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CHfather

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Posts posted by CHfather


  1. the oxygen seems to take about 30/40 mins on a minor headache before he comes round and the pain has gone. is this too long??

    Waaay too long!  Maybe even dangerously long.  You say the flow rate is 15lpm and he's using a non-rebreather mask, so I'm kind of stumped.  He either needs to switch to higher flows with a new regulator as Bejeeber has mentioned (about which Jeebs and others here are considerably more expert than I am, and which you can also read about at the two oxygen files I've referred you to), or maybe he's doing something wrong with what he has.  It's a tank, right, not a "concentrator" (a concentrator is typically a squat, gray, noisy machine that makes O2 from room air--practically useless for CH)?  And is there a hole on the side of his mask that lets room air in as he breathes in? That needs to be covered so he's getting only O2. (There's an illustration of this at  http://www.clusterheadaches.com/O2/index.html

    and here's what it says there:

    >>>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.<<<

    He could try the O2ptimask, which which a lot of people get much better results.  Maybe others will chime in here with things I'm missing.

    And we'll hope for the best from busting/D3.


  2. Is the oxygen helping him???  If not, he might want to try a higher flow rate and deeper inhalation/hyperventilation.  Also, as you can see from the oxygen file I referred you to, there is some equipment, such as the O2ptimask and a demand valve, that make the use of O2 considerably more effective.  And also also, I wonder whether, if the oxygen is helping him, he's staying on it long enough to completely abort his HAs -- it's recommended to keep using it for at least several minutes after the headache has gone away.  If you haven't looked this this file, it might help: http://www.clusterheadaches.com/O2/index.html

    Regarding the seeds, people start at all different levels.  Some start with what we would consider a very small dose (10-20 seeds), to see how it affects them. The problem is that generally that's not a high enough dose to have much effect, but you still have to wait five days before dosing again.  This is not a science: not only are people affected differently, the seeds vary in potency, so a lot is done by testing to see what works without undesired side effects.  I would say that many people, if not most, work their way up to a dose of 50-60 seeds or more . . . but some get relief at 30-40, and some have reported at least short-term remissions with as few as 15.

    I think most people take them around bedtime.  Many/most people get a very good night's sleep after dosing, which is quite a blessing in itself.

    Regarding the pain, I'll let others speak.  You could read this: http://en.wikipedia.org/wiki/Cluster_headaches      I always remember a doctor saying it was equivalent to the pain of having an arm or leg amputated with no anesthetic.  Others may also have advice about what you can do to help during an attack.  I'm afraid that "not much" is the answer, but maybe I'm wrong about that.  When my daughter was on the downside of an attack, it seemed that I could sometimes help by circling her arm with my hands and pulling down toward her wrist, as though I was getting the blood to flow in that direction.  But there were also times when any touching was unbearable for her.


  3. Jo, it's great that you're stepping in here to help.  Sometimes folks with CH can get so caught up by the pain and frustration that they stop trying to get better.  Maybe they've been to doctors who have not given them proper treatment -- almost everyone here has many stories about that.  But people here have been able to hang in there, often with the help of someone who cares like you do, and their lives are 100% better -- even pain-free in many cases -- because of it.

    Everyone here will tell you that oxygen is essential.  Does he have that (a tank with a regulator that goes up to at least 15 liters per minute, and a non-rebreather mask)?  You (and he) can read more here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    Can't overemphasize the oxygen.  It can stop an attack in 15 minutes.  It saves lives.

    Do you think he'd be willing to try the "busting" elements mentioned here?  As you might have read, they are taken at levels that cause little or no psychedelic effects -- and they work for a very large percentage of people.  You could start by reading this file (and there are many others on specific related topics in the "Clusterbuster files" section of this board): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865

    Is he taking some kind of prescription medicine now?  He might have to "detox" from that for five days before trying "busting."  Let us know; ask any questions you have; and answers will appear from people who have beaten this terrible thing, CH, and want to help others do so.  If you can get him to participate himself here, he will be sure to find many brothers and sisters who are "just like him" in many ways, and who will help restore his hope and determination.

    I would also recommend that in my opinion he should start right now on  the simple, inexpensive, easy, and safe vitamin D3 protocol that seems to have helped many, many people quickly and also lastingly.  You can read about it here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 


  4. Anthony, this is what TommyD says in the Clusterbuster Files section of the board: >>Most reports seem to indicate verapamil will block the clusterbuster treatment, though a few say they successfully used tryptamines while on verapamil, and some reports seem to indicate that it impeded, but didnÂ’t completely block, the treatment.<<

    I think that's as close as you're going to get to an answer: a definite maybe.  So maybe you'd want to detox fully, to be sure.


  5. One question, is flax seed oil with omega-3 equal to fish oils?

    ypu know, i think it is, but the guy who developed this regimen is pretty insistent that people should follow it as closely as possible.  i believe there are some vegetarians/vegans, for example, who have gone with a vegetable-based Omega-3 product.  it's hard for me to imagine that it would make a serious difference, though i guess the epa/dha proportions might be different(??).  maybe bejeeber, who has thought about this, will have something more useful to say.

    oxygen is crucial -- keep working on that!


  6. For the greatest likelihood of success, you want to do all four elements of the D3 regimen: D3, Omega-3, calcium citrate, and the lemonade/limeade.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804/0#0

    Since you've mentioned B2 a couple of times in other posts, I just want to emphasize that we're talking about D3 here.

    We've kind of slipped off the topic of oxygen a bit here in this thread, but that's the most essential element for aborting headaches.  Isn't there somewhere at your nursing school where they have high-flow oxygen and a non-rebreather mask that you could get to when an attack hits???  For 80-plus percent of people with CH, it aborts headaches within 10-15 minutes.  Here's a file you probably should look at about O2: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

    If you try it and it works, you won't let lack of insurance stand between you and getting O2, whether that's through a prescription or by getting welding oxygen on your own.  It (and busting, or maybe even the D3) will get you your life back.  QAnd . . . on behalf of other CH sufferers, you are in a position to make a big difference regarding treatment of CH by educating yourself, your peers, and your teachers.  It's always shocking to us here how little medical professionals know about CH, and how seldom they even prescribe the most essential, effective, and safe treatment there is -- high-flow oxygen with a non-breather mask.  You'll see in that file that there are articles about O2 in highly-regarded medical journals.  So I really hope you will get it and use it, not just for your sake but for the good it will do for many others when you tell others about how well it works and how essential it is.


  7. As others have said before me, at least until you decide that busting is worth it I can't imagine why you wouldn't try the simple, inexpensive vitamin D3 protocol that has helped many people quickly and also lastingly.  Take about 10,000 international units per day of vitamin D3, taken with food; 2 or 3 calcium citrate tablets per day, with or without food (these tablets should also contain magnesium and zinc); and 2,000-4,000 mg per day of Omega 3 fish oil, with food. And two glasses of lemonade or limeade per day with meals.  Many people start getting significant relief very quickly.  The levels I listed above are the "default" levels--you might wish to adjust according to your own tolerance.  These are not "megadoses"--all are within standard recommended daily allowances except the D3, which is high but not inordinately so.  To read a great deal more about the D3 regimen, you could wade through the following thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0


  8. Thoro, Here (below) is something Ricardo posted recently at another thread about seeds no longer working.  In a later post he said, >>One important thing to remember is to let the peppermint tea cool down to at least room temperature before adding the seeds....Both LSA and LSH are supposed to be sensitive to heat.<<

    Can't vouch for this myself . . . Professor_Tanaka tried it recently but hasn't posted about the results, except to say >>Peppermint + RC == definitely something different, imo.<<

    Ricardo posted:  >>>The real thing I want to throw out there though, is something I've said over and over and kinda surprised no one else seems to have tried it.  Once you seem to be getting tolerance to the seeds, get a new batch, grind em up and soak them in cold peppermint tea for a few hours.  The peppermint tea is high in acetaldehyde, and according to our good friend (and my avatar) Albert Hoffman, the combination of LSA and acetaldehyde will make LSH--Which he said at low doses is indistinguishable from LSD.  Higher doses tend to give some people anxiety so I would start with a small amount and work you're way up (especially if you are an axious person to start with, I am not, and have taken damn high doses without any anxiety)  I can not attest to the chemistry behind all this, but what I can say is that it is a different drug (LSA makes me sleepy and kinda narcoticized, This stuff definitely did not make me sleepy--if anything got a slight stimulant effect from it, and it kept me up for 12 hours) and it seems to help my headaches.<<<


  9. Not-Bob  ;), can you point to a thread or threads that illustrate what you are discussing here?  I've read virtually every post at this board since I came here, and I can't think of anyone who came for busting advice, or even came not looking for busting advice, who didn't get offered busting advice.  (If you think referring them to the very clear busting advice in the Clusterbuster Files is not busting advice, then I guess I just disagree with you about that -- but in most cases that is just a predecessor to further discussions anyway.)

    At the same time, the plain fact is that many people looking for busting advice here, or looking for general advice, are not ready to bust yet because they're not detoxed from meds that interfere with busting.  Oxygen is of course vital for that, and yet we have person after person after person saying their docs won't prescribe O2 and/or they don't believe they can afford either prescribed O2 or welding O2.  Those people are strongly advised, and often guided very specifically, toward getting O2.

    The best other alternatives I know of to potentially help people tolerate getting off the busting-blocking meds without (or with ) O2 seem to be licorice root (which is also limited by undesirable interactions with some meds) and the D3 regimen, which in my opinion has enough anecdotal support here and at ch.com to be worth recommending. 

    So when you say >>please, don't dilute what we do here on this board with anything other than [busting information]<<, are you saying we should just tell people to quit their meds cold turkey for five days when there are "alternatives" that just might make that a lot easier for them, particularly if they don't have/can't get O2?  Would you say to them that, yes, there are probably ways to make detoxing easier but they'll have to look somewhere else for them?  (i would gladly just refer people to the D3 thread at ch.com if it weren't so convoluted and the simple prescription weren't so easy to describe.)

    I'll say again that I've read virtually everything that's been posted here for the last nine months, and I can't think of a person who has been, in your words, "sent off" without busting information (not to mention that there's a whole huge board here teeming with busting information if that's what they want).  Is it just that they're not being encouraged to bust as strongly as you think they should be?  I'm assuming that if they try licorice root or D3 and it works for them well enough that, in your words, they "put off" busting treatments, but they know busting is a future option and they'll get help with busting if they ask for it, we don't consider that any kind of failure, do we?

    All that said, you and others have created this great place, and if you're troubled by its direction, that's reasonable cause for concern for the rest of us, and I look forward to reading what others have to say (and more of what you have to say, if you're so inclined).


  10. Here's one data point . . . If I'm reading this right, it says under the "Fares" tab that it's $20 one way for the hour-and-a-half trip from Rockford to O'Hare.  http://www.coachusa.com/vangalder/ss.details.asp?action=Lookup&c1=Rockford&s1=IL&c2=Chicago+O%27Hare+Airport&s2=IL&resultId=2222&order=&dayFilter=&scheduleChoice=&sitePageName=&cbid=962196355703

    Of course, you then have to get from O'Hare to the hotel . . .


  11. Haven't dealt with shadows -- but am I wrong in remembering that some people use the SPUT method (Small Pieces Under the Tongue) for shadows?  2-4 RC seeds or a small amount of psilo, kept under the tongue where it's easily absorbed.  I know SPUT is discussed in TommyD's files, but I looked through a few and couldn't find it.  Sorry if I'm dragging a red herring across the thread here.


  12. Kika, sorry you're back.

    Yes, "post-dose hits" are very common.  They usually are stronger than what you've been experiencing, and/or at different times of day than your usual HA.  I mention this because you might not be having post-dose hits (or you might); you just might not be using enough seeds to get a busting-level dose of LSA.

    Prednisone is likely to block busting, according to TommyD's file, where he says >>There are many reports that prednisone will block the clusterbuster treatment.<<  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731

    Hoping the ONB will work for you.  No idea how that might interact with busting.

    As we have discussed, you've been using amounts of RC that many of us would consider quite small.  Not telling you to take more . . . just sayin' that 15 RC seeds isn't many.  Were these fresh, or leftovers from 3 months ago?  Freshness matters.   But I'm gonna say this again . . . If a person uses enough seeds to be sure they're getting a reasonable amount of LSA from them, seeds are generally considered to be just as likely to work as shrooms are.


  13. Rob, you could try PMing Les if you haven't already.  He's always been very generous with his time.

    As I recall, you did not have oxygen, and it sounds like you still don't, so I'll repeat my/our earlier exhortation to you about that.

    Also, you could try the D3 regimen (which I'll be happy to describe to you again, if you want).  According to Les, it's very unlikely to interfere with licorice root if you go back on that.

    And I guess you also haven't done any busting, and you're not using any pharma meds such as Imitrex, if I'm also remembering right.  Depending on what you might hear from Les and how your HAs go, this could be a very good time to try some seeds or other busting methods.  I remember Les saying that the licorice root is out of your system in 24 hours or less.

    So, maybe plenty of options to completely wipe this thing out.

    Jerry


  14. want to give my best shot at RC Seeds.Funny, I ordered them and they arrived exactly the same day I saw the Neuro. I'd love to try the Shrooms but don't have the resources to locate or grow them.

    Brad, thanks for joining in with this personal experience, which I have seen with others on 600 mg/day of lithium.  I just wanted to comment on your remark about RC.  It's important for people to know that RC is not any kind of second-class treatment for CH.  RC works great for lots and lots of people, just as shrooms do.  Bob Wold, who knows as much about this as anyone anywhere, has said the LSA might even be preferable to psilo as a CH treatment.  The "problem" with RC is that because the LSA content of seeds varies, it's hard/impossible to precisely calibrate dosages.  But, really, people take pretty high dosages (60 to even 100 seeds) without significant side-effects, whether those side-effects are psychedelic or internal (stomach upset, etc.).  So the only real issue is to take enough to be sure you're overcoming the effects of any low-LSA seeds and getting enough LSA in the total dose.  I'm not recommending 60-100 seeds as a first dose or even necessarily as a later dose --we've had people here knock out their HAs with doses as low as 11 and 15 seeds--just saying that RC is fully effectively for most people, as long as they're not getting too little LSA when they use the seeds.


  15. i'm very glad the vitamins are helping, christina!  i'm sorry to say that a 20 cubic foot tank is very small -- as always, others please correct me, but i think this would only be good for treating one or two attacks before you'd have to have it refilled.  the larger tank that most people with ch have at home is about 125 cubic feet. 


  16. Best welding regulator for the money for our use....

    http://www.harborfreight.com/oxygen-regulator-94846.html

    there are several harbor freight locations in and near phoenix, and i think oxygen tanks can also be rented there.  this regulator is a bit more expensive than one bought on ebay (about $10-$15 more), but the advantage of getting and using it right away might very well be worth those extra bucks.  as i remember from postings here by other folks, this regulator doesn't have a specific lpm gauge, but can be adjusted just based on consistently filling the bag attached to the mask.  please correct me, racer (or anyone), if i'm wrong about any of this -- want to be sure christina is as fully informed and prepared as possible.  do you recall whether you also need to have/buy a big wrench in order to fully tighten it?


  17. britbike, maybe you've seen this abstract, from 1984:  http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.1981.hed2104132.x/abstract

    >>>>Nineteen male patients aged 26 to 67 years have been treated with lithium sulphate in the form of slow release tablets (Lithionit® Durules®) to prevent attacks of cluster headache. Treatment was given to a serum concentration between 0.7 and 1.2 mmolI. Eight of the patients had chronic symptoms and in all of them the treatment resulted in immediate partial remission of their headaches. The average headache index improved within 2 weeks by 85.3 per cent (75–100%). Three patients were treated for between 18 and 36 months. In one of them the treatment was still effective after 2 years, while the other two appeared in due course to become tolerant to the effects of the drug. Both of them, however, had long periods of remission after interruption of treatment, which may indicate that lithium alters the natural course of the disease in chronic cases.

    In 7 patients with periodic symptoms lithium had only a slight or no effect on the headaches. In four other cases lithium was given for, on average, 19.7 months (6-31), principally owing to psychiatric symptoms. This long-term prophylactic treatment resulted in an almost complete suppression of cluster periods. Two of these patients tried to discontinue the drug after one year. This produced extremely severe rebound headaches after 3 weeks.

    It is concluded that lithium is efficacious in chronic cluster headache. Lithium has only slight effects in acute periods of cluster headache but may prevent them in some patients when the drug is given in a free interval between two periods. In view of its potential serious side-effects, lithium should be given with caution to strictly selected patients.<<<<<

    So, if you're chronic, maybe this is something you'd want to try.  Does your doc have good reason for thinking you might be chronic?  The side effects of lithium can be quite unpleasant, as this says, and then there's the tolerance and the "extremely severe rebound headaches," and having to have your blood tested regularly.

    Could be that more is now known about lithium, positive and negative, since that old report.  I researched it when two neuros recommended lithium to my daughter within the past year, and I pretty much stopped here, since busting seemed to be -- and I believe was -- a whole lot better choice.

    If you've been lurking, then you can't have missed my broken-record recommendation of the D3 protocol.  If you have missed it, or if you'd like me to repeat it, let me know.  Also, if you're having only limited success with oxygen, you could try the higher-flow method, and/or perhaps more sophisticated equipment (demand valve; O2ptimask).  These things can be very important to get you to the place where you can use the shrooms, if you choose to.

    I understand it's a tough decision -- something that could help, but with possible/likely significant side-effects and long-term reduction in efficacy (or even severe rebound headaches).  And of course, to get to the shrooms you have to detox from meds that are probably helping you.  So I'm just providing this as information (which, to say it again, might be outdated).

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