CHfather

gg, it's my understanding that lots of people stay on the 10,000IU of D3 all the time. Have you had a blood test for your D level? Do you ever try an energy drink or energy shot to about your attacks? Seems like at your level, that might work for you.

I think we're increasingly seeing that verapamil is not the full blocker of busting that it was once thought to be. So (my opinion only here) if you think verap will help you, and your dosage is low or moderate, you might be able to resume it while continuing busting. Not the ideal course, probably, but not crazy if you feel that maybe busting is losing its effectiveness. 5,000IU/day of D3 is probably not enough. I'd suggest stepping up to the recommended 10,000IU -- and you should get a blood test to see what your D level is. Are you doing all elements of the D3 protocol: Omega-3s, acidic juices (lime, etc.), other vitamins? https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 (maybe the regimen has been updated over at ch.com since this was posted; this is my latest info). as Jeebs says, you might try switching to a different busting agent. LSD is indeed often hard to find, but LSA/seeds are easy to get.

g'gal, have you tried higher-flow oxygen with the mask specially designed for CH? Those things can make a big difference. See the CB Oxygen Page under the black and white MENU tab for more information and other suggestions.

Got it! Thanks, FG, for this and all the other things you do. See you there.

This is useful, didg -- thanks. Here's some additional information, including a chart on the second page, comparing CH (first column) to Charlin's Syndrome. Unfortunately, the whole chart can't be seen. http://books.google.com/books?id=1mDa08pQ-G0C&pg=PA9&lpg=PA9&dq=charlin+syndrome&source=bl&ots=bB_fmwdUln&sig=40Q6PLt2Ry9fOcHWIQRn19BkjLk&hl=en&sa=X&ei=vfjsU7-sMdGAygTdvYDACg&ved=0CDUQ6AEwAzgK#v=onepage&q=charlin%20syndrome&f=true It's clearly not impossible that given all the sloppy diagnosing going on out there, some people think they have CH when they have Charlin's. I guess the "nasociliary block" test would help determine it, as well as a well-read MRI.

Yep.

FWIW, still no rooms as of 3:55 Eastern Time.

I've read one or two accounts of people who were labeled as "cholicy" but who now think they probably were suffering CH attacks. I think that's true of my daughter, who cried hysterically from time to time as a baby.

So sorry you won't be there. You're always a great contributor.

Thanks!

A multi-tasker! Thanks!

What I get for dilly-dallying, I guess . . . Nothing available online at the group rate, and when I called I was told the same thing. I could only get a completely non-refundable room, at a higher price, and I don't feel comfortable making that kind of advance commitment. Suggestions, anyone? Places nearby, maybe?

Epinephrin, which is used as a local anesthetic, is considered to potentially cause problems, at least with oral surgery. At a previous thread, Bob (alleyoop) wrote in relationship to oral surgery: >>do not let them deaden you with Xylocaine with EPI (epinephrine) . . . request prilocaine or anything without EPI.<<< I don't know whether those anesthetics might be something they'd use for your shoulder surgery.

John Bebee posted this on his Facebook page today. I hadn't seen it before. http://www.thejournalofheadacheandpain.com/content/14/1/48 The conclusions: >>Patients with episodic CH who are also smokers appear to have a more severe form of the disorder. However, it is unlikely that between CH and smoking there is a causal relationship, as CH patients rarely improve quitting smoking. <<

Grace, At 10 lpm, an E tank will give you about 50 minutes of O2. If you get results at 10 lpm, it's probably going to take you at least 15 minutes to abort an attack, and 20 minutes to follow the recommended procedure of staying on the O2 to help prevent subsequent attacks. We can hope for better, and you might get it, but 15-20 minutes per abort is probably a good guess, maybe an optimistic one. You can do the math: you might abort about two or three attacks, maybe four, with an E tank before it's empty. Even if your results are better, you're still going to run out of O2 pretty quickly. I should have asked this before -- Did you get this tank, regulator, and cannula from a company that supplies medical oxygen? Somehow it sounded less "official" than that to me. If so, you should be on the phone to them ASAP demanding that they bring you a larger tank (an M tank), a 15 lpm regulator, and a non-rebreather mask immediately. Many O2 suppliers don't know anything about CH -- they're mostly supplying people who have COPD, where the low flow and the cannula and the smaller tank are fine. If they're resistant, get them somehow to see that JAMA article about O2 for CH that's linked to in the CB Oxygen Page -- fax it to them, send them a link to it, read it to them over the phone . . . whatever it takes. Do not relent about this. I think most O2 suppliers want to do a good job; it's just that some of them are clueless about CH. (I am saying all this from experience.) If you got the equipment in some other way, you're going to have to get that E tank refilled pretty often, or get some more tanks. If your O2 supply is seriously limited, you won't use the high flow and really get into the aborting, because you'll constantly be afraid of running out again. The regulators that fit medical oxygen E tanks have a CGA870 fitting. But if it's a "E size" tank for welding oxygen, the fitting will be CGA530 ("E" is only an official designation for medical O2 tanks; it's not used for welding O2 tanks, but the tanks are roughly the same size). Here's a 25 lpm CGA870 regulator for sale at Ebay: http://www.ebay.com/sch/i.html?_odkw=oxygen+regulator+medical&_osacat=0&_from=R40&_from=R40&_trksid=p2045573.m570.l1313.TR0.TRC0.H1.Xoxygen+regulator+870+25+lpm&_nkw=oxygen+regulator+870+25+lpm&_sacat=0. The fittings for all welding tanks, of any size, are CGA530. The truly large medical tanks (M tanks) also use CGA530 fittings. But again -- and I'm sorry for not saying this sooner -- if you're getting your O2 through a prescription, from a medical supply company, they should be giving you the basics of what you need. They might only give you a regulator that goes up to 15 lpm, but that will be sufficient for good aborting (I hope) in the beginning. They should also give you at least one M tank in addition to the E tank.

The thing is, if it's a medical oxygen tank, the higher lpm regulator you want will have to be of the right style to fit on the tank. That's why knowing the size of the tank matters. If it's welding oxygen, it's simpler, because all the fittings for regulators are the same. Oxygen will make a huge difference for you. You should make it an urgent priority. A a mask is your first priority. In the short run, you can probably get some help from the 10 lpm regulator, although if you can afford it, you also want to upgrade that regulator right away. The best mask, which costs about $25-30, is here: http://www.clusterheadaches.com/khxc/. I think it might take about a week for delivery. A satisfactory mask, that will be sufficient to get started, costs just a few bucks. Look on ebay or amazon.com for non-rebreather masks. Note that these masks are quite inexpensive, so if you see a price quoted of more than a couple of dollars, it is probably for a case of masks, not just for one. Here's one at amazon, where you can get 1-3 day shipping for an additional $11. http://www.amazon.com/Medsource-Non-Rebreather-Adult-Oxygen-Mask/dp/B004Z8V47G/ref=sr_1_2?s=hpc&ie=UTF8&qid=1407017735&sr=1-2&keywords=non-rebreather+mask If you can say how tall your cylinder is and what its diameter is, we'll know what size tank it is, and then we can talk about what regulator to get. Like I've said, if it's a welding oxygen tank and not a medical oxygen tank, then all the regulators have the same fittings.

I've been trying to find the actual multiple-choice questionnaire that the authors of this study used, but haven't been able to. The questionnaire was posted at both ch.com and OUCH in late 2008. Without having seen it, I'm going to assume that what's being counted in the 48% numbers and the others I mentioned is anyone who ever has had those symptoms, as opposed to those who have those symptoms regularly.

The biggest study of people with CH in the US was done in 2010-2011, using a survey form filled out by more than 1,000 people. Interestingly, in that report, when the authors asked about "migrainous related symptoms," 48% of the people with CH said they had some sensitivity to light during an attack, 42% sensitive to sound, 36% nausea, 17% vomiting. 3% reported having attacks on both sides. http://api.ning.com/files/pfE*ryEYQnrh22lBHWRvZQcE1ckYoPstVvGx1WGGJgf3xQvmQO3BetZjh2iRhqkewovTjOcHJU4rapbNW8EekDMrHdoNMAHA/ClusterHeadacheinUSA_Demographics_ClinicalCharacteristics_Triggers_SuicidalityandPersonalBurdenNov2011Headache.pdf Did you look at that oxygen page I referred you to? It tells you there how to buy a better regulator and mask. You want to do that right away. Your 10 lpm might work a little, but you really want to step up to better stuff quickly. You do have a tank, right -- not a concentrator? How big is the tank?Â

Grace, you also want to get started on the oxygen as soon as you sense an attack coming. Don't wait and hope it isn't an attack. Starting sooner means a much faster abort. Like Jeebs, I looked at some of your symptoms and wondered whether you have had a specific CH diagnosis. But some people with CH do have light sensitivity, and the meds you're on are CH meds (even though it's surprising, as Jeebs says, that you didn't get trex and your O2 system is so feeble). Don't think I've heard of caffeine as a trigger, though. I guess you could try an energy shot and see what happens, but a trigger's a trigger, so it's not completely unscary, as you say. If Jeebs has led you to want to learn more about busting, you should read the numbered files in the ClusterBuster Files section of this board. Here's a link to it: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?board=files Start with files #3,1, and 6. If you do decide to try busting, you will have to be five days past the end of your prednisone taper and also five days past your last dose of topirimate.

I'll give you a quick tip here, Grace, and others will fill in much more. 5 lpm oxygen is useless for everyone. Please read the CB oxygen page under the black and white MENU tab on the left side of this page and do what you can to use those conditions (15 lpm, non-rebreather mask, effective breathing strategy). Tell us more about your oxygen setup if it doesn't seem right to you (e.g., include a photo of your mask if you don't think you have a non-rebreather). I have to run, but you'll be in very good hands with others.

Hertz -- definitely a good name for someone with CH.

Well, I don't want to dispute you about the results of your own study (and if you don't want to engage further with me about this here, I completely understand -- just please don't feel that I'm attacking you; I'm just digging to try to get what I can from this), but here's what I'm reading. Patient A: PF for 11 days after first dose. No slapbacks. Patient B: PF for 18 days after first dose. No slapbacks. Patient A: PF 16 days after second dose. No slapbacks. Patient B: PF 35 days (except one day) after second dose. No slapbacks. Both patients: Essentially "in remission" for the remainder of the 60 days after the second or third dose (with continued dosing). [Of course, as you say, maybe Patient B's cycle just ended. But A has chronic CH.] I have already acknowledged the many limitations of this for projecting it to others. But these results are better than at least 90 percent of what I've seen here with busting. And I don't see how the results are attributable to more consistent dosing when the first dose, before any consistency or inconsistency has been established, resulted in such long-lasting PF time (in these two reported cases, if I have to say it again).   You would know this; I wouldn't. But assuming that many busters are using compounds that contain sufficient substances to eventually impact their CH, most are simply not getting results like the ones reported in this study. So, even though I can't contribute anything to looking into it, it does not seem clear to me that 5MeO-DALT should be assumed to be working in the same way as the more common busting agents. Maybe, as your discussion suggests (to me--you don't draw this conclusion), it's because the 5MeO-DALT is pure and the other busting agents might contain some chemicals that somehow work against CH treatment at the same time as other ingredients work toward it. Whatever . . . I'm just saying that if these results were reproducible, I think they could tell us something important about how these substances treat CH. Maybe the slapbacks that are commonly associated with some or all busting substances, which do not occur in this report, actually aren't signs that those substances are working (as we have assumed) and are just effects of those other chemicals in the busting substances. This alone would be valuable to know, it seems to me.

Hi Viking. Welcome. (I see Jeebs once again got in here ahead of me. A lot of overlap in this post of mine.) I'l just answer your two questions. First, oxygen will work. Whatever you were using 34 years ago is -- I hope -- not what you'll be getting today. Presumably you'll get tanks (not a concentrator), a regulator that goes up to at least 15 liters per minute, and a non-rebreather mask. Those are the basics. (I would call your O2 supplier and make sure that's what they're sending you. At least one big "M" tank and one smaller "E" tank, with appropriate regulators for each of them (fittings are different for M and E tanks).) I'm willing to bet that basic setup will work for you, but there are many options for even greater effectiveness (top-quality mask, higher-flow regulator, etc.) Strongly recommend you read the CB Oxygen Page that's under the black and white MENU tab on the left side of the page to be ready now and aware of future options. Lots of people have had the same experience (unusually long cycle) and the same related fear (becoming chronic). Of course, that happens, but it's very rare. Love to know if the Sprix works. Gotta admit that it sure doesn't seem likely. We could give you a whole bunch more things to try, and busting might be at the top of the list. To learn more about busting, go to the ClusterBuster Files section of this board (here: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?board=files) and look over the numbered files, or at least #s 1, 3, and 6.

I get that Lt2 isn't going to/can't participate in follow-up discussions, but looking at this again, I see that 5MeO-DALT seems to be a lot more effective -- in these two cases -- against CH than the usual busting agents. Many PF days immediately after one administration, and after each subsequent one. This is not the normal pattern for busting, except in very exceptional cases. No slapbacks, either, clearly. So this doesn't seem to me to be only a matter of more reliable dosing, or even of what Lt2 says, >>only an option to supplement current busting treatments.<< To the extent that these results are reproducible, 5MeO-DALT looks like a far better treatment than current busting substances. You just can't attribute these results to dosing reliability, because plenty of people take reliable doses of psilo or LSD ("reliable" in the sense that they get effects that tell them they were ingesting good stuff in sufficient quantity) without results that are in any way comparable to these. I've been burned by getting my hopes up for a lot of stuff (Acetium and Mamajuana, most recently) that didn't do what I hoped. So to the extent that I'm raving here, it's very strongly tempered by my full awareness that this is two people with no controls. But I wonder whether anyone has a theory about why it might be that this chemical seems to be a more effective CH treatment. And of course I wonder, where/how do I get some, today?

At first I thought, "Wow, what a doctor! Don't see many of those, on top of things like that!" Then I noticed that you're from Boston. Let me guess . . . Your doc's last name begins with the letter M? Anyway, is your O2 company delivering a 25lpm regulator? That would be very cool. Do you have what used to be called the O2ptimask (now called the "ClusterO2 Kit")? People love 'em. http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=o2ptimask