Jump to content


  • Posts

  • Joined

  • Last visited

  • Days Won


Posts posted by alleyoop

  1. spiny,

    All I could find was what Bob Wold wrote me after I had a cluster attack at the dentist's office:

    [highlight]If you have CH and have to go in for dental work, do not let them deaden you with Xylocaine with EPI (epinepherine).  It is a major trigger for headache, and a dentist worth his or her salt will know that.  Instead request prilocaine or anything without EPI.[/highlight]

    And then there's this from someone (can't remember who) that posted on the CB board way back:

    [highlight]And one more thing, while dosing w/psilocybin I did have to use

    Imitrex shots only twice. This was due to administration of Xylocaine

    w/EPI in the dentist's office. This stuff triggered me hard. In

    dentist visits thereafter, I was given Citanest (Prilocaine) without

    EPI and did not get triggered with this. If anybody has problems with

    attacks while at the dentist, it may be worthwhile to inquire about

    what they're using on you.


    As far as a brief explanation of CH, I dug this up:


    by Seymour Diamond, M.D.,

    Director, Diamond Headache Clinic

    As a headache clinician, the opportunity to review commentary provided by headache sufferers about their pain experiences and the various

    treatments offered has always been rewarding and insightful. The renditions provided in this text, by the cluster headache victims, are

    especially enlightening.

    Cluster headache is not a common headache disorder, and like most pain problems it is difficult to objectively measure the degree of suffering.

    Only the cluster victim can understand the excruciating pain and discomfort that characterize this disorder. Fortunately, only a small percentage

    of cluster headache cases complain of the chronic form. Chronic cluster headache is distinguished by its lack of a remission period lasting more

    than 14 days, or the absence of a remission period for more than one year.

    One of the earliest descriptions of the different forms of cluster headaches (episodic vs. chronic) was given by Bayard T. Horton, M.D. (18951980),

    of Mayo Clinic. Doctor Horton treated many of his chronic cluster headache patients with intravenous histamine desensitization. His work


    this form of therapy was more or less abandoned during the last three decades. However, for those chronic cluster headaches patients


    to standard forms of therapy, the use of intravenous histamine desensitization may offer a viable alternative. At the Diamond


    Clinic, this therapeutic modality is reserved for those chronic cluster headache patients refractory to all previous treatment options. It


    my hope that by citing Doctor Horton's monumental work and his discernment about this debilitating condition, victims of chronic cluster


    will realize that other options are available to find relief.

    The presentation of this book will also offer those with cluster headaches an insight into their condition, and a recognition that they are not alone

    in their suffering. The observations presented here will also be instructive for physicians managing similar cases.

    Seymour Diamond, M.D.

    Director, Diamond Headache Clinic

    Director, Inpatient Headache Unit, Columbus Hospital

    Chicago, Illinois


    Cluster victims are compelled to experience a considerable degree of suffering. Many gain a small measure of comfort in knowing that other

    people realize the true extent of their agonizing affliction. Here is a list of expressions frequently used by cluster sufferers to describe their pain:

    hard to comprehend; impossible to describe; like an ice pick stuck in my eye; like a knife plunged through my temple; excruciating; unbearable;

    suicidal; devastating; severe; intense; fierce; brutal; torturous; debilitating; horrible.

    (Complete information regarding "Pain" is included in the book.)


    A cluster headache is a disabling affiction that detrimentally affects many aspects of the victim's life. Unlike other headaches, one cannot simply

    "take a couple of aspirin" and continue with everyday events. In addition to the physical pain, this ailment impacts on emotions, marriage,

    finances, and worldly obligations. It clearly diminishes the quality of one's life.

    Here is a list of typical comments made by exasperated cluster sufferers: I regularly miss work and other responsibilities; they're difficult on my

    spouse; I'm afraid to leave the house; I can't travel or go far from home; I live in constant fear of the next attack; It's embarrassing to have an

    attack in public; I'm afraid to go to sleep; I function for days on end with little or no rest; they're emotionally and financially draining; I am always

    depressed, anxious, and testy; I'm tired of fooling around with them; they're robbing my life.[/highlight]

  2. Thank You for your Gift of LOVE

    Many of us would Love to be there with you this morning as you meet with members of our governing bodies. Know this though, that many Prayers will be said throughout the next few days for your safe travels and success.

    Thank You, from the bottom of our hearts

    2 Samuel 2:6

    And now may the Lord show Lovingkindness and truth to you; and I also will show this goodness to you, because you have done this thing.


    You guys and gals are all our heroes!!!

  3. OK, so let's just get a few details worked out.

    If my normal dose is 1.2g soaked in tea, then would I also need to take 1.2g ground into capsules?

    If so, and there is .072 in a capsule, that around 16 capsules.

    NO, no, no.

    The capsules themselves weigh about .072 gms.  If you really stuff them, you can get about .4 gm in one capsule.  So if you should be pretty close to your 1.2 gm dose with 3 capsules.

  4. I think some have busted while still on Verapamil... Anyone on this?

    I have been on 480mg daily of verap for 12-13 yrs now.  I was diagnosed CCH in 2001 after a year of misdiagnosis and unneeded surgery.   Verapamil was the first thing my neuro tried, and of all of the many meds that I later took, the only one that gave me moderate relief.

    When I found Clusterbusters in '02, I began busting my h/a's with MM.  It took about 4 to 5 yrs and other regimens to go episodic, but that's what I eventually did.  In the meantime, the relief that busting gave me was significant, both in frequency and intensity of the attacks.  I was taking 480 mg of verap daily though all this, and still am.

    jk, you have some really knowledgeable peeps giving you some excellent advice.  Get your 02 set-up going, get off the triptans, and start busting.  Keep taking the verap, at least for now.  I think, especially with the migraines, that you will be amazed at the difference in your life even 6 mos from now.

    Good luck!  And keep asking questions, you're getting great advice.


  5. From the discussion in the wikipedia talk page, I might as well be talking to a brick wall.   Thanks CHFather for applying your written tallents!  It's clear that the medical writers really have NO regard for helping anyone only following the "Rules".  The entire population of the planet could die and they'd still quote the "rules" as a lame excuse for holding the status quo.  I definitely understand the reason for the rules on Wikipedia, but as everyone here knows rules don't exactly apply when you're next option is someone cutting on your brain.....  Geesh....

    As my pappy used to say, "It's a narrow minded person who can't see an exception to the rule."


    People using tryptamines LSD in particular - for recreational, spiritual and self exploratory purposes developed a scale of the intensity of the experience, called the trip scale. It is somewhat useful in the treatment of cluster headaches as a gage of the amount of psychoactive substance ingested and therefore whether a therapeutic amount was used. Generally a trip level of one or less than one is adequate for the treatment of cluster headache.

    Some clusterheads feel reaching more than trip level one makes little difference therapeutically and may simply result in a more intense psychedelic experience which might be good, and enjoyable, bad and disturbing, or both. Others however disagree, and feel that a stronger dose, reaching trip level two or three, may be more effective in treating stubborn cluster cycles. And some feel that reaching more than a level two might be counter productive in treating clusters

    Level 1

    This level produces a mild “stoning” effect, with some visual enhancement - colors may be brighter, outlines and contrasts more distinct. Some short-term memory anomalies. Left/right brain communication changes, causing music to sound “wider.”

    Level 2

    Brighter colors, and some subtle visual anomalies (i.e. objects appear to slightly shift position or “breathe”), some two-dimensional patterns become apparent upon shutting eyes. Confused or reminiscent thoughts. Change of short term memory leads to distractive thought patterns. Apparent vast increase in creativity as the natural brain filter is bypassed.

    Level 3

    Very obvious visual distortions: everything looking curved and/or warped, patterns and kaleidoscopes seen on walls, faces , etc. Some mild hallucinations such as rivers flowing in wood grain or “mother of pearl” surfaces. Closed eye images become 3 dimensional. There is some confusion of the senses (i.e. seeing sounds as colors, etc). Time distortions and “moments of eternity.”

    Level 4

    Strong hallucinations, i.e. objects morphing into other objects. Destruction or multiple splitting of the ego. (Things start talking to you, or you find that you are feeling contradictory things simultaneously.) Some loss of reality. Time becomes meaningless. Apparent out-of body-experiences and e.s.p.-type phenomena. Blending of the senses.

    Level 5

    Total loss of visual connection with reality. The senses cease to function in the normal way. Total loss of ego. Merging with space, other objects, or the universe. The loss of reality becomes so severe that it defies explanation. The earlier levels are relatively easy to explain in terms of measurable changes in perception and thought patterns. This level is different in that the actual universe within which things are normally perceived ceases to exist. Satori enlightenment (and other such labels).

  7. If you have CH and have to go in for dental work, do not let them deaden you with Xylocaine with EPI (epinepherine).  It is a major trigger for headache, and a dentist worth his or her salt will know that.  Instead request prilocaine or anything without EPI.

  8. Art, it sounds to me like you are using a generic non-rebreather mask with holes on the sides.  Until you get something better like a ClusterMask (sp?) or simply a mouth piece, you will want to tape over the holes on both sides. 

    The object is to get 100% 02 inhaled in with no room air.  Inhale pure 02, remove the mask and exhale -- deep breaths in and out as fast as you can.  That's where a bag or higher lpm regulator comes in handy.  As CHf said, read the Oxygen page under the Menu button at top left side of this page.

  9. Thanks to both of you -- Tony for catching this, and thank you Jeff for the edit.  Much appreciated!!

    Tony's right, Wikipedia is one of the first hits on Google, and virtually anyone can edit it.  So please everyone, keep an eye on this and edit as needed.

    Thanks again,


  10. It took me so long and so many life lessons to gather the confidence to start really advocating for myself.

    And thanks to this web site, I found the help and resources I've needed to keep positive and help myself.

    No magic miracles, but hoping and coping is worth it's weight in gold.

    Love, love, love it!!!

  11. Suggestion, get rid of the pain killers. It's proven that they actually cause headaches. 1st thing my nuro asked me is if I was taking pain meds. I can't find the link but there is a ton of research now linking pain meds to Migraine and headache issues. Besides they don't work for CH anyway.



  • Create New...