CHfather

This is just SOOOO INFURIATING!!!!!!!!!!!!!!!!!!!!

Since this use of welding O2 is kind of "off label," I'm hesitant to push you too hard. I can say that people here have obtained welding O2 from many different companies and used it successfully (or maybe the ones who died from it just stopped posting ;D ;D). It's not unusual for people to get it from Harbor Freight, and there's probably a HF store near you.  If you search for something like [purity of welding oxygen] on google, you'll find 97% of people saying that welding oxygen is as pure as medical oxygen -- quite a few say that it's actually slightly more pure. The O2 itself is definitely not denatured or mixed with other gases; the concerns that are expressed about purity have to do with the tank-filling process, and those are dismissed by most knowledgeable people. (Maybe your sister and brother-in-law might not mind calling one of their suppliers and inquiring about the quality of the O2?)

If you have the resources to go straight to psilocybin and are comfortable doing that, then you should at least consider it. Some things to consider: (1) You might of course "just" be having some post-dose hits, which even seems likely given the good results you seem to have had so far from the HBWR. (2) While psilo will work better for some people than LSA, and vice versa, psilo is not overall a more effective agent against CH than LSA. In fact, there are those who have a broad overview who say that LSA is better than psilo. And those same people say that if HBWR is better than RC, it is only by a very very slight margin, if at all. (3) I personally had a devil of a time figuring out what I was doing with HBWR--getting that husk open, finding and picking out those little seeds, etc. -- which is why I (and many others here) recommend RC over HBWR in terms of certainty and predictability of dosage. Is it time for you to look into setting up your own O2 system using welder's oxygen? This doctor thing is upsetting and completely infuriating; maybe it's time to just act on your own?

mrsg, most of us are here because we've experienced or seen busting work. i suspect that about all we can say in this distressing situation for you is that it's likely to work for you, too -- and we are, in our own ways, praying that it will. you deserve it, that's for sure.

Here's one article on that topic: http://w.baillement.com/texte-migraine-evolutionary.pdf (Not PMing it because it might be of some general interest.)

Hitman also has a relatively huge amount of caffeine--240 mg, which is 80 mg per ounce. RedBull energy shot has 80 mg total (so does an 8 oz RedBull), so the RedBull energy shot is "just" 39.4 mg/oz, and the standard RedBull is 9.5mg/oz.  Almost all Monster drinks have twice as much caffeine (160 mg.) as RedBull. At least according to this chart: http://www.energyfiend.com/the-caffeine-database  I completely agree that that is the consensus. For the sake of our "citizen scientist" explorations, I just add that one poster recently said that RedBull didn't work for him, whereas Monster did. He attributed that to an ingredient that is in Monster but not RedBull (don't recall what that ingredient was). (And I do think I notice that of people who have tried both, Monster seems to be preferred--but maybe it's all that caffeine and not the "mystery ingredient.")

So much admiration for you. So much hope for better days. Jerry

If it helps, there are quite a few illustrations of the hypothalamus and its connections here: Psilocybin and serotonin molecules illustrated here: http://www.chm.bris.ac.uk/motm/psilocybin/psilocybinh.htm

. . . who is so much in the hearts of so many people here. May this year be the one we all have been waiting, hoping, and praying for.

If the wrong people find out that this site has many gods, and that their names include Bejeeber, Bonkers, Tingeling, and Alleyoop, we could all be in big trouble.

Thanks. Bless them and all who have carried on since then.

For us relative newbies, who were the original 5?

In the short time you've been here, you've been helpful to so many people. I'm so glad you're here!

Since you're getting what look like slapbacks, I'd say 20 was a fine dose. Not long ago, 20 (or even fewer) was the recommended first dose, and some people here have busted successfully with 10. If you had no undesirable reactions from 20, you could up the number next time if you want to, just to be on the safe side. I can't really comment on the other effects, but others probably will. A new thread, as Purp suggests, is a good idea. Ginger tea helps many people with shadows, as do "energy drinks" such as RedBull and Monster.

iPain, when your O2 is set up, be sure you're using your mask properly. Here's the recommendation from http://www.clusterheadaches.com/O2/index.html >>>Notice the little round white disks on the side of the mask. These control the exhaled air, and the outside air. If there is not one on each side, either tape over the other one, or (as I do) place your thumb over the holes, during an inhalation, and then remove the thumb during an exhalation. If these valves are not present, or in good flexible condition, you will not get the full 100% oxygen that is required....If you are male, and have facial hair, you may have trouble getting a full seal around the mask. You may want to just remove the mask, itself, and breathe straight from the plastic valve mechanism.<<< Eventually, you might want to get the O2ptimask, which is made specifically for people with CH and is very highly regarded. http://www.clusterheadaches.com/khxc/index.php?app=ccp0&ns=catshow&ref=LifeGas A lot of people here have said that drinking ginger tea helps them with shadows.

B, just a couple of quick thoughts. 1. You should probably send a PM (private message) to Les to get answers to your licorice root questions. Can't say for sure that Les will respond, but here's the way to send that PM: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=imsend;to=464F59754D4F44594F582A0 2. (This actually should be #1) Since your new PCP didn't know the difference between TN and CH, you want to see a headache specialist ASAP. (Not just a neurologist, but preferably a headache specialist.) If you have CH, you will, as you say, want to get oxygen prescribed right away. For most people, it's a very effective abortive. But there are other conditions that look like CH but are something else, and require different treatment. So a good diagnosis is absolutely essential. Here's a US list of doctors recommended by people with CH: http://www.ouch-us.org/chgeneral/OUCH%20DOCS%20-%20US%2001-27-2012.pdf There are separate lists of Canadian and "worldwide" doctors at the same site. (BTW, my daughter lived with a TN diagnosis for several years before we researched and found she had CH, not TN. Also, in the beginning, my daughter's experience was like yours -- she could just endure her attacks, which didn't last too long. Then they stretched to hours. So get on top of this now. We're all hoping that a "cure" is on the horizon, but in the meantime, you want to be fully armed.) 3. There are some documents in this file that might help your PCP--if you want to go back to him/her and request oxygen--to understand how fundamental O2 is for treating CH (you could print out the JAMA article and bring it with you, for example): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 4. Did your doctor prescribe anything for the TN? Some drugs prescribed for TN (such as the antiseizure drugs Neurontin and Lyrica) can also sometimes help with CH. Not many people would recommend them, if only because the side effects are so awful, but you might consider trying them if you feel the need for something in the short run that might help. 5. Smoking isn't good (in case you were wondering ), and some people (including Les Genser) argue strongly that stopping smoking is important for a systematic treatment of CH. So quitting is a good idea. But most people who have quit have not found that it affected their CH much. Alcohol is a much more common trigger, but lots of things are triggers for lots of people. 5. If your system can handle it, drinking an "energy drink" at the start of an attack can be quite effective for quelling them. RedBull or Monster, for example -- something high in caffeine and taurine. Good for you for finding this site and reading and asking questions! Keep it up. The great folks here will help you.

March Hare: Birthday? Hahahah My dear child, this is not A birthday party! Mad Hatter: Of course not! This is an unbirthday party! Alice: Why then today's my unbirthday too! March Hare: It is! Mad Hattar: What a small world this is! If you feel you must: http://www.youtube.com/watch?v=InSn2BLDwfQ

my daughter was very light-sensitive during her CH attacks. it's my understanding that it's rare, but not unheard of.

You may get some fresh thoughts on depakote here, but if you type it into the search bar (top left), you'll see quite a bit about it -- most not positive.

You probably don't want to use the seeds that are meant for planting in a garden, because they're often treated with some nasty chemicals (others please correct me if I'm wrong). Longshot: I have read that there is a Pakistani strain of Hawaiian baby woodrose: maybe someone's growing that and you can snag some seeds??? Meanwhile, check with tranceplants, allsalvia, etc. How to take them. General instructions here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 Some specifics in this recent thread: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1329318355 You might be able to use morning glory seeds. I assume the "fresh" ones from growing plants are safe. See the posts after that "LSA" file I linked you to. Ricardo's the main man on morning glories, so maybe he'll pop in here, or you can PM him. When it comes time, check in with us. Recently a person here said that RedBull made his heaches worse. That's the only person I've ever read saying that -- for most people, it helps a lot. That fellow said that on the other hand Monster did help him. There's a "proper" mask and there's a really good mask, the O2ptimask. Worth considering. See the file I linked you to.

Yes, you can do that. Then get rid of/replace the floaters. Then pat dry all the seeds. Then grind, then soak, then drink. Don't grind with anything that gets too hot (e.g., coffee grinder). I think the typically preferred method is more "crushing" than grinding -- with a mortar and pestle, for example -- but a hand-operated spice grinder is also fine. There was a time when 50 was considered a high first dose. I guess we've seen enough now to think that it's unlikely that you'll really "trip" at all from that number of seeds. I think around 35 is still the recommended first dose (up from about 20-25 when I first got here 18 months ago), but if you're comfortable with 50, go for it. Let us know how all this, and/or how the licorice root, D3, etc., goes. Are you off the verap now? If not, you might want to start with D3 rather than licorice root, and heed the verap procedure related to D3. Also -- you have oxygen? PF wishes!

[edited: well i see purp is right in top of some of this. nice going, purp!! thanks.] well, RC seeds are very light, so if they are legal to receive, the shipping cost from anyplace would not be very high. you might try contacting the very helpful folks at www.tranceplants.net thay are in canada, there's also, in england, http://www.allsalvia.co.uk is your oxygen flow rate at least 15 liters per minute, and do you have a non-rebreather mask? if yes to both of those, many people find that they need flow rates that are higher than that, or that a top-quality mask helps a lot. you can find more about that here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790 whooligun mentioned some other things that have worked for many people, including licorice root and vitamin d3. you can read more about those things here: d3: 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 have you tried drinking an "energy drink," high in caffeine and taurine, at the start of an attack? that helps a lot of people (in the US, the typical brands are redbull and monster). hang in there; it'll get better!

Renee, when are you going to get some doggone O2?

We have a friend who is a Vedic (Hindu) astrologer. Asked him to do my daughter's chart. He said, "Boy, her head sure is messed up. Right side." (Yep.) He suggested that I arrange for an ashram to offer up mantras for her. I called the ashram, and the woman said they'd want to do her chart first, to decide which mantra to do. When she called me back, she said, "Poor dear, she must be in a lot of pain." (These shouldn't be taken as two separate confirmations, I suppose, since they both were looking at the same data with the same basis for interpretation.) Another friend of ours can see people's auras quite clearly. (Scoff if you will; if you heard more, maybe you wouldn't.) He told my daughter that she had the second most beautiful aura he'd seen, full of philosophical wisdom. (He didn't say anything like that about me or any of the roughly twenty other people we know who have seen him. That was before my daughter's CH got really bad. I suspect that today he would see the pain, too.) Just data. Who knows? But I don't discount the idea that some cosmic force makes arrangements for when we'll come into the world, what we'll deal with, and what resources we'll have to deal with it all. This gives me no comfort at all in the face of my daughter's suffering, but maybe it could or should. (Since this would apply to all of us, it would mean that we loved ones are where we are for a reason, too.) (And, yes, I think the ashram's prayers did help, but busting's a whole lot cheaper. Those monks don't come cheap.)

Yes, some seeds are prepared and then consumed as a busting element. They generally aren't used to stop an attack (pain relief), but as a preventive, taken over a period of time, five days apart. This file will give you the basics, and walk you through the process, as you request: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974 You'll have to get the seeds (easy to order on the internet) and you'll probably have to be off the meds your doctor has given you for five days. Buying and possessing the seeds is legal; consuming them is not. After you've looked at that file, get back to us. Plenty of folks here who will help you.