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CHfather

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Everything posted by CHfather

  1. CHS, several are shown here: https://www.google.com/search?hl=en&site=imghp&tbm=isch&source=hp&biw=1077&bih=588&q=%22cluster+headache%22+tattoo&oq=%22cluster+headache%22+tattoo&gs_l=img.12...4017.13926.0.15789.33.26.4.3.0.0.127.1874.24j2.26.0...0.0...1ac.1.14.img.zeL5I6GOc4Y
  2. How a doctor can identify cluster headaches and then do so little research as to prescribe oxycodone . . . gosh, it's depressing. Have you read enough yet to know what you want/need to be doing? Such as . . . I hope the fact that your name is legion shouldn't scare us (Biblical joke :D)
  3. A few years ago, Progresso removed the MSG from its soups. I'd still check the labels, but you're probably okay. (The MSG in Progresso chicken soups nearly killed me in 1990. Long story.) Whole Foods doesn't seem to accept anything with MSG, so that's a pretty safe place to shop.
  4. A new poster, Entheogenesis, has mentioned that it's critical for him/her to avoid MSG (monododium glutamate) while in cycle. Several other folks have mentioned this over the years. So I'm thinking maybe it's time to issue this general warning. Might be bad for your CH or might not be, but worth paying attention to. (It's generally bad for you -- and your kids -- anyway, so worth avoiding in my opinion.) MSG is in a whole lot of foods that many people eat regularly -- many soups and broths; flavored chips; a lot of bacon products; many sausages and pepperoni; some fast foods (e.g., some at Taco Bell and KFC) -- as well as in a lot of restaurant foods -- particularly Chinese, but not exclusively. Often a food's label will say "monosodium glutamate," but some other words on food labels also indicate that MSG might be present. They include hydrolyzed yeast, hydrolyzed vegetable proteins, autolyzed yeast, and protein isolate. I've looked around for a good, straightforward list of foods that contain MSG, but couldn't really find one. This is a pretty good start. http://www.3fatchicks.com/4-foods-commonly-containing-msg/ Jerry
  5. Happy birthday, Matty. I hope things are really good with you.
  6. Jubal, I just saw this (below) while I was looking up some stuff on melatonin. Maybe some good nightly doses of melatonin would be a good idea for you. >>>Increased body heat might precipitate cluster-headache attacks by alteration of melatonin concentrations, leading to hypothalamic dysregulation and chronobiological dysfunction. These findings also support a therapeutic option of melatonin in the prophylaxis of cluster headache.<<< http://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2805%2972062-6/fulltext
  7. This the procedure that Dan, heilette, and others were discussing here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1366151756
  8. the usual thoughtful and caring advice from folks here, chrisw. i sure hope it helps. pulling for you. BeastBuster, can you say more about that vibrator? What it's like (I can't tell whether "silver bullet" is a description of the thing itself, or of your feeling that it's a "silver bullet" for reducing CH pain). If it's some special kind, maybe where I could get one? If you're just talking about a vibrator vibrator (any kind will do), I can probably figure out how to get one of those.
  9.  You can do what many, many people do: Buy rivea corymbosa seeds, which are completely legal to buy and possess, and very, very easy to convert into the busting agent LSA (which is illegal to drink). If you're like 95-plus percent of people, you won't even get high from it -- but it will work. You can read more about that here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974. Most people here find that tablets like Relpax (it is a tablet, isn't it?) are considerably less effective than an injectable version of the same kind of drug (a triptan), like Imitrex.  You'd have to stop taking that for at least five days if you are going to bust. (You should stop the verapamil, too, but some people have some success with busting while on low doses of verap.)   For what it's worth, the average time between first seeing a doctor and getting a CH diagnosis is seven years.  You'll have to come to the ClusterBusters conference (Chicago, September 12-15) and audition for the world-famous FusterCluckers musical group! Some mad skills there. Â
  10. Jubal, Don't just ask -- insist. And do it ASAP. And . . . If this is the same doctor who loaded you up on all those other meds, s/he might have some resistance to oxygen, even though it is the #1 recommended abortive (in one study, 12% of doctors just refused to prescribe oxygen, for their own stupid reasons). You'll see a lot of info about oxygen, and some suggestions for discussing it with your doctor, in the oxygen page behind the MENU tab on the left side of this page. Do your very best not to be deterred -- oxygen is critical. If this doctor won't give it to you, maybe we can help you find one who will. I'm just gonna paste in here another post I made today on a different thread, about some other things to consider. The first relates to the effectiveness of energy drinks or energy shots as an abortive -- very effective for many people. RedBull is good, as Oscar says. Generally, most people here think that it's the combination of caffeine and taurine that makes "energy drinks" effective, but some people here find that a strong cup of coffee works for them. Others use "energy shots" (5-Hour Energy, 6-Hour Power, etc.) because there's so much less to drink but they have the same amount of caffeine and taurine as a RedBull (or more). Some other energy drinks, such as certain brands of Monster or Rockstar, contain more caffeine and taurine. See what works for you, and then modify. I would say that energy drinks/shots work well for most people. As you'll learn if you're here awhile, things vary greatly from person to person.  Here's some info about caffeine in energy drinks: http://www.energyfiend.com/the-caffeine-database Here are a few other things that work for many people: Melatonin at night (start with recommended dosage and work up to see if it helps you). "Vitamin D3 regimen": 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 BUSTING: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865
  11. There's a lot to be said for both of these, but O2 is essential. GET IT, please. It's ridiculous, even tragic, that you've been dealing with CH without it for so long. To read more, go to the MENU tab on the left side of this page. It sounds like you're not taking any meds, or least not any abortive meds like imitrex. A great opportunity for you to seriously consider busting. Start here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865
  12. CHfather

    New

    Roz, be sure that your neuro prescribes oxygen for you. High flow (at least 15 litres per minute), non-rebreather mask. This is the standard medical practice everywhere in the world for aborting cluster headaches -- but only about half of all doctors know (or care) enough to prescribe it. You can read more about oxygen by opening the MENU on the left side of this page. I would go to that appointment prepared, either by bringing this article with me or even emailing/faxing/mailing it in advance to the neuro or someone at his/her office: http://jama.jamanetwork.com/article.aspx?articleid=185035. Getting oxygen is very important (a life-saver, many here would tell you), so do your best to have the doctor prescribe it. Also . . . just a thought . . . while you're not taking any meds is a great time to try the "busting" method that most people here use. You can read basics about it now here -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 -- and then ask questions, if you are interested. (I recall that one busting agent that's easy to obtain in most countries, rivea corymbosa seeds, is illegal in Australia.) Also, you might want to consider two other non-pharmaceutical protocols that have helped a lot of people, the "vitamin D3" regimen (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804) or licorice root (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068). Two other tips. Many people find that drinking an "energy drink" or "energy shot" at the first sign of a CH attack can abort, or reduce the severity of, an attack. RedBull, Monster, Five-Hour Energy, Six-Hour Power, etc.  And many find that taking melatonin at night has good effects. Start at the recommended dosage, or a little higher, and go up from there.
  13. b'g, your RC might still be good, or it might not. six months is the rule of thumb for some confidence that it's still good, but i've been told by vendors that they can last a year in a dark place (dark more important that cool/cold).  in any event, i'd seriously consider buying a fresh batch if i were you, since two on-the-small-side psilo busts might not do the trick for you. brew's suggestion makes sense to me, but alternatively, if RC works for you, you might try giving it the good initial psilo whack that some here recommend (in this case, taking all 2.8 grams at once) and then switching to RC for your second and subsequent doses.
  14. Mrsg, it was great to hear about your long PF period, and I'm sorry to see you back now. I tried to read up on seroquel and remeron, but it was too complicated for me. It does seem, from my limited knowledge, that remeron for sure is likely to be a blocker. Temazapam, a benzodiazepine, probably won't block busting, from what I've read. BUT it would be very unwise for you to just stop taking any of these meds. You almost certainly need to taper off them gradually, under a doctor's supervision. I realize that's a problem, and I suppose you could find tapering info on the internet and try to do it yourself, but that seems quite risky to me. Please be careful about this. It's a tough, tough situation, but you definitely need to be careful. Do you have oxygen? Have you considered trying the D3 regimen? What about energy drinks (I'd even worry a little about these with all that's going on in your system, but I'm thinking that maybe the "milder" ones like Five-Hour Energy that are essentially a cup of coffee with other stuff added) might be okay. OXYGEN is the number 1 priority. Have you already done all the standard meds, like imitrex injections? Because I think your taper off the others could take a while, and maybe you need to go to the standard meds for a while. For that matter, maybe if some standard meds plus oxygen (maybe plus D3 and energy drinks) will work for you, you'll decide not to get off those other meds, if they're helping you with other issues.
  15. Brad, I join with Jeebs (and others, I'm sure) in really regretting your current status. I've always respected your choice not to bust . . . but it seems that enough is definitely enough! Maybe you might try licorice root, too? http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1322547210/ Are you using energy drinks and/or melatonin??
  16. Hi Darby, and welcome. I can't really add much to what's already been said. Try the energy drinks (drink one as soon as you feel a CH attack coming on) and the melatonin. Be sure to follow up on getting oxygen (which, like busting, can also help migraines, at least sometimes). You can read more about oxygen by clicking on the MENU tab on the left side of the page. There is a very good Facebook page based in Scandanavia (Finland) about CH. https://www.facebook.com/groups/ch.naturals/?fref=ts Here is the basic information about the methods of busting: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 In the section where that file is located, you can read a great deal more. It's in the "ClusterBuster Files" section. You might want to also consider the "vitamin D3" method that has helped a very large number of people: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Or licorice root, which also seems to work very well for some people: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1322547210
  17. Just thoughts . . . . I have always thought that seasonal CH cycles of CH were understood to be related to the hypothalamus's role in adjusting the brain and body's daily functions for seasonal changes (circadian rhythms), and that they were likely triggered more by changes in amounts of daylight than by actual weather changes. There's an abstract of a medical journal article about this that says >>>While cluster headache has traditionally been thought of as a vascular headache disorder, its periodicity suggests involvement of the suprachiasmatic nucleus of the hypothalamus, the biological clock. Normal circadian function and seasonal changes occurring in the suprachiasmatic nucleus and pineal gland are correlated to the clinical features and abnormalities of circadian rhythm seen in cluster headache. <<< (http://www.ncbi.nlm.nih.gov/pubmed/11858532) A couple more things: >>>A series of findings over the past decade has begun to identify the brain circuitry and neurotransmitters that regulate our daily cycles of sleep and wakefulness. The latter depends on a network of cell groups that activate the thalamus and the cerebral cortex. A key switch in the hypothalamus shuts off this arousal system during sleep. Other hypothalamic neurons stabilize the switch, and their absence results in inappropriate switching of behavioural states, such as occurs in narcolepsy<<< (http://meds371s.uchc.edu/Saper%20etal%202005%20hypothalamus%20circadian%20rhythms.pdf) (Seems like this would be connected to the fact that CH occurs so often in sleep.) In seasonal affective disorder, >>>bright light works by stimulating cells in the retina that connect to the hypothalamus, a part of the brain that helps control circadian rhythms. Activating the hypothalamus at a certain time every day can restore a normal circadian rhythm and thus banish seasonal symptoms.<<< (http://www.health.harvard.edu/blog/seasonal-affective-disorder-bring-on-the-light-201212215663) (I remember at least one person, tingeling, saying that using one of those light machines that are supposed to relieve seasonal affective disorder was helpful for her CH.)
  18. Donnie, here's an alternative theory. It is strongly believed here that people should wait about five days between busts, because of a phenomenon called "shutting the door," in which a bust blocks the receptors for about five days so that a dose taken less than five days after a previous dose will have no, or very little, effect. Here's a file about that: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130968 Some people find they can be successful with four days between busts, but your three days (Tuesday-Friday) is probably too little. Can't say that for sure, of course. Wish we could say more for sure. But it's the accumulated experience/wisdom of a lot of folks. So . . . it could be that your Friday dose is actually doing nothing for you because the receptors are still blocked from the Tuesday dose, and your Monday hits are the Tuesday dose wearing off, not the Friday dose wearing off. I think most folks here would recommend trying to get five days between busts, or at least four. Usually, the advice is that if you get extended pain-free time, try to keep stretching out the time between doses. I doubt, personally, that it would just be a matter of taking more on Friday (though I guess you could try that and let us know what happens). In general this isn't like let's say pain meds, where the more you take the more relief you're likely to get. Since the amounts you are taking are generally working, I don't think taking more will work better. Been wrong before; could be again.
  19. jb, i can't say where others are getting them from now, but i know some have gone to http://www.ktbotanicals.com/viable-seeds-c-2.html?page=3&sort=20a and some to http://psychoactiveherbs.com/catalog/index.php?cPath=128&osCsid=32cc08cfa44c2d318bf2b9baa8318933. someone also mentioned recently that they got seeds from tranceplants in about a week, which is better than they were doing before.
  20. Sorry to keep bringing this up, Trace, but did she prescribe oxygen???? If not, heed all the voices here and call her back and ask for it. Sure, the MRI is worth doing. When you say "she put me on verapamil," does that mean you're going to start taking it? Although there is debate about this, it is generally believed to limit the effectiveness of busting though probably not to completely block it. What's the dosage? Also, you might want to take her up on those injections (imitrex, I'm sure). Although they're $2 a pop, you can easily get two or three uses out of each one, and people here have found that they work way past the supposed expiration date. Might be nice to have for a possible future emergency. I can pretty much guarantee you she's not going to look into psilo for treating CH.
  21. some people have used taurine powder or capsules. i guess you could stir the powder into a cup of coffee(???) you're not the first person here to soak first, then pound. since pound first/then soak is supposed to extract practically all of the LSA, it's hard for me to imagine that soak-pound would be stronger. just guessing. very happy about your mask working so well.
  22. Donnie, It's nice to hear you had those five good days! And your new mask should help, too. (Standard procedure is pound first, to a rough powder, then soak for an hour or two.)
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