CHfather

Here's a list of doctors in Louisiana that have been recommended by people with CH: Baton Rouge: Dr. Steven Zuckerman Covington: Dr. Srinivas Ganji Lafayette: Dr.Steven J. Snatic Metairie: Dr. Daniel J. Trahant New Iberia: Dr. Timothy F. Himel If one or two are near you, you might call the office and say you have cluster headaches and want to be treated by someone who understands them.

LEGION, maybe you'd want to share this with your idiot doctor. (Posted just a while ago by MoxieGirl.) http://health.nytimes.com/health/guides/disease/cluster-headaches/print.html

Thanks, MG!

Legion, what's your oxygen system like? Are you using a "standard" 15 lpm with a "standard" non-rebreather mask? If so, you'll get much better results with the O2ptimask (http://www.clusterheadaches.com/khxc/) and a higher-flow regulator that permits you to hyperventilate. In the short run, you could try (a) replacing the reservoir bag on your mask with an unscented turkey bag or large garbage bag; and ( tilting your head down (like you're looking toward your feet) while you're on the O2. Some people, including a prominent CH doctor, say that helps. I'm a pretty gentle soul. I had heard people saying they wanted to kill someone and I had always assumed that was a figure of speech. Until I had to deal with my daughter's neurologist. Arrogant, uncaring, stupid monster, that neurologist was. There's something seriously wrong with your doctor, LEGION, prescribing esgic-plus, which might only help because of the caffeine. Has he never heard of the internet? Doesn't he have some kind of prescribing book that would tell him what to prescribe? To me, he's just another monster. We can hope that busting will work for you and you won't need the standard meds, but as Jeebs says, it looks like you would want to get to a headache center ASAP to get those meds, if only for future emergency use.

Start at 9 mg, and add 3 mg up to as much as 18 or 21 mg. I hope it helps.

If you think the verap alone could work, you might know that there are more than a few people here who have busted with success while on verapamil. Not complete success in most cases, but enough to make a difference. So maybe you could start the verap, then bust, and see what happens. I haven't heard the same about success with busting while taking prednisone. Or, as Jeebs says, go with just the verap/pred and ride out this cycle that way. You don't say anything in your first post about preventive busting between cycles; maybe you'll want to start that.

well said, 'mom. it's bad enough to be in the clutches of the unkowing, the incompetent, and the uncaring, as too many people also are.

here's one more: http://www.ratemyink.com/?action=ssp&pid=49691 accompanying text: >>I get cluster headaches and the pain is commonly referred to as the beast. The demon reaching into the skull really represents the pain. I gave my artist an idea and this is the finished product. Johnathan at Body Chemistry in Bluefield WV is my artist. 304-325-2639 <<

unless i'm mistaken, there are four in the first row. if you click on the right-hand one (the new ink), it'll take you to a page where there's at least one more (boxes on top right, second row, second from left).

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

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)

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.

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

Nice!

Happy birthday, Matty. I hope things are really good with you.

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

This the procedure that Dan, heilette, and others were discussing here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1366151756

Thanks, BB!

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.

 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

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

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

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.

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.

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.