kymera_gr7 Posted February 11, 2012 Share Posted February 11, 2012 G'day everyone, my name is Chris. I've been getting episodic cluster headaches for about 3 years now and was finally diagnosed officially by my PCP as of 2 weeks ago. I look forward to chatting with everyone and learning everything I can, as well as sharing what I know in hopes of helping others. Quote Link to comment Share on other sites More sharing options...
Bonkers Posted February 11, 2012 Share Posted February 11, 2012 Good to have you on board, Kymera. Feel free to ask questions about anything at all. The ClusterBuster Files (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?board=files) should answer most of them. Ron Quote Link to comment Share on other sites More sharing options...
kymera_gr7 Posted February 11, 2012 Author Share Posted February 11, 2012 Much appreciated sir. Quote Link to comment Share on other sites More sharing options...
Bonkers Posted February 11, 2012 Share Posted February 11, 2012 No sweat. Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 11, 2012 Share Posted February 11, 2012 Chris, the most basic of basics: Were you prescribed oxygen? If not, that's something you want to deal with promptly -- it's a very effective abortive for 90% of people with CH. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 Are you in cycle now? What was prescribed to you/what meds are you taking? There are a whole lot of files over there where Ron pointed you. Since no matter what you answer to my first few questions above, I'm going to suggest that you consider busting (which will require you to "detox" from most CH meds) and the anti-inflammatory "vitamin D3" regimen (which doesn't require detoxing), here are those files: Overview of busting: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 D3: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Quote Link to comment Share on other sites More sharing options...
kymera_gr7 Posted February 11, 2012 Author Share Posted February 11, 2012 I will make sure to dig through the links you guys gave me and do some more research here on the board. I have not been prescribed O2 but have been given it at the ER on several occasions with mixed results, but mostly good ones. I imagine my headache doctor or pain doctor will probably write that script or do whatever is necessary for me to get a bottle of it (my PCP generally sends me to specialists to get pretty much anything beyond antibiotics.) I am currently in cycle, but this cycle has been different from the others I use to have. Mine generally last about 3 weeks or so, but this one has been for 5 and it's been the worst one thus far. Current Prescriptions: 1) Fioricet w/o Codeine 2) Norco 10/325 3) Valium 10mg 4) Geodon 20mg 5) Phenergan 25mg They have tried Relpax and Zomig but I have an extremely high risk for stroke, plus triptans also cause me disassociation, hallucinations (visual and auditory), among a lot of other really strange side effects. Until I finally was referred to the headache clinic recently I generally self medicated (as a preventative) with mushrooms or LSD (which I have no access too anymore.) Marijuana seems to work as an abortive but not for prevention. (I use to have a medical card but then I moved to TXÂ :'() At the moment I have stopped taking my scripts as they seem to have no effect and have just been smoking the marijuana. From what I understand, considering the ineffectiveness of medication on me, the doctor is considering "Deep Shock Therapy" or whatever its called, where they stimulate the hypothalamus electrically. If you need to know anything else, feel free to ask. Quote Link to comment Share on other sites More sharing options...
Bonkers Posted February 11, 2012 Share Posted February 11, 2012 Kymera, I wouldn't let them do anything at all invasive until you've exhausted other possibilities. Dr. Peter Goadsby's had lots of experience with both of the following. I believe by "Deep Shock Therapy," you're referring to his 'Surgical approaches.' Greater occipital nerve injection: Injection of methylprednisolone (80 mg) with lidocaine into the area around the greater occipital nerve ipsilateral to the site of attack may result in remissions lasting from 5 to 73 days (RCT). This approach can be very helpful in shorter bouts and to provide a general reduction in burden in more prolonged bouts and in chronic CH. Surgical approaches: Modern surgical approaches to CH are dominated by deep brain stimulation in the region of the posterior hypothalamic grey matter and occipital nerve stimulation. In expert hands the results are excellent and appropriate referrals to expert centers are encouraged. There is no clear place for destructive procedures, such a trigeminal ganglion thermocoagulation or trigeminal sensory root section. I hope this helps. Ron Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 12, 2012 Share Posted February 12, 2012 Until I finally was referred to the headache clinic recently I generally self medicated (as a preventative) with mushrooms or LSD (which I have no access too anymore.) So, you could consider using seeds, which are just as effective for most people as psilo. Legal to buy and possess, inexpensive, easy to prepare, generally non-pyschedelic at the levels used for busting, illegal to drink once prepared. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 Have you tried RedBull, Monster, or some other energy drink as an abortive? Drink one down at the first sign. Helps a lot of people. Melatonin? Dosages vary, but 9-12 mg isn't rare, and I know some folks take 15 or more for extended periods. Melatonin might interfere with busting. Since you're off meds, you're also a candidate for the licorice root protocol, if that appeals to you. Also reported helpful by a lot of people. Some have used licorice root along with the D3 protocol, some have just used one or the other. This might go without saying, but I would think that given your unusual medical conditions, such as the high stroke risk, you might want to check with your doctor before starting anything. Licorice root: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 D3 already linked up above. Yeah, those pain meds (norco and fioricet) are not likely to help you. The other meds won't help your CH, either, but maybe they're prescribed for other reasons. If you decide to bust and you are taking any meds, you will want to check this file to see what might interfere with busting: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731 I hope you'll have an oxygen-related appointment soon. If O2 worked sometimes in the ER and not other times, you might want to try to get a higher flow rate than the 15 that's usually prescribed. But in the ER, the results might have been more related to whether the folks there knew what they were doing or not (at least 15 lpm, proper use of a non-rebreather mask). I think virtually everyone here would agree with Ron that you have many options before agreeing to surgery. Quote Link to comment Share on other sites More sharing options...
Guest Posted February 12, 2012 Share Posted February 12, 2012 DBS....hold on...listen to the good advice above... Welcome and you have to lobby these doctors, dont imagine they will do the right therapy. Find out for yourself what works and what you want to try and then tell them what you want. the bb http://www.plainboard.com/ch/chtherapy.pdf Quote Link to comment Share on other sites More sharing options...
diamondmaker Posted February 12, 2012 Share Posted February 12, 2012 Agree with the bb. Knowledge is power against the beast, and you gotta own this one. Quote Link to comment Share on other sites More sharing options...
kymera_gr7 Posted February 12, 2012 Author Share Posted February 12, 2012 Kymera, I wouldn't let them do anything at all invasive until you've exhausted other possibilities. Dr. Peter Goadsby's had lots of experience with both of the following. I believe by "Deep Shock Therapy," you're referring to his 'Surgical approaches.' Yeah, I'm going to go through pretty much everything with them before they do anything invasive, even my wife agrees on that one! So, you could consider using seeds, which are just as effective for most people as psilo. Legal to buy and possess, inexpensive, easy to prepare, generally non-pyschedelic at the levels used for busting, illegal to drink once prepared. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 Have you tried RedBull, Monster, or some other energy drink as an abortive? Drink one down at the first sign. Helps a lot of people. Melatonin? Dosages vary, but 9-12 mg isn't rare, and I know some folks take 15 or more for extended periods. Melatonin might interfere with busting. Since you're off meds, you're also a candidate for the licorice root protocol, if that appeals to you. Also reported helpful by a lot of people. Some have used licorice root along with the D3 protocol, some have just used one or the other. This might go without saying, but I would think that given your unusual medical conditions, such as the high stroke risk, you might want to check with your doctor before starting anything. Hawaiian wood rose seeds or morning glory seeds I'm assuming? I'd considered them. I also considered buying spores for psilocybe mushrooms and growing them (I use to cultivate edible mushrooms up north where its cool, I'm sure I could grow some P. Cubensis easily with the right equipment) Red bull and some energy drinks are just caffeine bombs and don't work. However, Monster has serotonin precursors and usually they do work as an abortive but not as quickly as a bowl of hash. Right now I'm pretty much relying on my last little bit of dank to carry me through to the 16th. I've also considered buying some 5-HTP. I've heard its a good preventative AND abortive. And yes, I double check with my PCP generally before I do anything. Oh, also, all those meds were prescribed to me for my CH's There's been a small amount of evidence that using Lithium or other mood-stabilizers with a benzo can help with cluster headaches. Didn't work for me though. The phenergan seems to take the edge off by reducing any aura, disorientation, hyperstimulation, aggressive behavior, and other things that happen to me during an episode, and it works in conjunction with the valium to potentiate the hydrocodone. That concoction with a Fioricet relieves the symptoms (not so much anymore with my tolerance, especially considering I use to be an IV heroin user.) The second it wears off I get the classical "thunderclap" return of the CH. That's pretty much why I stopped them, plus you can get withdrawal and "rebound" headaches as my doc put it. Once again, I appreciate the warm welcome and the knowledge shared by you folks. I'ma go ahead and continue reading, post any extra info I may have to help, and tick off the days til the 16th. Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 12, 2012 Share Posted February 12, 2012 Hawaiian wood rose seeds or morning glory seeds I'm assuming? Rivea corymbosa (RC) is the preferred seed here (by most). Easier to work with than Hawaiian baby woodrose. Fewer seeds needed than straight morning glory, and considered by some to have less bad stuff in the hulls. All in that "LSA" file. Several of your fellow TXans here growing 'em, who would be happy to advise you if you need it. Thing about the RC is that you could get 'em right away and give it a shot. Red bull and some energy drinks are just caffeine bombs and don't work. RedBull works quite well for a lot of folks (for that matter, so do "caffeine bombs," sometimes). It's generally believed that the high caffeine and taurine content in both is what makes them work -- Not saying that for you it isn't some other factor that is in Monster but not RedBull. Appreciate any insight like this from you about things that work for some but not all. There's been a small amount of evidence that using Lithium or other mood-stabilizers with a benzo can help with cluster headaches. Yes, and even lithium on its own. Just has nasty withdrawal symptoms (those rebound headaches), and so is generally just recommended for chronics. Which doesn't mean a doc won't or shouldn't try it with a person who's episodic when other things don't work. Plenty of discussion here about marijuana. Doesn't help for many but does for some. Very glad you're one of them. BTW, the search engine up top is quite powerful, so if you're interested in what's been said in the past about something, here and at clusterheadaches.com, keep it in mind. (I just looked up 5-htp. Not much there--nothing, really, except I see our man Jeebs has used it as a sleep aid.) Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted February 12, 2012 Share Posted February 12, 2012 Hey Ky, Getting spores and growing your own mushrooms sounds like a great idea to me. And while you're waiting for them to grow (not to mention the ticking of the days til the 16th) I agree with the suggestion about getting the RC seeds right away and trying them. They can be overnighted. About the energy drinks - there are many CH'ers who swear that using them in conjunction with O2 at the onset of an attack helps the O2 become more effective, and prevents the "1 hour later return attack" phenomenon from happening. Glad Monster is working for you! It is unfortunately common for episodes to last longer as the years go by, that's certainly been my experience, and I've seen many other episodics report it, but thank gosh that becomes a moot point with busting. Quote Link to comment Share on other sites More sharing options...
kymera_gr7 Posted February 12, 2012 Author Share Posted February 12, 2012 Anything I can add to help as well guys. The best way to figure something out is to gather as much data as you possibly can and organize it into relevant charts and the like, ya know? From there you have a fighting chance of at least better treating it. It is unfortunately common for episodes to last longer as the years go by, that's certainly been my experience, and I've seen many other episodics report it, but thank gosh that becomes a moot point with busting. I should have figured it worked that way. And while you're waiting for them to grow (not to mention the ticking of the days til the 16th) I agree with the suggestion about getting the RC seeds right away and trying them. They can be overnighted. Hmm. I'll check the price on a few places and compare that to the price of morning glory and other LSA containing seeds they have at various shops and organic horticulture places. Thanks for filling me in on that! Yes, and even lithium on its own. Just has nasty withdrawal symptoms (those rebound headaches), and so is generally just recommended for chronics. Which doesn't mean a doc won't or shouldn't try it with a person who's episodic when other things don't work. Yeah, my wife is bipolar and she just got back on lithium and she offered me some (for some odd reason she always has extra? lol!) and I considered giving it a little 2 week trial but decided against using anything too extreme til I see the doctor. I figure if I go in with my system clean they can get a fresh start before I go to the West Lake Headache Clinic. In the meantime folks... It's bedtime. G'night busters! Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted February 12, 2012 Share Posted February 12, 2012 I'll check the price on a few places and compare that to the price of morning glory and other LSA containing seeds they have at various shops and organic horticulture places. Fortunately RC is cheep cheep cheep, and it has become the overwhelming favorite amongst the veteran seed takers/testers 'round here due to it's combo of effectiveness, mild side effects, and ease of preparation. Gee willikers I'm becoming a regular RC salesman. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted February 12, 2012 Share Posted February 12, 2012 Bejeeber wrote on Yesterday at 10:57pm: It is unfortunately common for episodes to last longer as the years go by, that's certainly been my experience, and I've seen many other episodics report it, but thank gosh that becomes a moot point with busting. I should have figured it worked that way. Well I went negative there regarding episode length while neglecting to mention another potential positive factor for some of us episodic CH'ers: As the decades fling by, it's also fairly common for the remissions to become longer too, sometimes extending for several years (!), which can be a not so bad trade off. 8-) Quote Link to comment Share on other sites More sharing options...
Purple Posted February 12, 2012 Share Posted February 12, 2012 Well I went negative there regarding episode length while neglecting to mention another potential positive factor for some of us episodic CH'ers: As the decades fling by, it's also fairly common for the remissions to become longer too, sometimes extending for several years (!), which can be a not so bad trade off.Cool Agreed. And about cannabis, most people here will tell you to avoid it as it is a trigger. I partially agree. An older thread on this was bumped up recently: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1274593344/25#25 Different people, different reactions to it. I personnally can't see it as an abortive nor preventive but rather an ease to live through between hits kind of. more details on this thread. RC seeds did the trick for me. It took three busts. It's been 7-8 days since the last bust and I'm thinking about a 4th bust as I feel the beast trying to come back alive deep down. Quote Link to comment Share on other sites More sharing options...
kymera_gr7 Posted February 12, 2012 Author Share Posted February 12, 2012 Haha! Yes, I'm very impressed with the prices I've been seeing. They seem to be running about 10 to 20 dollars less than the morning glory seeds I spotted at Planet K last night. BTW I've been doing research on the Psilocybe Cubensis spores and found a website that looks like a decent one to order from, called "Earth's Tongue." Anyone ever ordered from there before? Or do you guys know of an even better, more reliable place to suit my mycological adventure? Quote Link to comment Share on other sites More sharing options...
kymera_gr7 Posted February 13, 2012 Author Share Posted February 13, 2012 BUMP: Okay so I was looking into Butorphanol (Stadol NS) and I don't believe its easy to get anymore (I had it once when I first started having CH's) HOWEVER... I broke my hand today and was in the middle of an episode when I got to the clinic for an x-ray. They gave me Dilaudid 2mg and I am going to make my own solution with it and put it into a nose spray bottle. I saw a few articles online from various websites about people using cold water extractions on hydrocodone/percocet as well as using Dilaudid, Opana, morphine, and some other painkillers as well. I'm about to begin the process using my leftover Norcos and then another batch in a different bottle using the Dilaudid. I'll let you guys know in a few hours how it works (if it works) and a formula to follow if you want to try for yourself. Wish me luck guys! Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted February 13, 2012 Share Posted February 13, 2012 YOU BROKE YOUR HAND TODAY?! Oh boy a nice little extra something on the side for you there hmm? A little sumthin' you didn't need! FWIW, I tried a prescription of Stadol back in the early 90's CH dark ages and it didn't work for me, but I do wish you luck and I hope you can get bustin' ASAP and not have to concern yourself with the narcos. Quote Link to comment Share on other sites More sharing options...
kymera_gr7 Posted February 13, 2012 Author Share Posted February 13, 2012 Yeah, like I said I try to stay away from the opiates but I look at it this way; I got great insurance so they were like 10 dollars and I don't really care about them so why not give it a shot? Worst case I just dispose of it. No big deal Quote Link to comment Share on other sites More sharing options...
Tuckerman48 Posted February 13, 2012 Share Posted February 13, 2012 Or do you guys know of an even better, more reliable place to suit my mycological adventure? Ralphster Spores ... he has been to a conference, and is a true friend of the clusterhead. That is why I support him, he supports us! Quote Link to comment Share on other sites More sharing options...
kymera_gr7 Posted February 14, 2012 Author Share Posted February 14, 2012 Will check up with them, bud, thank you much! So, for the home made Stadol, my success with hydrocodone wasn't so great. Too much tylenol no matter how much I strained it. The amount of water required makes it impractical since you'd have to use half the bottle of spray. However, the Dilaudid worked very well. I have a 10cc nose spray container and I used about half its capacity to dissolve all 20 of the 2mg Dilaudids. There was no need to strain as its mostly medicine with very little binder. Two sprays in each nostril proved effective within minutes. Quote Link to comment Share on other sites More sharing options...
Stump BeefKnob Posted February 14, 2012 Share Posted February 14, 2012 Or do you guys know of an even better, more reliable place to suit my mycological adventure? Ralphster Spores ... he has been to a conference, and is a true friend of the clusterhead. That is why I support him, he supports us! Tuckerman for President, Ralphster for VP! What are we getting ourselves into?!?!?! ;D Quote Link to comment Share on other sites More sharing options...
Tuckerman48 Posted February 15, 2012 Share Posted February 15, 2012 Kyle's tag line: Beer Judge, competitive eater, SUBMISSION GRAPPLER, and Ch sufferer. I would hate to know that my opponent had CH... I bet you never get submitted. You laugh at the pain that others try to afflict on you. 8-) Quote Link to comment Share on other sites More sharing options...
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