CHfather

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] or [discontinuing lithium] or [discontinuing verapamil] -- 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

You are right: Diver's tanks are compressed air, not pure O2. So, no, not an option.

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.

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.

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.

Love this! Thank you.

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

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) (?). 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.

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.

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.

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.

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.

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 http://madamedical.com/ http://www.floteco2.com

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.<<

Jeff, I'm sure you either know this or don't need it, but just in case, here are some sources for regulators besides eBay (for eBay, it's http://www.ebay.com/sch/i.html?_from=R40&_trksid=p5197.m570.l1311&_nkw=medical+oxygen+regulator&_sacat=See-All-Categories): The first three sell regulators of 25 lpm or more, as well as 15 lpm regulators, and the first one sells demand valves, too (I'm pretty sure Flotec also has demand valves). http://www.linde-healthcare.us/en/products_and_services/by_category/medical_equipment/high_flow_delivery_devices/index.html http://madamedical.com/ http://www.floteco2.com/htm/Products/Regulator/Regulator_RW_100-300_Catalog_Images/B-RW_100-300_Catalog.htm http://www.tinashomecare.com/oxygen_therapy_oxygen_regulators.htm?gclid=CMP24tOb...

Good on you for starting this new thread, M'k! Re-posting below the relevant parts of my answer on the other thread to your similar questions (just to keep the thread clear). Before that . . . When you say oxygen doesn't work for you, have you tried it at higher flow rates (25 lpm or more)? Have you tried an O2ptimask? Using a "hyperventilating" style of breathing? All of those things have made O2 effective for people who thought it didn't work (or had stopped working) for them. For that matter, when you tried it and it didn't work, did you have a flow rate of at least 12-15 lpm and a non-rebreather mask?? If your question is whether it's okay to dose with RC seeds while taking prednisone, just in case the seeds might somehow work, I don't know the answer to that. Have you experienced any effects from the seeds on your attacks, even a temporary worsening of the attacks, or them coming at odd times? That might indicate that you're getting what are called "post-dose hits," and post-dose hits suggest that the RC might be working. But of course most people here would urge you to try to get off all meds that can block busting and then give busting a fair test. [My previous post at the other thread] >>>Michelek, it is generally thought here that prednisone will block the effects of seeds. Do you have oxygen as an abortive (that might help you get off the prednisone)? If you're talking about RC seeds, I think most people here would consider 20 a pretty small dose. . . but, again, that's probably not relevant if the prednisone is blocking busting anyway. PS: If you're planning on staying in touch with this forum, you might be better off to start a new thread.<<<<

Before someone else mention this, I'll point out that EF Hutton nearly collapsed over 20 years ago, had to be propped up by other entities (sounds like me so far), and eventually disappeared (sounds like me, eventually). Great commercial, though.

Michelek, it is generally thought here that prednisone will block with the effects of seeds. That has also been believed about kudzu, but at least one person here found that kudzu did not interfere with his busting. (Of course, if prednisone does interfere and you're still taking it, then it doesn't much matter whether the kudzu also interferes or not.) Do you have oxygen as an abortive (that might help you get off the prednisone)? If you're talking about RC seeds, I think most people here would consider 20 a pretty small dose. . . but, again, that's probably not relevant if the prednisone is blocking busting anyway. PS: If you're planning on staying in touch with this forum, you might be better off to start a new thread.

This is another thing I know practically nothing about, but as part of the O2 research I'm doing lately I came across the following passage in the OUCH oxygen document. No idea how valid it is. >>Unless you provide a portable O2 system to the air carrier 48 hours in advance of the flight for inspection and approval, travel with private O2 cylinders is prohibited even as checked baggage. Although not required by law, some air carriers may provide O2 systems for passengers at a cost, and it must be arranged days in advance of the flight. It’s always best to plan ahead by checking with carriers well in advance of travel. If you must travel by air, take your regulator, mask, and prescription for medical O2 with you and order O2 cylinders at your destination.<<< In that document, on page 24, they show a couple of ways of creating a portable oxygen system. http://www.ouch-us.org/medications/oxygen/O2_CH_Abortive_v2r7_Final.pdf I also noticed that AirGas/Linde Group provides a travel-related O2 service: http://www.linde-healthcare.com/en/about_linde_healthcare/Patient-focused_care/oxytravel/index.html When my daughter is traveling to someplace where we know people, we ask them to make arrangements to rent welding O2 if she needs it. I can also say that the good folks from this site have sometimes agreed to make an oxygen tank available if she needs one.

I was just looking up information today about cleaning masks. Here's what the OUCH oxygen guide says (I'm only reporting what those "experts" say; I don't know anything myself): >>>O2 masks will start accumulating oil and other contaminants each time it’s used. The build up of dust, facial oil, or makeup can serve as a breeding ground for bacteria. This can taint the mask with bacteria and odors you might find offensive in the middle of an attack and after. It is equally important to keep the flapper valves clean and free of any foreign matter to ensure they operate properly. A good rule of thumb is to clean and test your O2 mask and system at least once a week. If you are using it several times a day, clean and check it more frequently. A good method of cleaning your O2 mask is to use a Benzalkonium Chloride antiseptic towelette. Benzalkonium chloride is a mixture of alkylbenzyl dimethylammonium chlorides. It is a rapid acting surface disinfectant and detergent that is active against both gram-negative and gram-positive bacteria, certain viruses, fungi, yeasts, and protozoa. It can be applied topically to the skin and mucous membranes and is tolerated well by most people. Benzalkonium chloride towelettes come in packets available over the counter at any drug store or chemist. If you are hypersensitive to cleaning agents, dipping a clean paper towel or tissue in a mild solution of a hypoallergenic soap will work equally well in keeping your mask clean. Once you’ve cleaned your O2 mask, place it inside a ziploc bag to keep it free of dust and lint when not in use.<<<< Source: http://www.ouch-us.org/medications/oxygen/O2_CH_Abortive_v2r7_Final.pdf

Keeping an eye on you all! Still too doggone busy to really get involved, but how could I not respond to clusterdad, clustermom? And 'dad, you need to tell us more about how you have tried RC and how you know it doesn't work. Like others have said, RC will usually (though not always) work, if you're using good seeds and taking them right. The "float test" that Mystina mentioned ties in with Jeff's question: in general, bad seeds will float and good ones will sink. You probably want to take about 50 or 60 good ones, ground to a powder and soaked for an hour or two in water. No trex, of course, because that interferes with busting, but I'm assuming you're not using that now.

Have you considered adding kudzu to the D3 approach? See this thread for info: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1326294637/22#22 Important to do the D3 as close as possible to the "prescribed" method. Latest full description of that approach is here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404

My pleasure. So very appreciative of all the excellent work you put into this!!!

Hard to resist an opportunity to quote myself . . . . Tucker's pretty much chronic. He's in a 7-month episode right now, and his last one was 11 months. It sounds to me from what he's said that things are at least a bit better for him. For a person with chronic CH, shortly after the second bust, that sounds pretty good to me as evidence that busting is probably working. "Probably" is all we ever have here for evidence. Also, he took enough seeds both times, assuming that they were actually non-floaters (--and assuming he didn't burn them up by using a coffee grinder. KIDDING!!! Grind 'em if you've got 'em, that's my new motto. Body language and vocal tone are friendly here, not hostile.) In my opinion, if he could jump to psilo, I'd also say why not, but I don't see a reason right now to think the seeds aren't working. Your questions, Purp, seem to me like the right ones for digging deeper. If I'm reading Tucker right, part of his concern about the effectiveness of his seeds is related to his not feeling any psychedelic effects. Tucker -- to be clear (and to reiterate what Purp just said), with RC seeds, most people who have treated successfully have had no effects at all, aside from maybe a slight "two-beer buzz" in a couple of cases. As long as you're using the non-floaters and getting a good grind, the numbers you are using are plenty. If you want to step it up more, I guess you could, but unless your seeds are worthless, really, you're almost certainly taking plenty.

Gosh, I wouldn't even imagine you doing that, and I'm sorry that I would have given that impression or allowed anyone to gather that impression. Definitely not you. Sorry.