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CHfather

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Posts posted by CHfather


  1. 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.


  2. 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)

    http://www.ouch-us.org/chgeneral/OUCH%20DOCS%20-%20US%2001-27-2012.pdf

    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.


  3. 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.


  4. 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.


  5. 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

    http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-View-Online-Publication-HEADACHE

    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. 

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

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

    Jerry


  6. 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


  7. 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.)


  8. 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.


  9. 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.   


  10. Damiano, OUCH compiles a list of doctors recommended by people with CH.  There are only two listed in Sacramento, but there are a lot of others in California in the overall list, which you see here: http://www.ouch-us.org/chgeneral/OUCH%20DOCS%20-%20US%2001-06-2012.pdf

    I guess most folks here would be pessimistic that you're going to get any real help from a neuro, but of course it's worth a shot.  The only "good" thing about your current situation is that if you have to stop imitrex and cut back on verap, you're detoxing for busting.  You say (in your other message) that you've read a lot here, so I assume you have at least a general orientation to busting, but please ask any questions you may have.

    Yes yes and yes I have tried pretty much everything
       It sounds like this subject might just tick you off, but I'm going to name some things, and you can just not answer, or respond if any of them interest you.

    Doesn't sound like you have oxygen.  For some people the "standard" 15lpm/ standard non-rebreather mask (which I assume you have or have had) doesn't work, but higher flows/better mask/demand valve do work.

    The anti-inflammatory vitamin D3 regimen has helped a whole lot of people, often quite quickly: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    We just had another report from someone for whom the licorice root regimen worked really well: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

    Another long-time sufferer reported recently that kudzu in combination with D3 (and busting) has helped him a lot.  You can see that thread here: www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1326294637

    Okay . . . Just trying to think of something for the short term.


  11. Purp, I wonder whether you'd want to buy some rivea corymbosa seeds and have them delivered quickly, in case there are any further delays in finding the other agents you are looking for.  RC seeds work very well for most people.  There is a supplier in Canada, www.tranceplants.net, that looks (from my brief review of the website) as though it will ship overnight, so (because they ship on Monday, Wednesday, and Friday) you could have seeds on Thursday.  Preparation is simple.  You can switch from seeds to other agents when you get them -- but again, seeds are very effective for most people: you would not be getting some kind of "second-class" busting agent.


  12. Here's the page about interaction between meds and busting: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731

    And here's what I have learned here (and a little bit in other places) about verap and lithium (which is also in that file above) in relation to busting.  If I'm wrong, I hope I will be corrected.

    Some people have had success busting while on verapamil.  Often they said it was partial success, and they believed that if they had been completely off verap the success of their busting would have been better--but they did get relief.

    Lithium can increase the psychedelic effects of LSD and psilocybin.  I don't know for how many days after stopping it that would be true.  It's also my impression that stopping lithium too quickly can be bad for you, but I don't remember where I read that, so I could be wrong.  It's also true that one reason that lithium is not a great agent is that stopping lithium can result in severe rebound headaches.  (If you want to see the abstract of a study about that, it's here: http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.1981.hed2104132.x/abstract)

    Here's what is written about lithium in that file I linked to in the first paragraph:

    >>>Anecdotal reports suggest that lithium can greatly potentiate the effects of LSD or mushrooms, and that it can produce very unpleasant feelings. An examination of a number of reports suggested that lithium can either increase or decrease effects.   The combination of lithium and tryptamines may even produce episodes that seem like, and that perhaps are, epileptic seizures. If people are taking lithium for treating cluster headaches and it is not working, they may want to talk with their doctor about not taking it any more before trying mushrooms or LSD.<<

    So here's the conclusion I reach--this is just me, I'm not telling you what to do.  IF you stop the lithium and it's out of your system pretty quickly (I just don't know how quickly that happens, but maybe someone else will), you could bust pretty much as soon as the lithium's out of your system, since some remaining verapamil should not prevent you from having some initial success with busting.    But I'd be cautious about doing anything too quickly with stopping the lithium.

    Since you don't have oxygen, have you tried drinking an energy drink quickly at the beginning of an attack (a drink high in caffeine and taurine, such as RedBull or Monster brand drinks)?  Have you tried taking melatonin at night?  Are you considering vitamin D3 or licorice root?  (You don't have to answer these questions -- I'm just looking for things that might help you handle the "detox" period more easily.)


  13. I don't know about anyone else, but I registered with Entheogen's site when it first came up, and have yet to receive an update.Maybe it's simply that there is no news, but it would be nice to hear something. 
    Same here, and agreed.  I'm hoping that at least when clinical trials come around, registering will prove to have been an advantage.

  14. BOL 148 is a chemical compound that contains a very large amount of LSD, but which is made non-hallucinogenic by the addition of other elements.  It has been shown to have very good effects against CH in small clinical trials in Germany.  Here's one report about it: http://www.clusterheadaches.com/cb/yabbfiles/Attachments/BOL_Halpern_IHS2009-2.pdf

    The company that holds the patent on BOL has been discussing a new round of clinical trials in Europe and the US.  You can read more about that company, and register to be informed of new developments including clinical trials, here: http://www.entheogencorp.com/community/


  15. Evo, thanks for writing so clearly and powerfully. Sadly, your experience is not as uncommon as it should be.

    CH can be largely prevented and it can be effectively controlled.  The strategies used here, referred to as "busting," will help you do that.  You can start reading about that here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865

    There are many files in the "Clusterbuster Files" section here that will give you more information. 

    Here's one report about the effectiveness of busting with LSA: http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf

    (Most people here prefer a different kind of seed, rivea corymbosa (RC), than what's used in that report, but the active ingredient, LSA, is the same.)

    First thing you need to do is get back to that doctor (or your new neurologist) and get a prescription for oxygen, right away.  It is the best abortive you can get: highly effective, and no side effects.  European medical standards name it as the first-line abortive for CH.  Read about it here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    You sound like a determined and persistent person.  Be that way about oxygen!!!!!!!  Virtually everyone here would tell you the same thing.  For most people, oxygen will stop an attack within 10-15 minutes. (Must be a high-flow regulator (at least 15 liters [or "litres"] per minute) and a non-rebreather mask.)

    Others can comment on the nasal spray.  It's not the best of the pharmaceutical solutions . . . but people here might advise you about why many/most/all of those solutions are against your best interests in the long run, when there are other "self-help" options: busting foremost, but also others that have worked very well.  (The spray will interfere with busting.  Hopefully, you'll find that the things I'm about to mention will enable you to do without it.)

    At a very simple level, try drinking an "energy drink" quickly at the first sign of an attack.  Something high in caffeine and taurine. In the US. common brand names are RedBull and Monster.  It will probably cut back on the severity of your attacks.

    Brad, who just welcomed you, is one of many people here who have very good success with the anti-inflammatory vitamin D3 regimen.  You should seriously consider starting that right away.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    Others have had good success with licorice root.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

    One long-time member has been happy with the effects of a combination of the D3 regimen and kudzu (and RC seeds).  See that thread here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1326294637

    In the longer run, there are medications and strategies being developed out in the world that can help a lot with CH, potentially soon.  You will make your CH much more manageable with strategies I've listed here and that others will discuss with you here, guaranteed.  And eventually there will be other things.  It's not a lifetime curse.


  16. Thank you for responding so thoroughly, Fester.  I doubt that there is anyone with CH who hasn't cried or punched him/herself in the head -- at the least.   Since you added "symptoms that last for up to three days at a time," and I'm not quite sure what that means, and you added "sensitivity to light," which is not a typical CH symptom (although some have it) but is a typical migraine symptom, and from some of your other answers, I wonder whether you should see a non-flakey headache specialist. (And also because your doctor calls it "cluster migraine," which is a term that is sometimes used, but I don't think should be used by a medical professional.)  At the bottom of this page I'll post a list of doctors in Illinois who are recommended by people with CH.  They seem to all be in the Chicago area.  If you live closer to another state, you could look at the whole list here (for example, there are some in Merrillville, IN, if that's closer to you):  http://www.ouch-us.org/chgeneral/OUCH%20DOCS%20-%20US%2011-17-2011.pdf

    At the least, I'd strongly recommend asking your current doc for oxygen again (at least 15 lpm with a non-rebreather mask) and, as I said, trying the D3 regimen or licorice root. When you get your O2 system, if it doesn't work for you,  you can upgrade it with a better mask and a higher-flow regulator, which will give you a high likelihood of success.  Those things might make it at lot easier for you to "detox" and give busting the best chance of success (maybe with RC seeds while you're growing your other crop).

    If your doctor's not inclined to prescribe oxygen, we do have some resources here (such as the article in the Journal of the American Medical Association proving the effectiveness of O2) that might help persuade him/her.  You can also create your own oxygen system, as many people with CH have done, using welding oxygen and parts you can buy online.

    Here's that list of Illinois doctors:

    Aurora:

    Dr. Karen Burgner (PCP)

    Dreyer Medical Clinic

    Chicago:

    Diamond Headache Clinic

    Dr. Robert Wright

    University Neurologists

    Dr. Kenneth L. Moore

    Glenview:

    Dr. Thomas Freedom

    NorthShore - Glenbrook Hospital

    Highland Park:

    Dr. Trupti Gokani

    North Suburban Wellness

    Maywood:

    Dr. Matthew McCoyd

    Loyola University Medical Center

    Northbrook:

    Dr. Lawrence Robbins

    Robbins Headache Clinic


  17. Thanks, Fester.  The Sumavel is sumatriptan -- It's Imitrex using a different delivery system.  It is very unlikely that you will be able to bust successfully while using this -- a five-day "detox" period is almost certainly required.  Percocet rarely helps with cluster headaches, and it, too, is said to block busting, requiring a detox period.  Here's a file about all that: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731

    Did oxygen not work for you?  Was it a high-flow (15 liters per minute or more) system with a non-rebreather mask?  Because a good oxygen system is very beneficial if you're going to get off the meds that block busting.

    Forgive me if I'm being a jerk about this, but "cluster migraine" is not really an accurate term: You could have migraines, or cluster headaches, or even cluster headaches and migraines, but not "cluster migraines."  I'm not picking at your word choice, I'm just wondering whether you actually are sure you have CH, because you might be barking up some wrong trees here if you don't. Do you have classic CH symptoms: the icepick pain on one side of your head near or behind your eye; conjunctival injection (the mucous membrane that covers the front of the eye and lines the inside of the eyelids looks red/inflamed: “red eye”); lacrimation (the flow of tears); nasal congestion; rhinorrhea (nasal discharge/”runny nose”); forehead and facial sweating; miosis (excessive constriction/tightening of the eye’s pupil); ptosis (drooping of the upper eyelid); eyelid edema (swelling/”puffiness” of the eyelid from excessive watery fluid collection); inability or near inability to remain still or lay down during an attack? 

    Assuming that you do have CH, given what you're now taking and the "detox" that's required before busting, and the fact that you don't have O2 as an abortive, I would recommend that you look into one of the alternative treatments that can at least tide you over during a detox if you decide to bust (and that might help you quite quickly in and of themselves).  Two of those that have worked well for a lot of people are the anti-inflammatory vitamin D3 regimen and licorice root/skullcap.

    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

    And I'd also urge you to seriously consider trying oxygen again, since it does work for about 4 out of 5 people with CH.  If you had the "right" setup before (15 lpm, non-rebreather mask) and it didn't work, maybe you'd want to try a higher-flow system. Part of my curiosity about your diagnosis is that while proper oxygen systems generally will help people with CH, it's my understanding that they are considerably less effective for migraines.

    I know I'm repeating here some of what Bejeeber told you, but I figure it's worth emphasizing.


  18. Hey Jon -- Welcome!

    Just to be clear -- You mean RC seeds? (You wrote "cc," and I just want to be sure.) 

    Licorice root/skullcap have helped a lot of people.  But if you feel you need to get off the verap to try them, you might also consider trying the anti-inflammatory vitamin D3 regimen, in which you might be able to work around the verap while you're quitting it.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

    Here's what it says there about verap.  >>>If you are presently taking verapamil as a cluster headache preventative or for a heart condition, studies have shown that after repetitive dosing with verapamil, the serum half-life can be in a range from 4.5 to 12 hours.  Other studies indicated calcium supplements interfere with calcium channel blockers like verapamil.  Calcium gluconate is also used to treat reactions to oral verapamil.  Accordingly, in order to minimize a possible interaction with calcium that may limit verapamil effectiveness, separate the verapamil and calcium doses by at least 8 hours.  Again, discus this regimen with your PCP, neurologist, or cardiologist to work out an optimum dosing schedule.<<<

    We're glad you're here!!


  19. I guess I have some more research to do!!
    Welcome, Fester. Here's where you'd start researching seeds: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

    But I think we'd definitely want to hear more about you.  You have a specific diagnosis of Cluster Headache?  If so, what was prescribed to you?  What meds have you taken and what are you taking now?  You have oxygen? Please give us some background.


  20. The Nat Geo international TV listings are here: http://www.nationalgeographic.com/siteindex/television.html

    It's part of the series called "Drugs, Inc."  I was able to figure out when it would be on in some places (Feb 13 in the Netherlands, for example), but others stumped me.  (Seems like the schedule for Norway is only available through January 31, and this episode isn't on before that.  It could be that they are considering banning the program out of fear that Dan's extreme hotness might cause all eligible Norwegians to immediately apply to move to Texas.)


  21. Although there are some serious vegetarians here who nonetheless have CH, there also have been many people who have reported that what they eat affects their CH.  Here's one person who experimented a lot: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1301882443

    So I'd say you should try it since you have noticed that correlation. 

    In my conversations with random people I meet about severe head pain, I have now met two who have gone to actual live-in centers where they test the elimination of certain foods to see if there's any effect on head pain (this is probably not CH pain, but you're talking about migraines in your post).  One of them has become almost completely head-pain free by eliminating most meats. (One general principle of the D3 regimen is that it shifts your body's pH from acidic to alkaline. Red meat tends to be very acid-producing. Not vouching for this (although it makes sense to me and the acid/alkaline thing is a widely expressed homeopathic principle), but maybe worth considering. Here's more on the general acid/alkaline topic: http://www.naturalhealthschool.com/acid-alkaline.html

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