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Posts posted by CHfather

  1. 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.

  2. 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.

  3. 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

  4. 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.

  5. 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.

  6. 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. 

  7. 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.

  8. 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




  9. 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.<<

  10. 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.<<<<

  11. 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. 

  12. 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.

  13. 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. ItÂ’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.

  14. 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 itÂ’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 youÂ’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

  15. 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.

  16. if CHfather could jump in ... what made us think tucker's first bust was good?
    Hard to resist an opportunity to quote myself . . . .

    I think we can typically guess pretty well when a dose has worked, after the fact, by the effects: often a good night's sleep, maybe some short-term decrease in attacks or severity of attacks, and some post-dose hits. In tucker's case, he took 54 viable (float-tested) seeds and had fairly typical post-dose reactions. That's why I consider that his seeds were okay and he took enough of them. Now that he knows the effects, he may decide to go higher.

    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.

  17. But since I am the one whom most will think you are referring to when you mention people PM'ing you with harsh messages, I would greatly appreciate it if you would clear this up.

    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.

  18. I suddenly feel I'm confusing everyone... maybe I ought to just read this board for a while and not post

    Purp, in my opinion you're not confusing anyone. 95-plus percent of people are going to go, completely rationally, with the tried-and-tested advice -- because it works, 95-plus percent of the time.  You, and some others, are going to examine that advice, for whatever reasons -- to see if it can be made better, or out of intellectual curiosity . . . whatever reasons.  People who want to engage with that can do so.  Nobody has to.  I think it's important to remember that this whole site, and virtually all the knowledge within it, was built by people experimenting and asking questions--"citizen scientists" taking responsibility for their own treatments.  If you look at some of the old LSA FAQs (if they're still here somewhere), you'll see how much the knowledge has grown.  When I first came here, no so long ago (fall, 2010), standard advice was to start with 10 or maybe 20 RC seeds.  10 would now be completely ridiculously low, and 20 would also be considered too low by most people.  The number has crept up as more and more people reported taking larger and larger numbers of seeds without psychedelic effects.  I could see it heading closer to 50 as a recommended first dose, as more data come in. I love the way you put your mind to these things, and value it greatly.  I guess if enough people PM you with harsh messages telling you to shut up (as has happened with me), you'll have to decide who to listen to.  I hope you'll listen to yourself.

    As for your questions on the Sewell chart, there I agree that you shouldn't worry it too much.  It was early (2008!!) research (funded in part by Clusterbusters).  I would say, though, partly in agreement with Jeff and partly from the chart itself, that the .8mg/gram statistic is just an average, and the median seems to be closer to 1mg/gram, with the average being pulled down by one or two very bad batches.  And who knows how old the seeds were, how they were stored, all that stuff?  Again, this was early days. (I remember trying to prepare LSA from HBWR seeds using the method described there and practically going nuts at every step, to the point that I just gave up and ate the doggone seeds, husks and all! (I was doing this to try to figure out how to do it for my daughter.) Thank God for RC, I say--and of course, for Clusterbusters -- at least for a completely inept "chemist" like me.)

    Similarly, I can't quite figure out the effective/ineffective data, but we know some were ineffective because of not getting LSA, and I don't think we know how these people treated themselves: Did they take multiple doses five days apart, for example?  So, like you, I'm inclined to trust the higher success rate here at CB, as people do the right thing in the right way (as we presently understand what the "right thing" and the "right way" are).

  19. Shouldn't your weight figure into this as well? At 160lbs you might need 60-70. At 100lbs, that could be too many, right?
      As Purp said, there's a danger of adding confusion on confusion here, but somebody who knows can always step in.  I can only say regarding this question of yours that I have always heard that since psychedelics work on your brain, body size is not a key dosage issue. 

  20. Use a high speed coffee grinder to bust up those seeds.
    Okay, well, here I go again. I had learned, straight from the horse's mouth, that using a coffee grinder was a bad idea. Alleyoop posted on 8/29/10: >>The blender is out, as is the coffee grinder.  Heat is the enemy, and both of these appliances produce a lot of heat.<<

    I'm happy, as always, to be corrected if this info is now outdated.  I understand that it's just a recommendation, not a rule -- and obviously the coffee grinder works for bb and others.  But if "better safe than sorry" is in play here also and you want to avoid heat just in case, a mortar and pestle is a good way to go.  Makes a nice powder with minimal effort, except to keep the seeds from flying out of the mortar.