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CHfather

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    new to all this

    in General Board

    Posted

    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.

    Another suicide

    in General Board

    Posted

    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.

    Another suicide

    in General Board

    Posted

    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.

    new to all this

    in General Board

    Posted

    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).

    new to all this

    in General Board

    Posted

    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

    Neurontin

    in General Board

    Posted

    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.”

    Messages to Michael

    in General Board

    Posted

    Many of us have watched over the last few months as the situation of Michael (the Lionhearted, son of Bonkers) has worsened, and we know that Michael's about to go through a tough, tough detox from methadone without any help for his frequent, intense CH attacks.  (See hereabouts for more info about Michael's situation: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1265314831/637#637)

    We all hope and believe that in the long run this detox is going to make things better for Michael, but in the short run it's likely to be a very hard time for him, and for his loving dad, too. Most of us know how important the support from others here can be, and I'm suggesting (with Ron's approval) that we might each post here a message of support to Michael, so that he knows directly what we all know to be true -- that he's in our thoughts, our hearts, and our prayers; that he's not alone in this; and that the other side of it is going to be much better for him.  Ron has said that he will either encourage Michael to read these messages himself, or that Ron will print them out for him/read them to him.

    I'll post mine later, but I'm inviting others to go first.

    Thanks,

    Jerry

    Asking differently

    in General Board

    Posted

    Thanks, Cassidy.  Whatever the question was, you have answered it well.  I do have it from a reliable source, however, that occasional small doses of RC for sleeping will not interfere with the use of RC for busting.  (Of course, that probably depends on what "occasional" and "small" mean!)

    Newbie RC question

    in General Board

    Posted

    Great news, Zak!  Here's hoping we never hear from you again, except with occasional reports of your continued success and a brief report reassuring us that you have acquired oxygen, just in case.  If I were you, I would consider the maintenance dose of that D3 regimen, too -- half of what I recommended above. 

    Neurontin

    in General Board

    Posted

    Latest specialist appointment have suggested Neurontin.Does anyone know if this will affect the mushies, she has not taken it yet.

    Neurontin was also suggested for my daughter.  There's a 20-post thread here discussing it, though not directly in relationship to your specific question about mushies: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1300849393

    (I wish we had a better search engine here. I don't understand the limitations of the current one, but if you enter neurontin there it doesn't even take you to this thread, let alone whatever mentions of neurontin there might be elsewhere.)

    Has Booj tried the vitamin D3 regimen?  I'd definitely go that way before taking neurontin.  Here's something I just wrote about that regimen in another thread:

           I think you should consider the vitamin D3 regimen that has helped so many people, which you could start this afternoon and which does not seem to interfere with busting.  Very much more likely to help you than the kudzu, I'd say.  The recommended dosage for treatment during a cycle is 10,000 international units per day (with food) of vitamin D3, 3-5K mg. of Omega-3 fish oil (with food) per day, and a couple of calcium citrate tablets (the kind that are formulated with magnesium, zinc, and sometimes a little D3) a day (not necessarily with food).  Many people find that a glass of lemonade twice a day enhances the effects.  I've just told you the basics, which I think is all you need to know, but you can read more about this approach (and many success stories) at these lengthy threads:

    http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1300245052

    http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/50

    Newbie RC question

    in General Board

    Posted

    Zak, here's a list of doctors in England that have been recommended by people with CH.  It's from http://www.ouch-us.org/chgeneral/doctors.htm

    I don't really understand the National Health system, but if you have the option, maybe it would be relatively easy (or easier) to get an oxygen prescription from one of these.  Can't speak for its currency, since I believe Goadsby, for example, is now in the US.

    Rachel Tudbury

    Watford, Herts

    Dr Dennis Briley

    Princes Risborough, Bucks

    Dr. Sarah Benton

    London

    Dr. E. A. MacGregor

    London

    Dr Robert Hailwood

    Horwich, Bolton

    Manjit Matharu

    London (Queen's Sq.)

    Peter Goadsby

    London (Queen's Sq.)

    Craig Maxwell

    Radlett, Herts

    Newbie RC question

    in General Board

    Posted

    Zak, do you have anyone who can advocate for you regarding the oxygen?  Because for many people it changes everything.  I had to fight not only for, but with my daughter to get her oxygen--she like you had given up on ever finding any help and she just gritted her way through some very severe attacks (8s and 9s) for years, and she didn't want what she was sure was "false hope" from oxygen.  But we got it, after many travails with the system, and it worked beautifully to abort her attacks, and changed--probably saved--her life.  It's the #1 prescription for CH according the European medical standards.  You can read about that and more here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    (This is a page I wrote after dealing with oxygen on my daughter's behalf; it's different from the one Ron referred you to yesterday.  I'd really encourage you to look at it.)

    Maybe someone from this board over on your side of the water will be willing to advise you or even help you.  In the US, welding oxygen can be obtained without a prescription and you can order the additional parts you need (regulator, mask) over the internet.  There's discussion about all this at that link above.  I don't know how that works in Great Britain.

    Because you (like my daughter) don't have a history of using pharmaceuticals that interfere with busting, I'm expecting you to have good success with the D3 regimen (don't forget the calcium citrate formulation and maybe a couple of glasses of lemonade) and with RC.  But oxygen is essential, too, eventually if not right now.  You can get some nasty "post-dose hits" for a day or two from the RC, and it's very nice to have a quick abortive nearby. 

    Newbie RC question

    in General Board

    Posted

    Since it's not really clear whether kudzu interferes with busting (I don't see why it should, but I don't know anything), I'd still consider an initial RC bust now if you have the seeds and you're not on any of the meds that definitely do interfere with busting. Worst that can happen (assuming your reaction to low-dose RC is as mild as most people's) is it won't work. Then eliminating the kudzu before another bust five days from now (Thursday). And immediately starting the D3 regimen.  And working on getting oxygen, if you don't have it.

    Also, chugging a RedBull or other "energy drink" with caffeine and taurine at the first sign of a headache helps many people. 

    Newbie RC question

    in General Board

    Posted

    Welcome, ztc.  The RC is going to help you.

    If you haven't, you should read TommyD's pertinent files in the "Clusterbusters Files" section of this board, starting maybe with "The Dosing Method":  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130612 .  You should read the "LSA" file, too.  And then you should ask questions.

    I have to say that it's extremely rare for anyone to get more than a very mild buzz from the recommended doses of RC, especially the recommended starting dose of maybe 10-20 seeds.  It's also rare for those low doses to have much effect, for most people, on the CH.  You will know yourself best, of course, but I'm thinking Thursday is a long way away and I don't think you'd have to worry about effects at work if you took the dose the evening or night before work. So I'm saying maybe you'd want to do something sooner, if kudzu is all you've been taking and you're "detoxed" from the meds that could interfere with busting (see TommyD's file on "interactions" if you're not sure about this).

    Or (and/or, really), I think you should consider the vitamin D3 regimen that has helped so many people, which you could start this afternoon and which does not seem to interfere with busting.  Very much more likely to help you than the kudzu, I'd say.  The recommended dosage for treatment during a cycle is 10,000 international units per day (with food) of vitamin D3, 3-5K mg. of Omega-3 fish oil (with food) per day, and a couple of calcium citrate tablets (the kind that are formulated with magnesium, zinc, and sometimes a little D3) a day (not necessarily with food).  Many people find that a glass of lemonade twice a day enhances the effects.  I've just told you the basics, which I think is all you need to know, but you can read more about this approach (and many success stories) at these lengthy threads:

    http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1300245052

    http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/50

    You have oxygen, I hope!  If not, that should be another priority for you.

    The great folks here, who understand what you're going through, are very generous with their help.  Ask questions, and, please, keep us informed, since we learn from you, too.  PF wishes.

    Asking differently

    in General Board

    Posted

    Thanks, all, for your thoughtful responses here and at my earlier post.  I really appreciate it.  Unfortunately, neither typical sleep meds such as versions of ambien, nor drowsiness-inducing meds such as klonopin, nor non-pharms such as melatonin or valerian, have really helped her, even at high levels (although for a series of flukish reasons she has not yet been prescribed lunesta -- so I guess we might hope that that would work for her).  I'm at the point where I feel the sleeplessness (or, really, the night-time sleeplessness--she could sleep all day, I think, if she didn't have to work) is taking such a toll on her that--after we demand some lunesta from somebody and see if that works--an RC trial will probably be the next step. Guess she might have to shift busting strategies (or maybe not) if she goes that route.  I'll let you know.

    Again, thanks.

    Jerry

    Asking differently

    in General Board

    Posted

    Given what I wrote in my other recent post about RC, sleep, and my daughter, I am inclined to recommend that she test low doses of RC seeds as a sleep aid, either as SPUT using maybe 4 or 5 seeds, or as an LSA preparation (crushed seeds in water) involving something like 8-10 seeds.  To enable her to sleep would be a huge blessing, a big step toward the "normal" life she's been deprived of.  She's tried practically everything the docs can offer, without any results except the usual unpleasant drug side effects. 

    Does anyone have any experience, or even an informed opinion about (a) using LSA as a sleep aid; or (B) the general advisability of taking LSA in small doses on a regular basis (maybe, or maybe not, every day), or © what the likely effect of taking LSA in small doses on a regular basis might be on busting, if/when her cycle returns? 

    An extra-credit question: I don't know what levels might actually be effective to help her sleep; maybe it has to be a full 20-30-or-more seed preparation.  If she did that every five days or so, do you think RC would soon lose its effectiveness for busting?

    I understand if no one has any ideas about this.  I just want to be sure I'm asking the questions as clearly as I can. 

    Thanks,

    Jerry                            

    Questions for Episodic Sufferers

    in General Board

    Posted

    Solace, you give me a chance to briefly clarify what I was saying.  There are whole diets (dietary regimens) devoted to increasing one's alkalinity.  My daughter, who began about 6 months ago eating very little meat, very little sugar, very few processed foods, etc., now has a highly (but positively) alkaline pH.  She also takes the D3 maintenance regimen, in part because I'm not sure that I'm correct in understanding its primary purpose as shifting acidity to alkalinity.  So my overall point there was not necessarily that you/one should take a lot of D3 on an ongoing basis, as much as it is to say that if being more alkaline/less acidic has these demonstrated benefits for so many people related to CH, maybe there's something to it as a general approach to wellness, and steps like drinking more citrus or shifting your/one's diet toward alkalinity-increasing foods will have general benefits.   http://www.rense.com/1.mpicons/acidalka.htm

    BTW, my daughter's CH pattern was much like the others: tolerable headaches for relatively limited time periods followed by increasingly strong HAs for increasingly long periods.  I think that's fairly typical.  I think they also become less tolerable when you realize that they're likely to keep coming back.  Maybe D3 and all that will change things.

    Questions for Episodic Sufferers

    in General Board

    Posted

    If things continue to go well and I get brave enough, I will bring the supplements down to a maintenance level and report my experience in case this info can help others

    From what I can understand about the D3 regimen, the overall goal is to shift your body's pH from acidic to alkaline, thereby reducing systemic inflammation.  So I think one way to test whether you want to drop to a maintenance level, without as much risk of finding out you weren't ready yet, is to buy some pH test strips and see what your level of acidity/alkalinity is.  They work simply and very quickly with any bodily fluid, and they're not very expensive.  I got mine at Whole Foods, but I suspect that any place with a strong supplements section will sell them.  You might know that there's a lot of speculation that most of our bodies are too acidic (here's one brief discussion of that: http://altmedicine.about.com/od/popularhealthdiets/a/alkalinediet.htm), so maybe it's something you might want to think about in the longer run, for yourself and your family, even when you're out of cycle.  (I'm not pushing this. I didn't know anything about it until I did some reading to learn more about the D3 regimen. But it does feel sensible to me.)

    RC and sleep

    in General Board

    Posted

    Lieutenant2 posted something recently about how well he slept after an RC dose.  Others have written similar things, and it's true for my daughter, also.

    In general, her sleep patterns are horrible.  I know this is also common for others.  So I'm wondering two things: (1) Why is it that dosing with RC so often produces such a sound night's sleep--is there anything useful to be learned from that to help people with CH who have sleep problems? and (2) More practically, does anyone use RC as a regular sleep aid -- SPUT method, maybe, or small doses (5, 6 seeds) taken regularly?  Related to (2), does anyone know whether regular SPUTting or low-level doses would somehow mess up serious busting?  My daughter's inability to sleep at night, even when she's exhausted, affects her life cumulatively about as badly as CH does when she's in cycle.  She's taking some serious stuff now to try to help her sleep, but it's not really helping.

    Any advice/experience would be much appreciated.

    tune for you

    in General Board

    Posted

    CHFather, you click on the link and the Dylan video does not come up? It does when I click on it. Or am I misunderstanding you?

    Yes, when I click on the link there in your post (or paste it into the address bar), I get a YouTube "spotlight videos" page which at this moment offers me a Jennifer Lopez video, a Lady Gaga video, and two other choices.  Weird. 

    But I can find that "Idiot Wind" one myself, surely, if I try hard enough.

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