CHfather

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?

I'm also curious, lbh, about what problem you're trying to solve. It sounded from your first post like you have a tank but are frustrated with having it run out and then waiting for it to be replaced by an oxygen supply company. There are ways around that problem, including: (1) Get your O2 supplier to give you more than one large tank, which many will do; and (2) If your O2 supplier is completely unwilling to give you more than one tank, supplement your supply with welding oxygen. I don't think (could be wrong) that you can buy a concentrator without going through an O2 supplier, but even if you could, I'm puzzled about why you still seem to be considering this option.

Elly, I'm sure everyone here, sufferer or supporter, knows where you are coming from. And that means we can celebrate with you and Jan for his recent better days, and commiserate with you for all you and he have been through. Now that you have an oxygen system that works and you know about busting, you and he can imagine a better future, at least. If it wasn't for the people here and their kindness and courage, it's hard to imagine how much worse life would be, because, as you have said, even friends and relatives don't seem able to really understand CH or hold in their minds how painful it is; doctors, even though some of them might try, aren't really able to help much; and the dynamics between sufferers and supporters can sometimes be challenging. It's been said here more than once how different the world would be if everyone in the world could just experience a week, or maybe even a day, of CH, and if they never knew whether they were going to get hit again or not. Researchers, politicians, doctors, friends, employers . . . everyone would be a lot more interested in a cure, or at least better treatment, than they are now. Again -- thank heaven for ClusterBusters. For the brave and committed people who started it, for the good folks who stick around to share and support, and for its work toward understanding and treatment.

ricardo, yes (for me), when i try to go to clusterbusters.com through the address bar, i get those same messages. if i come here through my existing bookmark--no problem. HEY Ricardo . . . I was waiting patiently for the correct day (yesterday) to send you birthday wishes, and then I forgot. Hoping it was a good one, and very grateful for all you contribute here!

Sorry Brad!!! From what I've read, topamax is preferable to carbamazepine/tegretol in terms of side effects . . . but far from side-effect free. I think in these situations it's a matter of which you like least, CH or topamax side effects (assuming that the topamax actually works, and assuming that you still don't want to consider busting). While you're waiting for your O2 to come through, seems like you ought to at least consider ordering an O2ptimask (http://www.clusterheadaches.com/khxc/), and maybe a 25-lpm-or-higher regulator. Hoping things get better fast! Jerry

Since spiny hasn't replied yet and it seems Jan is using the oxygen a lot, I will put in my two cents worth and hope that spiny or others will correct and expand. I do not think that with a 12-15 lpm flow rate (if that's what you still have), even with the larger bag on the O2ptimask, you can actually hyperventilate completely. But the principle of hyperventilation is to get as much stale out out of the lungs as possible, and as much O2 in as possible. So, a very full exhale at the beginning, followed immediately by some kind of action that forces even more air out (such as pulling in the stomach muscles and/or coughing), followed immediately by a deep inhale of the O2, is the general idea. Some people suggest that this is best done standing up -- but of course if he becomes dizzy or lightheaded at all (which would be expected), he should sit down. True hyperventilation, as practiced by many people with CH, generally causes a feeling of tingling or slight numbness around the lips or in the fingers or elsewhere. This can come on pretty quickly -- and it also goes away pretty quickly once the hyperventilating has stopped. But it can be kind of frightening . . . and I'm a little concerned that with the many kinds of meds Jan has taken, and all he's been through, and the large amounts of oxygen he is using, maybe it would not be a good idea. I'm not a doctor -- just speaking out of concern (and as I've said, I don't think you really can hyperventilate effectively at 15 lpm or less with the O2ptimask bag). My sense would that for now he should just follow the principle of forcing some additional air out of the lungs on the exhale, and then immediately breathing in deeply on the inhale. I would be a bit cautious about this (just me saying this), and, for now, keep trying to find a style of breathing that works well for him without overdoing it. As he feels better and stronger, he could try the more extreme forms of breathing if he is inclined to. Like I say, just my opinion.

b'man, spiny's advice is, as always, completely sound. I would only add that since you have used psilo, a high dose of RC is probably not going to cause a trip you can't handle. Really, the relatively low initial doses are based on making sure no one has any bad psychological side effects (possible stomach upset is also a consideration, but not one that's worth shortchanging yourself on LSA). So far, I have only read here of one person having any kind of significantly "trippy" experience with up to even 70 seeds. The vast majority of people have no psychedelic effects at all, even at those levels. So if you're okay with the remote possibility of some kind of trip that will still probably be nothing like the psilo experience, I'd go with 65 float-tested seeds. You know the float test? Put them in water, stir to release any that are stuck to the sides of the glass, and use the ones that SINK. Pat them dry before you crush them. Although some people use a coffee grinder for the grinding, I would personally recommend a mortar and pestle or a hand-turned spice grinder, if you have one of those things. If you use a coffee grinder, I'd recommend very quick pulses with some time in between. (Heat damages LSA.) Very best wishes for success.

If they're slapbacks, they should start decreasing with the third dose, probably regardless of size. I don't think anyone knows whether a lower dose would result in less severe slapbacks--but maybe someone does. My own opinion is that 45 tested seeds should be a large enough dose for someone like you, with episodic CH. Just grabbing at straws here. . . . There's been some "heated" discussion here about the coffee grinder. There was a time when it was considered a bad idea, even a non-no, because of the heat it generates, since heat harms LSA. Other methods for grinding seemed to be preferred, like a mortar and pestle or a hand-operated spice mill. Some successful busters have said they use a coffee grinder, and you can't really argue with their success. Their position was that all you need is a couple of quick pulses, and that doesn't create much heat. You can make your own decision with that info in mind. Gosh, I so hope it gets better for you.

RedDog, really hoping that things settle down. Most likely, you are experiencing post-dose hits, which take a lot of forms, although I admit that the form you're describing is not one I have heard about before. Please do let us know how things are going. If you're feeling up to it, could you describe how you prepared the 65 seeds. I know you say "as per the directions," but there are so many "directions" out there. Mainly, hoping you are feeling better.