Jump to content
ClusterBusters

CHfather

Master Members
  • Content count

    5,468
  • Joined

  • Last visited

  • Days Won

    238

Posts posted by CHfather


  1. [Edited: I see Pebbles' mentioned Dr. Schor while I was writing. Just a quick, small point: While Dr. Schor has not (as far as I know) extensively published results from the survey in peer-reviewed journals, he and others did publish findings related to oxygen and other acute treatments in a very thorough article in Headache (which I think is peer-reviewed). This article makes a further very compelling and thorough case for oxygen, and it's very important that the medical community keep being reminded/told about the importance of prescribing O2. https://headachejournal.onlinelibrary.wiley.com/doi/10.1111/head.13473]

    Dr. Larry Schor led a very big survey-based study a few years ago that looked into (among many other things) the psychological effects of CH. He speaks at CB conferences, so I'm thinking he might have something prepared, or could maybe share some of his findings with you.  I will PM you his email address.

    The booklet I'm attaching, "Living with Cluster Headaches," is anecdotal, and so might not be helpful, but just in case...

    Living with CH - 8.5x11 - 9-15-14.pdf

    • Like 1

  2. No. Tanks get refilled and reused, although when a supplier brings you more O2, they bring you a different tank and take the one you have back to be refilled and eventually given to someone else.

    Or, if your question is different -- you will use the same tank for multiple aborts. Tanks come in different sizes, holding different amounts of oxygen. The number of uses depends on many factors, including how much O2 is in the tank and how fast you use the O2 that's in the tank (this is called the "flow rate" and it is measured in liters per minute). With a really, really big tank, a person might get five hours of use. With the smaller tank (called an E tank), a person might get something like 30 minutes.

    • Like 1
    • Thanks 2

  3. 1 hour ago, graci said:

    I think going medical route will be the best option for me. 

    I am inclined to agree, as long as you can get it reasonably quickly and are not committed beyond a reasonable initial co-pay.

    1 hour ago, graci said:

    I wish I could just try it out in a doctor's office or something. 

    A small possibility . . . Some people have found that EMT stations or firehouses with O2 are willing to let them use it in an emergency. In current circumstances, this might be a lot less likely.  But if you have such a place very nearby and can get there during an attack, it might be possible. Another reservation about this is that O2 is not always very effective on the first couple of uses (though I would said that most of the time it is effective enough that you can tell whether it's helping or not).

    • Like 1

  4. graci, your question is probably more complicated than you think . . . .  The simple answer is that for you, to test whether O2 works for you, you might have to pay around $100 for the whole welding-based setup: a small filled tank, (20 or 40 cu ft -- maybe $40-60?), a regulator (maybe $30-40), and a basic mask (maybe $5-10).  If it does work and you want to set up a more optimized system, you'll need at least one larger tank (for home use--you can use the smaller one for portability, in the car for example), maybe a second regulator (so you don't have to use the same one for the big and small tanks), and maybe the better mask that is made for people with CH. All that might add $120-150.  Then you will have to bring in the tanks when they need to be refilled, and there is a cost for the refill plus the cost/hassle of trips to the welding supply place.

    When you get medical oxygen from a supplier, you typically have some kind of co-pay (others will have to say what that might be; I just don't know and I think it varies quite a lot). Your payments include a regulator and a basic mask.  Depending on the supplier, you might get a large tank and a smaller tank, and basic regulators for both.  They come to pick up used tanks and replace them.  You might want to spend some extra for a more effective regulator (or regulators) and the better mask.  How things work out with the supplier seems very dependent on the supplier and the delivery people.

    You can read more about welding O2 here: https://clusterbusters.org/forums/topic/5627-notes-about-welding-o2/

     

     

    • Like 1

  5. 2 hours ago, Rainmaker said:

    I started busting a minimum of every 2 days and I just busted more often figuring each bust might be less effective but hoping that there might still be a cumulative effect.  It has now been a few months of busting several times a month

    Great news!!  Congratulations on your persistence, and thank you for letting us know.

    I wonder whether you could clarify this a little, to add to our knowledge. Did your PF time only start when you switched from busting a minimum of every two days to busting several times a month?  Can you be more specific about what several times a month means? Roughly once as week?  Every five days?  How much of what substance were you taking?  Are you doing anything else that might be helping -- the D3 regimen, for example?

    • Like 1

  6. Good!  I hope it helps.

    Doctors usually fax the prescription to a supplier (maybe they have a more modern method of sending them these days).  This advice is from this file, where you might want to read, or re-read, the part about oxygen:  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/      "To avoid frustration, it might be wise for you to contact your O2 supplier before their first delivery to make sure you are getting the right equipment.  Many of them are not used to providing for people with CH.  You want cylinders (tanks), not a concentrator.  At the least, you want one large tank (an M tank or H tank) and one smaller tank for portability (an E tank).  Multiple versions of each tank are better.  You need some kind of stand, at least for your larger tank(s).  You want regulators that go up to at least 15 liters per minute (lpm), and preferably up to 25 lpm. (I say "regulators," plural, because the large tanks and the smaller tanks take different types of regulators.) And you want a NON-REBREATHER mask.  These are all things they should know to give you to treat CH, but often don’t.  When the stuff is delivered, have the delivery person set it up for you and be sure it's working."

    Virtually all private insurance must eventually cover oxygen for CH -- but it often takes a protracted fight to get it.  Medicare and other government programs generally do not cover O2 for CH, although there has been some consideration of waiver to that during the current crisis.  See this post if that is relevant to you: https://clusterbusters.org/forums/topic/6975-urgent-request-regarding-oxygen-medicare/

     

    • Like 1

  7. Just as some general information, you can use the search bar at the top right of the page to see what others have said related to questions you might have. Occipital nerve block is often abbreviated as ONB, so I would think that if you put that in, or the whole phrase, you'll see some thoughts.  My own thought on this (others might disagree) is that if you can get an O2 prescription and quick delivery, that's where you should start, along with jumping on the full D3 regimen at "loading dose" levels and maybe a prednisone taper.  Pred will typically stop attacks for a few days, and sometimes will stop a cycle.  My only qualification to these suggestions is that if you don't have CH, the oxygen very probably won't help, whereas it might be (I don't know) that the ONB would work for other conditions.

    Setting up a welding O2 system is pretty straightforward, and we can pretty much walk you through it in addition to the information in the ClusterBuster Files. I don't know whether "industrial gases" (the category that includes O2) are considered essential services and therefore open. I know that there are Airgas offices in MD just outside DC, and also in VA just on the other side of DC. You can get O2 there, if they're open. Then it's just a matter of buying a regulator and a mask online and connecting up your system.

    • Like 1

  8. 8 hours ago, graci said:

    I also had orthodontic work around the same time

    I agree that it's hard to tell right now whether you have CH.  But the anesthetic that is most typically used for dental work does set off severe CH attacks in many people who do have CH.  

    Georgetown's Headache Center is supposed to be good -- but I suspect there's a long wait (if people are even seeing patients now). U of MD has something, too: https://www.umms.org/ummc/health-services/neurology/services/headache-migraine 

    • Like 1

  9. So, those are all things that have been tested (some of them extensively) related to migraine, because there is a logic that says they should help.  This is an odd quote from a journal article about three of your four ingredients: "The prophylactic properties of other agents such as magnesium, riboflavin, and coenzyme Q10 are low at best, but their lack of severe adverse effects makes them good alternative treatment options." Like Pebbles' said, this seems to be arguing (regarding migraine), "They probably won't help much, but they can't hurt much, either." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4359851/   Maybe in combination something good happens. I know we have had enthusiasts for each of these elements at different times at the board, and I think studies have shown that magnesium supplementation can be valuable for CH.  

    • Thanks 1

  10. 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


  11. 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. 


  12. 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.  

     


  13. 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
     

     

     

     

    • Like 1

  14. I don't know a lot about methlypred, so I can only say that those dosages sound low, and I feel certain they're much too frequent. Here's what one expert says about dosage and use: "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." https://clusterbusters.org/wp-content/uploads/2014/03/GoadsbyClusterTreatment.pd

    I don't know of a medical O2 tank that is 2000 liters, but that's a big one (M size, I guess), which is good. I've written a bunch about O2 use at this file (same as I linked before), so maybe you can take a look there and see whether you have further questions. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ 10/15 lpm might be fine, or it might not be enough. Your mask might be fine (with some modifications), or you might want to try upgrading to the "Cluster O2 kit."  Your breathing strategy might be fine, or you might want to try something different. All addressed in there. I'd also note (quoting from there): "Some people have observed that for some reason when the O2 level in their tank is “low,” the O2 doesn’t work as effectively for aborting, or might not work at all. “Low” in some cases can be as much as a third of a tank remaining. Something to be aware of."  Batch has also posted data about how it can take a while at first for O2 use to become fully effective, so that might be a "normal" O2 issue you're having. Another tip for using O2 that might or might not be in there is to look down toward your feet as you use it. Don't ask me . . . but many people find that it helps.  With a proper system and techniques, you ought to be getting aborts in less than 10 minutes.

    Also in that doc are some things people can do when they don't have O2. There are a bunch of them, with caffeine or energy drinks/shots the most common. Also, Benadryl, melatonin, "brain freeze," and some other possibilities.  I just don't know what you want to do with the baby in there.

    I really don't know why the Maxalt and Cambia have those CH exceptions so prominently stated.  One of these days I might look into that.

    You can also look things up using the search bar at the top right each page. Just a good thing to know about.

     

    • Like 2

  15. My gosh, that's a whole lot of powerful stuff you're taking.  You have a headache doctor who specializes in working with pregnant women, so I am very reluctant to overstate anything.  And you don't say how often you are using the various abortives and possible preventives, so I can only tell you some things we might say to someone on those meds.

    1. Most people with CH don't need 6mg of sumatriptan to stop an attack.  2mg is usually enough; I would say that for sure 3mg is enough 90-plus percent of the time.  There are ways to get to 2 or 3mg.  One is to take apart the 6mg injector.  doses.  https://clusterbusters.org/forums/topic/2446-extending-imitrex/  Others are to use the 3 or 4mg injector for migraine, whose name I always forget, or to get vials and syringes prescribed and measure your own. The less of this you take, the better off you are (more on this below).

    2. Here's what the Mayo Clinic says about rizatriptan (Maxalt): "Rizatriptan is used to treat acute migraine headaches in adults and children 6 years of age and older. It is not used to prevent migraine headaches and is not used for cluster headaches."  I think some people have had relief from CH with this drug, but it isn't first line.

    3. Here's what a neutral website says about Cambia: "Cambia is used to treat a migraine headache attacks, with or without aura, in adults 18 years of age and older. It is not used to prevent migraine headaches. Do not use Cambia to treat a cluster headache."  https://www.drugs.com/cambia.html  I guess I'd at least want to ask the doc about this and the Maxalt. 

    4. Depending on how often you are using them, you seem to be taking a whole lot of triptans (including the pills), and (again, depending on how often you are using them) it wouldn't be surprising to me if you're having more and worse attacks from triptan overuse.

    5. If you're having any kind of overuse condition -- plus: two cycles of steroids (methylpred) in how long? one a year is recommended -- that could help explain why the O2 isn't working.

    6. It would be good to know more about your O2 setup.  There are other possible explanations for it working/not working. What size and number tanks of O2 do you have?  How high does your regulator go?  Are you sure you have a non-rebreather mask?

    7. You should very seriously consider Batch's vitamin d3 regimen, which has helped hundreds. With regard to helping people with the regimen, his generosity is exceptional.  I'm sure he will have considered its application with women who are pregnant. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people

    8. I'd suggest you might look over this file. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    9. For all practical purposes, I don't see a real preventive in your list of meds. (Typically, that would be something like verapamil.) Your doctor might see some of what you are taking as preventives, and there might be reasons not to prescribe other ones.  The d3 regimen is a very effective preventive, but it takes time to reach full effectiveness.

     


  16. If you put the word reishi into the search bar at the top right of any page, I believe you'll find some experiences, including a woman who said she had found relief from her CH with reishi mushrooms.  I don't know what there is about lion's mane, but I remember a guy who kept trying new things and would often have success followed by disappointment.  I think he took lion's mane during one of those experimental periods.

    • Like 1

  17. This file will give you an overview of how CH is treated. It includes a brief description of the busting protocol (the same description of busting that is under the blue banner on each page, "New Users ..."). https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/

    As Vipul says, oxygen and the D3 regimen are things you should be doing. There are other things described in that file that might also help you (Benadryl, caffeine, higher doses of melatonin, "brain freeze").

    Most of us here are not persuaded that microdosing is an effective way to treat CH -- you probably have to get to some threshold dose for it to be effective. 

    I don't think that the Mirtazipine is likely to have brought on your attacks, but others might have a more informed opinion about that. Some antidepressants will block the effects of busting, but I don't know about Mirtazipine.

    It might not seem much like a happy birthday, but I can say that finding this site with its generous and helpful people is a happy thing for you in the longer run.

     

    • Like 3
×