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All,

Just wanted to post a quick note that the main clusterbusters.org website is currently down.  I'm told there's an incompatibility due to an upgrade our Host just performed.  They're in the process of making the required updates to our website and it should be up soon. 

Anyone with a direct link to the form isn't affected.  Anyone that uses the clusterbusters.org website to get here, won't be able to get to the main site. :(

I'll post additional info here as available.

Cheers,

J

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All,

I just heard from the people that manage the main website.  I'm told it could be several days to get it back up.  Unsure what the challenge is, but I asked them to change the main CB.org default page to be the message board here for the time being.  That way people can still get to us.  Hoping to hear back quickly.

Cheers,

J

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All,

The website is back online.  There were some challenges getting the old website to work with the changes the host made to the infrastructure.  The decision was made to go ahead and post the new site that was in the works.  Some of the links are work in progress, so if there's something you need just ask here.  I'm sure someone has a copy or can get you what you're looking for.

Cheers,

J

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  • 4 weeks later...

Tony, do you mean the 2006 article by Sewell, Halpern, and Pope, "Response of Cluster Headache to Psilocybin and LSD"?  If so, I have it. But I can't attach it here because I have apparently already used up my allotted attachment capacity.  Tried to paste it, but the formatting all falls apart, as you can see below.  Left in here in case you want to try to wade through the mess.  If you PM me an email address, I can send it that way. (It used to be easily located at the main CB page, but that seems quite jumbled now.)

Response of cluster
headache to psilocybin and LSD
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.
NEUROLOGY 2006;66:1920–1922
R. Andrew Sewell, MD; John H. Halpern, MD; and Harrison G. Pope, Jr., MD
Cluster headache, often considered the most painful of all types of headache,1  affects 
predominantly men (0.4% vs 0.08% of women) and typically begins after age  20  years.  The  
disorder  is  categorized  as  either episodic,  occurring  for  1-week  to  1-year  periods,  in- 
terspersed   with   pain-free   remission   periods,   or chronic, in which the headaches occur 
constantly for more  than  a  year  with  no  remission  longer  than  1 month.2    Ten  percent  
of  episodic  cluster  headaches ultimately  evolve  into  the  chronic  form,  and  these are  
termed  secondary  chronic.  In  standard  descrip- tions  of  cluster  headache,  an  attack  
refers  to  the actual paroxysm of pain, a cluster period refers to a period  of  time  when  
attacks  occur  regularly,  and  a remission period refers to a prolonged attack-free in- terval.3  
 Oxygen and sumatriptan are the mainstays of acute abortive treatment, whereas verapamil, lith- 
ium, corticosteroids, and other neuromodulators can suppress attacks during cluster periods. No 
medica- tions  are  known  to  terminate  cluster  periods  or  ex- tend  remission  periods.  The  
effects  of  the  ergot alkaloid derivative lysergic acid diethylamide (LSD) and the related 
indolalkylamine psilocybin on cluster headache  have  not  previously  been  described  and may 
include such properties.

Case  series.   We  were  contacted  by  a  34-year-old  man,  diag- nosed  with  episodic  cluster 
 headache  at  age  16  years,  who  re- ported  a  complete  remission  of  his  cluster  periods  
when  he repeatedly used LSD on a recreational basis between ages 22 and
24 years. Cluster periods resumed once he stopped. Based on this experience, he attempted to treat 
his cluster headache by ingest- ing  psilocybin-containing  mushrooms  every  3  months  and  again 
achieved  lasting  remission.  On  three  occasions  when  he  missed his scheduled dose, a cluster 
period reoccurred.
Intrigued  by  this  history,  we  located—through  cluster  head- ache support groups and an 
Internet-based survey—several hun- dred people with cluster headache who reported use of 
psilocybin- containing mushrooms or LSD specifically to treat their disorder, and we administered a 
standardized questionnaire (available from the  authors).  The  consent  form  and  study  were  
approved  by  the McLean  Hospital  institutional  review  board.  We  restricted  our analysis  to 
 the  53  individuals  who  1)  agreed  to  be  contacted  for evaluation by telephone or e-mail 
and 2) met International Classi- fication of Headache Disorders-2 criteria for cluster headache and 
allowed  us  to  obtain  copies  of  medical  records  documenting  a diagnosis  of  cluster  
headache  by  an  MD  or  DO.  If  the  medical records  did  not  support  the  diagnosis,  the  
subject  was  excluded from  further  analysis.  The  final  sample  included  subjects  from 
across  the  United  States  as  well  as  Great  Britain,  The  Nether- lands,  and  South  
Africa.  We  found  no  significant  differences  be- tween  men  and  women  on  demographic  
indices  or  headache features (table 1). Notably, 31 (58%) of the 53 individuals reported that 
they had never used psilocybin or LSD except to treat their cluster headache, and a further 13 
(25%) had used these drugs for recreational purposes only in the remote past during adolescence.
Results are summarized in table 2 and listed in complete form
in table E-1 (on the Neurology Web site at www.neurology.org). Of the 32 subjects with episodic 
cluster headache, 19 had used sub- lingual psilocybin during cluster attacks; 17 found psilocybin 
to be effective in aborting attacks (defined as ending the attack within 20  minutes).  Only  one  
subject  had  used  sublingual  LSD  for  an acute attack, reporting it to be effective. 
Twenty-nine subjects had used psilocybin prophylactically during a cluster period; 15 (52%) 
reported that it was effective (defined as causing total cessation of attacks), and a further 12 
(41%) reported partial efficacy (defined as  attacks  decreasing  in  intensity  or  frequency  but 
 not  ceasing). Five of six LSD users reported cluster period termination. Twenty subjects  
ingested  psilocybin  during  a  remission  period;  19  re- ported  an  extension  of  their  
remission  period,  in  that  their  next expected cluster period was delayed or prevented 
entirely. Four of five subjects reported similar remission extension with LSD.
Of  the  21  subjects  with  chronic  cluster  headache,  5  of  7  re-
ported that psilocybin aborted a cluster attack; 10 of 20 reported that psilocybin induced a 
complete termination of cluster attacks;


and  a  further  8  reported  partial  efficacy.  Of  two  chronic  cluster


headache  patients  who  ingested  LSD,  both  at  subhallucinogenic doses, one reported no attacks 
for 10 days, and the other reported none  for  2  months.  Interestingly,  22  (42%)  of  the  53  
subjects reported partial or complete efficacy (as defined above) from sub- hallucinogenic doses of 
psilocybin or LSD.

Discussion.   Our  results  are  interesting  for  three reasons.  First,  no  other  medication,  
to  our  knowl- edge,  has  been  reported  to  terminate  a  cluster  pe- riod.  Second,  unlike  
other  ergot-based  medications, which must be taken daily, a single dose of LSD was described as 
sufficient to induce remission of a clus-
Additional material related to this article can be found on the Neurology Web site. Go to 
www.neurology.org and scroll down the Table of Con- tents for the June 27 issue to find the title 
link for this article.


                                                                                                    
                       

From  the  Biological  Psychiatry  Laboratory  (J.H.H.,  H.G.P.)  and  Clinical Research  
Laboratory  (R.A.S.),  Alcohol  and  Drug  Abuse  Research  Center, McLean Hospital/Harvard Medical 
School, Belmont, MA.
Funding sources include MAPS of Sarasota, FL (J.H.H., H.G.P.), and NIDA, NIH T32-DA07252 (R.A.S.). 
No funding source had any role in study design; collection, analysis, or interpretation of data; 
writing the report; or submis- sion of the manuscript.
Disclosure: The authors report no conflicts of interest.
Received December 20, 2005. Accepted in final form March 10, 2006.
Address  correspondence  and  reprint  requests  to  Dr.  R.  Andrew  Sewell, Oaks  Building,  
ADARC,  McLean  Hospital,  115  Mill  St.,  Belmont,  MA 02478; e-mail: asewell@mclean.harvard.edu
1920   Copyright  ©  2006 by AA    Enterprises, Inc.


Table 1 Cluster headache characteristics by sex and subtype
Headache features

Headache type               n                 Age, y Episodic


Attack duration, min


Attacks/day at peak


Cluster period duration, wk


Remission period duration, wk

Men                            26               45 (8)                          97 (66)             
            5.5 (3.7)                        13 (10)                              11 (10)
Women                         6               45 (11)                        66 (34)                
         6.2 (3.0)                        15 (10)                                9 (5)
Total                           32               45 (8)                          91 (60)            
             5.6 (3.5)                        13 (10)                              11 (9)
1° Chronic                                                                                          
                                                                NA                                  
 NA
Men                              6               48 (8)                          79 (57)            
             9.8 (7.4)
Women                         1               38 (NA)                       90 (NA)                 
       8.0 (NA)
Total                             7               47 (8)                          81 (53)           
              9.6 (6.8)
2° Chronic                                                                                          
                                                                NA                                  
 NA
Men                            10               45 (6)                        105 (70)              
           6.9 (3.0)
Women                         4               46 (10)                      139 (64)                 
        7.5 (1.0)
Total                           14               45 (7)                        115 (68)             
            7.1 (2.5)

Data are presented as mean (SD).
1° = primary; 2° = secondary; NA = not applicable.


ter period, and psilocybin rarely required more than three  doses.  Third,  given  the  apparent  
efficacy  of subhallucinogenic  doses,  these  drugs  might  benefit cluster headache by a 
mechanism unrelated to their psychoactive effects.

Table 2 Reported efficacy of principal reported treatments for cluster attacks, cluster periods, 
and remission extension
Partially


Several limitations of this study should be consid- ered.  First,  it  is  subject  to  recall  
bias,  because  it relies  primarily  on  participants’  retrospective  re- ports.  However,  6  
participants  (11%)  provided  de- tailed   headache   diaries   that   corroborated   their 
recall. In addition, 3 (6%) of the 53 participants tried psilocybin for the first time subsequent 
to consenting to  participate  in  the  study  but  before  being  ques- tioned;  2  reported  
complete  efficacy  and  1  reported partial  efficacy—a  prospective  response  rate  consis-

Medication Acute treatment


Total, n


Effective, n (%)


effective, n (%)


Ineffective, n (%)


tent with our retrospective findings.
A  second  consideration  is  the  possibility  of  selec- tion  bias,  in  that  individuals  with 
 a  good  outcome

Oxygen                          47          24 (52)        19 (40)           4 (9)
Triptans                        45          33 (73)          8 (18)           4 (9)
Psilocybin                     26          22 (85)          0 (0)             4 (15)
LSD                                 2            1 (50)          0 (0)             1 (50)
Prophylactic
Propanolol                    22            0 (0)            2 (9)           20 (91)
Lithium                         20            1 (5)            8 (40)         11 (55)
Amitriptyline                25            0 (0)            4 (16)         21 (84)
Verapamil                     38            2 (5)          22 (58)         14 (37)
Prednisone                    36          15 (45)          5 (14)         15 (42)
Psilocybin                     48          25 (52)        18 (37)           3 (6)
LSD                                 8            7 (88)          0 (0)             1 (12)
Remission extension
Psilocybin                  22 (31)      20 (91)           NA              2 (9)
LSD                             5 (7)          4 (80)           NA              1 (20)

Nine additional individuals had taken psilocybin and two addi- tional had taken lysergic acid 
diethylamide (LSD) purposefully for remission extension but were not yet due for another cluster 
period at the time of our evaluation; hence, for them, efficacy could not be scored.

may  have  been  more  likely  to  participate.  Recruit- ment over the Internet also selects for 
younger, more educated, and more motivated subjects,4  likely lead- ing to increased reported 
efficacy.
Third,  participants  were  not  blind  to  their  treat- ment,  raising  the  possibility  of  a  
placebo  response. However, cluster headache is known to respond poorly to placebo; controlled 
trials have shown a placebo re- sponse of 0% to prophylactic medications such as vera- pamil,5  
capsaicin,6  and melatonin,7  and less than 20% to  abortive  medications  such  as  sumatriptan.8  
 There- fore, it seems unlikely that we would have found more than  50  cases  of  apparent  
response  to  psilocybin  or LSD through placebo effects alone.
Our  observations  must  be  regarded  as  prelimi- nary,  in  that  they  are  unblinded,  
uncontrolled,  and subject to additional limitations as described above. Therefore,  our  findings  
almost  certainly  overesti- mate the response of cluster headache to psilocybin and LSD and should 
not be misconstrued as an en- dorsement  of  the  use  of  illegal  substances  for  the 
self-treatment  of  cluster  headache.  However,  given the high reported efficacy for this 
notoriously refrac-
June (2 of 2) 2006   NEUROLOGY 66    1921

tory condition, it is difficult to dismiss this series of cases  as  entirely  artifactual.  
Further  research  is warranted.

Acknowledgment
The authors thank Nancy K. Mello, PhD, and Kimberley Lindsey, PhD, for their comments on an earlier 
version of this manuscript, and Robert Wold, Earth and Fire Erowid, for assistance with data 
collection.


References
1.  Dodick  DW,  Rozen  TD,  Goadsby  PJ,  Silberstein  SD.  Cluster  headache. Cephalalgia 
2000;20:787–803.
2.  Headache  Classification  Subcommittee  of  the  International  Headache Society. The 
International Classification of Headache Disorders. Cepha- lalgia 2004;24 (suppl 1):44–48.
3.  Ekbom K. Some remarks on the terminology of cluster headache. Ceph- alalgia 1988;8:59–60.
4.  Etter  JF,  Perneger  TV.  A  comparison  of  cigarette  smokers  recruited through the 
Internet or by mail. Int J Epidemiol 2001;30:521–525.
5.  Leone M, D’Amico D, Frediani F, et al. Verapamil in the prophylaxis of episodic cluster 
headache: a double-blind study versus placebo. Neurol- ogy 2000;54:1382–1385.
6.  Marks DR, Rapoport A, Padla D, et al. A double-blind placebo-controlled trial  of  intranasal  
capsaicin  for  cluster  headache.  Cephalalgia  1993;13: 114–116.
7.  Leone M, D’Amico D, Moschiano F, Fraschini F, Bussone G. Melatonin versus  placebo  in  the  
prophylaxis  of  cluster  headache:  a  double-blind pilot study with parallel groups. Cephalalgia 
1996;16:494–496.
8.  van Vliet JA, Bahra A, Martin V, et al. Intranasal sumatriptan in cluster headache: randomized 
placebo-controlled double-blind study. Neurology 2003;60:630–633.
 CME
 

 

 

 

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Tony, maybe this is what you're looking for???? https://clusterbusters.org/forums/topic/681-1-the-clusterbuster-method-a-quick-rundown/?tab=comments#comment-8322  (Asking this question to anyone who happens to be reading this thread: This document contains this statement about tryptamines: "For aborting attacks, they rival oxygen in safety and effectiveness." This puzzles me. Is this true, but no one does it anymore except on rare occasions (maybe because of the five-day "shutting the door" principle/rule)?  From the time I have been here (~10 years), I really don't recall anything being pushed about using them to abort, and they don't seem to effectively do that a lot of the time. Maybe as a SPUT?)

Tony, IF this is what you are looking for, it's the first of the 13-part series provided by tommyd back in 2010.  You can see all of them in the ClusterBuster Files section.  A lot of them are out of date. If you are looking for a summary of busting to share, I think the document under the "New Users - Read Here First" banner at the top of each page is probably as good as we have.  

 

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I'll attach a picture of a section of the website I was looking for. I think it's pretty much the same as the 13 parts in the forums ? Maybe somebody knows better, I thought maybe the website version was more up to date or it had additional content to it. I had been translating it to finnish very slowly over the years and it's far from done. I'll do my best to advice everyone register here and ask any questions they might have. Playing Well Together is asked about most at the moment (from me).

I have heard of aborting attacks with different tryptamines mysef but don't have personal experience and know little about this subject. I think many that do this do not repeat or manage to repeat it (maybe due to "shutting the door") unless they use tiny amounts (as in SPUTs). Just yesterday I read here that "According to other reports (1, 2, 3), inhaled DMT can abort an attack in as little as 3-5 seconds." I think reports like that should make researchers jump right into this one.

Thank you again CHfather (and for all that you do!) :)

Here's my attachment: https://drive.google.com/file/d/1hiSrF4Oygu3aczlY2NT7lfP5VwlWR1GY/view?usp=sharing

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CHF,

I just made some changes, see if you can attach now?  I doubled the attachment size limit. 

I'm thinking about enabling HTML, but for security related issues (spammers, hackers etc), I have to leave it off.  I can though, create a new Advanced / More Advanced group. ha ha.  and enable HTML there.  Let me do some research, as I think enabling HTML will greatly enhance the regular posters experience on the board.

Cheers,

J

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CHF,

I'm doing some other admin stuff this morning, so went ahead and built the new group while everything was in my head.  I removed most of the site restrictions on content and put you in it.  Please let me know if you can post etc easier now.  If so..  I'm thinking about moving everyone with 1,000 - maybe 500 (?) posts to the new group and setup an automatic promotion.  I'll want to get the mods thoughts before I enable it for others.  But anyway.  Please let me know if it's better.

You should be able to paste in HTML and also attachments can be much larger.

Cheers,

J

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Tony, it looks to me like this is the same as the numbered items in the ClusterBuster Files.  As far as I know, these particular documents haven't been updated since tommyd posted them.  Now that THMH has made it possible for me to attach documents again, would you like me to copy the 13 entries from the CB Files into a Word document for you? (I think there's a small problem with including the outdated info, but I don't know what to do about that.)

5 hours ago, Tony Only said:

Thank you again CHfather (and for all that you do!) :)

What I do is not half as much as you do. 

Edited by CHfather
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THMH, thanks!  As a test, attaching and inserting Goadsby's journal article on CH treatments.  Seems to be working!!!!!

Peter J Goadsby, MD, PhD, DSc
Headache Group, Department of Neurology, University of California, San Francisco, San Francisco CA

Cluster Headache is a very severe form of primary headache with a population one-year prevalence
of about 0.1 %. Classified as a Trigeminal Autonomic Cephalagia (TAC), it is probably the second
most common form of primary headache encountered by neurologists or headache specialists.
Cluster headache (CH) comes in two dominant forms, episodic CH, in which there are breaks of a
month or more without therapy (80% of patients), and chronic CH in which such breaks are not seen
(20% of patients) (1).
The medical management of CH may be divided into the treatment of the acute attacks, and
preventive treatment, aimed at suppressing attacks during a bout (2). Acute and preventive
treatments are begun simultaneously at the onset of a cluster period. New surgical options and
neurostimulation have supplanted destructive treatment approaches. (3)
Due to the relative rarity of the condition much of the treatment of CH has evolved from clinical
experience rather than from randomized controlled trials (RCT). The designation of ‘(RCT)’ indicates
that a controlled trial was performed. Many uses cited above are off-license and prescribers are
encouraged to examine the relevant information in this regard.
Acute attack treatment
CH attacks are typically short, from 30 to 180 minutes, and often peak rapidly; they thus require a
treatment with quick onset. Medication overuse headache can be seen in CH patients, typically if
they have a co-existent history or family history of migraine, and when largely ineffective treatments
are employed for acute attacks, such as oral triptans, acetaminophen and opiate receptor agonist
analgesics.
Oxygen: Inhaled oxygen, 100% at 10-12 L/min for 15 minutes is an effective, safe treatment of acute
cluster headache (RCT).
Triptans: Sumatriptan 6 mg subcutaneous, sumatriptan 20mg intranasal, and zolmitriptan 5 mg
intranasal are effective in the acute treatment of cluster headache (RCT). Three doses of zolmitriptan
in twenty-four hours are acceptable. There is no evidence to support the use of oral triptans in CH.
Dihydroergotamine 1mg IM is effective in the relief of acute attacks of CH. The intranasal form seems
less effective, although some patients benefit from its use.
Lidocaine: Topical lidocaine nasal drops may be used to treat acute attacks of CH. The patient lies
supine with the head tilted backwards toward the floor at 30 degrees and turned to the side of the
headache. A nasal dropper may be used and the dose (1 mL of 4% lidocaine) repeated once after
15 minutes.
Preventive treatments
The options for preventive treatment in CH are determined largely by the bout length not by the
designation of episodic versus chronic CH. Preventives may be regarded as short-term, or long-term,
based on how quickly they act and how long they can be safely used. Most experts would now favor
verapamil as the first-line preventive treatment of choice, although for some patients with short bouts
limited courses of oral corticosteroids or a greater occipital nerve injection may be more appropriate.
These shorter term approaches can also be employed as transitional therapy as longer term
preventive doses are being increased. In general terms monotherapy in cluster headache is
preferred, acknowledging that some patients, preferably managed by physicians with experience,
will require more than one preventive.
Verapamil is more effective than placebo and compares favorably with lithium. Clinical practice clearly
supports the need to use relatively high doses for CH, certainly higher than those used in
cardiological indications. After obtaining a baseline EKG, start patients on 80 mg three times daily;
thereafter the total daily dose is increased in increments of 80 mg every 10-14 days. An EKG is
performed prior to each increment and at least ten days after the dose change. The dose is increased
until the cluster attacks are suppressed, side effects intervene or the maximum dose of 960 mg daily
is achieved. Side effects include constipation and leg swelling and gingival hyperplasia (patients must
monitor dental hygiene closely).
Corticosteroids in the form of prednisone 1 mg/Kg up to 60 mg for four days tapering the dose over
three weeks is a well accepted short-term preventive approach. It often stops the cluster period,
and should be used no more than once a year to avoid aseptic necrosis.
Lithium carbonate is mainly used in chronic CH because of its side effects, although it is sometimes
employed in the episodic variety. The usual dose of lithium is 600 mg to 900 mg per day in divided
doses. Lithium levels should be obtained within the first week and periodically thereafter with target
serum levels of 0.4 to 0.8 mEq/L. Neurotoxic effects include tremor, lethargy, slurred speech, blurred
vision, confusion, nystagmus, ataxia, extrapyramidal signs, and seizures. Concomitant use of
sodium-depleting diuretics should be avoided, as they may result in high lithium levels and
neurotoxicity. Long-term effects such as hypothyroidism and renal complications must be monitored
in patients who use lithium for extended periods of time. Polymorphonuclear leukocytosis is a
common reaction to lithium and is often mistaken for occult infection. Concomitant use with
indomethacin can increase the lithium level.
Topiramate is useful in the prevention of CH attacks. Typical doses are 100-200 mg daily, with the
same adverse events as seen with its use in migraine.
Melatonin may be helpful in CH as a preventive and there is one controlled trial demonstrating
superiority to placebo. Doses of 9 mg daily are typically used.
Other preventive agents include gabapentin (up to 3600 mg daily) and methysergide (3 to 12 mg
daily). Methysergide is no longer easily available, and must always be used with breaks in therapy
to avoid fibrotic complications. Divalproex is not effective (RCT).
Greater occipital nerve injection: Injection of methylprednisolone (80 mg) with lidocaine into the area
around the greater occipital nerve ipsilateral to the site of attack may result in remissions lasting from
5 to 73 days (RCT). This approach can be very helpful in shorter bouts and to provide a general
reduction in burden in more prolonged bouts and in chronic CH.
Surgical approaches: Modern surgical approaches to CH are dominated by deep brain stimulation in
the region of the posterior hypothalamic grey matter and occipital nerve stimulation. In expert hands
the results are excellent and appropriate referrals to expert centers are encouraged. There is no clear
place for destructive procedures, such a trigeminal ganglion thermocoagulation or trigeminal sensory
root section.
Further reading
1. Lance JW, Goadsby PJ. Mechanism and Management of Headache. (7th ed.) New York:
Elsevier, 2005.
2. Goadsby PJ, Cohen AS, Matharu MS. Trigeminal autonomic cephalalgias- diagnosis and
treatment. Current Neurology and Neuroscience Reports 2007;7:117-125.
3. Goadsby PJ. Neurostimulation in primary headache syndromes. Expert Review in
Neurotherapeutics 2007;7:1785-1789.
American Headache Society • 19 Mantua Road, Mt. Royal, NJ, 08061 • 856.423.0043 • www.AmericanHeadacheSociety.org

GoadsbyCluster.pdf

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