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CHfather

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Everything posted by CHfather

  1. Thank you for responding so thoroughly, Fester. I doubt that there is anyone with CH who hasn't cried or punched him/herself in the head -- at the least. Since you added "symptoms that last for up to three days at a time," and I'm not quite sure what that means, and you added "sensitivity to light," which is not a typical CH symptom (although some have it) but is a typical migraine symptom, and from some of your other answers, I wonder whether you should see a non-flakey headache specialist. (And also because your doctor calls it "cluster migraine," which is a term that is sometimes used, but I don't think should be used by a medical professional.) At the bottom of this page I'll post a list of doctors in Illinois who are recommended by people with CH. They seem to all be in the Chicago area. If you live closer to another state, you could look at the whole list here (for example, there are some in Merrillville, IN, if that's closer to you): http://www.ouch-us.org/chgeneral/OUCH%20DOCS%20-%20US%2011-17-2011.pdf At the least, I'd strongly recommend asking your current doc for oxygen again (at least 15 lpm with a non-rebreather mask) and, as I said, trying the D3 regimen or licorice root. When you get your O2 system, if it doesn't work for you, you can upgrade it with a better mask and a higher-flow regulator, which will give you a high likelihood of success. Those things might make it at lot easier for you to "detox" and give busting the best chance of success (maybe with RC seeds while you're growing your other crop). If your doctor's not inclined to prescribe oxygen, we do have some resources here (such as the article in the Journal of the American Medical Association proving the effectiveness of O2) that might help persuade him/her. You can also create your own oxygen system, as many people with CH have done, using welding oxygen and parts you can buy online. Here's that list of Illinois doctors: Aurora: Dr. Karen Burgner (PCP) Dreyer Medical Clinic Chicago: Diamond Headache Clinic Dr. Robert Wright University Neurologists Dr. Kenneth L. Moore Glenview: Dr. Thomas Freedom NorthShore - Glenbrook Hospital Highland Park: Dr. Trupti Gokani North Suburban Wellness Maywood: Dr. Matthew McCoyd Loyola University Medical Center Northbrook: Dr. Lawrence Robbins Robbins Headache Clinic
  2. Thanks, Fester. The Sumavel is sumatriptan -- It's Imitrex using a different delivery system. It is very unlikely that you will be able to bust successfully while using this -- a five-day "detox" period is almost certainly required. Percocet rarely helps with cluster headaches, and it, too, is said to block busting, requiring a detox period. Here's a file about all that: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731 Did oxygen not work for you? Was it a high-flow (15 liters per minute or more) system with a non-rebreather mask? Because a good oxygen system is very beneficial if you're going to get off the meds that block busting. Forgive me if I'm being a jerk about this, but "cluster migraine" is not really an accurate term: You could have migraines, or cluster headaches, or even cluster headaches and migraines, but not "cluster migraines." I'm not picking at your word choice, I'm just wondering whether you actually are sure you have CH, because you might be barking up some wrong trees here if you don't. Do you have classic CH symptoms: the icepick pain on one side of your head near or behind your eye; conjunctival injection (the mucous membrane that covers the front of the eye and lines the inside of the eyelids looks red/inflamed: “red eye”); lacrimation (the flow of tears); nasal congestion; rhinorrhea (nasal discharge/”runny nose”); forehead and facial sweating; miosis (excessive constriction/tightening of the eye’s pupil); ptosis (drooping of the upper eyelid); eyelid edema (swelling/”puffiness” of the eyelid from excessive watery fluid collection); inability or near inability to remain still or lay down during an attack? Assuming that you do have CH, given what you're now taking and the "detox" that's required before busting, and the fact that you don't have O2 as an abortive, I would recommend that you look into one of the alternative treatments that can at least tide you over during a detox if you decide to bust (and that might help you quite quickly in and of themselves). Two of those that have worked well for a lot of people are the anti-inflammatory vitamin D3 regimen and licorice root/skullcap. D3: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Licorice root: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 And I'd also urge you to seriously consider trying oxygen again, since it does work for about 4 out of 5 people with CH. If you had the "right" setup before (15 lpm, non-rebreather mask) and it didn't work, maybe you'd want to try a higher-flow system. Part of my curiosity about your diagnosis is that while proper oxygen systems generally will help people with CH, it's my understanding that they are considerably less effective for migraines. I know I'm repeating here some of what Bejeeber told you, but I figure it's worth emphasizing.
  3. Hey Jon -- Welcome! Just to be clear -- You mean RC seeds? (You wrote "cc," and I just want to be sure.) Licorice root/skullcap have helped a lot of people. But if you feel you need to get off the verap to try them, you might also consider trying the anti-inflammatory vitamin D3 regimen, in which you might be able to work around the verap while you're quitting it. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Here's what it says there about verap. >>>If you are presently taking verapamil as a cluster headache preventative or for a heart condition, studies have shown that after repetitive dosing with verapamil, the serum half-life can be in a range from 4.5 to 12 hours. Other studies indicated calcium supplements interfere with calcium channel blockers like verapamil. Calcium gluconate is also used to treat reactions to oral verapamil. Accordingly, in order to minimize a possible interaction with calcium that may limit verapamil effectiveness, separate the verapamil and calcium doses by at least 8 hours. Again, discus this regimen with your PCP, neurologist, or cardiologist to work out an optimum dosing schedule.<<< We're glad you're here!!
  4. Welcome, Fester. Here's where you'd start researching seeds: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 But I think we'd definitely want to hear more about you. You have a specific diagnosis of Cluster Headache? If so, what was prescribed to you? What meds have you taken and what are you taking now? You have oxygen? Please give us some background.
  5. The Nat Geo international TV listings are here: http://www.nationalgeographic.com/siteindex/television.html It's part of the series called "Drugs, Inc." I was able to figure out when it would be on in some places (Feb 13 in the Netherlands, for example), but others stumped me. (Seems like the schedule for Norway is only available through January 31, and this episode isn't on before that. It could be that they are considering banning the program out of fear that Dan's extreme hotness might cause all eligible Norwegians to immediately apply to move to Texas.)
  6. Although there are some serious vegetarians here who nonetheless have CH, there also have been many people who have reported that what they eat affects their CH. Here's one person who experimented a lot: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1301882443 So I'd say you should try it since you have noticed that correlation. In my conversations with random people I meet about severe head pain, I have now met two who have gone to actual live-in centers where they test the elimination of certain foods to see if there's any effect on head pain (this is probably not CH pain, but you're talking about migraines in your post). One of them has become almost completely head-pain free by eliminating most meats. (One general principle of the D3 regimen is that it shifts your body's pH from acidic to alkaline. Red meat tends to be very acid-producing. Not vouching for this (although it makes sense to me and the acid/alkaline thing is a widely expressed homeopathic principle), but maybe worth considering. Here's more on the general acid/alkaline topic: http://www.naturalhealthschool.com/acid-alkaline.html
  7. Sanni, why don't you contact Les and ask him about this? It seems like you were taking rather small doses, since you were taking 5-10 drops 3x/day, and his recommendation for the initial dosage is about 30 drops 3x/day. And while he doesn't like verapamil, it might not be completely ruled out if you are careful (for example, getting potassium and water and monitoring your blood pressure). I am just guessing here, but it seems possible to me that you could use some from time to time since since it helps you so much, and Les would be the person to ask. You can contact Les by a Personal Message from here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=viewprofile;username=6960765A62606B766077050 If you don't get a response, PM me and I'll give you another way to reach Les.
  8. When the old-time baseball pitcher Dizzy Dean was hit in the head by a line drive and knocked out, the medical-report headline in the paper the next day said "X-Ray of Dean's Head Reveals Nothing."
  9. Sanni, below is some information from Les Genser about what to look for in a licorice root tincture. Since there are some concerns (which you seem to be aware of) regarding taking too much licorice root tincture for too long, or in combination with some other meds, you might want to look at this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 Note that down below there's a website in Europe from which Genser suggests ordering the correct tincture: www.organic-herbal-remedies.co.uk/ Here's what Genser says (as summarized by me) about the tincture: >>>Genser wrote: “Use ONLY a whole plant extract (tincture) of licorice root (Glycyrrhiza glabra). Good high-quality tincture is available at any health food store and many pharmacies—Whole Foods, Mom’s, etc. Get the best one you can find; it should be about $20 for 2 oz. Label should say 1:5 (that’s the potency) and 30%-40% alcohol by volume. Do NOT use teas, candy (which isn’t real licorice anyway, its anise) or anything other than a whole plant extract. This is very important.” Later in the thread, he added: “DGL licorice tinctures, that is those with the glycyrrhizin removed will NOT work. The phytoestrogens which I believe to be the effective components here are compounds called flavonoids, and are derivatives of glycyrrhizin. For similar reasons, I suspect that glycerates, tinctures in which the alcohol has been replaced with glycerin, will also NOT work. My reasoning here is that the alcohol is heated off a regular tincture to make the glycerate, and I believe the heat is damaging or inactivating in some way those same flavonoids.” He emphasized: “DO NOT use powdered prepackaged capsules, pills, or anything other than a tincture…. Powdered herbs lose their potency VERY quickly.” To order by mail in the US if a store is not nearby, he suggested Mountain Rose Herbs (“all their stuff is organic and small batch and they make a 1:4 whole root tincture. It’s also priced decently, 9 bucks a fl. oz.”); Gaia Herbs; and Terrafirma. In Europe, he suggested the website http://www.organic-herbal-remedies.co.uk/ He also provided instruction for making one’s own tincture, which can be found at the thread (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1293084254). A ClusterBusters member asked Genser about a different formulation—“It varies slightly from yours. Mine says: Herb strength ratio 1:3, alc 45-55% by volume. Dosage is 30-60 drops, 2-3 times daily. It costs about the same as yours. Whaddaya think?” Genser replied, “That should work fine. The 1:3 means it slightly more concentrated than the one I made.<<<
  10. thankfully, they seem to have covered the CH story sensibly and sympathetically, at least from the clip -- which, by the way, is now posted by nat geo at youtube, where it's been seen by close to 13,000 people in less than two days: http://www.youtube.com/watch?v=Njb4H1x8oSg i suppose they have to sensationalize the promos to get viewers. the first two episodes in this nat geo "drugs, inc." series this year, "hash" and "crack," got over 4 million viewers. so, people will learn and people will be helped. thanks again, dan, lee ann, and family.
  11. There's a schedule here: http://channel.nationalgeographic.com/channel/schedule/ngc/ Set date to 1/15, and the blue rectangle top right shows the times for different zones. I hadn't really looked at the structure of the whole show before -- seems like maybe a lot of sensationalism mixed in with the positive CH/MM story? http://video.nationalgeographic.com/video/player/national-geographic-channel/shows/drugs-inc/ngc-drug-labs-in-the-forest.html
  12. >>>  Ricardo, this is all way too complicated for me, but here's a passage from the 2010 article about BOL by Halpern and others. I might be taking it out of context . . . but I'll leave it up to you to do the heavy lifting. >>>However, prolonged administration of BOL-148 does not result in cross-tolerance to LSD (15). This, in turn, suggests that BOL-148’s mechanism of action for CH is unrelated to those receptor systems thought to be involved with hallucinogenicity: 5-HT-1A and 5-HT-2A. The ergotamines (including BOL- 148, LSD, dihyroergotamine, and methysergide) likely have positive treatment effects for CH through serotonin- receptor-mediated vasoconstriction.<<< Bottom of p2 at http://clusterheadacheinfo.wdfiles.com/local--files/file%3Abol-148/BOL-148.pdf Sewell makes what seems to me to be an interesting, possibly related, point in a 2010 discussion about BOL. >>We don't have any particular reason to suppose that LSD's effects on headache are mediated by 5-HT2A; it affects a lot of receptors.<< Again, I don't know enough to know if this is important to your thinking or not, but it seems related to what you're asking. It's here: http://www.dosenation.com/listing.php?id=7955
  13. http://video.nationalgeographic.com/video/player/national-geographic-channel/shows/drugs-inc/ngc-mushroom-medicine.html
  14. Ricardo, with the understanding that I know nothing except what I figure out, maybe wrongly, from what I read, here are some thoughts. If I'm reading it right, there's a blood test for TNF levels that's used in many studies. Would running this test on people with CH help resolve whether your thought here is accurate or not? (Not saying that you or I or any of us have the capacity to bring about that kind of testing, but as a result of Batch's anti-inflammatory regimen, a lot of people are now insisting on having their vitamin D3 levels tested. No idea what would be involved in requesting a TNF test, whether it's a common thing or a complicated thing.) http://www.dialogues-cvm.org/pdf/17/DCVM17_07.pdf Note that the study you cite shows that 5ht2a receptors exist outside the brain, and that activation of those outside-the-brain cells also very strongly inhibits production of TNF (I think this is the same study -- the title you gave for it is different): >>>The G protein-coupled serotonin 5-hydroxytryptamine (5-HT)2A receptor is primarily recognized for its role in brain neurotransmission, where it mediates a wide variety of functions, including certain aspects of cognition. However, there is significant expression of this receptor in peripheral tissues, where its importance is largely unknown. We have now discovered that activation of 5-HT2A receptors in primary aortic smooth muscle cells provides a previously unknown and extremely potent inhibition of tumor necrosis factor (TNF)-[ch945]-mediated inflammation.<<< http://jpet.aspetjournals.org/content/327/2/316.full.pdf You would think that TNF blocking drugs, like the one your friend's friend was taking (remicade) would be effective against CH, wouldn't you? I don't see any studies of that, for any of them (enbrel, humira, cimzia, simponi). In fact, there are reports of 5 people developing CH within a month of starting remicade: http://www.ehealthme.com/ds/remicade/cluster+headache Of course, the percent of people reporting CH after starting remicade is about the same as the percentage of people with CH in the general population, so it might be meaningless, but it's interesting to read the symptoms listed by people who report getting headaches from TNF blockers: http://www.medhelp.org/posts/Arthritis/TNF-Blockers-and-Headache----Humira--Enbrel--Remicade--etc/show/324130 If I can say so, the "vitamin D3" anti-inflammatory regimen is also tackling this TNF issue. D3 and fish oil, the core active elements in that protocol, are both TNF blockers: >>We found 1alpha,25-(OH)(2)D(3) could significantly suppress TNF-alpha<<: http://www.ncbi.nlm.nih.gov/pubmed/20722932 >>There was a significant inverse exponential relation between TNF alpha or IL-1 beta synthesis and mononuclear cell content of eicosapentaenoic acid (EPA), an n--3 fatty acid derived from ingested EPA (fish oil) or metabolism of ingested alpha-linolenic acid (flaxseed oil).<< http://www.ajcn.org/content/63/1/116.short I realize that your excitement is more related to the potential general healing powers of psychedelics. Just offering all this in case it leads you anywhere worthwhile. As for your actual question -- >>The only research question that this is bringing up for me, and I would love anyone's input on is, "What factors in the human body cause a rise in TNF levels?"<< -- the only answers I have for now are either useless -- it's plainly in many cases a genetic predisposition -- or essentially circular -- things that cause inflammation (by activating, or "degranulating," mast cells) raise TNF levels, and increasing TNF levels cause further increases in TNF levels. >>Activated mast cells are source of inflammation. Large amounts of TNF-[ch945] are quickly released by stimulated mast cells. All the cells involved in inflammation have receptors for TNF-[ch945] and are activated by it to synthesize more on their own. This positive feedback quickly amplifies the response.<< http://users.rcn.com/jkimball.ma.ultranet/BiologyPages/I/Inflammation.html#Tumor_Necrosis_Factor-alpha_%28TNF-a%29 >>Mast cells can be stimulated to degranulate by direct injury (e.g. physical or chemical [such as opioids, alcohols, and certain antibiotics such as polymyxins]), cross-linking of Immunoglobulin E (IgE) receptors, or by activated complement proteins.<< http://en.wikipedia.org/wiki/Mast_cell
  15. Related to what Ron just said, I've been thinking that maybe if you identified some specific research questions you wanted others to help you with -- even if it's just finding references for you to make sense out of -- probably some of us would be glad to do it. (Or I would, at least.)
  16. It's very good of you, Lt2, to respond so informatively and non-defensively to others' questions, comments, and experiences. I admire the spirit of learning with which you are undertaking this. Thanks.
  17. [Edit: I see that Lt2 has already responded while I was laboriously composing this. His simple answer is about the same as my laborious one.] I haven't wanted to stick my nose in here with any complexities, because I think the simplicity of Lt2's method deserves to be tested on its own. It works for him, and if it works for others, then you've got something important. So, I'd be inclined to stick with Lt2's advice to anthony: Do it the simple, "clean" way if you can, and see what happens. (An additional very small caution in this regard at the very end.) Building on the comments of several others here, and saying that I'm no expert at all but I've done a whole lot of reading, I'll just say these things: The articles that shocked posted suggest that it's the effect of GABA on sleep centers that treats CH. (I'm talking about GABA in the brain -- as Lt2 has said, there's at least an open question about whether GABA supplements even cross the blood/brain barrier to reach those sleep centers.) Every single thing in Ricardo's Gaba Ease is "gabaergic," affecting GABA in the brain in some way (there are a lot of ways that GABA is affected--increasing it or reducing it, for example). Valerian is particularly so, but so are hops, melatonin, and theanine. (In contrast to GABA supplements, these things do cross the blood/brain barrier.) That's why they're in there. Here are some citations about all that, to give you an idea: "Evidence that the beta-acids fraction of hops reduces central GABAergic neurotransmission": http://www.ncbi.nlm.nih.gov/pubmed/16920300 Valerian: http://ods.od.nih.gov/factsheets/valerian (down the page, under "How does valerian work," third paragraph) And many of the drugs used for CH increase GABA in the brain. This includes neurontin (gabapentin), topiramax, valproate, and depakote. Neurontin became favored because it acts most quickly (within 30 minutes) to raise brain GABA levels. Here are a couple of citations about that: “Topiramate increases brain GABA”: http://www.neurology.org/content/52/3/473.abstract "Gabapentin raises human brain GABA in 30 minutes": http://cds.ismrm.org/ismrm-2000/PDF1/0014.pdf As many know, the early tests of neurontin against CH had very impressive results: http://onlinelibrary.wiley.com/doi/10.1111/j.1468-2982.2001.00260.x/abstract The authors of that last study say: ("We hypothesize that the gabaergic action of gabapentin, perhaps combined with other mechanisms, such as calcium channel blockade, may be responsible for its remarkable effects on cluster headache.") Too bad about the %&&*(&*( side effects. So, going back to what Mystina said, it also seems to me there's plenty of reason to suppose that managing GABA in the brain might help with CH. I'd love to know why Lt2 did not choose the over-the-counter formulations of GABA that are compunded so they do cross the blood/brain barrier --picamilon and phenibut -- but I'm sure he had good reasons. And, again -- it's working for him. Because of some things that have been mentioned in posts in this thread, I present a very small, probably inconsequential, caution. In one of the follow-up letters that shocked has linked to, a neurologist points out that because about 30% of people with CH also have sleep apnea or other sleep disorders, it is not always wise to mess too strongly with their sleep centers. Of course, he's saying this in the context of the substance used in the experiment, sodium oxybate, which is a strong "hypnotic" with "potential for abuse," and so it might not apply to simply taking GABA supplements at all. But since Lt2 has mentioned sleep benefits a few times, I though this might be an addition to the database of things to be considered. Here's a link to that short letter (the second letter on that page): http://www.neurology.org/content/77/1/67.abstract/reply#neurology_el_43011
  18. I think it's January 15th at 8:00. (A lot of info spread among a lot of threads here, so I'm just reporting what I read.)
  19. From a longer post, which is down the page a bit at http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1317418320 >>>. . . . I guess everyone already appreciates this, but (as I understand it), it must not have been easy for Entheogen to keep this drug [bOL] focused on CH, since clinical trials on people with migraines would reveal the existence (or non-existence) of a much huger market, but would not demonstrate that it works for CH, hence would only mean that CH was available "off label" for CH, which I think would have implications for insurance coverage for CH use. Just guessing here, but if I am understanding this correctly, then some people have already sacrificed a lot of short-term financial gain in order to serve people with CH.<<<
  20. joe, oxygen is the most important thing you can have to abort your headaches. This shouldn't even be a discussion with your GP: just get the prescription and get started. More here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 As Ting says in her post, "busting" is using these agents to stop cycles or prevent cycles. It can help with aborting them, but stopping/preventing them, by using effective doses spaced about five days apart, is generally preferable. It is strongly believed here that triptans will block the effectiveness of busting, so (for purposes of busting) that's where the oxygen comes in, enabling you to get along between doses without resorting to meds that block busting. HBWR is a pain to work with. If you want to bust, you can buy RC seeds relatively inexpensively. You might want to look over the files that tommyd has created to maybe get a better sense of all this. They're in the "Clusterbuster files" section of this board. Here's a general one: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 Here's one on seeds: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 Here's one on things that block busting: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731 In my opinion, if the Frovatriptan is in tablet form, it probably won't help you unless your headaches are very predictable and you can take it in advance. If it's injectable it might help more . . . but it sounds like maybe you've experienced some of the side effects of triptans. Others will have wiser things to say about this than I do. Strongly recommend that you get the oxygen ASAP. I know virtually everyone else here agrees about that. If you don't want to bust (or even if you do) and you haven't tried it yet, the anti-inflammatory "vitamin D3" regimen has helped quite a few people, and even though you've already tried a lot of OTC remedies, it could be worth a shot for you. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804
  21. hey joe, welcome, and thanks for posting and standing by. looking forward to your input. as you probably know, paper is generally considered the best busting agent. but if you conclude you're using too little to really make a long-term difference out of reluctance to "trip," you might consider seeds, from which you can get a stronger dose (than a very low dose of lsd) without psychedelic effects. are you taking no pharmaceutical meds right now? you have oxygen?
  22. i think i answered this at another thread, anthony, but brown is the color they commonly are when purchased. i've bought a lot of seeds from a lot of different places, and they always have been brown (and they have worked). sometimes a few are kind of very dark brown or black, and we usually toss those away, but i don't even know if that's necessary. at that other thread, ricardo said he didn't think you could get green seeds, because those would be fresh seeds. i know agent orange was one person who talked about using green seeds, and i never trifle with AO's knowledge, but i was puzzled when he wrote that since as i say ours have always been brown and, as i say, they have worked. shaman's garden is not an unusual place for people to buy from. people here have reported getting good seeds and seeds that did not seem to work from virtually every place that sells them. there's no reason the ones you have should not be good, as long as you've stored them in a reasonably cool, reasonably dark place since you bought them.
  23. No, there are no current trials of BOL-148 (which I think is what you're asking about). It's hoped that next year there might be some. To be informed when trials of BOL are underway, you should register here: http://www.entheogencorp.com/community/ Sorry there isn't better news about this. I can only say that at the Clusterbusters conference this year, Dr. Halpern was optimistic about trials next year. Do you care to say anything more about seeds, just in case you were somehow missing something when you tried them? Also, you might consider the anti-inflammatory approach (the "vitamin D3" regimen, as it's sometimes called), which has helped a lot of people. You can read about it here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 And some folks here say they've had very good results from the licorice root method: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068
  24. I assume that Michele Bachmann, who famously suffers from migraines, will be targeted. (In my experience, she can cause them, too, but maybe that's just me.)
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