So How Well Does This Work?

When the tryptamine method works well, especially when it is first tried, the relief seems miraculous. Clusterheads who have tried everything with limited or no success are amazed at the results, and they tend to praise mushrooms or seeds or LSD to the skies. It does work miracles for some – there are true tales of a dose or two ending a cycle instantly.

The reality for most is that it works very well, but the process is more like work than a miracle. There will be setbacks, there will be attacks to endure while refraining from old standbys like Imitrex. Many will need more than just a few doses of tryptamines, and some will have to use the treatment every one or two weeks for long periods.

But most will enjoy the most effective treatment they’ve known. How many is most? What are the statistics on the effectiveness of tryptamines? There is little good, solid, publishable, scientific data. But some feel confidant that at least two-thirds and maybe as many as 90 percent of clusterheads can find significant relief using tryptamines.

There has been a case review study, and while such a study is not strong proof, it indicates the method is good enough to warrant further study. There is also a small clinical trial – again not the most powerful of research, but quite valid, showing very good results with a non-hallucinogenic tryptamine called BOL 148.

There are also collections of some hundreds of anecdotal reports from clusterheads themselves – which the were called the Shroom Stories and the Seed Stories. They are hardly scientific evidence, but the numbers have been consistent over many years as the collections have grown, and the results are not inconsistent with the case review study.

THE CASE REVIEW STUDY

Two researchers at McLean Hospital in Boston conducted a case review study of 56 clusterheads who took part in a survey on their experiences using tryptamines. They reported that 52 percent using psilocybin stopped an ongoing cycle entirely, and another 37 percent found it partially effective. Only 6 percent had no success at all.

For extending the pain-free time between cycles, tryptamines were even more effective. Of the 24 clusterheads who tried it, 89 percent found psilocybin or LSD effective. For using a small dose of psilocybin or LSD to stop an individual attack, 82 percent found success.

A case review study is not definitive scientific proof of effectiveness. Solid, scientific proof of a medical treatment would require a randomized, double-blind clinical trial, ideally involving hundreds of people. Such studies can cost many millions of dollars, even if regulators and research review committees would allow such a study involving illegal substances.

The Abstract

NEUROLOGY 2006;66:1920–1922
Response of cluster headache to psilocybin and LSD
R. Andrew Sewell, John H. Halpern and Harrison G. Pope, Jr.

Abstract—The authors interviewed 53 cluster headache patients who had used psilocybin or lysergic acid diethylamide (LSD) to treat their condition. Twenty-two 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. Research on the effects of psilocybin and LSD on cluster headache may be warranted.

THE BOL 148 TRIAL

There is a small clinical trial underway in Germany where a substance known as BOL 148 (LINK) is being tested on cluster headache sufferers. This substance is essentially the LSD molecule with a bromine atom attached. The bromine turns the LSD non-hallucinogenic, but according to preliminary results, does not keep it from stopping clusters.

This study is backed by Clusterbusters, and it is still going on. While only a handful of clusterheads have taken part so far, results are good.

The Abstract

Attack Cessation and Remission Induction with 2-Bromo-LSD for Cluster Headache
John H. Halpern, M.D., Torsten Passie, M.D., Ph.D., Pedro E. Huertas, M.D., Ph.D., Matthias Karst, M.D., Ph.D.

Objectives: An open-label trial of the ergot-based non-hallucinogen 2-bromo-LSD (BOL) for the treatment of episodic and chronic cluster headache.

Background: Anecdotal patient reports as well as a clinical case series led by one of the authors (JHH) describe attack cessation, early termination of attack series, and remission induction/extension in cluster headache patients who self-administer the hallucinogens LSD and/or psilocybin. Evaluation of a non-hallucinogenic analog could clarify whether these reported effects are associated with hallucinogenicity or are due to other chemotherapeutic mechanisms.

Methods: 4 subjects with active cluster headache refractory to standard treatments were administered in an outpatient research setting in Hannover, Germany approximately 30 μg/kg of BOL on 3 separate occasions separated by 5 days. Subjects maintained a headache diary prior to and post treatments for at least two months. The Clinical Global Impressions Scale (CGI) was obtained at baseline and follow-up interviews.

Results: Subject 2 reported a 30% reduction in pain intensity for 2 months after final BOL treatment and a 73% reduction in attack frequency for 4 months; the other three subjects report complete or nearly complete remission of all headache symptoms for at least 2 months after final BOL treatment. No significant adverse effects were observed or reported, including no evidence of hallucinogen intoxication.

Conclusions: If the hallucinogens psilocybin and LSD have important treatment effects for cluster headache, BOL – a non-hallucinogenic analog of LSD – may be safer for further research as indicated by these findings. Though open-label, BOL may be the first non-hallucinogenic agent identified to significantly modify the course of living with this severely debilitating disease.

THE STORIES

The first use of tryptamines to treat cluster headache in recent years was reported to the clusterheadaches.com message board in 1998 by a fellow calling himself Flash. After some intense debate and discussion – it was an outrageous proposal after all – others began trying Flash’s idea and reporting their experience on the message board.

A participant on the message board collected the discussions and reports of tryptamine treatments and posted them on what is now the clusterbusters.com website.

Another participant began rearranging these discussions to better follow each individual’s reports on the treatment, and then began collecting reports as they appeared on the clusterheadaches.com message board. He continued this for several years, and compiled a database of the reports and the results.

The results from this collection of stories is not even close to being a scientific study. After all, these are voluntary reports by unknown people using screen names to post to an Internet discussion board. It is practically a recipe for confusion, misinformation and pranksterism.

The compiler of these reports was careful to include every report, whether the results were good or bad and whether the reports were detailed or sketchy. He was careful to make a conservative judgement and use his best efforts to determine the meaning and results of these reports.

Most of the reports are collected for review in an anonymous archive maintained by the Clusterbusters – all reports showing negative results are included, and most of the positive reports – only a few of the positive have been skipped because of extreme brevity and lack of useful information. A very few were dropped from the archive by requests for confidentiality, or because of suspected pranksterism.

The compiler counted up the results, being conservative in deciding whether a report is positive, and keeping track of all reports, whether a result was noted or not.
Reports of the tryptamines not showing significant relief were counted as negative reports. Reports from those showing relief, but where the sufferers stopped using the treatments for other reasons, were also counted as negative.

(Note: because of problems with table formating, the information below is also included as a pdf attachment.)

The tables below show the numbers. The columns list results from all sufferers, from those saying they have the chronic or episodic types of clusters, and those where the reports don’t say whether its the chronic or episodic form.

The “POS” row shows those reporting significant relief, “NEG” row includes reports of little or no relief or abandonment of the treatment for other reasons. “INDT” for indeterminate are reports where the results are unclear of the sufferer simply doesn’t say.

ALL ALL CHRONIC CHRONIC EPISODIC EPISODIC UNKNOWN UNKNOWN
Result # % # % # % # %
Positive 246 63.4 57 62.0 154 70.6 35 44.9
Negative 53 13.7 18 19.6 20 9.2 15 19.2
Indeterminate 89 22.9 17 18.5 44 20.2 28 35.9
Total 388 100 92 100 218 100 78 100

The table below shows the results reported from those using psilocybin, LSA seeds (RC or HBWR), and those using LSD, and a few who smoked DMT or drank ayahuasca.

ALL ALL CHRONIC CHRONIC EPISODIC EPISODIC UNKNOWN UNKNOWN
Result # % # % # % # %
Positive 246 63.4 57 62.0 154 70.6 35 44.9
NEgative 53 13.7 18 19.6 20 9.2 15 19.2
Indeterminate c89 22.9 17 18.5 44 20.2 28 35.9
TOTAL 38 100 92 100 218 100 78 100

The large number of indeterminate reports are a real problem when trying use this information to figure out the effectiveness of the treatment, and the stories archives are really only meant to record experiences and not provide a valid survey of effectiveness.
People often report starting the treatment, but then they disappear and never say how things worked out. Others report in to ask for advice, then stop posting once they get that advice. Often the last message ends with “I’ll keep you posted,” but there is not another word. The uncompleted report may be due to the treatment not working, but often, when the sufferer has resurfaced a few years later, they report the earlier attempt was successful.
To deal with these problems and come up with an estimate of effectiveness, the compiler looked at simply ignoring the indeterminate reports in the first table below.
The second table shows an attempt to combine the indeterminate reports with the known results in various ways – distributing them to the positive or negative results categories. The “DIST 50/50 columns shows the results when half of the indeterminates are assigned to each of the positive and negative categories.
The “ALL NEG” column counts all the indeterminates as negative, and the “ALL POS” columns counts them all as positive. The last column shows the range of percentages assigned to positive and negative.

NOT COUNTING INDETERMINATES

ALL CHRONIC CHRONIC CHRONIC EPISODIC EPISODIC UNKNOWN UNKNOWN
cell-content cell-content cell-content cell-content cell-content cell-content cell-content cell-content
Positive 246 82,3 57 76.0 154 88.5 35 70.0
Negative 53 17.7 18 24.0 20 11.5 15 30.0
TOTAL 299 100 75 100 174 100 50 100

DISTRIBUTING INDETERMINATES

DIST 50/50 DIST 50/50 ALL NEG ALL NEG ALL POST ALL POST RANGE RANGE
# % # % # % low high
POS 290 74.7 246 63.4 335 86.3 63% 86%
NEG 98 25.3 142 36.6 53 13.7 14% 37%
TOTAL 388 100 388 100 388 100