Jump to content


  • Posts

  • Joined

  • Last visited

  • Days Won


Posts posted by alleyoop

  1. Thank you Alleyoop!!! Guess that would be kinda gross with crushed up seeds??


    Actually, small doses of "seed tea" is very close to what you mention.  It's called the sip method. Below is a verbatim quote from a German doctor posted some time ago on OUCH UK --

    "Hi friends,

    have to tell the story of a friend of mine who has been periodic for

    meanwhile 16 y (every year having a looooooong six-month bout from

    ±October/November up to March/April). After few years all

    prophylactics stopped working and he was using only O2 as med for

    the last couple of years.

    Three years ago he started the treatment with Cuban dwarfs with the

    white caps, experimenting at different dosages (never tried similar

    substances before...), but with a very limited success, on balance a

    disappointing therapeutic experience during three bouts.

    Then, during the remission in the summer of 2004 he took tea of 2

    HBWR seeds three times, i.e. every two months - and for the first

    time in 16 y THE BOUT STAYED AWAY, no CH all the winter time

    (coincidence? fortuity?)! And, tea of only two seeds didn't have any

    hallucinogenic effect. But, in May 2005 very, very slight shadow-

    like pains behind the right = CH eye and in the right upper jaw

    started to came every second or third day for one or two hours at a

    time, but he didn't care and didn't take any more seed tea. Then, in

    the very first days of June 2005, a new CH bout started with

    vehemence. And, when he started to take the tea, again at the two-

    seeds dosage, it didn't help, leave alone the abortion of the

    bout...Then, experimenting again, he remained on the following

    schedule: Every week of the bout tea of 2 1/2 seeds/day in three

    sips evenly distributed over the day, for three consecutive days,

    i.e. 7-8 seeds per week. With this dosage of seed tea and

    occasionally O2 the entire bout was well manageable and ended in the

    beginning of October after four months.

    In the beginning of November 2005 a slight pain behind the right eye

    and in the upper jaw came again for several hours per day. After a

    few days the pain started to get uncomfortable and he took tea of

    two seeds - fifteen minutes later the pain disappeared and didn't

    resurface so far.

    Recipe for one portion of seed tea:

    - pound 1 - 2 seeds in a mortar to get a fine powder

    - bring a cup or a mug of water to boiling, then take it from the


    - add the seed powder and juice of 1/2 - 1 lemon and as much sugar

    as you like to

    the hot water and stir well

    - let it brew for ±30 min - ready! (it's not necessary to filter the

    tea, the seed povder sets down after a time completely and the tea

    becomes a clear liquid)

    If needed, make more tea, you can keep it in the fridge for several



    Subsumed, the tea couldn't break the cycle once the latter was fully

    established, but it seems that it could have impeded the occurrence

    of a new cycle at a very low dose - tea from 2 - 3 seeds once a

    month can probably do the trick..."


  2. Tim,

    Believe it or not, you are thinking pretty good.  The sleep seems to be working.   :)

    I think a 5 day detox and then a dose of mushies, followed 5 days later by a good dose of seeds just might do the trick.  The only caveat that I would add, is this: I don't know how long you have been using pred, but if it is for any length of time, you will need to taper off of it.  In fact, ideally, pred should always be tapered.  Again, Donnie can tell you about trying to quit pred cold turkey.

    Make sure you have plenty of oxygen on hand.

    Maybe someone else can add to or better clarify what I'm saying.

    Good luck buddy, and hang in there.  You can beat this!


  3. I've never had a bad day fishing either agentorange.  I have had many good days fishing for bass here in GA.  But my favorite is saltwater, especially charter boat fishing off of the coast. To me, there's nothing better!   :)

    Tight lines,

    bobb  8-)


    BobW is an avid walleye fisherman!  :o

  4. I am currently in disbelief as three headaches a day are breakign through the pred taper.Never happened before.Pred always knocked everything out. Angry

    Donnie (Mad6string) is the one buster I know that is most familiar with prednisone.  Maybe he will chime in, or you can PM him.

    Good luck,


  5. There is very little that I remember from the late 60's, early 70s -- but music is the one thing that is still fresh in my memory.  I was blessed to be able to see many artists live, including Jimi Hendrix and Janis Joplin.  But I think the best concert I ever attended was Carlos Santana. It don't get much better than that!  Enjoy Leslie!!

    I enjoy all kinds of music, from country to classic.  I will be checking out the links that you posted Matty - Thanks.


  6. All I use is welders o2. Bobb turned me on to it when was on the business end of a .380. Believe me it's a LIFE saver. Thanks Bob. (if I never told you)


    You have Donnie - many times.  And I also know that you have payed it forward and saved at least one life yourself.

    You need to pat yourself on the back!


  7. I would steer clear of the NSAIDs and hydrocodone if possible.

    I have used melatonin simultaneously with the alternatives with no apparent conflict, although I believe the jury is still out on this.


  8. Hi Raquel,

    If you have no insurance, then you should probably do as so many of us do, and get welding oxygen.  I have been using it for about 7 yrs now.

    Just contact a welding supply house (like Linde or AirGas) and inquire about the cost to rent a 125 to 150 tank or M tank, and how much refills will run.  I initially bought two 150s, and get 2 refills delivered for under $40.  One cylinder lasts me anywhere from 2 weeks to 2 months, depending on the amount of activity.  You will also need a regulator, humidifier (bubbler) and either a non-rebreather mask or mouthpiece.  You can click on the "Menu" button on the left side of this page for more info.

    One other thing -- I would recommend that you not tell the welding supply house that you will be using oxygen for medical purposes. 

    All the best,


  9. Chris,

    You might try taking all 100 at once.  I know some here have had better success with doses of 100 or more seeds.  I wouldn't worry about trying to soak them overnight; 2 hours should be sufficient to extract the LSA.


  10. birdman, try mixing the ginger with tepid water.  If the water is on the warm side, the ginger will dissolve or at least suspend.  Just knock it down quick!


  11. I know that many of you know about using ginger as an abortive for low level hits, but for those of you who don't, here is some advice posted by Pink Shark Mark back in '05:

    "I've mentioned this several times on clusterheadaches. com over the years. For some reason, very few people have commented on it. I came across it in a book on migraines years and years ago. Apparently it's a pretty well-known thing among migraineurs. For some even just drinking ginger ale or eating gingersnap cookies helps.

    "I found that eating fresh ginger root isn't as effective (and it's a lot more of a pain in the butt shredding and dicing it besides) so I stick with the powdered ginger. Health food stores and bulk food places usually have tons of the stuff and it's not that expensive. If you just buy those little spice jars you'll pay through the nose for it.

    "Dosing is simplicity itself -- mix up half a teaspoon of the powdered ginger in some water and glom it down. You'll have to rinse out the glass and drink that as well since the powder doesn't actually dissolve, it just gets suspended in the water. I guess you could just eat the powder directly when it comes right down to it, but I find this method the most convenient. If after ten or fifteen minutes you feel no effect, take another half teaspoon. In my case I have found that if a full teaspoon doesn't work, taking more does no good, but you may be different.

    "I find the effects last between two and four hours, so I usually keep a fair bit of it on hand. Half a teaspoon isn't much, but it adds up over a week if you're taking it four or five times a day.

    "As I say, it does nothing whatsoever once you get to the higher Kip levels, but it's far and away the best thing I've ever come across for handling shadows and low Kip level attacks. As good as Imitrex, actually -- within its limitations. Of course, as with EVERY other medication in our arsenal, it may not work for everyone. But if it works for you as well as it does for me you'll find it nothing short of miraculous. The Chinese claim all sorts of other health benefits from eating ginger on a regular basis but I can't vouch for those -- I only ever use it during the ramp-up and ramp-down of my CH cycles.

    "I have no idea WHY it works. No idea of the pharmacology behind it. I just know it has worked for me ever since I started taking it."


    Also check out the new files that I posted on the "Clusterbuster Files" board.


  12. From the Lancet:

    [highlight]Treatment of medically intractable cluster headache by occipital nerve stimulation: long-term follow-up of eight patients

    Brian Burns MRCPa, Laurence Watkins FRCSb and Prof Peter J Goadsby MDa, c, Corresponding Author Contact Information, E-mail The Corresponding Author



    Cluster headache is a form of primary headache that features repeated attacks of excruciatingly severe headache usually occurring several times a day. Patients with chronic cluster headache have unremitting illness that necessitates daily preventive medical treatment for years. When medically intractable, the condition has previously been treatable only with cranially invasive or neurally destructive methods.


    Eight patients with medically intractable chronic cluster headache were implanted in the suboccipital region with electrodes for occipital nerve stimulation. Other than the first patient, who was initially stimulated unilaterally before being stimulated bilaterally, all patients were stimulated bilaterally during treatment.


    At a median follow-up of 20 months (range 6–27 months for bilateral stimulation), six of eight patients reported responses that were sufficiently meaningful for them to recommend the treatment to similarly affected patients with chronic cluster headache. Two patients noticed a substantial improvement (90% and 95%) in their attacks; three patients noticed a moderate improvement (40%, 60%, and 20–80%) and one reported mild improvement (25%). Improvements occurred in both frequency and severity of attacks. These changes took place over weeks or months, although attacks returned in days when the device malfunctioned (eg, with battery depletion). Adverse events of concern were lead migrations in one patient and battery depletion requiring replacement in four.


    Chris, I think the main thing you need to keep in mind is that like with any invasive process, once done, there is no turning back.

    Wishing you the best,


  13. I have two younger brothers diagnosed ECH.  I was diagnosed CCH from day 1. 

    I can remember my paternal grandmother tying cayenne peppers around her head for her "headaches. She was never diagnosed to my knowledge.

    I have two grown daughters, neither of which have shown any signs of CH to date.

    Just from what I know about my family's health history, I think it is very possible that CH has a genetic component, skipping generations within our family.

    To me, this is a big motivational factor for my involvement, not only with Clusterbusters, but also with research on any treatment or hopeful cure.


  14. Hi Everyone!

    I want to express my sincere apologies for not reading and posting on this new board.  I have no excuse other than the fact that until recently, I have been mostly PF.  I know that is no excuse for not being here and posting, but I was so busy actually having a life, that I didn't want to even think about CH.  The return of activity a couple of months ago, brought me back to reality, so here I am.  And I fully intend to stay active on this board, whether I am active with CH or PF.  With two brothers diagnosed ECH, the reality is that I need to be here not only for them, but especially for my future grandkids.

    I recognize some of you even with the identity changes from the private board.  But there are so many new people here...it's amazing and oh so promising!  A big thanks to Doug and DJ for this incredible board!

    Well, that's about all I've got for now, but I promise you will hear more from me in the future.  There is simply too much at stake.



  • Create New...