Cefaly?

[jms]

This is my first time here so I apologize if this topic has already been discussed, but I saw this device that is supposed to help CH. I don't get CH but my son does and would love to find something non invasive that would work.  We've tried about 18 different medications and supplements, but the best thing we've found is the oxygen. At best, it helps somewhat, but the CHs are still disabling. We are looking for alternatives to drugs and surgery.

[Bejeeber]

Alternatives To Drugs And Surgery "R" Us!

OK I don't actually speak for the website or anyone else on the message board here, but I thought that would sound like a snappy slogan, because last time I checked, it is the primary focus of this message board indeed.  8-)

Regarding the non invasive device - I imagine you've seen something about Gammacore. There is a ClusterBusters conference coming up real soon, would be so cool if you could attend, check this part of the agenda out:

"Clusterbusters is pleased to announce the participation of ElectroCore Medical, the manufacturers of GammaCore.

GammaCore is a non-invasive treatment therapy of vagus nerve stimulation.  This treatment shows considerable promise for those with primary headaches such migraines or CH.  Trials are currently underway in other countries and will be starting in the USA shortly.  Mr. Eric Liebler and Ms. Jennifer Berman of ElectroCore Medical will make a presentation at the conference. 

Their web site is http://www.electrocoremedical.com"

More conference details: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1377961953

This forum is also highly populated with folks such as myself who have gained tremendous CH relief from "busting", which involves ingesting plants well known to indigenous peoples for their therapeutic properties for thousands of years.

These plants are easily more effective preventatives than any synthetic drug, as shown in research at Harvard Medical, et al, and have been tried and tested by a huge number of Ch'ers in recent years.

Here's the catch: Some of them could induce a psychedelic trip. Certainly the ultra powerful CH killer psylocybin can, but the more recently adopted Rivea Corymbosa (RC) seeds do no such thing (well for me at least).

Check out this Newsweek article on the subject for starters - I think it's a very good introduction, although it doesn't touch on the mild acting RC seeds:

http://www.newsweek.com/2009/10/14/the-psychedelic-solution.html

Also one of our members was featured in a National Geographic segment on this same busting subject. Unfortunately my link to a video of that is now broken, so maybe someone else will have a working link.

[jms]

Thanks for your reply. I am definitely interested in the seeds and other plant type "busting". I'll do a bit more research on those. As I mentioned the oxygen is somewhat helpful.  Has anyone tried cooling the oxygen air before it gets to the mask? We are considering some sort of home made cooler where by the air hose from the O2 tank can pass through a cooler with ice and chill the air before it goes into the mask. Just a thought...

[CHfather]

If you have a humidifier for your oxygen setup, you can put ice cubes in it to cool the O2.  If you don't have a humidifier, here's a tip from our "sister" site about how to make one (that you can add ice cubes to):

>>If you canÂ’t get a moisturizer

Make your own.  Take an empty (and cleaned) mayonnaise jar (or something like that), drill two small holes in the lid, the size of the O2 air line.  Cut your hose, a foot or so from where it hooks to the tank. Stick the hose from the tank into the lid, and far enough down so that it touches the bottom of the jar.  Take the hose that goes to the mask, and stick it into the other hole, but just far enough to stick through the lid.  Seal around both hoses with a silicon type sealant.  Put an inch or two of water into the jar.  No more than ¼ full!  I attached mine to the tank with a bungee cord.  BTW, if you put ice cubes into the water, it will cool the O2 somewhat.  Many feel this helps it to work.<<

You can buy a humidifier (a "bubbler") here, among other places: https://www.mooremedical.com/index.cfm?/Disposable-Humidifier/&PG=CTL&CS=HOM&FN=ProductDetail&PID=676&spx=1  If he's using medical oxygen, your O2 supplier might provide a humidifier.

For other ideas about getting the most from O2, you might read the oxygen file that's under the "MENU" tab on each page here.

I am also the parent of someone with CH.  It's tough.  I'm glad you came here.  Please stick around.  There's a lot to learn.  Does your son drink an energy drink, or a strong cup of coffee, as soon as he feels an attack coming on?  That can help.  Has he tried the vitamin D3 regimen that has helped a whole lot of people?  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804  Melatonin at night?  Maybe you'll tell us more about him.  The folks here are great, and ready to help -- and like Jeebs said, if you/he can make it to the conference, that could be a very good thing.

[diamondmaker]

Just a question about your oxygen... do you have tanks or a concentrator? Reason I ask is O2 comes out of tanks very cold! You might have the wrong set up. the usual is

1. Pure O2 in tanks

2. a regulator that delivers 25 liters per minute.

3. A NON_Rebreather mask. (Bag and no holes).

Most of us use the Cluster O2 Kit - mask found here:

http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=o2ptimask

Fine tuning your oxygen set up usually brings better relief.

[CHfather]

I am definitely interested in the seeds and other plant type "busting". I'll do a bit more research on those.

I failed to mention that a good place to start your research is in the "ClusterBuster Files" section of this board, where you want to read the numbered files by TommyD.  Here's a link to the introductory one: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865

(Also, just to mention that where d'maker says "a bag and no holes" up above, most standard-issue non-rebreather masks have a couple of vent holes in them (each consisting of a bunch of smaller holes), usually one with a gasket in it that lets air out but not in, and often the other one being completely open. Folks with CH typically block off that "open" hole when they are inhaling, so that no room air gets in -- they're breathing all O2 from the tank. It's also important to make sure that the gasketed hole is working properly, so no room air gets in through it.  The O2 mask that he mentions and links to (formerly called the O2ptimask), has no holes in it, which is one of many features that make it easier to use and more effective.)