CHfather
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Posts posted by CHfather
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so glad that red bull is helping!
here's a file that'll tell you a lot about O2, including some tips for getting your doc to prescribe it, which should be routine, but isn't: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790
also info there about welding O2.
keep reading. ask. you'll get answers.
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Without too much effort you can get those pants back up pretty quick.
Main seeds file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974
You can order them (rivea corymbosa seeds) from www.iamshaman.com.
They're not expensive. They're easy to prepare. They're legal to buy and possess -- just not to ingest. You can have them overnighted and start busting right away as long as you are detoxed from meds for 5 days and have no contraindicated meds/conditions. see this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731
many people here have created their own oxygen system using welding oxygen. you can read more about that here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790
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Javier, I'm afraid I don't understand this: >>I have questioned about O2 masks to the mother and they used a current one, without the bag<<  Because O2 can be crucial for this young man's wellbeing, can you please tell us more if you are able. What is the flow rate, in liters per minute (this should be marked on the regulator)? I don't know what "a current one, without the bag" means? Here is a link to a picture of the kind of mask that he probably should be using: the second photo, where it says "Non-Rebreather Mask." Does it look like this? http://www.sharinginhealth.ca/treatments/oxygen_administration.html
I say "probably" there because he might have a system that doesn't require a bag (a "demand valve" system), but that seems unlikely.
Does he get relief from oxygen? How long does it take? Does he breathe in any special way while inhaling the oxygen?
As spiny says, the relief from O2 can be miraculous.
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CHk, don't you want to try something right away before you start that long-term microscope investigation? RC seeds, which you can order today and have tomorrow, for example?
How's your O2? Sounds like you haven't needed it for a long time. Can you get something up and running quickly? Energy drinks?
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If I had a 15-year-old suffering from CH, I would try RC with him or her without hesitation. Of course, I'd get the O2 set up properly and maybe try energy drinks (although I suspect that overall, energy drinks are more harmful than RC). And of course, I'd start at low doses with the RC (10 to begin with). I think it's very unlikely that this young man will have any psychedelic experience with a small dose, and so I view RC as "medicine," not a recreational drug.
The thing about licorice root is that it increases blood pressure. Since this young man apparently had (or developed) low blood pressure, maybe raising it isn't a problem, but I'd be very careful with licorice root around a heart issue. I would guess that the D3 regimen might be more advisable than the licorice root -- but that's just a guess.
As the parent of a young person (now older, but she was quite young when it started), I completely understand the father's depression. But he needs to step up and help find a way out -- because there is one.
You can read about oxygen basics here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790
D3 here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804
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that's an interesting product! http://www.aeroshots.com/
but: (1) it doesn't have taurine, which most of us think is helpful, or even essential, in fighting a cluster attack; and (2) each time you "draw it in," you're getting only about 1/4 as much (or less) caffeine as there is in a cup of coffee, or in a typical can of RedBull. Apparently, you could draw in a whole one and get the full amount of caffeine, but from many accounts it's pretty awful tasting even in the smaller doses (even the people who make it say that it's bitter and the flavors are to try to mask the bitterness).
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50 sounds reasonable. When I first got here, about two years ago, 20 was considered a fairly bold first dose. Then, as more people reported their experiences, it crept up to about 30ish. Now we've seen lots of people take 50, 60, or more with no psychedelic effects (and, in almost all cases, no significant stomach upset or other physical symptoms). I knew someone who took 150 and became kind of dopey for a few hours (drunkish), but that was all.
The key is really to take enough. The research shows that (as you would expect) people who get too little LSA get no benefit, but in general those who take a large amount don't get more benefit than those who take enough. At least, that's what the research shows so far -- future data might change that understanding. Since the LSA content of seeds varies, 50 would presumably make it more certain that you are taking enough. (There was a woman here a while back who reported that her cycle ended after doses of 10 and then 12 RC seeds. She was also doing the licorice root regimen.)
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You probably missed the "More" button under the "seeds" category at iamsham. I think this link will take you to the page where the RC is:Â http://iamshaman.com/eshop/10Browse.asp
RC is strongly preferred over HBWR, if only because it is much, much easier to prepare. Some people say HBWR is "stronger," but I've never really understood what that means in practice, since you use much less of the HBWR and so, as I understand it at least, you still get roughly the same amount of LSA (and LSA is LSA). I think there are a couple of people here who have had success with HBWR but not with RC, but the vast majority do fine with RC.
Although in your first message you mentioned "quality not quantity," I'd say you want to order at least 150 seeds (not very expensive in the scheme of things), so that you are sure to have enough for several doses. (Although it's also true that while it says "100 seeds" or "50 seeds," nobody's sitting there counting them as they package them, so you usually get more than the number they say you're going to get. And of course, you could order 100 now and then be able to order more at regular shipping rates if you feel it's working well for you.)
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There's been a lot of discussion about the quality issue here, bounty. I'd guess that the most common site that people use is www.iamshaman.com. We have had good success with that site, and also with www.psychoactiveherbs.com. I suspect they will both overnight.
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bounty -- welcome!
Concentrator is a really bad option, for so many reasons: low flow rate, noise, and less than pure O2. If you're not getting a quick and lasting abort from your O2 (or maybe even if you are), you want a tank, at least a 15 lpm regulator, and a good mask, designed for people with CH: www.clusterheadaches.com/khxc
Most people here are skeptical about oral triptans, too: too slow to work. (If you're taking those triptans now, you'll want to "detox" for five days after your last dose before busting.)
Busting will stop the current cycle; preventive busting will often hold off future cycles; busting at the very beginning of a cycle will generally shut it down pretty fast.
I guess you'll hear various opinions here about RC vs. psilo, but I think there would be general agreement that since you can get RC right away and you don't have access to psilo, RC is where you should start. Success rates are very high with RC. Some very knowledgeable people think RC is actually more powerful than psilo; the problem is that the potency of seeds varies considerably, so it's harder to calibrate doses than it is with psilo. Lots and lots and lots of people here have busted successfully with RC. (It has the additional advantage, for some people, of having virtually no psychedelic effects at the dose levels needed to treat CH.)
You should look at the various files that are available, in particular these three:
http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865
http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731
http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130612
Some very fine folks here from the Chicago suburbs, including a ClusterBusters founder and hero, Bob Wold.
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Salander, in addition to spiny's suggestion, if you type the word discontinuing into google, followed by the name of the medication, you will find specific references for virtually any med you decide to look up.
For example: [discontinuing ssri]Â or [discontinuing lithium]Â or [discontinuing verapamil]Â -- all without the brackets.
Sometimes this will lead you to a more general reference. For example, [discontinuing lithium] leads to this website, which seems to have information about stopping practically any psychiatric med: http://www.comingoff.com/index.php?option=com_content&task=view&id=27&Itemid=47
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You are right: Diver's tanks are compressed air, not pure O2. So, no, not an option.
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d'd, many people who are chronic have had success with seeds. some of the most knowledgeable people in this field have said that LSA (from seeds) is actually more effective that psilo, except that dosing with seeds is more unpredictable because of varying potency of seeds, and sometimes, duds. you have nothing to lose by trying seeds now, if you don't have access to psilo. and busting with seeds will almost certainly have no effect on your ability to do anything -- most people have no psychedelic experience with the levels used for busting. here are some seed suppliers that people have found reliable (RC=rivea corymbosa)
www.iamshaman.com
www.psychoactiveherbs.com
http://www.bouncingbearbotanicals.com/ololiuqui-p-125.html
http://www.maya-ethnobotanicals.com/product_browse.phtml/catid/subid/herbid_107
i have purchased seeds from all these places, and they all have been effective.
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I spoke to my neurologist about licorice root, since i saw that posted here.He encouraged me to try, said there were no bad side effect i had to worry about.I think I will try that first while I research Busting more.
d'd, in case you had not seen this, there's a summary about the licorice root approach here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068
At the top of that page is a link to a much more detailed discussion of the licorice root approach, written by the person who originated that approach, Les Genser. Worth reading if you're serious about trying it.
A couple of people have had very good results with a combination of licorice root and busting.
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Joshua, you don't mention oxygen, at least not in this thread. Do you have it? Makes the detoxing a whole lot easier (or less hard).
Many people here have busted with some success while still taking verapamil. Your best bet is to be completely off it, but at some levels it doesn't seem to interfere with busting, or at least not completely. Maybe others will chime in about whether the level you're at with the verap should at least be reduced. But here's a post from a while back from a God Member here (a true God member, not just someone like me who posts a lot) to someone who was on 960 mgs of verap:
>>You can probably bust successfully while still taking verap. I did, although I have always felt that I would have gotten even better results, had I been able to get off of the verap successfully. Give it a go. What have you got to lose? But make sure you have read the CB FAQ and know what you're doing.<<<
Lithium is tricky. As you probably have read in the files here, it interacts unpredictably with tryptamines, and it's probably best to be completely off it. You can read the details here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731
There are people here with chronic CH who have had more success with RC seeds than with mushrooms, so you are not necessarily going with an inferior busting agent if you decide to try RC.
The doggone thing about lithium is that people who get off it can sometimes -- not always -- experience strong rebound "headaches" (we prefer to call them attacks). That's why it's primarily prescribed for people who are chronic. I don't want to scare you off, but I think it's something you should be aware of. I think most people here would tell you that it can be worth it if you can do it. As M'Girl says, you need to talk with your doctor as you cut down on any med, maybe particularly lithium.
The hearts of many people here, including me, go out to you, and we wish you the best.
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i called walk in clinics and told them what I wanted and why until I found one that agreed. one trip & $80 dollars later I have a lifetime prescription. Just be forward about what you want before you waste your time.
Love this! Thank you.
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Welcome, Marlene. Most people with CH have experiences with doctors that are disappointing or frustrating. For example, inhaling pure oxygen is the best abortive there is, and it's the medically-recommended abortive . . . but a large percentage of doctors don't know about it/don't prescribe it/won't prescribe it. Here is a link to doctors that have been recommended by people with CH: http://www.ouch-us.org/chgeneral/OUCH%20DOCS%20-%20US%2005-20-2012.pdf
(Not sure whether you're in NY, NJ, or maybe CT, so you can find the locations that work for you. Recommend that you go to this list quickly and get the info you need, since it's apparently not certain how long it will remain posted at the URL I gave you.)
Most people find energy drinks--something high in caffeine and taurine, such as RedBull or Monster brands--to be a helpful abortive if you drink it as soon as you feel an attack coming on.
So . . . in the short run, try that (there are some other strategies you can try right now that others might want to mention if you want to ask us for more info: melatonin, kudzu root, licorice root, and a vitamin-D3-based regimen have all helped people). But getting a good doctor who will prescribe oxygen is essential. At the least, try to get to a headache center, not just a general-practice doctor or even a neurologist.
Most folks here have turned away from the kinds of meds any doctor is likely prescribe, for a variety or reasons--very yucky side effects, extending cycles and worsening individual attacks, etc.--and found that busting is the way they prefer to go.
Here are links to some info about some of the things I've mentioned. Like I say, just ask and the great folks here will help you as best they can.
Oxygen: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790
Busting: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865
Licorice root: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068
The "D3" method: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404
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Congratulations on all you have accomplished, Brad!! I remember (I think) that the last time you were here you were afraid that you might have to drop out of school. I'm also remembering (I also think) that you were using only D3 plus O2, and maybe some energy drinks (?) to treat your CH (plus the imitrex). There's a relatively new thread at ch.com about the D3 regimen -- You might check it to be sure you're taking it in accordance with the latest info: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404
Seems like you might want to consider starting out at a higher D3 level to ramp up more quickly (20,000 IU instead of 10,000) (?).Â
I hope the strategies you developed last time are going to get you through this time, too. Or maybe, even better, that it's not CH but those sinus headaches that you're feeling. If you need advice about any of the things you haven't tried yet, you know we're here for you.
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Does anyone know why a Dr wouldn't prescribe O2?
C'Town, doctors not prescribing O2 is a great mystery--or, really, a HUGE FECKING CRAZY FRUSTRATION THAT MAKES NO SENSE AT ALL. You have a few options: (1) Try harder to get it from your current doctor; (2) Find a different doctor who will prescribe it; (3) Create your own system using welding oxygen. You can read more about those options here, particularly in sections 7 and 9: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790
You also can see there how many doctors fail to prescribe oxygen. (There are a couple of very special circumstances in which oxygen is not recommended, but it's highly unlikely that they will apply to you.)
Everyone here can, and will, help you with whatever you decide to do. Probably needless to say, this will also help you with your what-to-do-at-work question from that other thread. It will change your life.
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what jeff says about going from episodic to chronic is true. but i would not let a screwy cycle scare you: lots of people have them, and it doesn't mean you're becoming chronic. ch might be something you're "stuck with for life," as you say, so figuring out how to bust it is essential. and at the same time, there's also other stuff out there being developed or tested that will make ch a lot more manageable in the future, so that what you're "stuck with" today is not going to be the same as being stuck with it in the future. maybe even BOL-148, one of these days.
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trypt, good for you for seeking all the information you can get! here are a few tentative answers:
red bull and monster seem to be the preferred energy drinks, though i have read of people using others. i suspect they're pretty much all the same, as long as you make sure they have both caffeine and taurine. some people like "5-hour energy" drinks, even though it doesn't have as much caffeine. since there are different versions of redbull and monster (different levels of caffeine and taurine), you might test a few to see which are optimally effective for you (quick abort, less jitters). at their websites, they tell you the ingredients in the different ones.
i've done a lot of reading about O2, and i'd say that there is no danger of the tank exploding from too much heat from being stored in a car. at the same time, the e tanks are not really so cumbersome, are they, so you could take them out in the evening. you do want to secure them so they don't roll around--you could bust off a valve, which could be dangerous (the tank, i have read, becomes a missile).
regarding equipment, i'm not disputing jeebs's emphasis on a demand valve, but you might first want to get yourself an O2ptimask, which also makes aborting more efficient (and is a lot less expensive than the demand valve system). Also, many people find that quickly downing one of those energy drinks before hitting the O2 speeds up the time required to abort.  You can get the O2ptimask here: http://www.clusterheadaches.com/khxc/
Demand valve info here: http://www.linde-healthcare.us/en/products_and_services/by_category/medical_equipment/high_flow_delivery_devices/index.html
A regulator of 25 lpm or more, and "proper" breathing technique (hyperventilation or something like it), can also help you beat back an attack more quickly at work.
Just in general in terms of your searching here, the search engine at the top left of each page will yield lots of information with the right keywords. Oxygen is a frequent topic, and can be searched in the same way, over at www.clusterheadaches.com.
Finally, it's odd to me that you can abort with RC but not bust. If you find yourself short on other busting supplies, I'd definitely give RC another try. And it's not clear to me why you were hesitant to take a few before work, since for most people there's no psychedelic effect from small (or, in most cases, even relatively large) doses.
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Then there's Dr. Oz (appropriately named) and his offensively ridiculous take on CH. http://www.doctoroz.com/videos/all-natural-headache-cures?page=2
Bastards.
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kvb, 1Eye provided a link above for the O2ptimask: http://www.clusterheadaches.com/khxc/
As spiny says, you can also buy a regulator online. Here are some places. (Of course, be sure you order a regulator that fits the kind of tank you have.)
Many people order a regulator from eBay, although it's not always common to find 25-plus-LPM regulators there. HereÂ’s a link: http://www.ebay.com/sch/i.html?_from=R40&_trksid=p5197.m570.l1311&_nkw=medical+oxygen+regulator&_sacat=See-All-Categories
http://www.lifegas.com/gas_devices_and_therapies/special_oxygen_needs.asp
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http://www.docguide.com/management-cluster-headache
Not much here, but it's new and apparently aimed at family doctors. Is anyone familiar with where the 7-years-to-accurate-diagnosis statistic comes from?
>>The big problem is the diagnosis of cluster headache as demonstrated by the diagnostic delay of 7 years. However, the relatively short-lasting attack of pain in one eye with typical associated symptoms should lead the family doctor to suspect cluster headache resulting in a referral to a neurologist or a headache centre with experience in the treatment of cluster headache.<<
My doctors visit
in General Board
Posted
Disgraceful, disgraceful, disgraceful -- but tragically not uncommon at all. Better than a neuro (they're often clueless, too) is a headache center. I can tell you one thing someone here did: Called walk-in clinics and specifically asked whether they would prescribe O2 for CH. Found one who would. His message was along the lines of "Sixty bucks later I had my prescription." Worth trying? We've already discussed welding O2, I suppose?