CHfather

Does he do something about them? Oxygen, energy drinks, imitrex, preventives of one kind or another???? The actual question you are asking, I can't answer. I haven't ever heard of those things happening. But if he's not doing anything about them, that's a big mistake.

I hope this is true. But unless you have some qualifications (e.g., you are a medical laboratory) that others don't have, I'd be very, very surprised if it is.

Two cents from me. The most useful description I have found is telling people that a doctor at Harvard Medical School (Halpern, of course) has compared CH pain to the pain of having a limb amputated without anesthetic. But not once: day after day, or many times a day.  I think that taking it out of the realm of "headache," which people immediately think they understand, and into something they can imagine happening to them, or even have seen in a movie or tv show, causes a different response. I have also thought that inventing a different name to tell people, one without "headache" in it that sounds serious, would change the hearer's mindset. I think you could just make one up--"opticephalagia," for example, "cephalagia" meaning "headache."  But I would also want people to know that it's "also known as" cluster headache.

So sorry to read about your son. I'm also the parent of a person with CH. At the bottom of this message, I've pasted a list of doctors in Virginia who have been recommended by people with CH. As you'll see, there's one in Virginia Beach. The most important thing for your son is oxygen, which any knowledgeable doctor will prescribe (but many, not being knowledgeable, do not). A flow rate of least 15 liters per minute and non-rebreather mask. To read more: http://clusterbusters.com/wp-content/uploads/2012/11/OXYGEN-12-2012.pdf Some things a doctor probably won't tell you about: - If he's having attacks right now and doesn't have oxygen, try an "energy drink" (RedBull, Monster, etc.) at the first sign of an attack. That helps a lot of people. (Coffee helps, too. The "energy drinks" contain caffeine and also taurine, which many people think also helps.) - There's a vitamin-D based regimen that has helped a lot of people. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 - Others have found good relief from a licorice root treatment: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 - Most people here have turned away from the "standard" prescriptions that you'll get from even a knowledgeable doctor -- verapamil, prednisone, imitrex, etc. These things can work, and it's understood that relief is your #1 goal right now. If you haven't been there yet, you should check out clusterheadaches.com, where these conventional treatments are discussed by many people. (Go to the "menu" tab on the left and you'll see a link to the ch.com message board.) We are also happy to help you here with any questions about anything. The methods that are discussed most here -- referred to as "busting" -- involve taking psychedelic substances which, many feel, treat CH better than conventional medications with fewer side effects. In many cases, they can be taken at levels low enough to have no psychedelic effect at all, but still have strong effects against CH. You son seems too young for this, so I am just alerting you. Here are those doctors. Bless you for stepping up for him. Now that he has a diagnosis, the challenge of CH will be a lot more manageable. And there are much better treatments on the horizon, from medications to devices. It could be that reasonably soon CH will be a manageable condition. We all pray in our own ways that that day will come soon. Alexandria: Dr. Stuart Robert Stark Neurology & Headache Treatment Center Charlottesville: Priscilla F. Potter, MD University of Virginia Health System Blacksburg: Dr. Steven D. Nack Neurology Services of Southwest VA Richmond: Dr. Michael Mareska Kara Clark, NP Neurological Associates Inc Virginia Beach: Dr. Allen R. Fenderson Holland Road Family Medicine Woodbridge: Dr. Naurang S Gill Prince William Neurology Inc

Still there, still open, new name (as of a few years ago): Willis Tower.

This? Not much different from RC, except the preparation is different and you use fewer "seeds" (although in the case of HBWR, the seeds are inside). http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 The suggestion to start with two seeds might be a little low. Have you already tried RC? Most people prefer it because it's easier to work with.

Maybe she should use part of that day to check first with Jeff, since he lives (according to his signature info) in Naples, about 35 miles due south from Ft. Myers.

often there's msg in store-brand smoked bacon.

Read this, if you haven't. Do the whole regimen. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Read the threads linked there, long as they are. At least skim them. There's a lot to learn. 10,000 IU is generally safe; many people are starting with more than that if their baseline D3 is low.

Vickle, any reason why you wouldn't order RC seeds right now?

Well, just to be clear, we're not talking about licorice licorice, but about licorice root. Whole different thing. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068

About 10-15% of people with CH, including many people at this site, use welding O2. To use it, you also have to buy a regulator and a mask. http://clusterbusters.com/wp-content/uploads/2012/11/OXYGEN-12-2012.pdf

sake . . . alcohol's a trigger for almost everyone. i'd say the imitrex nasal is not the most reliable test. it doesn't act fast enough to treat most CH attacks. wish i had more to offer.

didgens, I see that quite a few people have read your messages but no one has responded. I suspect that's because they, like me, don't know what to say. Many of your son's symptoms sound exactly like CH, but the way they are put together (for example, coming a week to two weeks apart) doesn't sound much like CH. They are called "cluster" headaches because they cluster within certain time periods. Since we're not doctors, we can't really diagnose him, which seems to be what your question is about. As for triggers, this is a big reach, but there is a tree, the California laurel, that causes headache and migraine. It could be possible (though very unlikely) that your son is being exposed to scents from that tree, or some other naturally-growing thing, that induce cluster symptoms. http://www.sciencedebate.com/science-blog/how-headache-tree-causes-cluster-headache-and-migraine I think I also suggested to you in a previous thread that MSG (monosodium glutamate) might be a trigger for him, since as I recall he got some attacks after eating what you referred to as "Asian food," and Chinese food often has a lot of MSG in it. Since that thread, some other people here have said that MSG can trigger severe headaches or CH attacks for them. I suppose one form of "diagnosis" is whether CH methods help abort or stave off his attacks. Has he ever been able to try oxygen during an attack? Imitrex? Or verapamil or prednisone as preventives? Has he tried busting as an abortive, just to see whether it has any effect? (You might have answered these questions before -- I just don't remember.) Those are my best thoughts.

Yes, TO, you should. But the question is whether 15 seeds counts as a "dose." That's why I suggested that brs should see whether there are any indications that the 15 seeds had any effect -- if not, I think it would be okay to dose again. I think someone might suggest that 15 seeds won't fully "shut the door," and it might be a good idea to wait two or three days and then dose with 30 or more.

15 is indeed a small dose, from which you definitely would not expect any euphoric effects. But, it might be working -- we have had people who have busted successfully with that amount. Here's my two cents. If you don't notice anything at all different in the next day -- no lessening of your attacks on the one hand and no slapbacks on the other hand (attacks that come at odd times or are more severe than typically), then go ahead and bust again tomorrow with 30 or more. Wiser others may not agree . . . so it's just my two cents, as I say.

  CHS, it is very generous of you to come here and share your experiences. We all can learn a lot from you, I'm sure. And it was also generous of you to be a "guinea pig" on one front of this battle, to mix some metaphors.   I'm sure you realized that the statement of yours that I quoted would ruffle some feathers. I am only interested in clarifying your position, not arguing with you. You are right -- it is, like all of life, personal choice. So I just wonder . . . When these "drugs" were legal, or even when they were sacred, would you still have been against them? That is, is it just the illegality that you are "dead against"? And considering all that you have endured with a legal surgery, compared to the very minimal effects that many people here experienced with their illegal yet effective treatments, have you ever thought it might have been wise to try this course before trying the surgery? I have to admit, I picture some guys sitting around saying, "Well, on the one hand we have this medication that works for a lot of people, and it has no lasting side effects and often not even any temporary side effects. And on the other hand we have this surgery, where we cut into someone's brain, that occasionally works and has lots and lots of side effects. And, hey, the second one is really expensive and only available to those we say can have it, and the first one is very inexpensive and available to practically anyone. So let's make the first one illegal and the second one legal!"  Sorry, I guess I ranted. I think partly that's because I feel frustrated that you deprived yourself of an option that might have helped and been a lot less hard on you. I really am sorry for all you've been through, appreciative of your decision, and hopeful that all you need is some tweaking of the device to have good results. Thanks for your sharing. I need to go look at your blog now. I apologize if you have already answered my questions there. JerryÂ

As BostonHeadacheDoc says (or suggests) in his post, you really want injectable imitrex. You're just guessing with the pills if you try to time them before an attack, and they're pretty ineffective once an attack has begun. Can you not have O2 at work? What about in your car? No -- you can't go off the antidepressants cold turkey, or at least most people can't and you probably shouldn't (in my opinion). Gotta do a taper, I think. But Jeebs is saying maybe they're not blockers, and he's also right that it could be "post-dose hits" that you've been experiencing with the psilo, and that would be a positive sign. (Post-dose hits, or slapbacks, are very common when busting -- attacks that are more severe than your typical ones, or occur at odd times. Usually they only occur with the first couple, or maybe three, doses. They're considered a good sign that things are being shaken up. I can't tell enough from your description to know whether they sound like slapbacks, or not.) It sounds like your attacks generally do not occur at regular times -- Is that correct? Can I tell you two things that are good news? First, you got a fast diagnosis. I was reading the other day that the average time between a first doctor visit for CH and an actual CH diagnosis is seven years! I know more than a few people who went for many years being misdiagnosed and mistreated. And second, you got oxygen, which, as you say, is a life-saver. Not only do the misdiagnosed people not get oxygen, but very often even people who are diagnosed correctly have doctors who don't or won't prescribe oxygen. In a recent study, almost half of CH patients were not getting oxygen prescribed to them. I'm not saying you should count your blessings, because there's no blessing in having CH (some silver linings, maybe), but you've had some good fortune in your diagnosis and treatment, and you're in the right place for things to get a whole lot better for you.

bob, thanks for coming here, although we are all sorry you had to. You did a great job providing information. Others will have smarter things to say than I do. First, I just wanted to say about your fear and sadness that there probably isn't anyone here who hasn't been where you are or had a loved one who has been where you are -- so keep talking, about anything you want. There's lots of "venting" here -- everyone understands. I'm afraid that the Prozac, as an SSRI, could be a blocker of your busting. The amitryptilyne (typically Elavil), which also affects serotonin levels, might also be a blocker. I don't know enough to advise you about this, but I bet someone here does. (Elavil once was extensively prescribed for CH -- I don't know if it still is -- and it had a weird track record of helping some people a lot and others not at all. Sounds like you're in the latter category with regard to CH, but maybe it's helping some with your mood.) You can't just jump off the Prozac, because of SSRI withdrawal symptoms. I'm hoping someone can help you think about that issue, and about the effects of big doses of LSA or psilo on top of those meds. Although verapamil can block busting, there are several people here who have had some success with busting while taking it at fairly low levels. Since you apparently took only one good-sized dose of seeds, and you were also taking other things that could be blockers, there isn't really any basis for thinking that seeds wouldn't help you (they do help most people) under the right circumstances. Have you ever used imitrex? That's a kind of heretical question here, but I'm wondering whether maybe the best thing for you to do is to get through this cycle with the most effective pharmaceutical meds you can get and then sort out the rest. The D3 can also take a while to start working, and as Tony says, it's important to be doing that right. In case, you haven't seen it, here's the file about that: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804. If you have any questions about the D3, you'll probably get a quick answer if you post them over at the CH.com board, using the links in the file I've just directed you to. I'm sorry I can't give you better answers, but I wanted to respond to you quickly and maybe contribute something to the conversation.  Â

This is thrilling news, heilette. I so much admire the determination you have shown, and I hope you are now getting the benefit.

Mouthpiece much preferred by my daughter, too. Sure seems like a crazy policy from the insurance company, but I guess that's what they're best at (crazy policies). O2ptimask is what he wants anyway, if he wants a mask, and he'll have to get that on his own.

jb, did you also see this discussion by Les? http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1322547210

I don't think many people have had luck with the ginkgo. There's a search bar in the upper left part of the page where you can find previous posts about things. From a quick glance, it appears that for some people ginkgo triggers CH attacks. There are some suggestions in that oxygen paper I linked you to about how to get better results from O2. Two short-term things you might try are (1) drinking an energy drink (RedBull, Monster, 5-Hour, etc), or at least a strong cup of coffee, just before you start on the O2; and (2) replacing the current reservoir bag on your mask with an unscented turkey bag or garbage bag -- creates less interruption to the flow of O2, so you might be able to breathe more deeply, or at least with less interruptions. Many people, of course, have multiple O2 tanks in different sizes -- bigger ones for home, more portable ones for car/work. I'd say you might order 150 or 200 seeds, since they're not so expensive and you'd rather have enough than run out.

Having searched around the site, b'82, you probably have noticed that for most people RC (rivea corymbosa) seeds work very well (in most cases as well as or better than shrooms, in some other cases less so). They are legal (in the US and most other countries) to purchase and possess; preparing and drinking them is unlawful. If you order seeds today you'll have them in time to use as soon as you have "detoxed" from the trex and pred, assuming that you don't take another trex shot (you should detox from trex for about 5 days). Dan is correct that you should also "detox" from the verap, although many people have had success detoxing fewer than 5 days from the verap. You can order seeds from many places. www.tranceplants.net and www.iamshaman.com are two of them. Read this file http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974, and you should also read other files from the ClusterBuster Files section of the board, including "Playing Well Together" and the "Warnings." If you decide to start with seeds, let us know. Moxiegirl's new file is a very sound guide to preparing seeds for consumption: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1357378289/2#2 Now the big thing is the detox period. You don't mention oxygen -- do you have it? It's tough to detox without this abortive. Here's a file about oxygen: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1356823258 There are other things you can do to get relief without using the meds that block busting: energy drinks, for example, and maybe the "Vitamin D3" approach that has helped many people. Ask, and you shall receive (more information).

Nice summary, TO! Mortar and pestle also good for grinding. I think we'd recommend roughly 35 float-tested seeds for a first dose. Some chase them with juice (cranberry, orange) to diminish the taste, some add some lemon or other juice to the soaking liquid. Freezing unused seeds might help extend their life. Cool, dark place, well sealed, is apparently just as good. Shouldn't be kept more than 6 months max seems to be the rule, although some people have had success with ones kept longer. I'm with you -- fresher the better.