoms during the day. He prescribed verapamil (80mg, three times daily), subcutaneous sumatriptan (6mg in saline, to abort the attacks) and sodium valproate (600 mg, twice daily). He also recommended high flow oxygen which I also tried for a short while but I found too difficult to administer during attacks.
From this point I pretty-much started to do my own research. The attacks were under some control but I was still suffering and there was no sign of any remission, attacks would stop at most for 4-5 days at a time, followed by 2-4 days of agony.
To put the pain levels into perspective, I have put together my own pain scale chart:
|1||mild, feels like a small stone or piece of dirt in the eye, difficult to ignore but easy to cope.|
|2||starting to hurt slightly, similar to touching the eye with chilli fingers.|
|3||frustrating and annoying, the pain is stronger and I constantly try to move my eyes and head around to try and weaken it – impossible to ignore at this point.|
|4||touching the face or around the eye makes things worse, at this point I’m usually incapacitated and can’t do much more than moan and stumble about.|
|5||very difficult to cope at this point, imagine taking your eye out and putting a few agitated hornets into the empty orbit – add salt for good measure.|
|6||you start to wonder “why me”, grabbing the bed, self-harming, pinching and scratching all over your body to try and stop the focus of pain from around the eye.|
|7||impossible to do anything other than scream and wiggle around, muscles start to tense up all over uncontrollably.|
|8||head-banging against floors/walls, screaming in agony, fear of death, fear of life, confusion, terror.|
|9||difficult to breathe, eyes are watering profusely, impossible to understand what’s going on, the only thing that exists is you and this pain.|
|10||impossible to put into words, there are no analogies that can describe this level of pain, the only thing you want at this point is death.|
I’ve experienced a level 10 three times before this article. Today I don’t let it get past a level 4 and usually I take action with psilocybin at the onset of level 1 or 2.
Whilst taking only NHS-prescribed medicines, I still had to cope with at least a level 5 on more than one occasion, and this was on top of all of the debilitating side effects. Yes, sumatriptan does abort the attacks within 15 minutes, but I would challenge anyone to try sitting through a level 5 for just 15 minutes, 3-4 days a week, every single week, sometimes more than twice a day (and bear in mind that sumatriptan should not be taken more than twice in any 24 hour period).
It’s not just the physical pain that gets to you, it’s the depression and the stress that makes committing suicide a lot more appealing. – Is it absurd yet to imagine that the therapeutic use of psilocybin would carry a prison sentence?
If it were not for the sumatriptan kicking in within 15 minutes, I’d have committed suicide after my first level 10, and it’s for precisely that reason that I was willing to try anything.
[Revision 1]: In response to an email from a reader: the point of sharing the fact that psilocybin has worked for me is not to try and justify my taking it, it’s to let people see that there is another option besides suffering, an option that anyone should have the right to consider. I genuinely do not believe that there is anyone out there who has experienced anything higher than a level 6 on my pain scale who would refuse to try psilocybin or LSD if they thought either of those had even the remotest possibility of working. It just wouldn’t happen. If you know this pain, you know how far you’d go to stop it, and until you’ve experienced what it’s like to suffer so much physical discomfort that you just want to die, it would be wholly inappropriate to make a judgement call on this.
The following data is compiled from a spreadsheet that I put together which contains all of my notes as well as attack frequency and treatments used. As a general average, the attacks lasted no more than an hour, generally only around 40-45 minutes. There were two types of attack: the night-time attacks, which would wake me from sleep around 3am, normally in a state beyond agony, and the daytime attacks, which were SUNCT-like in nature (SUNCT stands for Short-lasting Unilateral Neuralgiform headaches with Conjunctivitis and Tearing) – Dr Juana Marin thinks it may not be SUNCT, hence my use of SUNCT-like.
The data were recorded from the beginning of August 2012 to the end of May 2015, when this article was published. I have separated my notes and treatment into a table and recorded the frequency and severity of attacks into combo charts. The red lines and dots indicate the pain level* as per the scale above.
*The levels recorded in the charts reflect the highest level of pain experienced in any particular month.
|Aug||–||–||First signs of problems were long before this but this was when I started to pay more attention and take notes.|
|Sep||carbamazepine (400mg)||–||GP diagnosis: “trigminal neuralgia”.|
|Oct||carbamazepine (400mg)||–||Frustrated, problems getting worse, neurologist appointment booked and switched to gabapentin.|
|Nov||gabapentin (1.2g)||–||Some improvements and reduction in pain.|
|Dec||gabapentin (1.2g)||sumatriptan (50mg)||Saw a consultant neurologist in Windsor – Dr. Amit Batlar – sumatriptan tablets did not work but diagnosis was “trigeminal autonomic cephalalagia” – problem seems to be getting worse and it’s very frustrating.|
|Jan||gabapentin (up to 6g)||–||Strongly contemplating suicide, to the point of actually making plans and preparations. Extremely depressed and frustrated.|
|Feb||gabapentin (up to 6g)||subcutaneous sumatriptan (6mg)||Injection pen abortive works fine, thankfully. I never EVER want to have to sit through 40 minutes of this nightmare again.|
|Mar||gabapentin (up to 3g)||subcutaneous sumatriptan (6mg)||Night attacks seem to be getting better and less frequent but daytime attacks are still coming.|
|Apr||sodium valproate (1.2g) + verapamil (240mg)||subcutaneous sumatriptan (6mg)||Saw neurologist in Amersham – Dr. Matthew Jackson, positive and informative conversation about cluster headaches.|
|May||sodium valproate (900mg) + verapamil (240mg)||–||Symptoms residing, potential remission?|
|Jun||sodium valproate (600mg) + verapamil (160mg)||–||Longest remission since first symptoms in 2012.|
|Jul||sodium valproate (900mg) + verapamil (240mg)||–||Symptoms starting up again.|
|Aug||sodium valproate (1.2g) + verapamil (240mg)||oxygen (10L/minute) + subcutaneous sumatriptan (6mg)||Tried oxygen – too fiddly and annoying to get going. I can’t think straight on a cluster attack and playing with an oxygen tank and touching my face is counter-productive to stopping the pain, I may as well go and see a priest.|
|Sep||sodium valproate (up to 3.6g) + verapamil (up to 480mg)||subcutaneous sumatriptan (6mg)||Saw Dr. Jackson’s assistant under an emergency appointment. This was an absolute waste of time – I felt suicidal during and after the meeting. I was very emotional which unfortunately also reflected in my attitude towards the doctor (who wasn’t very helpful). Lithium prescribed.|
|Oct||lithium carbonate (600mg) + verapamil (up to 480mg) + prednisolone (40mg with taper)||subcutaneous sumatriptan (6mg)||Another hospital trip to the out of hours emergency care had me discover prednisolone, I did some research and asked my GP to prescribe methylprednisoloneas I had read of some successful studies on its use in the treatment of SUNCT.|
|Nov||lithium carbonate (900mg) + verapamil (up to 480mg) + methylprednisolone (32mg with taper)||subcutaneous sumatriptan (6mg)||This is a nightmare, lithium side effects are awful and at this point I’m willing to try anything else.|
|Dec||magic mushrooms (2g on first try, then 4g)||–||First time with psilocybin – stopped the cycle immediately, no pain for about a week until a few tell-tale signs started coming back (haemorrhaging and discomfort in eye), so I dosed with psilocybin again, approximately 8 days after the first dose.|
[Revision 2]: note that when I specify the dose of psilocybin, I’m actually talking about the weight of dry magic mushrooms (the actual amount of psilocybin within the mushrooms varies greatly and depends on the strain of magic mushroom, as well as a number of other factors). For that reason I have changed “psilocybin” to “magic mushrooms” in the tables.
|Jan||psilocybin (up to 3g)||–||Tried a lower dose, anything short of 3g seems to bring the attacks back in under a week.|
|Feb||magic mushrooms (up to 5g, once weekly)||–||–|
|Mar||magic mushrooms (up to 5g)||–||Personal circumstances prevented me from being able to take psilocybin on one occassion, so the missed dose was delayed which lead to a minor attack and some daytime symptoms.|
|Apr||magic mushrooms (up to 5g, once weekly)||–||–|
|May||magic mushrooms (up to 5g, once weekly)||–||–|
|Jun||magic mushrooms (up to 5g)||–||–|
|Jul||magic mushrooms (up to 5g)||–||Tested time period of remission from psilocybin over the last two months – lasts between 12-14 days at best, usually around 10.|
|Aug||AL-LAD, LSZ, magic mushrooms (up to 5g)||–||Tried AL-LAD and LSZ (two legal LSD analogues) – no therapeutic effect, cluster attack the next day, no remission either.|
|Sep||PARGY-LAD, LSA, magic mushrooms (up to 5g)||–||Tried PARGY-LAD (legal LSD analogue) – no success.|
|Oct||magic mushrooms (up to 5g, once weekly)||–||–|
|Nov||magic mushrooms (up to 5g, once weekly)||–||–|
|Dec||aMT||–||Tried aMT (alpha-Methyltryptamine) – possibly worked but difficult to know for sure as it may just be a natural remission – unfortunately aMT will be illegal as of January so I can’t obtain any more of it legally to try it again – interesting experience nevertheless.|
|Jan||magic mushrooms (up to 5g)||–||This year I will try to wait for mild symptoms before taking psilocybin.|
|Feb||magic mushrooms (up to 5g)||–||–|
|Mar||magic mushrooms (up to 5g)||–||Obtained a much stronger strain of magic mushrooms, evidently needs much less to reach the same levels of experience – 5g put me in a different world.|
|Apr||magic mushrooms (up to 2g)||–||–|
|May||magic mushrooms (up to 1g)||–||Even a very low dose is now completely stopping the mild symptoms.|
Summary of Data
The above data strongly suggest that there was a significant reduction in the frequency of attacks as well as the level of pain when using magic mushrooms, further supporting the theory of their therapeutic potential in the treatment of cluster headaches.
Sumatriptan injections cost around £40 for the NHS to buy (with 2 injection pens – that’s two doses/two aborts – per box), I went through at least 30 of these boxes in 2013 alone, that’s over £1,000 of NHS money that I’ve stuck into my buttocks. And this isn’t even taking any of the other drugs into account. The NHS charge me less than £10 per prescription, but the production cost for some of these drugs is higher than what I’m paying back, and that makes me a burden to the system. On mushrooms, I don’t cost the NHS a single penny…
[Revision 2]: it is possible to yield over 300g of dry mushrooms for less than £30.
I think I should remind readers at this stage that I do not hold any formal qualifications in medicine or neurology. That being said, I didn’t get up this morning and decide to write a detailed essay on a random topic. What I’m putting forward here are my own suggestions, theories and ideas, based on what I’ve interpreted from the materials I’ve looked at.
The exact process of cluster headaches (the pathophysiology) is not fully understood, but newer theories suggest that it is related to neurovascular abnormalities as well as abnormalities in the hypothalamus (May, 2005). This means that a specific area of the brain (the hypothalamus) is not doing what it normally should be in the way it should be, and as a result, a pain response is triggered. Some theories suggest that the pain is caused by dilation (swelling/enlarging) of certain blood vessels which further causes specific nerves to become irritated, triggering a pain response.
There doesn’t seem to be a shortage of theories, but one of the most convincing arguments I’ve read suggested that the abnormality in the hypothalamus may be connected to the regulation of a neurotransmitter known as 5-HT or serotonin (ClusterHeadaches.com.au), you may be in agreement on the idea that serotonin plays a significant role in both migraines and possibly cluster headaches.
The reason I think this theory holds a lot of weight is because all of the effective treatments that I have tried have some effect on serotonergic neurotransmission.
To support the following discussion, here is an image of the chemical structure of serotonin:
That hexagon at the bottom (a benzene ring) with its attached pentagon friend (a pyrrole ring) is what’s known as an indole.
“You don’t need to be a scientist to see why this works!”
– Goadsby on briefly discussing psilocybin at the OUCH convention last year.
This is what sumatriptan, LSD, psilocybin, psilocin and serotonin (respectively) look like with their indoles highlighted:
Goadsby’s suggestion is almost as if any tryptamine with an indole ring will stop cluster headaches, but in my experience, that has not always shown to be true, which makes me think there is more to it…
It is well documented that the 5-HT2A receptor (a specific subtype of the 5-HT2 receptors of the serotonin family), mediates in-part, the process of vasoconstriction and vasodilation. In addition, it has also been suggested that its activation in the hypothalamus increases corticosterone (Van de Kar et al, 2001), which I think might also support the reason of why corticosteroids such as prednisolone and methylprednisolone are so effective. 5-HT2A receptors are also responsible for the hallucinations from drugs like LSD and psilocybin (Nichols, 2004).
Of the above images, note specifically how similar psilocin is to serotonin (the last two images); the only difference is the amidogen (NH2), and the hydrogen-oxygen bond, which is located at a different position on the benzene ring.
My interpretation is that the specific serotonin receptors activated by hallucinogens such as psilocybin can stop the cluster headaches in the same way that sumatriptan does (but more effectively). Sumatriptan activates 5-HT1D receptors, which essentially also causes vasoconstriction throughout the brain. The only difference is that 5-HT2A and 2B receptors activated by the same hallucinogens continue to activate these receptors long after the substance has passed, thereby not only aborting the attack, but also aborting the cluster cycle and prolonging the remission period.
In some of the cases I’ve read, people have reported taking psilocybin and not experiencing another attack for several months.
[Revision 2]: as of 2016, I have only been taking micro doses of pure psilocybin. I have found a way to crystallise pure psilocybin from dried mushrooms, making it much easier to store and take. Around 2-3mg of pure psilocybin has no hallucinogenic side effects whatsoever.
[Revision 3]: As of 2017, I am taking around 2mg only once every 3-4 months and the initial tell-tale symptoms of cluster headaches returning has subsided to less than 2 on my pain scale. I do not intend to see how far the symptoms will go if I do not micro dose at all, although I probably should to help support my findings. I may consider it next year if and when I have more time available.
Goals of the Present and Future
When the time is right and when the hype of “this will harm you and cause permanent psychological damage” gets accepted as nothing more than a myth, I will attempt to start a petition on Change.org. I may also try to make a documentary on cluster headaches, but at the moment I think that would be very difficult and potentially also unwise, given the legal status and the still very scarce amount of research on psilocybin in the United Kingdom. If anything, I think the ropes should be loosened to allow more research in this country at the very least, perhaps that would be the next step closer to its legalisation.
I may make some revisions to this article but for the most-part, I think it is quite complete with everything I wanted to share on the matter, which is just as well, as I’m sure you’ve probably had more than enough of me by now!
Note: all of the references in this article should be clickable, so I haven’t repeated them down here; this also isn’t some kind of term paper that I expect to be graded on, it’s mostly my own opinion (minus anything I’ve quoted and referenced).
Thank you very much for reading this and have a great day!