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Posts posted by CHfather

  1. Having been away from my computer for a few days, it's all I can do to catch up with so many posts here, so I just wanted to say thanks, t'asian, and to say again that it would be lovely if we could all come together around something, or some things, to put concerted energy behind. I will raise this topic again, probably (again) in relation to the forthcoming conference.

  2. Les, the basics of the D3 therapy are 10,000 international units of D3/day, 2000-4000 mg of Omega3 fish oil/day, and two calcium citrate tablets formulated with D3, magnesium, and zinc/day.  It seems generally agreed as people feel their way through it that (a) the D3 is the essential component, and (B) people will find somewhat different dosages more suitable, based on experience. 

    As I read it, I think the 10Kish  is recommended during cycle and 5Kish is recommended for maintenance.

    It's a long and convoluted thread, which can be found here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0

    Your insight would be much appreciated. 

  3. Davy, another thing about steroids is that they are a known cause of a very unpleasant condition, called avascular necrosis, in which bone dies from lack of blood flow (often in the knees or hips, requiring replacement of those joints).  It's not something you have to worry about, probably, from a few uses, but I believe there are people at this site who have experienced it and would attribute it to long-term use of steroids to treat CH.  I had it in my knee.  Not fun.

  4. Having guys like Dan and Jeff -- and so many others at this site -- on your side is like going to the Mayo Clinic, rascleo.  Great advice, great wisdom, genuine compassion -- only better, because they'll stay with you until your situation improves.

    I would suggest that you order some RC (rivea corymbosa) seeds right away.  It's completely legal to buy them and have them in your home, and they're not expensive.  Then you'd have them if you decide to "detox" and try them.  Here are some sources:





    Also, if you decide to move up to a regulator with a higher flow rate, maybe along with an O2ptimask, both of which many people swear by, you can get those at these places. 

    25 lpm regulator, O2ptimask, demand valve:  http://www.lifegas.com/gas_devices_and_therapies/special_oxygen_needs.asp

    25 lpm regulator: http://www.madamedical.com/merchant.mv?Screen=PROD&Store_Code=MM&Product_Code=R1...

    Regular and higher-flow regulators: http://www.floteco2.com/htm/Products/Regulator_Page_&_Images/B-Regulators.htm. A Clusterbusters member writes, "They have ones that go way high (I think mine goes to 60 LPM), and last time I checked they will overnight ship. I had to call them to figure out what would be the best of their regulators to order for my O2 tanks though -- it wasn't clear to me online."

  5. I don't feel too good about already calling my doc a few days after she started me on a (working, so far) treatment, and saying "hey I decided to go for another treatment instead!" if you get what I mean.
    Totally get it.  You've done a great job of preparing yourself with knowledge and options.  Keep in touch.  Let us know how it's going.

  6. Christinauj, so sorry to hear about your suffering, and your mom's!  Everyone here can relate to your pain and your fear, and they will help you at least make it manageable, if not defeat it altogether.

    Yes, as Arcan says, please go back up this thread to my post to Arcan (and read all the posts in this thread, which suggest some other things to do until you get oxygen, such as chugging RedBull). 

    The advil probably won't help a bit -- and neither, unhappily, will any other pharmaceutical pain reliever.  You gotta get oxygen, fast!  Please read this: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790


    I strongly recommend that you start a new thread so that more people will see it and you will be easier to find.  But however you do it, post your questions and they will be answered.  In the short run, you need to get in touch with your doctor and get oxygen prescriptions for you and your mom.  But first, read that file I linked you to, so you know what to ask for--what to demand.  Even when a doctor, such as Arcan's, is on the ball enough to prescribe oxygen, they still can mess up the prescription (as Arcan's doc did).  The sooner you do all this, the less time you will be spending pleading with God (an experience very familiar to many people with CH).

  7. We are experiencing internet phone tag.

    As to your other musings, I think I may have touched on them

    Let me try to prevail on your kindness and restate my musing. You took LR for one high-dosage period, a stretch of two/three weeks, at least as far back as last December. You are chronic.  Since that time you have not had to re-dose at high levels, but only have taken LR in small amounts as a precaution or as an abortive.  This suggests to me that maybe one high-dosage 2/3-week period is preventive regarding future CH attacks.  Do you think that if an episodic took LR 3x/day for 2 weeks when out of cycle, that might prevent a next cycle?  Or do you think that CH somehow has to be present (that is, that an episodic would have to be in cycle), for LR to have an effect?

  8. Les, I see you posted while I was preparing this.  Thank you for answering Arcan so quickly and thoroughly!  Arcan is taking verapamil: Would that affect the licorice root's efficacy?  Arcan is considering imitrex: I think you have said that that would likely interfere.

    I'd like to add my own two cents of curiosity.  As I understand it, you took the licorice root 3 times a day for about two weeks, and then you cut back quickly (because of the powerful potential effects of the LR), and then you stopped taking it except as an occasional "antidote" for conditions that typically trigger you, or as an abortive when you felt triggered.  So it seems that, unlike practically everything else that people here use, licorice root might be basically a "one-and-done" preventive, with small usage later to prevent/abort in particular circumstances.

    We know that it worked for you when "in cycle" (since you were intensely chronic), and it seems to have worked for some episodics when in cycle -- but is there reason to think that if taken out of cycle at your original levels (3x/day for 2 weeks) it might have a long-term preventive effect?  Or even if taken out of cycle for longer periods at lower levels (1x/day for several months) it might have such a preventive effect?

    I suspect your answer might be "I don't know; hasn't been tried."  But I'm wondering whether theoretically it seems to you that the anti-CH effects might occur whether or not one was in cycle -- it kind of seems that way considering your experience.


  9. I don't recall him mentioning verap as something that gets in the way.  I do think he would say that imitrex does get in the way.  He did say that you should check with a doctor or pharmacist before starting licorice root if you are taking any prescribed meds. 

    For "preventing" during a cycle he recommended a 3-times-a-day regimen, but he said he got off that after a couple of weeks because that's a high dosage of a strong medicine.  (That's why I'm not sure about "preventive" use off cycle -- it doesn't seem that you could take "preventive"-level dosages for any extended time.)  My daughter, along some people here at this site, really likes it for its mood-elevating qualities.  She takes it once a day.  We're hoping, of course, that maybe that will have some preventive effectiveness.

    The rule here is that there's no such thing as a stupid question.

    If you do try the licorice root, you might save some overall reading time by trying to make sense out of this attempt at a summary: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

  10. Yeah, I started reading that thread but I haven't gone through all 8 pages yet, plus his posts are huge so I figure it'll take me a while 

    I don't think you'll extract a crisp answer to your licorice root question even from reading the whole thread.  Maybe you want to do that just out of courtesy, but I also think you could just ask your question at the end of the thread, if you want to.  I think I can guess what Les's answer would be, but I wouldn't mind seeing it myself.

  11. What has been your experience with all of this, if I may? Have you managed to get it under control?

    It's one reason I'm not a "hero," Arcan.  I don't have CH; I've just been trying to help my daughter and learning as much as I can.  She's episodic (twice a year: when fall changes to winter and when spring turns to summer).  RC and O2 made her last cycle a lot easier and seemingly shorter, and we're hoping that a combination of strategies might prevent or diminish the next one (which we'll find out about pretty soon).  People here were wonderfully helpful to me/us in many ways; I stick around to learn as much as I can and to pay it forward.

    As for her, she has a very demanding, high-pressure job that she's been able to retain despite her CH (her cycles were typically lasting about 10 weeks), and she appreciates how precious life can be a lot more than a lot of her peers do.

    She has low blood pressure already, so she never could take verapamil; she reacted very badly to steroids (she and I are both pretty violently "allergic" to them); she hated the idea of injecting herself with imitrex.  It is suspected that one reason the RC worked so well for her is that she never really had the "busting blockers" in her system (Les has a similar hypothesis about licorice root working better for people who have not used a lot of "mainstream" meds, or not used them in a long time.) 

    Also, her doctors either didn't prescribe oxygen or misprescribed it (with cannula/concentrator), so she suffered needlessly for many years, which is one reason I tend to jump in here when there's an oxygen issue involved.  If I can keep anyone from, as I say, suffering needlessly, it seems important to do it.

  12. With any luck at all, Arcan, there will be a treatment for something like permanent remission of CH before your cycles get worse -- if they do.

    Speaking of which, I haven't been through all the posts yet, but does anyone know if the licorice root treatment could work to avoid cycles?

    Here's the link to Les Genser's thread about licorice root.  I would try to say what I think his view is about preventing cycles, but he has been extremely generous with his time and I'd bet that he will answer a question you put to him there.


    The D3 thread that I mentioned in my first post, over at the ch.com board, contains suggestions that that regimen may be preventing cycles.  That's a good board for you to know about/visit anyway, since they talk a lot more there about "mainstream" treatments like verap and imitrex.

  13. You do a great job for a non-native speaker, Arcan!

    I have found that the word "trigger" is used here and in other CH discussions in a variety of ways.  Some triggers, such as alcohol, seem to create a headache almost immediately in many people.  (But some people are not triggered by alcohol at all, and some are triggered by some kinds of alcohol but not others.)  Other triggers are viewed as bringing on headaches that are worse than "normal," but not necessarily immediately (maybe later that night).  I could make a very long list of things that people describe as triggers, from stress to chocolate, perfume to tobacco smoke, gas, flying in an airplane, etc.  Unfortunately, because CH operates so differently in many ways from person to person, each person kind of comes to identify his or her own triggers.  For many people -- I would say most people -- things that trigger headaches while they're in cycle do not trigger them when they're out of cycle.

    Other people might comment on your decision to go with verap, O2, and other strategies.  I know that for my daughter (whose CH began when she just a little older than you), and I think for many people, her CH attacks were more manageable when they began, and became more difficult over the years.  For about six years she used nothing at all to prevent or abort attacks, just gutted through them.  So you might also have many years of relatively mild episodes that are manageable for you with oxygen and some other basic treatment.

    This is just my opinion, but if you're having success now, I would say to go with it but always remember that there are options.  I think many people here feel that if busting materials were not "illegal" and therefore not "mainstream," busting would be the preferred medical treatment for CH.  I took me a long time to understand that.  (I put "illegal" in quotes there because it is perfectly legal in most places to own RC (rivea corymbosa) and HBWR (Hawaiian baby woodrose) seeds, from which many people create the busting agent LSA.)  And short of these "non-mainstream" treatments, there are things like licorice root and vitamin D3 that are showing themselves to be quite effective for some people.  I guess I'm just saying that if you start having side effects you don't like (as you said in your first post, the verap does lower your blood pressure), consider the alternatives.  We all will hope that it will be a long, long time between your cycles and that you'll continue being able to manage them well.

    Sorry to go on so long, but regarding oxygen, do you have a good sense of what you have and what you need?  How high does your regulator go?  From what you describe, you might not need a lot of oxygen, but is your tank large and do you have another smaller one for portability?  Are you planning to ask your oxygen supplier for the mask or get one on your own?  No need to answer these questions if you're confident you have what you need, and they might be more important way down the road than they are right now, anyway.

  14. Arcan, there are real heroes here, and, while Ron's kind words are deeply appreciated, I'm not one of them.

    It occurs to me that there are some basic things that experienced people with CH know that you might not be aware of.  For example, many people find that slamming down a RedBull, or some other energy drink with taurine in it, at the onset of an attack helps a lot.  They often do that just before jumping onto the oxygen.  My daughter got by somehow for many years by eating coffee beans at the beginning of an attack.  Ginger tea helps some folks with the shadows, or even by reducing the severity of attacks (a teaspoon of powdered ginger in hot water works).  Melatonin (6-12 mg. taken before bed) has helped some people.  As you look around the site, you'll see many other strategies (capsaicin in various forms, for example).  It's generally true that you have to experiment to find what will work for you.

    Also, I assume you've noticed some "triggers" -- for most people, alcohol is a trigger, but many other things can also trigger attacks.

    Just some basic thoughts.

  15. Welcome, Arcan.  I'm going to let people with more experience answer many of your questions.  Surely you have to prepare for the fact that until a fully-effective preventive is available, you're likely to have more CH periods in the future.  In one way, if this can possibly be said about CH, you're "lucky," because new treatments are being identified and developed all the time.  Even the use of oxygen is a relatively recent development.  You have every reason to expect that CH will be "defeated" in the foreseeable future.  I don't think you have to worry about suffering from CH for the next 40 years, as you ask. 

    If I may say so, you're "lucky" in three other ways, too.  One is that you got a relatively quick diagnosis; many people are misdiagnosed for years and years.  The second is that you found this site, where you will meet great people who will do their best to help you. The third is that your doctor prescribed oxygen, which is the most effective, side-effect-free abortive you can get.  Many people have to fight for their O2; many never even learn about it.

    It's wonderful that your oxygen is working using just the cannula (the nosetubes).  For most people, they don't help.  You need a mask because you want to breathe in pure oxygen, not oxygen mixed with the air around you.  You say that you have a tank: that's also good, because often people who get cannula get a "concentrator" -- a machine that creates purer oxygen from the air in the room, but which isn't really very useful for the long-term treatment of CH.  I'm hoping you have a regulator on your tank that goes up to 15 liters per minute (lpm), though it sounds possible that you could get relief at lower flow rates.

    I would suggest that you read through my post here about oxygen: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    And that you at least look over the references (including one to a different file on oxygen) that are listed here, because it will give you a better idea of what people here are most often discussing:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298051886

    Since it seems you have high blood pressure, it could be that the licorice-root treatment that's been discussed here lately would not be advisable for you, but you could look at that information and also at a long but interesting thread about vitamin D3 at the clusterheadaches.com board.  Here are links to those: 



    The main thing is to keep learning and keep asking questions.  Best wishes to you for PF (pain-free) times ahead.

  16. Just to be clear, Ricardo, I wasn't passing any judgment on your experience -- just expressing my gladness that I haven't experienced anything more than a little testiness in the 6 months or so that I've been lucky enough to be hanging around here.

  17. Ricardo, thank you for this perspective.  With only the tiniest of exceptions, I have noticed none of the rancor here that you describe.  Sure would be hard for me to stay if it were like that.

    Regarding your ch.com thread.  I admit that I didn't read the whole thing (I have to admit that as much as I admire Batch, his gigantic font and lengthy-though-often-amazing posts kind of wear me out), but I wonder whether you've seen these commentaries by Dr. Sewell about some animal studies investigating the mechanisms of O2.  There are two of them; part 1 is here: http://www.clusterattack.com/blog/oxygen-inhibits-neuronal-activation-in-the-trigeminocervical-complex-after-stimulation-of-trigeminal-autonomic-reflex-but-not-during-direct-dural-activation-of-trigeminal-afferents/

  18. don t know yet if i will be able to get prescription for it

    , but i will discuss it with my neurologist ,i suppose i could fashion a mask , but i would hate to piss off the doctors with it at this point ,or the mushrooms

    The oxygen and the mushrooms are in two entirely different categories, met la.  As I just wrote in another place here, oxygen works, it's very safe for most people, it's the first-line medically recommended abortive, it's fully legal when prescribed, and for all those reasons it should be relatively easy for you to get from a doctor (although too many doctors have proven me wrong on that one). 

    Again, let me suggest that you look at this file, which will tell you why O2 is so very important, and which has some suggestions for getting your doc to prescribe it:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    If your doctor gets pissed off at your insisting on oxygen, you probably have the wrong doctor.  And you shouldn't have to "fashion a mask."  It should be part of what's provided to you with the prescription. Or you can buy one.

    You really, really should be moving forward on O2.

    i will get the biggest dose they sell 10k mg seems like alot maybe at gnc

    but i am wondering there are different forms of vitamins ,, what specific form of d 3 are you taking ? i mean the people who it is working for ? 

    From reading the ch.com thread fairly carefully, I don't see many people -- if anyone --  talking about the specific form of D3 they're taking, which leads me to think that any pill form must be okay.  And I see some doing 10K international units (not mg), and some doing less.  It's a lot of reading, but that's what you gotta do:  http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0

  19. I'm going to read more about the RC seeds too.. any short cuts to info?

    I think you're asking about general info, Rob, not just RC info.  There's a lot of info in the Clusterbuster files that you can access at the bottom right side of this page, under "File Jump." 

    I'll give you some short cuts in a moment, but since you say you've never tried oxygen, I think that's where you ought to put your efforts first.  It works, it's safe, it's the first-line medically recommended abortive, it's fully legal when prescribed, and for all those reasons it should be relatively easy for you to get from a doctor (although too many doctors have proven me wrong on that one).  I think most people here would agree with me that it's the best way for you to prepare for a future cycle, or deal with the present one if it continues.  You might want to skim this first (or even read it with some care):  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    Here's a good file about RC/LSA (other ones by TommyD contain additional information):  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

    Here's a highlights package (with a link to another page about oxygen):  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298051886

    Here's a summary of Les Genser's thoughts:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

    And here's an interesting thread about Vitamin D3 from ch.com:  http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/50

    It's a great community here.  Read up; ask more questions; you'll get answers.