CHfather

Great big [/img] to those thoughts -- and what better way to illustrate that than with this photo of Jeebs from this year's conference in Vegas.

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What a great story, jhs!! I'm pretty sure most people here would recommend another bust, to be on the safe side.

Welcome, TR. If you type the word truffles into the search bar at the top left of the page, you will be able to find some discussions about what kinds of truffles others have used, in case the mexicana kind are not the best kind to use. If you do that search, you might contact some of the people from Holland whose names you see there by sending them a Private Message (PM). Oscar has been very helpful to many people. Often, "dosing" (using a psychedelic to treat CH) is followed by what we call "slapbacks" or "post-dose hits," in which things get worse before they get better. This is considered a good sign that the psychedelic might be working. It sounds like that might be happening with you. Usually these slapbacks are less severe after the third dose. So maybe you are on a good path even though it doesn't feel that way right now. If you are using immigram injections, or you did use them earlier in this cycle, they might have interfered with the effectiveness of the truffles. It is usually said here that you have to have stopped any triptan, such as immigram, for about five days before taking psychedelics in order for them to be effective. If your oxygen flow rate is 15 litres per minute (lpm) . . . many people find that is not really enough for them. You can trying getting a regulator with a higher flow rate. Many people find that with a 15 lpm regulator, they get much better results if they replace the bag that is attached to the mask with something larger, such as an unscented garbage bag or turkey bag. That allows you to breathe more deeply and more rapidly. Also, many people find that the O2ptimask is a big improvement over the standard non-rebreather mask. You can see that mask here: http://www.clusterheadaches.com/khxc/ Many people find that drinking an "energy drink" (RedBull, Monster, etc.) at the start of an attack helps, and if they combine drinking an energy drink with oxygen, the combination seems to be more effective. Coffee also helps, though for most people not as much. Other people will have other suggestions. Melatonin taken at night helps a lot of people. We are hoping for the best for you!

I've been wondering about that. As I remember it, this was mostly Lieutenant2's inspiration, and he reported some good initial results. But he hasn't posted anything in almost a year, and I keep thinking that if the GABA had continued working for him, he would have let us know. I believe I've seen his handle on the daily list of people who have been at the site within the last 6 months or so, but I don't remember any posts. My own research suggested that GABA supplements don't cross the blood/brain barrier and therefore would likely be ineffective, whereas gabapentin does, but there were some contrary indications.

You'll find some of what you asked for--positive and negative--in this "poll" thread: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1296960364/3 Quite a few people report positive experiences (and non-positive ones) in this long thread: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1293084254/0

Can't tell you how great it is just to see a post here with your handle on it, Mystina!! I know I'm not the only one who thinks of you often with affection and admiration. Jerry

I feel pretty certain, like 99 percent, that it's the caffeine too (since caffeine alone works for many people). But, hey, we're learning things all the time here! Wonder whether Jeff did that taurine-only experiment?

The organization OUCH (now defunct, at least in the US) asked people with CH to recommend doctors. Here's the list for NJ: Bloomfield: Dr. Joseph A. Carluccio Edison: Dr. Michael Merkin Edison Neurologic Associates Emerson: Dr. William L. Cantor (ENT) Kearny: Dr. Frederick Weisbrot Somers Point: Dr. Kevin E. Hunter Coastal Physicians & Surgeons Stafford: Dr. Loretta L. Mueller UMDNJ - University Headache Center Summit: Dr. Melvin Paul Vigman Vigman & Pollock Turnersville: Dr. Ramon Manon-Espaillat Neurology & Neurophysiology Associates of NJ

Arrrrgh. That neuro story is so typical. Makes my blood boil. Was it Sewell's study you were involved with (where people sent in seeds they had used to be tested)? This one: http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf

In short, Avrild, "busting" is using psychedelic drugs to end CH cycles and even prevent recurrence of cycles. The drugs are taken at low levels that induce no psychedelic effects, or generally low levels of psychedelic effects. These drugs have been shown in many studies to work against CH. Some people use psilocybin mushrooms, some use LSD, and many use seeds that are very easily converted to LSA, which is a form of LSD. In most countries, the seeds are legal to buy and possess and are converted to LSA very simply, by grinding them and soaking them in water. Drinking the mixture that results is against the law in most countries. The seeds usually work quite effectively with no psychedelic effects at all, and they are very inexpensive. I would say that most people here would say that if these drugs were legal they would be the #1 prescription (along with oxygen) for CH, since they are effective and they have no side effects for most people. Unlike oxygen, they are not used to treat individual attacks but to end cycles and often prevent cycles. Most people here have been on the types of drugs you are taking (and many others) and have found that they prefer busting. You can read about many aspects of busting in the "ClusterBuster Files" section of this board. You cannot bust while you are using many of the medications you are taking, particularly the triptan. A "detox" from those meds of five days is strongly suggested. Here's the basic file from the ClusterBuster files section: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865 There are many others there that we can refer you to if you are interested in busting. You might also consider the completely legal, relatively inexpensive "vitamin D3" approach that has helped a lot of people reduce the severity of their attacks, end cycles, and perhaps prevent future cycles. You can read about that here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Regarding your O2, a lot depends on how effective it is for you now. Many people find that the bag attached to the mask doesn't fill up fast enough at 15 lpm to allow them to really inhale deeply and frequently. In addition to some other features, the O2ptimask that I have mentioned has a larger reservoir bag. You can also take the reservoir bag off your mask and replace it with an unscented trash bag or turkey bag, which will give you more capacity. The idea is, as I say, to breathe very deeply and somewhat rapidly. Some people even "hyperventilate" to push as much stale air out of their lungs as possible and get in enough pure O2 so that it works faster.

Fingers crossed! Here is the place where you can get this mask: http://www.clusterheadaches.com/khxc/. Many people with CH find that they abort attacks much more quickly and effectively using it. In addition, many find that using higher flow rates than what is typically prescribed also helps get a quicker abort. Guessing that your regulator goes up to 12 or 15 litres per minute; many people now use 25 or more lpm. In many places, one can buy a higher-lpm regulator and attach it to your oxygen tank, but I do remember that in some places in the UK the regulator is built-in to the tank and can't be changed. In that case, there are still some things you can do. Let us know if you are interested--and don't forget about the energy drinks! (Coffee works, too, but for most people not as well as the energy drinks.) For now, we all will hope, with fingers crossed, for success with your procedure today.

Jackie said it all very well, Avrild. Plenty of people here who can help. I have the sense that you are in Europe (since Lustral is called Zoloft in the US)? How is your O2 working for you? Some folks have found that relatively small improvements can make a big difference. One simple thing is to drink an "energy drink" (RedBull, Monster, etc.) just before you start on the O2. For a lot of people, that can make a significant difference in how quickly the O2 works. Other people here have found that the mask that is made specifically for people with CH -- the O2ptimask -- helps them abort much more quickly with O2. There are some other ideas, too, which we can get to if you are interested.

Great big smiles to you, too, RD!!! [/img]

thrilled that you're seeing this progress, heilette!!!!!!!!

I'll second that! :)

As you should!

Like I say, very similar looking: [/img] [/img] You're right, though -- the Starbucks website does not list taurine as an ingredient in either the "energy drink" or the "espresso." In fact, a search of the entire Starbucks website doesn't turn up "taurine" anywhere! However, many older websites do show taurine as an ingredient in the Starbucks "doubleshot energy" drink. (For example, http://voices.yahoo.com/starbucks-doubleshot-energy-drink-review-3730222.html and http://www.energyfiend.com/caffeine-content/starbucks-double) So I'm wondering whether Starbucks has recently changed the ingredients in the "energy drink" to exclude taurine, but maybe there are still a whole lot of cans of the old formulation being sold. Only other thing I can think of is that there's still taurine in it, but they're not saying so, but I assume that would be somehow illegal. The can for the old one, which seems to have included taurine, is different. It looks like this: [/img]

spiny, I think the product that has taurine in it is "Starbucks Doubleshot Energy + Coffee." That's a different thing from "Starbucks Doubleshot Espresso," which I don't think has taurine. The cans look almost exactly the same.

The O2ptimask is specially made for people with CH. Over and over, people who get it say it has speeded up their aborts substantially (and is more comfortable, for people where that's an issue). You can see it here: http://www.clusterheadaches.com/khxc/ My overall point was that if you use some of those strategies to get quicker aborts, your tank could last longer. Even with the higher flowrate regulators, you still could get a quick-enough abort that you wouldn't be using more O2. Not to mention that a quick abort is in itself a better thing.

Yes, there have been three people here who have said the D3 made them worse--a lot worse, in at least one case. They all had chronic CH, pretty severe in at least two of the cases. I'm pretty sure they were all taking the D3 in pill form, not liquid.  The hopeful news is that their heightened attacks went away when they stopped taking the D3. I would of course stop taking the D, at least for now. If you want to learn more, the best person to communicate with is "Batch," who follows the D3 approach very closely. If anyone might have an observation or advice, it would be him. And he is generally very responsive to messages. You could post a message, or PM him (or both), from here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1324046404/25

Are you doing other things to speed up your aborts, such as quickly downing an energy drink just before you hit the O2, using an O2ptimask, breathing as deep as you can (hyperventilating if the flow rate will support it), and/or using a higher-flow regulator (25 lpm-plus), which you can buy on your own?

    >>I know what the normal protocol is but no way I'm making 5 days<< On another part of the board, I asked whether there's any health risk to busting while taking triptans. Asked that because I was wondering about your situation. Not a lot by way of answers there (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1354591591/2#2), so I can't say affirmatively that if you busted while still using the zomig (and/or the trex), it would be completely safe -- maybe no one can say that.  But my advice (given what you have said about not being able to make it the full five days), which is just my thinking, would be that if busting in proximity to triptans is safe, to stay off the zomig and trex as long as you can and then give busting a try, even if it is just a couple of days. My logic -- which might be faulty -- is mostly, why not? We have seen some people have some success while taking other things that were thought to block busting, and if the worst that could happen is that the busting wouldn't work, you'd just be in the same situation you'd be in if you couldn't wait for five days and therefore you didn't bust at all. I don't think that busting blocks the subsequent effectiveness of triptans, and I don't think using triptans after busting blocks the effectiveness of the busting. Since I am absolutely just guessing, let me list the four guesses I have made, so that anybody can correct me: Guess #1. Busting in proximity to taking triptans (let's say two days on either side) does not pose a serious health risk. Guess #2. Busting with less than five days of detox from triptans might work, at least partially. Guess #3. Taking triptans within a few days after busting will not block the effects of busting. Guess #4. Busting will not block the effectiveness of triptans taken a few days after busting. If any of those guesses is wrong, then it would seem that you'd have to wait out the full five-day detox (which you already know is the recommended approach), or else just stick with the triptans/D3/O2 for this cycle and get on top of busting next cycle. (I have to say that when you wrote that you had done yard work on Sunday, I thought "Uh oh." You're not the first person here who has decided to do some yard work on a good day while still in cycle and then gotten hit hard the next day. I've been kind of hoping that today would be better for you.)

Me, too, man. It's been hard as heck just watching. I know you are in many, many prayers.

Ya know, b'man, just sayin' here . . . You might also be responding positively to your three busts. The worst slapbacks are usually after the first two busts and maybe a little after the third one, and that's kinda exactly the timing of your recent break. I see davidj saying that your slapbacks have been rough in the past . . . maybe this is a similar pattern? Not sayin' it's not the zomig . . . just maybe something to consider?