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Posts posted by CHfather

  1. Dear U.S. Government, Please!! We're begging here. Give us BOL now!

    I think it's Dr. Halpern, Entheogen, and its current or future investors that we need to be begging.  In that ABC special that Ajax posted, the last sentence is something like "Halpern is hoping to start large-scale clinical trials [of BOL] soon."  Let us pray.  At the conference, he said he was hoping that the US trial would be "open label," in which people would just get BOL -- no placebos.  It wouldn't prove as much as a rigorous trial, he said (rigorous double-blind ones would be conducted in Europe), but it would get relief to sufferers.  Let us pray.

    I sure would like to hear something about what "soon" might mean, and whether that open-label trial is likely.

  2. You can order the RC seeds from various sources on the internet.Someone will probably be able to tell you which source has the highest quality and for the best price.
    I'd say that www.iamshaman.com is the most-recommended site. www.psychoactiveherbs.com is one that I trust.  I think seeds bought from almost any site are likely to work, and the "floater" test (put them in a glass of water and discard the ones that float) probably insures sufficient quality.

    Mrsg, seeds are in general just as effective as psilo.  This varies for some people, but if you were willing to try mushrooms, you ought to try seeds.  Some experts here have even said that seeds are probably overall more effective in more cases than mushrooms.  You would want to order rivea corymbosa seeds, which are referred to here as RC.   Here is a poster created by a medical school professor showing some results of busting with another kind of seed that also produces the ingredient you'd be looking for, LSA. (Those seeds are harder to work with than RC, which is why RC is recommended.)  http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf

    Here is the first file you should read. It will give you some background and tell you about the very simple way that seeds are prepared.  The author recommends a smaller number of seeds for a first dose than most here would recommend -- but if you decide to proceed, the very good folks here will help you along the way. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

    Since you are using imitrex, it will be strongly recommended that you should "detox" from it for five days, since it interferes with busting (and the tablets, as you say, sadly probably are not helping you much anyway).  I would urge you to seriously consider starting right away the anti-inflammatory vitamin D3 regimen that has helped lots and lots of people--even ended a lot of cycles.  If it helps you, it will make it much easier for you to detox.  You can read about it here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    I would suggest that you at least glance at/scroll through the thread at ch.com where the "D3" approach is discussed. There's a link to it in the file I just listed above.  It's way too much info for what is basically a simple plan, but you'll see a lot of encouraging successes.

    As you have seen, the great people here will help you and support you.  It's what they do.  They've been where you are.  Stick with them.

  3. Hey Scott.  It's very good of you to care so much for your brother.  Many of us here know the pain of seeing a loved one suffer so much.

    I don't know whether busting would work for TN.  Maybe others do. I don't recall anyone here with that condition.  We did have a fellow with postherpetic head pain of a different form (hemicrania continua), and busting wasn't the answer for him.

    BUT about 95 percent of people here had some form of misdiagnosis, often for years, before it was realized that they had CH.  My daughter was misdiagnosed for years as having TN (the "funny" -- not really funny at all -- thing about it is that a diagnosis will often tend to stick even if the symptoms don't match it).  The "claw" and the "demon" sound like they could be CH. So somehow getting a better diagnosis might lead to different treatment.  Maybe you could look at this wikipedia page and ask him about the symptoms: http://en.wikipedia.org/wiki/Cluster_headache

    TN, as I understand it, has quite different symptoms.  I did a lot of reading about TN when that was my daughter's diagnosis (it's one of the ways we figured out that she didn't have TN), and there seem to be a lot of potentially helpful treatments for it . . . but that's an issue that's really outside our scope.

  4. No idea whether this adds anything, but I often think about Dr. Sewell's observation that people with chronic CH also have "cycles" within their chronicity.  I will post his whole blog post on the subject here, but to see the charts, you'd have to go to http://www.clusterattack.com/blog/do-chronic-patients-cycle/

    >>>>Do chronic patients cycle?

    Jürgens (2010) Ten years of chronic cluster–attacks still cluster

    Commentary–Ten years of chronic cluster – attacks still cluster

    Tim Ju[ch776]rgens is a post-doc working for Arne May at the Department of Systems Neuroscience, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany—and by “post-doc”, I am using academic slang to mean someone who is in the first few years after receiving their MD, but before their first official faculty position. Despite his junior status, Dr. Ju[ch776]rgens has been remarkably prolific in the field of cluster headache research these past few years. Last week we looked at what he had to say about impairment in cluster headache; this week we will examine another paper he wrote recently about periodicity in chronic cluster headache.  ItÂ’s Ju[ch776]rgens-Fest 2010, woo-hoo!

    We all know that cluster headache is a circadian-linked disorder, with attacks occurring at much the same time every day and—even more interestingly—much the same time every year. Some people find that their cluster periods occur twice a year, in spring and autumn, for example; I have one patient whose cluster periods occur for one month every seven months, precessing around the calendar and occurring at a different but predictable time each year.

    What about chronic cluster headache, however? One tenth to one fifth of cluster headache patients donÂ’t have episodic attacks with clear cluster periods; they have attacks year-round. Do these vary rhythmically as well? I think—yes. For one thing, I observe it in my own chronic cluster headache patients. For another, I think that the distinction between chronic and episodic cluster headache is artificial. I believe that cluster headache is like epilepsy—just as anyone can be provoked into having a seizure under the right set of circumstances, so anyone can be provoked into having a cluster attack. Just as there is a “seizure threshold”, that can be raised or lowered with the appropriate environment, biochemistry, and drugs, so there is a “cluster attack threshold” that rises and falls, sometimes to the point where attacks will occur spontaneously. Some patients can tell when they are in a cluster period because of some indefinable subjective change, some “penumbra”, even if their prophylactic meds are working and they are not even experiencing any attacks! According to my view, chronic cluster headache patients are merely those unfortunate few whose cluster attack threshold never rises to the  oint that they cease to have spontaneous attacks. Others (Sjaastad) have argued that this may be true for secondary chronic cluster headache (the form where episodic has evolved over time into the chronic form), itÂ’s not true for primary chronic (which started that way to begin with), which doesnÂ’t show a circadian link. WhatÂ’s lacking is hard data either way!

    So what should fall into Dr. Ju[ch776]rgens’ lap but a patient with cluster headache—starting at age 51, diagnosed at age 54, and converting to chronic at age 55—who had meticulously recorded every single cluster attack that he had for the next ten years in electronic form; 5447 in all. Only in Germany! I dream of having a patient like that. I always hand out headache diaries, but I can count on one hand the number of times I’ve ever received one back filled in. Dr. Ju[ch776]rgens then conducted a “spectral analysis”, which is a advanced mathematical technique for analyzing phenomena that occur in cycles by looking at them in terms of superimposed frequencies.

    What he found was the following: His patient had an average of 45 attacks a month, lasting an average of 23 minutes each (treated). The frequency of attacks DID vary cyclically, with one peak occurring every 13 to 15 months, and smaller cycles occurring every 2, 4, 6, 7, and 9 months. There was also a daily cycle, which (oddly) corresponded better with 24.5 hours than 24. Attacks were slowly diminishing as the years went by.

    Why is this important? As Dr. Ju[ch776]rgens point out, this one case confirms scientifically what has long been suspected—that chronic cluster headache patients cycle also (although it does not address Sjaastad’s theory that primary chronic patients do not). Practically speaking, this means that if a prophylactic medication stops working with a chronic cluster headache patient, it’s a mistake to conclude that it’s stopped working and switch to something else. It may just be that the disease is in an upswing and will get better in a few weeks, in which case it is better to stay on the medication and wait it out.<<<<

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  5. I have NO idea what this means or why it's important, but it's a new study so I figure it's important to some researchers someplace (or maybe to Ricardo or some other very dedicated thinkers here).  http://www.ncbi.nlm.nih.gov/pubmed/22289052?dopt=Abstract

    Last sentence:  "Our findings that TRPV1 is inhibited by the specific antimigraine drug sumatriptan, and that TRPV1 channels are functional in neurons projecting to cerebral dura suggests a specific role for these channels in migraine or cluster headache."

  6. i'm down with a pledge for that purpose, just because it absolutely seems like the right thing to do. 

    however, i don't imagine that any favorable legal precedent could be established.  the law's the law, and judges can't go around changing it for special cases.  i imagine a lawyer would try to create a "jury nullification" situation, in which the jury was so sympathetic to the accused person that it wouldn't apply the law to him/her (or a prosecutor wouldn't want to take the case to trial), but that doesn't create a precedent.

    that's just my guess.  i'm usually wrong. 

  7. d'head, maybe you could start a new thread, so we're not answering you all over the place. (to do that, go to the home page of this message board, click on "general category," then click on one of the categories ("share your busting stories" is maybe a bit more private, if that matters to you), then scroll to the bottom and create your message in the blank template there.)

    very good info from purp here, but if you get a lot of "advice," which you probably will, it'll be good to have it all in the same place. (there's a small additional suggestion, and a question, from me over at your post in the "natgeo mushrooms" thread).

    your husband will get better, and you will suffer less, too.  people here will make sure of that (many of us are supporters of loved ones with CH; in my case, it's my daughter).

  8. a caution (small one, perhaps, given your good experience):  at least two people here have been disappointed with seeds they got from tranceplants.  the first one was ting; that was some time ago.  more recently (within the last 6 weeks), purple404 found a whole lot of duds when he tested them using the "floater" method.  (also, kika was not confident that her seeds from tranceplants were as good as they should have been. that was some time last year.)

  9. That's rough, Odin, very rough.  So sorry.  It's hard to know where to go when someone says they have "tried everything," since this can mean they've actually tried everything (which is a whole big long list of stuff), or that they've tried so many things that didn't help them that they're really not interested in trying anything else.  That happens with a lot of people with CH.

    So here are two basic things, although there could be several more.  The first is the standard question about oxygen: You have tried it at high flow rates?  You have an O2ptimask?  You've tried a demand valve?  All of those things have made a difference for many people for whom oxygen didn't work at first, or had stopped working.

    Second, I'm not sure what an "alternative TX" is, but I assume you're referring to a busting substance.  If you now don't have access to that particular substance, which you say helped, how about buying some RC seeds and concocting your own?  Inexpensive, very simple, and very effective more many people.  Here's an introductory file that you can read about that, and then you can always ask more questions if you want to:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

    But maybe RC is on the list of things you've already tried.  If not, I'd recommend seriously considering it.

  10. Of course you're completely welcome here, Manda.  Many, many people here had views very similar to yours about busting, until their meds stopped working or the side effects of the meds became intolerable.  Hopefully, that won't happen with you.  There's a lot of hope on the horizon for effective CH treatments that will circumvent the meds currently prescribed.  (You might want to sign up here to be informed about clinical trials if/when they occur for a very promising anti-CH medication, BOL-148, being developed by a pharmaceutical company: http://www.entheogencorp.com/community/

    BOL-148, incidentally, is made from very high doses of LSD that are rendered non-hallucinogenic by the addition of another compound.

    If you have CH, oxygen is indeed the best side-effect-free abortive for an attack.  Yet for some reason, 50% of people with CH don't get an oxygen prescription.  So it's good to go into an appointment prepared to insist on it.  Here's some info: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    (It sounds from what you said that your attacks are maybe quite brief in duration, which would be a consideration for any abortive, since they all take some time to work.  But a competent doctor will take all that into account.)

    Just thinking ahead . . .  if you have CH you'll probably get prescribed verapamil, or prednisone, or neurontin . . . or something.  They all have side effects.  Sometimes, even often, they work, at least in the beginning.  As Purple says, if you haven't already checked out www.clusterheadaches.com, that's where you'll find larger discussions of those conventional meds, although people here also know a lot about them.

    Still thinking ahead . . . Since your daughter is not sharing her nutrition with you, you might want to consider something like the anti-inflammatory vitamin D3 regimen that has helped a lot of people, or the licorice root regimen that has also created good results. You are clearly smart and cautious enough to read this information carefully before deciding whether to try it or not, particularly being cautious until you know what your condition is.

    D3 info: 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

    Many people with CH find that quickly drinking a RedBull or other energy drink (high in caffeine and taurine) at the first sign of an attack can substantially reduce the attack's severity and duration.  Again -- whether this would work for you, or be advisable for you, only you can decide.  Maybe be prepared to discuss these options with your doctor (who in all likelihood will scoff at anything that's not in his or her book, but who knows . . .).  There are other things, too -- melatonin and kudzu root and GABA, for example -- all of which people here know about and will be happy to discuss with you. 

    Best wishes -- Keep us informed.

  11. Manda, welcome. So sorry for that pain.  I wish I could give you some kind of nice menu of options to try, but I have to agree with the others here that while 90-plus percent of your symptoms sound like classic CH, the rest, plus your headache history, make a solid argument for seeing a headache specialist as quickly as you can. 

    (Also, if you are breast-feeding Emerson, of course you have to be careful about what you take in that might affect her.)

    There is a headache center at WVU, if that is at all convenient for you:  http://wvuhealthcare.com/wvuh/Healthcare-Services/Neurology/Headache

    Also, you can find a list at the website of OUCH (Organization for Understanding Cluster Headaches) of doctors recommended by people with CH (who I assume would be generally good headache diagnosticians).  There aren't any in West Virginia, but there are some in neighboring states that might be nearby to you (Pennsylvania, Ohio, Virginia, Kentucky)


    And maybe the state medical association could give you some guidance about other headache centers: http://www.wvsma.com/

    You've seen how many people here will reach out to help you quickly.  If you get a CH diagnosis, they'll guide you through steps that will help you enormously, and probably quite quickly.  When you get an appointment, let us know and we can talk about what to do/ask if CH is the diagnosis.

    Blessings to you and Emerson.

  12. Here is my sense of what your priorities should be:

    #1. GET OXYGEN

    #10. Get testosterone test

    #11. Get vitamin D level test

    Yes, that's 1, 10, and 11.  That's how big I think the gap is between getting oxygen and the rest.  So if I were you I would not do anything (such as saying that you have stopped the other meds, or talking about alternative treatments) that would jeopardize your getting the oxygen.  If I were you, I would be a model patient saying, "These meds are not fully working for me and I would like to have the safe, medically-recommended abortive, oxygen."  I would have printouts of the articles with me.  And I would try as best I could to dig in my heels and insist.  All of that is what we did with my daughter's neuro.  I'm not saying it will work; I'm saying that's how I would try.  You know the neuro better than we do.

    And I'm not saying the testosterone test might not be valuable.  I'm just talking about priorities.  Here's an abstract of an article about testosterone (but notice these were people for whom oxygen did not work, and you haven't even tried oxygen yet): http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.2006.00436.x/abstract

    As for the D3 test, I already covered this in my reply to your post at the D3 file thread.  Yes, it would be nice to know, and -- as Ron says -- if your neuro is shockingly sympathetic, of course you can ask for that, too, but, really, it's completely safe right now -- in my non-doctor opinion -- for you to proceed with the D3.  A very small number of people have had some bad, temporary reactions to D3 . . . but those have stopped when they stopped taking it, and it very probably was not because their D3 levels were already too high, which is all the test would tell you.  Your general practice doctor probably would be quite willing to order this test, since low D levels are increasingly recognized as a health risk.

    It seems safe to assume that your neuro will not be able to help you with any medical issues related to busting, if there were any, so it's hard to see what you would gain, and easy for me to imagine what you would lose, by bringing up that subject.

    If your neuro does not prescribe O2, remember that it would probably be quite feasible for you to set up your own oxygen system using welding oxygen.  These can easily be rented in the US, and many people use them.  I don't know what Canadian practices are.  You do have to promise not to blow up yourself or your neighbors through carelessness, I'm pretty sure.

  13. oh boy, that's hard to read.  so sorry. your emotions have been completely beaten up in the last few days.  starting a new job is hard enough by itself.  then the worry, the hope, and then the solvent -- like getting hit by a car as you're innocently crossing the street.  and of course the red bull is full of caffeine, which isn't good for already jangled nerves.

    When you see your doctor, could you possibly print out this report of the European guidelines for treatment of cluster headache and bring it with you:  http://www.efns.org/fileadmin/user_upload/guidline_papers/EFNS_guideline_2006_cluster_headache_and_other_trigeminal_autonomic.pdf

    On the fourth page, it says: >>Inhalation of pure (100%) oxygen via a non-rebreathing facial mask with a flow rate of at least 7 l/min (sometimes more than 10 l/min) is effective for stopping cluster headache attacks [33,34]. The inhalation should be in a sitting, upright position. There are no contraindications known for the application of oxygen (Table 5).<<  The flow rate should be higher than what it says there: at least 15 lpm.  But most regulators that go to 10 will probably go to 15.

    Many people have also created their own oxygen systems, using tanks of welding oxygen and a regulator and mask they buy in other ways.  So this should also be an option for you.

    If you can, I would recommend starting the anti-inflammatory vitamin D3 regimen (see a link to that in my first post to you) and perhaps ordering some rivea corymbosa seeds so you can bust if you decide to.  I think the site www.allsalvia.co.uk sells them.

    Stick with us, Damien, and we'll stick with you.

  14. Okay, my friend.  First, the neuro that told you that is an IDIOT.  IDIOT IDIOT IDIOT.  There is nothing less useless than oxygen, which aborts an attack for most people within fifteen minutes, and it's far less costly than imitrex, lithium, verapamil, etc., not to mention that it has NO side effects (which of course add to the costs).  What the neuro said is just plain wrong.

    Three files you can look at if you want: http://jama.ama-assn.org/content/302/22/2451.full


    2002 report from the major Canadian health advisory group recommending oxygen for CH http://www.inesss.qc.ca/fileadmin/doc/aetmis/Rapports/SoinsDomicile/2002_01_nt_en.pdf

    That aside, you're not the only one who has reservations about using oxygen, although most people who overcome those reservations are very happy they did.  You're right about many/most people wanting to forget they have CH when they're not in cycle.  On the other hand, having that tank there for many people reduces the dread.  I am certain that most people here would tell you that O2 is a very positive thing for them (which doesn't mean that it would be for you).

    I will tell you why I am so passionate about this.  My daughter had misdiagnosed CH for six years.  By the time she got diagnosed (by me--from the internet), she'd been given so many meds and treatments that didn't work that she refused to try anything.  Her IDIOT neuro prescribed oxygen -- at a flow rate of 8 lpm with nasal cannula.  Surprise: It didn't work, but we didn't know then that it was the wrong prescription, and it couldn't work.  That was the last straw for her, and for the next few years she just endured multi-hour high-KIP attacks with no meds at all.  (She was episodic then, so we're talking about roughly six months a year.)  No energy drinks.  No nothing.  And I visited her once and sat up with her night after night, both of us in anguish.  And I found this site, and people here walked me through the process of getting the right oxygen set-up, which I had to force on her.  And even after it was set up, she wouldn't try it.  She would rather have the agony than one more terrible disappointment.  And one night, in complete desperation she did try the oxygen.  And I will never forget her laughing out loud and giggling as the oxygen took her pain away.  It's not a perfect solution, by any means, but it's a good thing in the real world.  (And you won't blow or burn yourself up.  My daughter's a careless smoker, and I'll bet there are others here who fit that category and use O2.)

    If you do the D3 regimen, please be sure to do it all, including the lemonade/limeade.  According to Batch, it's important to do the whole thing. 


    I'm hoping you're on a good path now with the RC.


  15. Mystina, did the alcohol-soaked seeds actually help you?  Somehow I'm remembering that RC seeds don't seem to work for you, despite taking large amounts.

    Ricardo also says that soaking seeds in peppermint tea or wine makes LSH instead of LSA.  (For full disclosure, others have said they doubt this. I have no idea.)  Cold peppermint tea, he says.  Discussion of that in this thread: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1323888444/17

  16. I still feel bad about recommending Tranceplants -- but maybe overall it was a good thing since you could get it quickly, and COD.  (They probably sent you a lot more than 500 seeds, too, which is a good thing since so many of them are bad.)

    There are some "miracle" stories here of very fast remissions. (Heck, one woman said she became pain free after two doses, of 10 RC seeds and then 12 seeds.) But for most people it takes several doses, five days apart. 

    I'm sorry if I'm asking questions you have answered since the last time I asked them, and you don't have to answer them here, but . . . Have you been able to do anything toward getting oxygen?  That quick abort can help your mood, not to mention your pain.  Do you try an energy drink at the start of an attack?  Helps a lot of people: reduces the severity of the attack or sometimes even aborts it completely.  And have you considered the vitamin D3 or licorice root programs?  A lot of people say that licorice root helps with mood, and a lot of people say the same about the D3 regimen.  You can do all these things while busting (though I think Les had some doubts about licorice root and busting).   (I don't mean to compare "mood" with depression, but I figure that maybe anything that gives you a lift might be good.)

  17. Well, that's one vendor we shouldn't recommend again!  So glad you did the floater test.

    How much you take is of course up to you, and if you want to go higher, you should.  Two things are relevant here, though. First, you're not likely to get fully better after one dose (in fact, you should be ready for the post-dose hits/"slapbacks" that usually come a day or two after dosing -- hits that are stronger than usual or occur at times different from "normal" times, which indicate that the dose is working).  So, I wouldn't attribute not feeling perfect to not having taken enough.  Second, it seems to be the case that after some point, more is not better -- it's just more.  You have to get enough LSA to have an effect, but 60 seeds is almost always plenty in that regard.  I'm pulling numbers out of the air here, but I'd say that of the 50 people here who have used RC to treat CH, maybe five have felt the need to go above 60 or 70. Some people have taken 100 or more, but in some or even most of those cases it's because lower levels didn't work for them -- and 100 turned out not to work, either.  RC just didn't work for them.

    I can't see any big reason for you not to take 100 if that's where you want to go, and now that you've taken the number you have, you have a pretty good idea what 100 would mean.  But I suspect that the 85/60 dose is working as well as 100 would have.

  18. Jon, unless you're very nervous about even a very small possible psychedelic experience, I'd say you ought to start with more seeds than 10-15.  30 would be more likely to help you, and would almost certainly have no psychedelic effect.  The problem with taking too few seeds is that you get no benefit, but you still have to wait 5 days before your next dose.