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CHfather

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Posts posted by CHfather


  1. Good for you, G!  So glad you stuck with it and found a good doctor.  You are right that the tubes you put in your nose (called "nasal cannula") almost certainly won't help you.  I've read of some people who said they did help with low-kip HAs in their early episodes of CH, but it seems like the frustration of trying them might be worse than waiting.  Could you call the company that provided the oxygen and the cannula and tell them you need a non-rebreather mask?  It's a little surprising that the doctor didn't specify that on his prescription. 

    Or maybe you feel pretty confident that your O2ptimask is going to arrive very soon.

    Anyway, again -- congratulations for standing up for yourself and getting what you need.


  2. jc, you'll get plenty of very good advice here.  RC (rivea corymbosa) seeds, a source of LSA, have worked very effectively for my daughter.  Since it is strongly advised that you "detox" from conventional meds for five days before starting "busting" (if you choose to bust), having a good oxygen system is critical.  Let us know how yours is working for you--I presume you can get at least 15 liters per minute of O2 flow and you have a properly configured non-rebreather mask.  Read this to learn more: http://www.clusterheadaches.com/O2/index.html

    You could order some RC seeds--which are legal to buy and possess--now, so you have them when/if you're ready to bust.  If you do use them, you'll probably want to have about 200 seeds (for multiple doses).  You can google to look for places that sell them--there are many.  A lot of people use www.iamshaman.com

    I strongly recommend that you begin right now the simple, inexpensive vitamin D3 protocol that has helped many, many people quickly and also lastingly.  Take about 10,000 international units per day of vitamin D3, taken with food; 2 or 3 calcium citrate tablets per day, with or without food (ideally, these tablets should also contain magnesium and zinc); and 3,000-5,000 mg per day of Omega 3 fish oil, with food. That's it, except that many people find that a glass or two of lemonade or limeade per day with meals increases the effectiveness.  Many people start getting significant relief within a day or two.  The levels I listed above are the "default" levels--you might wish to adjust according to your own tolerance.  These are not "megadoses"--all are within standard recommended daily allowances except the D3, which is high but not inordinately so.  To read a great deal more about the D3 regimen, you could wade through the following thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0

    Also, note that in the "Clusterbuster files" section of this board there are many files, particularly those by tommyd, detailing ins and outs of busting principles and methodology.

    You're starting to get control of this thing, and it will get better for you from here.


  3. Les, you wrote: >>>I am very curious as to the nature of the mechanisms involved in that D3 regimen, though.<<<

    A diligent read-through the D3 thread at ch.com offers some glimpses of Batch's theory about why it works.  I'm going to paste a copy of one message from Batch here.  It's not completely lucid to me, but it gives hints (that raising arterial pH promotes vasoconstriction) and interesting evidence.  There are other discussions within the thread, which begins here:  http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0

    By the way, Les, Batch is, like you, extremely generous with his time and non-dogmatic about what he is learning. He's very open to being contacted by email or by Skype, and I think you two might enjoy communicating. Selfishly, I'd love to benefit from the interaction of your mind and his.

    Batch's post is below. Unfortunately, his chart, which is pretty interesting, doesn't show up. You can see it here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/100

    >>>>>>In an attempt to characterize the role of arterial pH in the pathophysiology of cluster headache triggering and abort mechanisms, I conducted a small test by measuring the pH of my saliva before a cluster headache and five minutes after an abort with oxygen therapy at flow rates that support hyperventilation.  I also did this over a two-week period to see if there were any trends without any overt change in diet.

    I started by collecting saliva pH measurements three times a day as an analog of arterial pH in order to generate a daily average.

    I then measured my saliva pH after awakening with a cluster headache and again following the abort with this method of oxygen therapy plus 5 minutes to allow for the saliva pH to equalize with arterial pH.  The results of this two-week test are illustrated in the graphic below.

    [see graphic here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/100]

    The green line is my daily average saliva pH computed from measurements taken in the morning prior to breakfast, mid-day prior to lunch, and in the evening prior to going to bed.  I rinsed my mouth with water and waited 5 minutes prior to each of these pH measurements to ensure I minimized the effect of any contaminants that could skew the results in one direction or another.  For example if you take a swig of Coke or Pepsi then take a saliva measurement it will read very acidic with a low pH.

    The red dots and lines in the above graphic represent my saliva pH measurements taken as soon as I awoke with a cluster headache and the blue dots and lines represent the saliva pH measurement taken 5 minutes after the abort with oxygen therapy.

    All the cluster headaches occurred while sleeping and were between pain level 3 and 4 on the 10-Point headache (Kip) pain scale. I aborted all of them with oxygen therapy at flow rates that support hyperventilation (35-40 liters/minute) in 3 to 4 minutes to a pain free state.

    I also added pulse oximetry readings starting on Day-7 taking readings at the same time as the saliva pH measurements.  The results are what I expected.  I suspect if I would have had use of a capnometer, I would have seen significantly higher ETCO2 readings than normal upon awakening with a cluster headache.  I also expect these ETCO2 reading would be clearly higher than after the abort with oxygen therapy at flow rates that support hyperventilation.  The reason for the low ETCO2 readings following an abort with this method of oxygen therapy is simple.   This method of oxygen therapy casts of CO2 faster than the body generates it through normal metabolism.

    Days 5,10, and 11 I had no CH.  During the evening of Day 14 I had three CH.  This coincided with the day where my daily average saliva pH was lowest.

    As you can see from all of the nights where I had a cluster headache this method of oxygen was able to elevate the pH of my saliva on every attempt.

    Granted this data is clearly anecdotal with me being the only study subject.  Having said that, the data and results were consistent with what we expected.

    Influencing systemic pH with diet and calcium citrate supplements is a horse of a different color as this process is largely metabolic in nature so it occurs at a much slower pace taking several hours where elevating arterial pH with hyperventilation takes only a few minutes.

    There's enough medical evidence from a few studies to suggest calcium citrate and citric acid from lemonade or limeade acts as a buffer on the stomach's gastric juices and contents to raise their pH from 2.0 up to a pH of 4.9.  There are also a sufficient number of papers claiming a diet of alkaline forming foods can raise systemic pH.  See the following link:

    http://www.naturalhealthschool.com/acid-alkaline.html

    Ultimately, anything that can raise systemic pH to the high end of the normal pH of 7.35 to 7.45 or above should stimulate vasoconstriction and that should help lessen the frequency and intensity of cluster headache.

    Take care,

    V/R, Batch <<<<<


  4. I cannot render any opinion regarding the vitamin regimen. I can only point out that quantities of any substance in excess of what the body can immediately use . . . are excreted, so I don't think the megadose thing is strictly speaking useful.

    Thanks, Les . . . and to be clear, the vitamin D3 regimen does not involve "megadoses," at least as I understand that term.  I'm not sure what would constitute a "megadose" exactly, but the Omega3 and calcium citrate levels are well within recommended daily limits, and the D3, while higher than the RDA, is very, very far from a toxic level.  The D3 level recommended for ending a cycle is 10,000 international units, and the amount used as a possible preventive is 5,000 IUs, whereas the "toxic" level of D3 is generally (though not universally) agreed to be reached when about 40,000 IUs are taken continuously over a period of several months.  20 minutes of full body exposure to sunlight can produce the equivalent of at least 10,000 IU of vitamin D3 in fair-skinned people, so many people who are active outdoors get considerably more D3 than this regimen calls for.  One can buy capsules of 50,000 IU of D3--now, that seems like a megadose!


  5. My own personal but informed bias is that melatonin is ineffective; it affects sleep patterns but that is not the problem. Altering your pH, ditto.

    Les, do you have an idea of why the D3 regimen, which is aimed at altering pH (or at least tested by way of altered pH), seems to work so well for so many people, for lasting periods?  And for that matter why oxygen, which doesn't affect the hypothalamus (does it?), works?


  6. I have been on the tablet form of Imitrex

    Geisha, this might also speak to some shortcomings in your doctor's understanding of CH, since it's my understanding that imitrex pills do not act quickly enough to really help with CH (in contrast to injections).

    Have you read about the vitamin D3 regimen that has helped a lot of people (though not everyone)?  It's something you can do while busting (though maybe you just want to get oxygen, detox from the meds that probably aren't helping you anyway, and then bust).  The D3 regimen is 10,000 international units per day of vitamin D3, taken with food; 2 or 3 calcium citrate tablets per day, with or without food.  Ideally, these tablets should also contain magnesium and zinc.  3,000-5,000 mg per day of Omega 3 fish oil, with food. That's it, except that many people find that a glass or two of lemonade per day with meals increases the effectiveness.  There's a long and winding thread on this topic at ch.com, but what I have told you are the basics. http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0

    At the least, you might want to try the preventive D3 regimen after you've ended this cycle--it's half of what I listed above.  It is working very well for many people.


  7. Geisha, we all hope that things are going to turn better for you soon.  If your doctor hasn't already prescribed oxygen, it's a little worrisome in terms of his/her level of understanding of CH.  Please be prepared not just to ask for it, but to insist on it in any way you can.  Sometimes during a cycle people with CH aren't at their strongest, so you might consider having someone come with you to the doctor to advocate forcefully for you.  There's a lot of information about oxygen, some of which you might want to provide to your doctor in advance of your next appointment (or at the appointment), here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790


  8. If I dose with 50 seeds at say 9 pm at night, is there any reason i wouldn't be able to work my 12 hour shift starting at 8 am the next morning? 

    I agree with Ting that it's highly unlikely that your nighttime dosing will have any effect by the next morning.  As she also says, the post-dose hits can be troublesome, and can come at different times than you're used to.  My daughter got a mid-day doozy the day after her first dose--first and only time she ever got hit mid-day.

    And again, I don't want to overcomplicate this, but it is often suggested that your first dose might be smaller than what you'll take later.  Small doses can and do work (I'm not sure that there's a correlation between dose size and effectiveness, as long as you've taken enough to get the LSA stuff into your system), and they give you the chance to see how a dose affects you.

    Sorry to be so iffy, but it's the nature of the dosing challenge with seeds.


  9. Gump, are you also doing the Omega-3 fish oil (3K-5K mg/day with meals)?  I think if you're gonna do this D3 regimen, you probably want to do it all.  And a lot of people swear by the addition of a glass of lemonade/limeade with breakfast and dinner.

    I'm not one to prescribe, and I don't think anyone really knows what RC dosages are optimal, but I think you might want to take more than 25 after your first dose, even as much as 50.  As I've mentioned here, my daughter was quite happy where she ended up, which was 60.  In any event, if you decide to take more on your second dose, you'll have time to order additional seeds for your third.

    We're rooting for you!


  10. Michael, thank you for this very thoughtful note.  Like you say, it's all a team here, all US.  In this case, all I had to do was snap the ball and run to the sidelines while everyone else did some blocking and you carried the ball.  Every single person here is a Hall-of-Famer in my book.

    Heck, that reminds me of something I read once, which I'll paste in here just because I feel like it.

    >>>>Earl Campbell was an astonishingly good football player, very strong and very fast. He won the Heisman Trophy, awarded to the nationÂ’s best college football player. There is a nine-foot-high statue of him outside the University of Texas football stadium. ESPN has rated him as the twelfth-best college football player of all time.

    In his first year of professional football, he won honors as both Rookie of the Year and as Most Valuable Player. He went on to lead the league in rushing yardage the next three years and garner many awards. After his career ended, he was voted into the Hall of Fame.

        Campbell played most of his NFL career for the Houston Oilers, where his head coach was Andrew “Bum” Phillips, who was known for his folksy communication style. Phillips once remarked, “Earl Campbell may not be in a class by himself, but whatever class heÂ’s in, it wouldnÂ’t take long to call the roll.”

        One year the OilersÂ’ trainer instituted a practice very common throughout sports at all levels: he required all players to run a mile within a designated time. Campbell, whose thighs were thirty-five inches around and who carried about 240 pounds on a five-foot-ten-inch frame, was not built for distance running. Although he was determined, he never could complete the run on time.

        Reporters came to Phillips demanding to know what he was going to do about his star player who could not fulfill one of the teamÂ’s requirements. “Well, if itÂ’s fourth down and a mile to go,” Phillips answered them, “I guess weÂ’ll have to give the ball to someone else.”<<<<<

    If it was fourth and a mile, I'd give the ball to you.


  11. Michael, thanks so much for posting this, and for allowing us to see for ourselves that you are exactly the kind of young man your father has described you as being.  Believe me, your perseverance and your grace have already powerfully affected a lot of lives, including mine and my daughter's.  It's an awful, awful thing that so much of your young life has been robbed from you by CH, but between you and your father, and with advances in understanding and treatment of CH, that's just not going to go on too much longer--and you'll soon be making up for lost time with a joy and awareness and gusto that will leave your peers in the dust. It's gonna happen. Nobody will be more deserving of a great, happy, fulfilling life than you, and nobody will be happier to see it than all of us who think about you every day.

    Jerry


  12. Bob, your body size doesn't really affect how much RC you should take (since it works in your brain).  And the fact is that no one really can predict how much LSA (active ingredient) you'll get from any given number of seeds, because the LSA content of seeds can vary quite a lot.  What is known (obvious though it is, it's worth mentioning) is that people whose CH doesn't respond to seeds usually have taken too little.

    On the other hand, too much of it might cause psychedelic effects, which most people do not desire--they're looking for treatment for CH, not a large or sustained "high."

    So, you have to go by feel.  Many people start with a small dose, maybe 10-15 seeds (fully ground up (most typically with a mortar and pestle) and soaked in water for an hour or two). Some people get CH relief from doses this small.  Others work their way up to 50, 60, or more seeds. (My daughter, who weighs about 110, uses 60.)  Even at those larger levels, you're not likely to experience more than the equivalent of a two-beer buzz.

    So I would say -- others please add your opinions! -- that you might start with 20 seeds, as long as you are comfortable with the (very remote) possibility that you might experience some psychedelic effects, and therefore you are attentive to the usual issues of set and setting.

    Many people experience "post-dose hits" in the days after their first dose or doses of seeds.  Those can be more severe than the person's typical headache, and/or they can come at odd times, such as during the day when typically they get them at night.  They indicate that the LSA is working--but they still hurt and can be disconcerting.  So be sure your aborting ducks are as lined up as possible.

    I hope this helps--and I hope others will correct any errors in what I've said and add their own insights.


  13. I have a lot of ideas about a lot of answers to a lot of the questions raised here.  I'll suggest three things (again, mostly).  The important caveat here is that I have no idea what OUCH or other organizations are actually doing, and I may well be assuming that it's considerably less than it actually is.  I apologize for jumping up on this soapbox from time to time.

    1. I am really hoping that the NatGeo folks will stage a full-blast campaign for the show that includes CH, and that that might include getting Dan and Bob Wold and others onto the talk-show circuit talking not just about psychedelics to treat CH, but about CH in general (and also making a youtube video of CH-related clips, starting a social media campaign, etc.).   I must say it's a little hard for me to fully understand why Entheogen wouldn't want to partner in a campaign like that, but they might see it as beyond their fiscal role (or maybe they are participating).  The question would be, if there is such a campaign, how could we (and our families, friends, neighbors, churches, temples, civic associations, etc.) help? 

    2. I would like to see a google ad that pops up every time someone is doing a search for "cluster headache" and/or maybe for some key cluster headache symptom(s), that leads people to a simple page about oxygen for CH and maybe links to ch.com.  Not selling anything; just a public-service ad.  I don't know what this would cost, or whether google might take it on as a charity, or whether money could be raised for it somewhere online (crowdrise.com, for example).  Maybe such an ad would be no more effective than where googling CH now leads you, which is to the wikipedia page about CH that certainly mentions oxygen . . . but it's an idea.  Maybe that page I'm thinking of would have the names of recommended physicians (OUCH has such a list, though of course it's only partial), and maybe those physicians would help in some small way to underwrite it. 

    3. I had mentioned in an earlier thread about how my good friend who is an ovarian cancer survivor now is invited to med schools to speak to students about the importance of early detection of ovarian cancer.  Last week she was in Chicago as part of a team from the Ovarian Cancer National Alliance (OCNA), attending an oncology convention with 30,000 doctors and other medical professionals in attendance.  The OCNA had a booth, hosted a reception, gave out an award, and leafleted everybody who was there.  Doggone it, I thought, why isn't something like that happening for CH at big neurologists' or headache specialists' or even family-practice docs' conventions?  (For all I know--to say this again--maybe it is being done. Clearly, it costs money. But there are 20,000 new ovarian cancer diagnoses in the US every year--not a huge number; probably not many more than CH cases per year--and they come up with the money. Local OCNA chapters do fundraising, among other things.)

    And here's a 4.  I was listening not long ago to a radio interview with a very successful war correspondent and war novelist, Philip Caputo, who told the story of having his leg amputated without anesthetic after an incident in some war zone.  Somehow I think it was in Iraq.  Caputo was saying how the horrifying pain of that experience taught him a lesson about being callous to other people's suffering.  Of course, I thought of Doctor Halpern's description of CH pain being equivalent to having a limb amputated without anesthetic.  So I googled Caputo, thinking maybe he could be induced to talk about/write about CH in some way -- and what's the first thing I come to but him and a college classmate/friend of mine being interviewed about their war novels! (My friend's Vietnam novel, Matterhorn, got a lot of praise last year.)  So there I was, with this great idea and this potential connection (don't know whether my friend of many years ago would be inclined to put me in touch with Caputo or not, but I figured he'd probably at least hear me out) . . . and no real idea what to do with it, because I figure you need orchestration and purpose to do something like this, and I'm not in the position to provide it.  So I put that aside, as I put aside many of my "big ideas" (though some I have passed on to people I think of as being in a position to act on them), and go back to doing what I can at this board.  But I'm willing to bet that if someone asked for them and if people felt they might go someplace, we could have 20 or 30 or 50 much better ideas than mine for someone to act on, and that many folks here would step up to the plate and help.


  14. And then there's the even simpler, more basic tragedy that this poor guy probably never even learned about oxygen, or maybe he got a prescription for some low-flow regulator with a cannula and decided that oxygen didn't work for him.

    Or that, as you so often say, BOL is out there but beyond the reach of people like him.

    Or maybe he never even got properly diagnosed in the first place.

    "He" being the stand-in for the scores of thousands of people that we know are suffering needlessly beyond human tolerance.

    I was wondering yesterday what it would take to get every church denomination in America to provide every church with an insert for a church bulletin about "suicide headaches" and their treatment.  Forgive me if this is sacrilegious, but I was thinking yesterday about how much is made of Jesus's terrible suffering and how it was nothing compared to what people with CH go through.  Maybe you wouldn't put that part in the bulletin, or the part about psychedelics . . . but sources for information.  I will follow up on this with my denomination and let you know what happens.


  15. Bob, in order to use RC seeds (rivea corymbosa--not morning glory) it is believed that you have to be off the other meds for at least five days.  That's why you want to be sure that your abortive systems (oxygen, RedBull, maybe ice packs or other strategies ...) are working as well as possible for you.  I'm not familiar with Zomig, but if they are pills, they probably aren't helping you much.  It's the verap, which might be helping, that might be hard to let go of.  And you really should try the D3 regimen, which might make a big difference in making your symptoms tolerable or maybe even eliminating them (and you don't have to "detox" from other meds to start on the D3).

    Results from RC vary widely from person to person.  We just saw one person become pain free (at least for some period of time) with what seem like "small" doses -- one of 11 seeds and one of 15.  For others, it takes more seeds and more doses.  Doses are recommended to be at least five days apart.  Here are some places where you can get seeds:

    http://www.ethnobotanicals.com

    http://www.iamshaman.com

    www.psychoactiveherbs.com

    www.shamansgarden.com

    But you gotta do some reading and research on your own, because you have to take responsibility for this treatment.  Here's one of tommyd's files -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130612

    There are others there in the "Clusterbuster files" section that you should also read (for example, the one with the title "LSA" -- LSA is the "busting" ingredient in RC seeds).


  16. So sorry to read this, Bob . . . hard as it is to believe, you are "lucky" in having received a quick diagnosis, having gotten oxygen, having access to a neuro (if s/he is a good one), and having discovered this board, where you will get lots of help.  You are way ahead of the game, and even though everyone understands why you are scared and confused and how very scary and confusing it can be, you're on your way to taking control of your situation.  Yes, your cycle will almost certainly end--not many people start out with chronic CH (many people don't ever go there--and even chrocic CH can be managed).

    Others here will advise you about alternatives to the verapamil.  "Busting" with RC seeds worked very well for my daughter, and we can discuss that more.  You can read more about "busiting" in the "clusterbuster files" section here, particularly in the great files posted there by tommyd.  For now, I would suggest that you consider three relatively simple things:

    1. Try drinking a RedBull or other "energy drink"--something high in caffeine and taurine--as soon as you feel a CH coming on (or as soon as one awakens you). That helps a lot of people.

    2. I think you should start on the vitamin D3 regimen that has helped a lot of people.  It's generally very safe (though you might check with your doctor) and inexpensive.  In essence, start taking about 10,000 international units per day of vitamin D3. You could take more (some folks take 20K IU per day), but high dosages for extended periods are not recommended. You should take it with food.  You can take it all at once or in two 5K pills (or whatever denominations you can get).  Also take two or three calcium citrate tablets that are formulated with magnesium and zinc (and maybe some other things, including a relatively small amount of additional D3).  The recommended dosage of these is 2 or 3 tablets per day.  You don't have to take them with food, but you can, of course.  And also take Omega 3 fish oil capsules, roughly 2-3,000 mg per day.  Others who are on this regimen also drink a glass of lemonade once or twice a day, with meals.

    There are substantial success stories here and elsewhere with using this method.  You can read a great deal more about it in a long, somewhat complicated thread here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/50

    I recommend at least skimming that, because you see success stories and individual variants.  There's also a thread here at Clusterbusters, with less detail but still worthwhile: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1300245052

    3. You say your O2 "seems to help a lot."  That's great.  If you're aborting relatively quickly (within 10 minutes or so) with your O2 (which I assume is at least a 15 liters per minute flow using a non-rebreather mask), you probably don't need to hassle with that now (and I see that money is an issue).  Many people, however, swear by the O2ptimask.  You can read about having a good oxygen setup here, and at the end of this file there's a list of where you can order various components, including the O2ptimask (I will add the note note that increasingly, evidence is showing that higher flow rates of 25lpm or more result in quicker aborts, though as I say this might not be something you have to worry about now.)  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790


  17. Scott, here are some things that Les wrote at that long thread about licorice root.  Knowing Les, I suspect he'll give you a more detailed answer at some point:

    Genser said, “Single dose busting with real psylocin indole followed by tincture use as an abortive would probably work pretty well. . . . If you try the tincture and it doesnÂ’t work for you, it will clear your system in eight hours or less if you want to bust with shrooms.  Licorice has a short half life compared to pharmaceuticals.  I have no experience in knowing whether going from hallucinogens to the tincture would require waiting.”

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