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Posts posted by CHfather

  1. 20 seems a low dose to me
      Since you're getting what look like slapbacks, I'd say 20 was a fine dose.  Not long ago, 20 (or even fewer) was the recommended first dose, and some people here have busted successfully with 10.  If you had no undesirable reactions from 20, you could up the number next time if you want to, just to be on the safe side.

    I can't really comment on the other effects, but others probably will.  A new thread, as Purp suggests, is a good idea.  Ginger tea helps many people with shadows, as do "energy drinks" such as RedBull and Monster.

  2. iPain, when your O2 is set up, be sure you're using your mask properly.  Here's the recommendation from http://www.clusterheadaches.com/O2/index.html

    >>>Notice the little round white disks on the side of the mask.  These control the exhaled air, and the outside air.  If there is not one on each side, either tape over the other one, or (as I do) place your thumb over the holes, during an inhalation, and then remove the thumb during an exhalation.  If these valves are not present, or in good flexible condition, you will not get the full 100% oxygen that is required....If you are male, and have facial hair, you may have trouble getting a full seal around the mask.  You may want to just remove the mask, itself, and breathe straight from the plastic valve mechanism.<<<

    Eventually, you might want to get the O2ptimask, which is made specifically for people with CH and is very highly regarded.  http://www.clusterheadaches.com/khxc/index.php?app=ccp0&ns=catshow&ref=LifeGas

    A lot of people here have said that drinking ginger tea helps them with shadows.

  3. B, just a couple of quick thoughts.

    1. You should probably send a PM (private message) to Les to get answers to your licorice root questions.  Can't say for sure that Les will respond, but here's the way to send that PM: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=imsend;to=464F59754D4F44594F582A0

    2. (This actually should be #1)  Since your new PCP didn't know the difference between TN and CH, you want to see a headache specialist ASAP. (Not just a neurologist, but preferably a headache specialist.)  If you have CH, you will, as you say, want to get oxygen prescribed right away.  For most people, it's a very effective abortive.  But there are other conditions that look like CH but are something else, and require different treatment.  So a good diagnosis is absolutely essential.  Here's a US list of doctors recommended by people with CH: http://www.ouch-us.org/chgeneral/OUCH%20DOCS%20-%20US%2001-27-2012.pdf

    There are separate lists of Canadian and "worldwide" doctors at the same site.

    (BTW, my daughter lived with a TN diagnosis for several years before we researched and found she had CH, not TN. Also, in the beginning, my daughter's experience was like yours -- she could just endure her attacks, which didn't last too long.  Then they stretched to hours.  So get on top of this now.  We're all hoping that a "cure" is on the horizon, but in the meantime, you want to be fully armed.)

    3. There are some documents in this file that might help your PCP--if you want to go back to him/her and request oxygen--to understand how fundamental O2 is for treating CH (you could print out the JAMA article and bring it with you, for example): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    4. Did your doctor prescribe anything for the TN?  Some drugs prescribed for TN (such as the antiseizure drugs Neurontin and Lyrica) can also sometimes help with CH.  Not many people would recommend them, if only because the side effects are so awful, but you might consider trying them if you feel the need for something in the short run that might help.

    5. Smoking isn't good (in case you were wondering :)), and some people (including Les Genser) argue strongly that stopping smoking is important for a systematic treatment of CH.  So quitting is a good idea.  But most people who have quit have not found that it affected their CH much.  Alcohol is a much more common trigger, but lots of things are triggers for lots of people.

    5. If your system can handle it, drinking an "energy drink" at the start of an attack can be quite effective for quelling them.  RedBull or Monster, for example -- something high in caffeine and taurine.

    Good for you for finding this site and reading and asking questions!  Keep it up.  The great folks here will help you.

  4. Anyway, anybody have any thoughts on Depakote?Thanks!

    You may get some fresh thoughts on depakote here, but if you type it into the search bar (top left), you'll see quite a bit about it -- most not positive.

  5. How stupid of me! I didn't realize that RC seeds were actually flowers! If its similar to morning glory then I can def get it because I think my mum has planted morning glory in our garden! But please let me know, how are we supposed to take it? 

    You probably don't want to use the seeds that are meant for planting in a garden, because they're often treated with some nasty chemicals (others please correct me if I'm wrong).  Longshot:  I have read that there is a Pakistani strain of Hawaiian baby woodrose: maybe someone's growing that and you can snag some seeds???  Meanwhile, check with tranceplants, allsalvia, etc.

    How to take them.  General instructions here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

    Some specifics in this recent thread: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1329318355

    You might be able to use morning glory seeds.  I assume the "fresh" ones from growing plants are safe.  See the posts after that "LSA" file I linked you to.  Ricardo's the main man on morning glories, so maybe he'll pop in here, or you can PM him.

    When it comes time, check in with us.

    Recently a person here said that RedBull made his heaches worse.  That's the only person I've ever read saying that -- for most people, it helps a lot.  That fellow said that on the other hand Monster did help him.

    There's a "proper" mask and there's a really good mask, the O2ptimask.  Worth considering.  See the file I linked you to.

  6. Isnt there a floating seeds trick I should do first to filter out the bad seeds?

    Yes, you can do that.  Then get rid of/replace the floaters.  Then pat dry all the seeds.  Then grind, then soak, then drink.  Don't grind with anything that gets too hot (e.g., coffee grinder).  I think the typically preferred method is more "crushing" than grinding -- with a mortar and pestle, for example -- but a hand-operated spice grinder is also fine.

    There was a time when 50 was considered a high first dose.  I guess we've seen enough now to think that it's unlikely that you'll really "trip" at all from that number of seeds.  I think around 35 is still the recommended first dose (up from about 20-25 when I first got here 18 months ago), but if you're comfortable with 50, go for it.

    Let us know how all this, and/or how the licorice root, D3, etc., goes.  Are you off the verap now?  If not, you might want to start with D3 rather than licorice root, and heed the verap procedure related to D3.

    Also -- you have oxygen?

    PF wishes!

  7. [edited: well i see purp is right in top of some of this.  nice going, purp!! thanks.]

    well, RC seeds are very light, so if they are legal to receive, the shipping cost from anyplace would not be very high.  you might try contacting the very helpful folks at www.tranceplants.net

    thay are in canada, there's also, in england,  http://www.allsalvia.co.uk

    is your oxygen flow rate at least 15 liters per minute, and do you have a non-rebreather mask?  if yes to both of those, many people find that they need flow rates that are higher than that, or that a top-quality mask helps a lot.  you can find more about that here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    whooligun mentioned some other things that have worked for many people, including licorice root and vitamin d3.  you can read more about those things here:

    d3: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    licorice root: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

    have you tried drinking an "energy drink," high in caffeine and taurine, at the start of an attack?  that helps a lot of people (in the US, the typical brands are redbull and monster).

    hang in there; it'll get better!

  8. We have a friend who is a Vedic (Hindu) astrologer.  Asked him to do my daughter's chart.  He said, "Boy, her head sure is messed up.  Right side."  (Yep.)  He suggested that I arrange for an ashram to offer up mantras for her.  I called the ashram, and the woman said they'd want to do her chart first, to decide which mantra to do.  When she called me back, she said, "Poor dear, she must be in a lot of pain."  (These shouldn't be taken as two separate confirmations, I suppose, since they both were looking at the same data with the same basis for interpretation.) 

    Another friend of ours can see people's auras quite clearly. (Scoff if you will; if you heard more, maybe you wouldn't.)  He told my daughter that she had the second most beautiful aura he'd seen, full of philosophical wisdom.  (He didn't say anything like that about me or any of the roughly twenty other people we know who have seen him.  That was before my daughter's CH got really bad.  I suspect that today he would see the pain, too.)

    Just data.  Who knows?  But I don't discount the idea that some cosmic force makes arrangements for when we'll come into the world, what we'll deal with, and what resources we'll have to deal with it all.  This gives me no comfort at all in the face of my daughter's suffering, but maybe it could or should.  (Since this would apply to all of us, it would mean that we loved ones are where we are for a reason, too.) 

    (And, yes, I think the ashram's prayers did help, but busting's a whole lot cheaper. Those monks don't come cheap.)

  9. Yes, some seeds are prepared and then consumed as a busting element.  They generally aren't used to stop an attack (pain relief), but as a preventive, taken over a period of time, five days apart.  This file will give you the basics, and walk you through the process, as you request: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

    You'll have to get the seeds (easy to order on the internet) and you'll probably have to be off the meds your doctor has given you for five days.  Buying and possessing the seeds is legal; consuming them is not.

    After you've looked at that file, get back to us.  Plenty of folks here who will help you.

  10. One thing to note about this, Ricardo, is that while the article was first published online in 2005, it was originally published, in the same journal (Headache), in 1983.  I'm gonna suspect that Flash is right, and that the fibrosis risk was considered too great. (Also, lisuride did poorly against CH in one trial, in 1989, which probably also discouraged further investigation.) On the other hand, here's one positive take on methysergide--for people who are episodic--from a 2011 headache handbook (no mention of lisuride in the book at all, as far as I can tell). I can't copy the passage, so here's the link, which I hope will work (It's from Google books, which is a great research resource.)  http://books.google.com/books?id=kBgBiLdLSTMC&pg=PA348&dq=methysergide&hl=en&sa=X&ei=i3s4T5K6HoXw0gGf0-D0Bw&ved=0CFkQ6AEwBw#v=onepage&q=methysergide&f=false

  11. What ever happened to starting a business 'on a shoestring?' Jerry? 

    Thanks for taking the initiative here, Ricardo! (And I agree, Dr_J seems like a good guy who really cares about people with CH.)

    [Modified in keeping with subsequent posts.]

    At least someone is likely to be financially committed to bringing BOL to market, and maybe that's the best we can hope for, which is not nothing--it's far from nothing. 

    As for starting it on a shoestring, Ron . . . My friend's company, which currently is working to bring one anti-depressant drug to market, had to raise $18 million just for Phase II clinical trials.  (The average per patient cost for a Phase II clinical trial in the US in 2011, I have read, was about $36,000.)  Next for my friend's company, if the Phase II trials seem to show that the drug works, is another phase (IIb or IIIa, I'm not sure which), which will cost millions more.  http://www.naurex.com/media/Naurex_Series_A_financing.pdf

    Then, think of yourself trying to get an LSD-based drug like BOL through FDA approval, and then making sure you have a market by educating doctors so that when they see -- and recognize! -- a CH patient, they know there's a drug out there for them.  My gosh, look at how many docs don't even know enough to prescribe oxygen, if they even know enough to diagnose CH!  (And of course there's all the cost of creating a manufacturing facility, giving the VCs a huge return for their risk, etc.)

    We've discussed all this before.  BOL's "Phase I" clinical trial was small and open-label (nobody got a placebo, if I'm remembering correctly).  Didn't Goadsby even suggest that since it hadn't ruled out placebo effect, it was not fully convincing to him?  What if (from the perspective of potential investors) it doesn't turn out to show compelling effects against placebo in serious trials?  That's a lot of money down the drain, and a drug you can't sell.  Or what if, as Flash suggests in another thread, it causes unacceptable side effects when used long-term.  We have no reason to expect any of that, but if you have lots of places to invest, the risk is not inconsiderable.

    Etc. etc.

  12. It sure would be nice to know which celebrities actually have this debilitating condition. 

    The only two I know of are the woman on TV who is the "Millionaire Matchmaker," who has said she has CH, and the former NBA player Kendall Gill.  It's been discussed here that the well-known headache doctor, Dr. Kudrow, is the grandfather (father?) of actress Lisa Kudrow.

  13. Hawaiian wood rose seeds or morning glory seeds I'm assuming?

    Rivea corymbosa (RC) is the preferred seed here (by most).  Easier to work with than Hawaiian baby woodrose.  Fewer seeds needed than straight morning glory, and considered by some to have less bad stuff in the hulls.  All in that "LSA" file.  Several of your fellow TXans here growing 'em, who would be happy to advise you if you need it.  Thing about the RC is that you could get 'em right away and give it a shot.

    Red bull and some energy drinks are just caffeine bombs and don't work.
    RedBull works quite well for a lot of folks (for that matter, so do "caffeine bombs," sometimes).  It's generally believed that the high caffeine and taurine content in both is what makes them work -- Not saying that for you it isn't some other factor that is in Monster but not RedBull.  Appreciate any insight like this from you about things that work for some but not all.

    There's been a small amount of evidence that using Lithium or other mood-stabilizers with a benzo can help with cluster headaches.
    Yes, and even lithium on its own.  Just has nasty withdrawal symptoms (those rebound headaches), and so is generally just recommended for chronics.  Which doesn't mean a doc won't or shouldn't try it with a person who's episodic when other things don't work.

    Plenty of discussion here about marijuana.  Doesn't help for many but does for some.  Very glad you're one of them.

    BTW, the search engine up top is quite powerful, so if you're interested in what's been said in the past about something, here and at clusterheadaches.com, keep it in mind.  (I just looked up 5-htp.  Not much there--nothing, really, except I see our man Jeebs has used it as a sleep aid.)

  14. You know, I'm thankful to Tommy every time I come to this board -- but until today I have to admit that it never occurred to me how much experimenting, trial and error, and commitment to collaboratively figuring things out went into all this.  Courage, too, and generosity to all of us (and our loved ones) who have enjoyed the benefits.  So now I'll be thankful to you Bobb, and everyone else who laid the foundations for this.  Can you give the names of any of the others who participated in those "early days" (if not, I understand)?

    One question; sorry that it's kind of convoluted.  In that old FAQ, there was a lot of discussion about soaking methods that seemed to affect the strength of a dose of seeds, and I gathered that it was saying there that if the same amount of seeds were soaked in water and in wine for the hour to two hours, the amount of LSA produced would be about the same, but soaking for longer times would produce more LSA, and that a longer soak in wine was particularly effective at producing more LSA. (Not sure I got that right, but it isn't essential to my question anyway(!))  It's been my impression from something I read that wine and water as soaking agents both produce about equal amounts of LSA from the same quantity of seeds in the hour/two hour soak, and that longer soaks produce no, or practically no, increase in the amount of LSA (basically, that most of the LSA is hydrolized by water in the hour/two hour soak, and that no other agent, such as wine, or no longer time period, is actually going to produce significantly more LSA).  Am I right in that understanding?  Or wrong?  I had thought that a lab actually had been hired to test all that, and that was the outcome: that a one/two hour soak in water produces just about as much LSA as you're going to get, no matter what else you do.

  15. Until I finally was referred to the headache clinic recently I generally self medicated (as a preventative) with mushrooms or LSD (which I have no access too anymore.)

    So, you could consider using seeds, which are just as effective for most people as psilo.  Legal to buy and possess, inexpensive, easy to prepare, generally non-pyschedelic at the levels used for busting, illegal to drink once prepared. 


    Have you tried RedBull, Monster, or some other energy drink as an abortive?  Drink one down at the first sign.  Helps a lot of people.  Melatonin?  Dosages vary, but 9-12 mg isn't rare, and I know some folks take 15 or more for extended periods.  Melatonin might interfere with busting.

    Since you're off meds, you're also a candidate for the licorice root protocol, if that appeals to you.  Also reported helpful by a lot of people.  Some have used licorice root along with the D3 protocol, some have just used one or the other.  This might go without saying, but I would think that given your unusual medical conditions, such as the high stroke risk, you might want to check with your doctor before starting anything.

    Licorice root: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

    D3 already linked up above.

    Yeah, those pain meds (norco and fioricet) are not likely to help you.  The other meds won't help your CH, either, but maybe they're prescribed for other reasons.  If you decide to bust and you are taking any meds, you will want to check this file to see what might interfere with busting: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731

    I hope you'll have an oxygen-related appointment soon.  If O2 worked sometimes in the ER and not other times, you might want to try to get a higher flow rate than the 15 that's usually prescribed.  But in the ER, the results might have been more related to whether the folks there knew what they were doing or not (at least 15 lpm, proper use of a non-rebreather mask).

    I think virtually everyone here would agree with Ron that you have many options before agreeing to surgery.

  16. Chris, the most basic of basics: Were you prescribed oxygen?  If not, that's something you want to deal with promptly -- it's a very effective abortive for 90% of people with CH.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    Are you in cycle now?  What was prescribed to you/what meds are you taking?

    There are a whole lot of files over there where Ron pointed you. Since no matter what you answer to my first few questions above, I'm going to suggest that you consider busting (which will require you to "detox" from most CH meds) and the anti-inflammatory "vitamin D3" regimen (which doesn't require detoxing), here are those files:

    Overview of busting:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865

    D3:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

  17. thebb, i gotta say that this faq seems to me to contain some questionable information.  i don't claim to be as expert as many people here, but i know for sure that the recommendation, >>>4 to 8 Rivea seeds should be the range people treating cluster headaches should remain at least for the first dose<<<, is way out of whack with what people have been told -- and what people have done -- ever since i got here 16 months ago.  the smallest first dose i've seen anyone take over the past 16 months was 10; the most commonly recommended is about 30, and i'd guess the average is closer to 35.  not one of those people has reported any psychedelic effects.  tommyd, who acknowledges that he is very cautious about what he says, recommends in his "LSA" file that "cautious clusterheads" might want to start with 8-10 seeds.  am i wrong in thinking that 4-8 is likely to be a waste of time, followed by 5 days of waiting for no good reason? 

    a lot of the content of this faq relating to effects also seems kind of over the top to me, given the very mild effect that people actually experience from RC.  i understand the need for caution and warning, but this seems to me that it can scare people away without any real basis in actual experience.  similarly, i know the taste is bad, or even awful for some people . . . but chocolate syrup washed down with orange juice???

    i notice that somewhere in here it says that RC "looks promising," and i also notice that a lot of it was prepared by "TD."  is it possible that this is at least in part an early treatment of the subject by tommyd, one that could be supplanted as a reference, based on subsequent experience, by this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

    and, just for my information, i don't know what this means: >>>Many have found that drinking a BUNCH of Orange Juice the day after really helped the hangover feeling go away.<<<  i just don't recall anyone here talking about a "hangover feeling" the next day -- i'd say most folks report feeling refreshed after, finally, a decent night's sleep.  is a "hangover feeling" something that's actually common?

  18. RC (rivea corymbosa) seeds, which are just as effective as mushrooms for most people, are legal to buy and possess.  What is not legal is to consume them.  This means that in order to be apprehended you would practically have to invite a law officer to watch you drink them and then get rushed someplace for a very, very thorough blood test to detect the trace amounts of LSA in your system.  RC seeds at the levels needed to treat CH never, or very nearly never, have any psychedelic effects.  They work.  They're cheap.  The preparation is simple (grind 'em up and soak 'em in water for about an hour). 

    To use any psychedelic for busting, you have to be "detoxed" from your CH meds for 5 days. 

    The Hopkins docs did prescribe oxygen, didn't they?  If not -- or maybe even if they did -- see http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    An inexpensive and easy anti-inflammatory "vitamin D3" regimen works for a lot of people, and you can start it right away.

    I like spiny's suggestion of looking at the info in this thread: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1328846357

    You'll find links there to learn more specifics about seeds, D3, and other stuff.

  19. Mrsg posted this message at another thread.  In order to try to keep everything in the same place, I have copied it and my reply over to here.

    [Hello, im in a horrible cycle thats been going on for a year this march,can someone tell me how many RC seeds I should use,exactlly how to use,and what to expect! Thank You! CryPAIN OH GLORIOUS PAIN!]

    Mrsg, you'll be a lot better off if you stick with the thread you started at "Share your busting stories."  That thread is here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1328846357

    You have pretty-lengthy replies there from several people.  If you read the file I linked you to there, you'll have information about preparing seeds.  You'll also see information about where to get seeds.  I think most people would recommend starting with about 30 seeds.  What you can expect is probably no psychedelic effects and very possibly a good night's sleep.  You might have to expect what we call "post-dose hits," or "slapbacks," the next day or two.  These might be more severe than what you are used to, or come at different times, but they are interpreted as a way to know that the LSA is working. They rarely last more than a day or two -- and they don't always happen.

    By the way, Mrsg, Les Genser is a very, very smart person with a deep commitment to understanding CH and helping people who have it.  However, I just can't agree with Les about the vitamin D3 regimen -- not because I have the scientific knowledge to take a different position, but because we have seen too many people, here and at the ch.com thread, get startling results from it.  Not everyone -- and in a very small number of cases, there are reports of CH attacks worsening for a while, until the person stopped taking the D3 protocol -- but enough people to make me believe it should be recommended as something to consider.  Also, you do not have to be off triptans to try it and possibly get results from it, which means it is something you can try right away. You do have to pay attention to when you are taking it if you are taking verapamil: that's all in the file I linked you to.