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CHfather

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Posts posted by CHfather


  1. But I could call at anytime and O2 will be delivered to my house. 

    Oscar, I would recommend not waiting until you're back in cycle (if you ever are) to get your oxygen set up.  So many frustrating problems can occur during the set up phase (see some described in this document: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790) that it's best not to have to deal with them while you're having headaches.

    Thank you for your great messages at this forum, for your inspiration, and for stepping in to help others.  You are greatly appreciated.


  2. No slinking required, DB -- happens all the time.  We're just very glad you're back.  I'm not sure what you mean, regarding oxygen, about "printing out the information from here," but what you definitely should be showing your neuro are the studies and reports from medical organizations that prove beyond a doubt that oxygen aborts cluster headaches, without side effects.

    I'm going to paste something from a longer file about O2.  You can read the whole file here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    >>The effectiveness of oxygen as a CH abortive has been demonstrated in controlled medical research, and reported in prestigious journals.

    “High-Flow Oxygen for Treatment of Cluster Headache” Journal of the American Medical Association  http://jama.ama-assn.org/content/302/22/2451.full

    “Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results from the United States Cluster Headache Survey” http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-Vie...

    In addition to looking over these documents yourself, I suggest that if your doctor is not receptive to prescribing high-flow O2, or if you don’t know if s/he will be receptive, you might print these out and provide them to the doctor in advance of your appointment.  Or at least bring them to your appointment—doing that helped my daughter finally get what she needed. (Some other “Thoughts about Talking to Your Doctor” are included toward the end of this file, in item 9.)

    Note also that based on this research the European Federation of Neurological Societies lists inhalation of oxygen as the abortive of choice for cluster headaches in its official guidelines.  The guidelines state: "The first option for the treatment of acute attacks of cluster headache should be the inhalation of 100% oxygen with at least 7 l/min over 15 min . . ."  (It also lists sumatriptan injections.)  You can read the guidelines here: http://www.guidelines.gov/content.aspx?id=10471 .  7 liters per minute is widely considered to be too low of a flow, however -- and the summary chart of recommendations within the guidelines says 15 lpm.<<<

    I think you are best off trying to use this kind of information to get oxygen.  If you choose, you might read the whole file, since the problems of getting a proper setup are often not over even when a doctor agrees to prescribe it.

    Also, on this page -- http://www.ouch-us.org/chgeneral/doctors.htm -- you'll find lists of doctors recommended by people with CH.  Often they will be more likely to understand oxygen and prescribe it.  Maybe there's one near you.

    Like I say, welcome back!


  3. zenchow, my daughter had 8s and 9s for several years (episodic, so we're talking about a total of a year or more) with nothing at all to treat them, except that sometimes she would chew on coffee beans.  oxygen and busting saved her life (and D3 now seems also to have been extremely beneficial).  some of us have a superstition about a jinx related to talking about being pain-free (PF), so i will only say that her life is completely different now.  you will make it. you will make it.


  4. thoro, the thing that's weird about the busting alternative, of course, is that if it was legal if would be the first preventive anyone tried, not the last.  Effective for most people; no real side effects . . . What more could you want?

    I suspect that some of our wonderful Scandanavian members might have advice for you about how to get busting materials.  We can all follow up then on specifics, based on what you decide.

    So many people have come here in the condition you're in and been returned to a very, and often completely,  normal life.  There is no reason why that won't also happen to you.

    I would also 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.  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

    Best wishes for pain-free days ahead.  Stay strong; it's going to get much better for you.


  5. zenchow, i think everyone here can understand how you feel -- the pain, the fear, the exhaustion, the wooziness.  it's horrible.  AND IT WILL GET BETTER.  it might even become just a distant memory to you.  the oxygen will start changing things, and busting will almost certainly take care of the rest. 

    bejeeber is right -- order some rc seeds now.  they're not very expensive.  maybe you can also go for overnight delivery, or some relatively rapid delivery methods.  rc will do the job: in fact, to slightly disagree with bejeeber, there are some who think that lsa (the active ingredient in rc) is more potent or effective against ch than mushrooms.  our fearless leader, psiloscribe (bob wold), has said as much.  the problem is that it's hard to be very precise about dosing with rc because the seeds' strength varies, but if you take enough, that's not a problem.  i just don't want you to think that rc is a "second class" or "second rate" busting method.  here are some sources for seeds:

    http://www.ethnobotanicals.com

    http://www.iamshaman.com

    www.psychoactiveherbs.com

    www.shamansgarden.com

    and here are the names of some doctors who have been recommended by people with ch.  they might be your best bet for finding someone who understands ch and might help you get oxygen:

    Fayetteville:

    Dr. Joseph R. O'Connell (PCP)

    FirstCare Fayettevile North

    Fort Smith:

    Dr. William L. Griggs

    Southwest Neurological Institute

    Dr. Duane L. Birky

    Sparks Neurology Center

    Van Buren:

    Dr. R. Wendell Ross (PCP)

    Summit Medical Center - Cornerstone Clinic

    i'm sorry the D3 doesn't seem to be helping you, but i'd stick with it because it might kick in.  it's been quite good for quite a few people.

    know you have understanding friends here who will do all they can for you.  it's gonna get better.


  6. Just for future reference, there's an amazing number of books completely available for reading online at google books. http://books.google.com.  This particular book, however, is not available.  When I was compiling some links for this site, I found a bunch of books on google books (not recommending any of these, but here in case anyone's interested in seeing them). These, as you can see, are old . . . but there are lots of newer ones there also, so if it's something I just want to skim, I always look at google books to see if it's there.  Sometimes the whole book appears; or else you can use the search bar to find specific things you're looking for.

    LSD : A Total Study (1975, 900 pages)  Searchable at http://books.google.com/books?id=YFdqAAAAMAAJ&q=Lsd:+A+Total+Study&dq=Lsd:+A+Total+Study&hl=en&ei=nPkTTfzVDMH7lweXgYXkCw&sa=X&oi=book_result&ct=result&resnum=1&ved=0CCMQ6AEwAA

    Brain Systems, Disorders and Psychotropic Drugs  (1987, 556 pages) Searchable: http://books.google.com/books?id=VvZsAAAAMAAJ&q=Brain+Systems,+Disorders+and+Psychotropic+Drugs&dq=Brain+Systems,+Disorders+and+Psychotropic+Drugs&hl=en&ei=CPoTTb2zHcOclge5lNy6BQ&sa=X&oi=book_result&ct=result&resnum=1&ved=0CDMQ6AEwAA

    From Neuron to Brain : A Cellular and Molecular Approach to the Function of the Nervous System  (1992, 808 pages)  Searchable: http://books.google.com/books?id=2A5rAAAAMAAJ&q=From+Neuron+to+Brain:+A+Cellular+and+Molecular+Approach+to+the+Function+of+the+Nervous+System&dq=From+Neuron+to+Brain:+A+Cellular+and+Molecular+Approach+to+the+Function+of+the+Nervous+System&hl=en&ei=8voTTaa5BIKdlgfK0tXWDA&sa=X&oi=book_result&ct=result&resnum=1&ved=0CCgQ6AEwAA

    Neuropharmacology of Serotonin (Oxford Medical Publications)  (1985, 300 pages)  Searchable: http://books.google.com/books?id=K49FAAAAYAAJ&q=Neuropharmacology+of+Serotonin&dq=Neuropharmacology+of+Serotonin&hl=en&ei=VfsTTeeiJYXGlQf-442CDA&sa=X&oi=book_result&ct=result&resnum=2&ved=0CDAQ6AEwAQ

    Storming Heaven : LSD and the American Dream  (1998, 416 pages)  Searchable  http://books.google.com/books?id=clFOY2-E6CcC&printsec=frontcover&dq=Storming+Heaven:+LSD+and+the+American+Dream&hl=en&src=bmrr&ei=y_sTTYmNFoG0lQffs7TGDA&sa=X&oi=book_result&ct=result&resnum=1&ved=0CCwQ6AEwAA#v=onepage&q&f=false

    LSD, My Problem Child  (by Albert Hoffman; 1980, 209 pages)  Searchable: http://books.google.com/books?id=e5wQAQAAIAAJ&q=LSD,+my+problem+child&dq=LSD,+my+problem+child&hl=en&ei=NvwTTZ9YhaCUB9-vqIEM&sa=X&oi=book_result&ct=result&resnum=2&ved=0CC0Q6AEwAQ

    5-Ht Agonists As Psychoactive Drugs  (1988, 308 pages)   Searchable: http://www.google.com/search?tbs=bks%3A1&tbo=1&q=5-Ht+Agonists+As+Psychoactive+Drugs&btnG=Search+Books

    50 Years of LSD : Current Status and Perspectives of Hallucinogens : A Symposium of the Swiss Academy of Medical Sciences, Lugano-Agno (Switzerland,)  (1994, 238 pages) 

    Searchable: http://books.google.com/books?id=3s5vkfmXKNUC&printsec=frontcover&dq=Fifty+Years+of+LSD:+Current+Status+and+Perspectives+of+Hallucinogens&hl=en&ei=6_wTTeXMCYL7lwfwhPiHDA&sa=X&oi=book_result&ct=result&resnum=1&sqi=2&ved=0CCMQ6AEwAA#v=onepage&q=Fifty%20Years%20of%20LSD%3A%20Current%20Status%20and%20Perspectives%20of%20Hallucinogens&f=false


  7. I wouldn't describe myself as bored, Les, more just concerned (where's Mystina, too?), but I appreciate the thought and the stimulation.  I'd only add that there's another reason, in my opinion, why the medical complex thinks that verapamil and other drugs are effective CH treatments, which is that they prescribe them and then people don't come back.  So, must be working, right?  I remember once reading some study saying that doctors believe they are treating CH effectively, and I figured that must be the only reason why.  How many people have gone on to busting or licorice root or D3 or kudzu or melatonin or whatever and found that it's better relief than what the doctor gives them, or have chosen only to rely on O2 and energy drinks . . .  or, tragically, have given up altogether?  I'm pretty sure most don't then spend the money to "educate" their doctors about the failures of conventional treatments and the superiority of whatever alternative they have found, or if they've essentially given up, don't choose to get back on the drug roller-coaster.

    I tell every medical professional I meet (way too many!) two things: (1) about CH symptoms (so they're less likely to misdiagnose) and about O2; and (2) that I once had terrible bouts of "idiopathic" pancreatitis -- boy, that hurts, though not like CH of course -- that I finally, after five years, figured on my own out were caused by MSG.  In both cases, the usual doctor's response is a kind of bored, let's-get-back-to-the-subject tolerance of my rants, but at least they've heard me and, who knows, it might help somebody some day.


  8. 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.


  9. 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.


  10. 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 <<<<<


  11. 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!


  12. 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?


  13. 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.


  14. 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


  15. 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.


  16. 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!

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