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CHfather

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Posts posted by CHfather


  1. My daughter also gets better results with a "wand" or "tube" (I haven't been able to find the right official name for it)--like the one shown in the photo at the ch.com oxygen page (http://www.clusterheadaches.com/O2/index.html) next to the heading bubbler/moisturizer--than with a mask.  But she's never tried the Optimask, which so many people swear by as a "game-changer."  And I assume you're read here about "power users" with 25-45 lpm flows and big bags.


  2. Clusterbusters?

    I realized after I posted this, Bob, that it might seem like I was somehow dissing my much-beloved Clusterbusters, which wasn't my intention.  I know, of course, about the important research Clusterbusters has funded, and your big role (personally and through things like the NatGeo programs) in spreading awareness, but I don't know anything about whether there's a larger "umbrella organization" for CH with some kind of unified approach to fundraising, research, and advocacy, as there is for so many other conditions. 


  3. My problem always is . . . now what???  I'd be willing to try to participate in finding her, or imploring her . . . but what would be asked of her?  (Pretty sure she wouldn't endorse busting, of course (though I guess you never know), but as spokesperson for some campaign for research or awareness or whatever . . . it does seem like an absolute natural.

    Also seems like maybe NatGEo could use her as some kind of spokesperson/narrator and get more attention . . . but then again, there's the "illicit" connection.

    I don't know anything about the rest of the CH world; for example, I've only been to ch.com once or twice.  Is there some organization that has any kind of act together in terms of research and advocacy??????


  4. Thanks so much for letting us know what's going on!  Good luck with the verap (I'm not saying that sarcastically -- I really hope it works out for you.)

    One last trivial piece of advice: Be sure that the folks who deliver your oxygen set it up for you and show you how to use it.  Yes, it's pretty simple, but you want to know it's set up right when you need it.  Stuff happens, and this is definitely a time when you don't want it to.

    There's more useful advice at http://www.clusterheadaches.com/O2/index.html

    Best wishes!


  5. shahooty, oxygen is probably your most urgent requirement right now.  I know exactly what you mean about having a heard time thinking -- that beset my daughter, too, and she's a darn smart gal.

    With many curses hurled toward your idiot doctor who won't bother learning about oxygen, I'm going to assume that you'll get a welding tank.  You need a large one, or two, and you might want a smaller one for portability.

    Then you'll need a regulator that allows a flow rate of at least a maximum of 15 lpm (liters per minute).  Many people are now using 25 lpm and higher.  And you'll need a non-rebreather mask.  Because there are two different kinds of regulators, you'll need to know what kind your tank requires before ordering it.  You can generally find regulators at eBay.  We got ours here: http://www.tinashomecare.com/oxygen_therapy_oxygen_regulators.htm?gclid=CMP24tObqacCFRVx5Qod_wypDw.  In my experience, the eBay shipping took about 5 days, which is a long time to wait.  If you're anxious and willing/able to pay more, the folks at that link I gave you will overnight it.

    The Optimask is the preferred mask.  You can order it at http://www.clusterheadaches.com/khxc/index.php?app=ccp0&ns=catshow&ref=LifeGas.  I don't know how fast they'll ship.

    While you're waiting for all that, a few suggestions (which I should say I've only read about): Have you tried chugging RedBull to abort?  Here's a testimonial about red pepper: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1297394064/0#0 .  Some people suggest going to a fire station and asking for oxygen treatment, since EMTs there can administer it.  Some suggest inhaling very cold air forcefully through your nose (I've read about some who do that through their car's air conditioning vents if they don't live in cold climates).  Intense physical exercise helps some people abort or reduce the severity of an attack. 

    I think many people would advise that you might want to continue any meds that work for you if your attacks are severe, nothing else helps, and you don't yet have your oxygen set up, and then you can detox once you have the oxygen.  But that's a judgment call for you.

    You might look at licorice root as a "busting" option, but again that's your call, eventually:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

    I'd like to return to the subject of your heartless idiot doctor with some suggestions, but that also seems like a subject for another time.


  6. Some people react quite severely to cortisone (I'm one of them; my daughter is another), often with intense muscle tightness and deep joint pain; some people have lesser reactions along the same lines.  Once again, I've only had one doctor who actually accepted that this could happen, even after it happened, and that includes many who administered cortisone on a nearly daily basis.   Drinking a lot-- lots and lots -- of water has helped me, but I never knew if I was actually washing the cortisone out of my system (didn't care, either: in my case, the treatment was worse than the condition, but I'm not talking about CH).

    This may be completely trivial and unresponsive to anyone's situation here, but I also have restless leg, and I do find that dedicated stretching, particularly of hamstrings, gives me a lot of relief.  I never go to bed without a good half-hour of leg stretches, and I try to do them every morning, too.


  7. Mostly I want to pay it forward and enlighten the ignorant.

    Thank you!

    I agree with all thatÂ’s been said here that amounts to, Why take a risk? My biggest concern from what youÂ’ve said, Dan, is about risks you would be taking. (I also figure that Bob W and the producers have already thought of everything IÂ’ve thought of, and will not put you at risk, so in large part what IÂ’m saying here seems like itÂ’s likely to turn out to be unnecessary.)

    The post office processes almost 600 million pieces of mail every single day. I strongly doubt that it’s going to start screening anything in any new or more diligent way for a few shipments of mushrooms or LSD. So I don’t feel very worried about that general issue, even though I agree (a) why take the risk and (B) you going to your mailbox doesn’t sound like must-see tv.  I guess it also seems to me that even if they don’t show you checking your mail, if they just say that some CH people are fortunate enough to get gifts in the mail when they need them, it will likely have the same effect on USPS policies as actually showing it—whatever that effect may be, which I would predict to be close to zero unless some radio or tv nutjob (don’t make me name names) decides to make a few more million dollars by persecuting someone else.

    But how are they gonna do all this so you are protected? I mean, being on camera taking illegal drugs (or admitting to taking them) does not seem wise. I was figuring they were going to blur out your face—but how would they show you having a CH attack if they did that? 

    Just from a curiosity standpoint, I wonder how effective that having-an-attack scene would be, anyway.  Won’t people who are watching, who don’t know what it’s like, just figure you’re exaggerating it for the cameras?  Why wouldn’t they have some “hidden-camera” footage of someone else, like what’s already on yotube—seems more convincing.  But like I say, I’m not the expert.  My concern is for you.  And like I also said, I trust that some rational person involved in the production is helping you look out for your interests.

    I also presume that they will be talking about the ineffectiveness/downright backfiring effects of typical CH "medications," so that the need for the shrooms/acid/LSA is clear to viewers.  Part of your story, I'm assuming.

    All that said, it does seem that putting a human face (which Bonkers assures me is a more-or-less accurate description of yours) on CH could make a big, big difference for a whole lot of people, and—if the risks are properly managed—would be so very much worth it.  Thanks for doing it.


  8. The Docs seem unwilling to prescribe O2 or anything else. Does anyone know how to route around the Army for second opinions, outlying civilian docs, etc etc etc? Thanks much!

    ClusterFields, I remember a heart-rending post recently from another military guy, Stevil, who had never been prescribed oxygen.  Many, many folks "route around" their civilian doctors by getting welding oxygen and then buying a mask and a regulator to create their own O2 system.  If you want advice about that, just ask (or start at the ch.com "oxygen page" at the "Menu" tab on the left of this page). 

    I did read this at the ch.com board: >>>Yes, Tricare Prime does cover O2. Find a med equipment supply company and they should be able to do the paperwork. No referral required. Probably need a written script. Co-pay has been $5 a month for me. Don't accept the standard 8 LPM regulator like I did. O2 has never worked for me because of this. You need a non rebreather mask and whatever flow rate it takes to breathe freely. I need at least 13 lpm, some on this board say they need up to 20.<<<  You can see the whole thread at http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=print;num=1196877119  and if you go to the main board and type "tricare" into the search bar you'll find a lot more.

    Updated versions of the article about O2 mentioned in the thread that the link above leads you to can be found here:  “High-Flow Oxygen for Treatment of Cluster Headache” Journal of the American Medical Association  http://jama.ama-assn.org/content/302/22/2451.full

    “Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results from the United States Cluster Headache Survey” http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-View-Online-Publication-HEADACHE

    Hope this helps.


  9. Bejeeber -- Yes, I mentioned that in my post.  I think making BOL the primary focus is the most expeditious way of getting relief to sufferers (assuming that BOL works as well as we all are hoping), unless CH sufferers are willing to go out and start robbing people to feed their voracious psilo habits, since I'm sure it was fear of crime, primarily, and not compassion that made methadone clinics acceptable to society.  And I also think that the more that people in general appreciate what hell CH is ("Hey, I saw that on Oprah! It's really terrible.") and that psychedelics help it, the easier public acceptance of BOL might be (and we know that public acceptability does in fact affect the FDA's decisions, even though it shouldn't).  And I think that whatever is done to soften up the public in those ways would also benefit the "psilocybin clinic" approach if for whatever reasons -- such as disappointing clinical trial results or FDA resistance -- BOL loses its allure.

    Bryan -- From many posts here, I know that using busting materials was/is a big moral/legal issue for a lot of people, and that many intensely dislike the actual experience associated with taking them.  And we all also know that it can save lives.  Somehow I think of "subversive" as wanting to undermine something and even to enlist others in that undermining, whereas my primary motivation, and that of most others, I think, is just to help, and the "undermining" or "subverting" is a necessary evil, not a primary goal.  But here again, I'm afraid that I'm just splitting semantic hairs with someone whose intentions are positive and helpful (you).

    Digression . . . You know, ovarian cancer is a disease that can be detected very early if doctors are attuned to seeing it. It's just that the early symptoms, such as frequent urination, are also symptoms of more benign things such as urinary tract infections, and so doctors, as the saying goes, think horses when they see those symptoms; they don't think zebras.  So the Ovarian Cancer National Alliance has arrangements with many medical schools, where women who are suffering from ovarian cancer, and likely to die from it because it wasn't detected early enough (as early as it easily could have been), go into the med schools and talk to the students about what earlier diagnosis would have meant to them and their families.  Put a human face on the suffering caused by taking the symptoms too lightly.  I suppose what I'm saying here is more about oxygen and conventional drugs than about busting when it comes to CH, but the insane occurrence of misdiagnosis and incorrect or nonexistent oxygen prescriptions says to me that CH should have some kind of similar face to ovarian cancer in front of med students, or should come up with some kind of program to change misdiagnosis/misprescription.  (Maybe a hint that busting works would be nice for a willing doctor to give, too, for sure, but obviously that's trickier.)  I'm only saying that it seems to me that there are a lot of options for greater awareness that maybe are not being explored.   I even wonder whether if every successful buster told their neurologist and their family-practice doctor and every other medical professional that they encountered that busting had helped them, that that might be enough to change awareness and perceptions. 

    (Truthfully, I have no idea what the larger CH community is doing with regard to awareness, so maybe I just babbled on pointlessly -- not for the first or the last time, unfortunately).


  10. Well, this might be what you mean, and I might just be being picky, Bryan, but I don't care much one way or another about full legalization--all I care about is, selfishly, availability for people it will help.  In that sense, I don't feel very subversive at all.  Full legalization is, for me, a whole 'nother very interesting but secondary discussion.


  11. I just posted a summary of licorice root information down in the Clusterbuster files: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

    I really appreciated Les Genser's having brought this to our attention, and I just thought the threads became a little complicated so maybe it would be valuable to summarize their key points.  Les, as I say there, was kind enough to review the materials and give me permission to post them.


  12. Since you asked, I'll just babble a bit off the top of my head.  I suspect there's a better--if more difficult--way to go than a lawsuit against the Schedule I status of psilo (and LSD) (though a lawsuit might not hurt as part of an overall strategy, if you could figure out who to sue). Since there's no actual chance at all that psilo would be de-scheduled and made freely legally available (or even moved off Schedule I, in my opinion), I think the real question is, What's the best way to make it legally available to people with CH?

    Note that marijuana is also a Schedule I substance, but something like 15 states and the District of Columbia now have laws allowing people to have marijuana for medical use (with a doctor's prescription).  So the scheduling, it seems, doesn't actually prohibit use under controlled circumstances, even though that's what Schedule II (methadone, codeine, etc.) is presumably for.  So, theoretically, you could try to create a movement not to change the scheduling (since the scheduling isn't the actual barrier), but to add psilocybin/LSD to cannabis as something that could be grown and distributed in a controlled way to people for whom it would be beneficial, or to create a cannabis-like initiative for psilo/LSD in a state that doesn't have one.  (California's marijuana initiative was called, as I remember it, the "Compassionate Use Act," which I thought was great PR.)

    I guess the big issues right now would be, in technical terms, whether the use of psilo/LSD for CH can be said to be "medically accepted," and I think the answer to that is no; and whether the general public's attitude toward "magic mushrooms" and "acid" is in any way comparable to its attitude toward marijuana -- also no, I think.  But I'm sure marijuana faced the same issues in becoming legalized, although it was helped by the fact that so many people had used it and found it basically innocuous and quittable, and they didn't see the value in law-enforcement costs of trying to stop people from using it recreationally.

    So I don't think such a legislative initiative would be successful, but I think it could draw constructive attention.  Turns out that psilo may also be an effective drug for easing the anxiety of terminal cancer patients and helping them cope with their diagnoses, and ecstasy is very effective for treating PTSD (http://www.scientificamerican.com/article.cfm?id=mdma-drug-ptsd-trauma-psychedelic).  These observations were discussed during a conference last year called "Psychedelic Science in the 21st Century" that drew 1100 people and was reported, as you can see from the link, in places that included Scientific American.

    With this kind of activity, and the NatGeo special, and what I presume will be Bob Wold's subsequent appearances on Oprah and The Daily Show and O'Reilly, awareness of the cruelty of depriving people of lawful access to substances that can help CH and other conditions will grow.  I don't think any kind of "legalize psilocybin/LSD" movement -- or anything that can be characterized in that way by the vast Know-Nothing population of our country -- has even the slightest chance of being successful.  But an argument for "compassionate use" of those substances . . . maybe, some day (hopefully, BOL will be available long before that day).  At that conference I mentioned, the head of MAPS said, "This isn't the '60s. We've learned the lessons of that era, and now we're trying to integrate ourselves into science, into medicine, into society."  That's another important thing, I think -- not to get associated with the so-called "crazies" who just want another way to get high. (That latter point was basically the US Supreme Court's basis for ruling against the right of individuals in California to grow their own marijuana for medical use, whatever the legal reasoning they used to get there.)

    I don't know . . . maybe this general topic, which I'd call "What can we do?" (with an emphasis on the we), might be suitable for the upcoming Clusterbusters Conference(??)

    Directly to Bryan's point, there was definitely a time when I thought being a "legal martyr" was a heck of a good idea.  The more I thought about it, the more I considered what I'm saying here, which is that I think the word is already getting out, and what we can do best is to amplify it.

    Well, you asked!

       


  13. I've been trying to put together a summary of Les Genser's recommendations regarding licorice root.  The other day I took a very preliminary draft and pasted it into a message, just so I could see how the formatting carried over to this board from Word, where I was creating it.  I just noticed today that somehow I accidentally posted it, with the subject line "aggah," in the Clusterbuster files.  I have now deleted it, and I apologize to anyone who read it or tried to read it in that form.  Also, I had contacted Les and asked for his permission to try to create a summary, and I promised I'd show it to him before posting anything.  So, I also apologize to him for my error.   :-/ :-/


  14. Laura Ann, you just have to keep after the insurance people (is there someone who could help you with that -- it's just so hard fighting these battles yourself while you're suffering).  I might have already said this to you, but I would immediately send them these two articles (fax; send the links; whatever).  They're from top journals.  The first one proves that high-flow O2 is an essential CH treatment; the second shows how often O2 is not provided or provided wrong. They both make it clear that a lot of suffering results from wrong O2 prescriptions.

    “High-Flow Oxygen for Treatment of Cluster Headache” Journal of the American Medical Association  http://jama.ama-assn.org/content/302/22/2451.full

    “Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results from the United States Cluster Headache Survey” http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-View-Online-Publication-HEADACHE

    If you want to be more of a nuisance about this, you could google a phrase like [high flow oxygen for cluster headache] and just send them a reputable article (WebMD; ScienceDaily; etc.) every hour or so.

    A concentrator is definitely next-to-useless, if not completely useless.  It can't get to a high-enough flow (the regulator is internal); it's not pure O2; it's noisy and bulky.

    Could you (or someone on your behalf) also go back to your doctor and try to have him/her intervene?

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