CHfather

"what are aspirin, caffeine, and acetaminophen?"Â Â http://en.wikipedia.org/wiki/Goody%27s_Powder [/img] "who is richard petty?"Â (dale jr, too, as of this year) unfortunately, no googling was permitted on jeopardy.

Good info, weezey, thanks. What are "goody powders"?

JB, here's a file that explains the theory behind the five-day wait: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130968

 This kind of cruelty just makes me nuts. As spiny says, you want a non-rebreather mask. The cannula is useless. DEMAND this! If you are challenged about it, refer them to the JAMA article: http://jama.jamanetwork.com/article.aspx?articleid=185035 (And if you have the energy, tell them you're not paying for the oxygen they made you waste.) When you get the mask, please read page 8 in this: http://clusterbusters.com/wp-content/uploads/2012/11/OXYGEN-12-2012.pdf It has advice for using the mask.

Here's some info from Dr. Sewell's study of kudzu in terms of dosage (http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4610.2008.01268.x/pdf): >>>Efficacy for cluster attack in this group showed a clear dose–response relationship: 3 of the 4 treatment nonresponders were taking less than 1000 mg a day (total pill weight; actual dose of kudzu is substantially less), and only 3 of 7 (43%) patients taking kudzu less than 3 times a day showed benefit. Of the 6 who reported no effects or worse effects from kudzu, all were taking it less than 3 times a day, whereas 8 of 10 (80%) taking the more frequent dose benefitted (Fig. 1). Side effects were mild and infrequent, the most common being gastrointestinal effects experi- enced by 4 (25%). <<< There are very extensive discussions of kudzu at ch.com, which you can find by typing kudzu into the search bar at the top left of the page. As I remember, there was some concern back then that kudzu might block the effectiveness of triptans if you took the kudzu too close in time to the triptan. I don't know if that was verified or not. Have you tried melatonin?

Do you mean that you don't have an O2ptimask, or you don't even have a non-rebreather mask? Can you remove the mask and suck air directly from the plastic that connects the tubing to the mask?  An "E' tank, which must be what you have, will give you about 35 minutes of O2 at 15 lpm. (An E tank is a little over 2 feet high and 4-5 inches in diameter (14" in circumference).) So like you have said, that's about 3 sessions, or less. If your mask is inefficient, of course you're going to get less out of it. Have you tried drinking an energy drink before you start on the O2 -- that can speed up the process. I don't know why your insurance wouldn't cover the standard prescription for CH (O2), or why your O2 supplier would give you two E tanks instead of an M tank (an M tank holds five times as much O2 as an E tank). Can you request/demand an "M" tank? That's the standard size for CH.  At the least, can you have them come replace the empty E tank with a full one? Since the O2 works for you, you might want to try to set up a system using welding oxygen in the long run if you can't get insurance coverage, but for now, I'd really try to get that bigger tank.Â

Consider printing out that article about O2 (the Journal of the American Medical Association one) and bringing it with you, and/or emailing/faxing it to your doc's assistant in advance. Like you say, most docs don't know much about CH. Some are willing to be educated. Many people here have found that a nurse or physician's assistant is a good ally to have. If your doctor won't give you O2, you can create your own system using welding oxygen. Keep us posted!

I know that Bejeeber is out there somewhere, but here's that method for extending imitrex: http://www.clusterheadaches.com/imitrex.html

If your doctor won't believe that you have CH when you now know that you do, get another doctor fast. First thing you want is OXYGEN. http://clusterbusters.com/wp-content/uploads/2012/11/OXYGEN-12-2012.pdf Or maybe the first thing you want, right now, is the way to use less trex with each injection. I promise you that Bejeeber will be along soon to point you to the way to do that. If he's not (but I'm sure he will be), I'll try to find it. Have you tried drinking an "energy drink" (RedBull, Monster, etc.) at the first sign of an attack? Helps a lot of people. I would say that in terms of prescription meds, maybe not much is very new. Prednisone, verapamil . . . Lithium is used less, but still prescribed. There are a lot of non-prescription strategies that have worked well, "busting" being one of them. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865   Also the vitamin D3 regimen -- http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 -- and licorice root: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 More, too, but that's a start.

AW, here's what Ricardo (one of the top experts here) said in another thread about morning glory seeds: >>I would start on the low end (100) and see what it does before boosting it up . . . You want certain strains . . . If you stick with the Heavenly Blue Morning Glory seeds, take 100 hundred of them, grind them up, soak in water for about an hour, strain out the gunk, and drink the remaining seed water you should be fine.<< There is more discussion at other threads. This one is at http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1331060106/10, starting about halfway down the page. If you type "morning glory" into the search bar at the top left of the page, you will find more.

Loko, maybe you already have good oxygen info there. Probably you do. But I'd suggest considering this file, too (which you have my permission to use): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1356823258 I think the addendum about "advanced" methods might be helpful for people who have tried O2 without success, or have found it losing its effectiveness over time.

It's believed that the taurine in energy drinks in addition to the caffeine makes them particularly effective. They are very, very commonly used by people to abort or diminish CH attacks. Maybe he should just try drinking a RedBull or Monster or "energy shot" such as 5-Hour Energy at the start of his next attack and see what happens. Many, many people have showed up here saying that oxygen doesn't work for them, and virtually all of them -- one just in the past week -- have found that it will work if used properly. The most recent person went from thinking that oxygen didn't work at all to aborting attacks within five minutes. That's a very nice change. Please read this file, including the "addendum": http://clusterbusters.com/wp-content/uploads/2012/11/OXYGEN-12-2012.pdf Has he tried the vitamin D3 approach, which has made a big difference for lots and lots of people? http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 More to the point because of where you are (at the ClusterBusters website), has he tried what people here do, which is called "busting"? http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 Like you, I sat with a loved one night after night who endured attacks with no treatment and was not taking any preventives. When my loved one started with energy drinks, got oxygen to work, did the D3 regimen, and busted, everything changed. While she was enduring those attacks night after night, she had many scary symptoms similar to your husband's -- violent vomiting and severe light sensitivity in her case, among other things. She was also remarkably brave during the attacks and remarkably upbeat the rest of the time -- but there was no reason for her to be suffering like that in the first place. I would urge you and your husband to keep trying. (Many people with CH have a hard time "keeping trying," because they have had their hopes up and then experienced severe disappointment. But I'm urging you to help him get past that if it's an issue and keep trying.)

Since I composed the D3 regimen file, you have my permission.

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