CHfather
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Posts posted by CHfather
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Sorry -- we keep overlapping. Coffee might help. Maybe you could also look for taurine capsules or powder to take with it -- though I'm not sure that will work fast enough. In her early stages, my daughter just ate straight coffee beans, which seemed to help a little.
Lots of things can, and sometimes do, go wrong between the writing of a prescription for O2 and getting a proper set-up. You have to have a high-flow regulator (at least up to 15lpm (liters per minute), a non-rebreather mask, and at least one large tank, if not more. In that oxygen file there are some tips about what to do regarding the prescription and the delivery and set-up. Keep us informed and we'll try to help you through the process.
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Mysti,
You shouldn't have a problem getting the D3 ingredients locally, at a pharmacy or even a grocery store that sells vitamins. Try to get calcium citrate if you can, but "regular" calcium (calcium carbonate) with magnesium and zinc is also fine (you just have to take it with food, whereas the citrate you can take without food). Energy drinks like RedBull are sold everywhere: you want to be sure that what you get is high in caffeine and taurine.
In the file I linked to regarding oxygen, there are some articles from major medical journals that you can print out regarding oxygen. Show them to your doctor. You probably should try to find a headache specialist (not just a neurologist) for your next level of treatment. If you're in the US, here's a list of doctors by state who have been recommended by people with CH: www.ouch-us.org/chgeneral/doctors.htm  (Curious thing: Your doc recognizing CH and then apparently giving you nothing for it except "lifestyle" advice. Of course, s/he doesn't have the headaches, and has no real idea how terrible they are. If you're not going to use busting, it seems to me you might as well get Imitrex (the injectable kind), which is very effective at stopping attacks but has unpleasant short- and long-term side effects, and causes rebound headaches, that busting doesn't have. If D3 and O2 (oxygen) and other things don't fully work for you -- although they should and I think they will -- you'll have the Imitrex. Hopefully (and very probably) you're episodic and not chronic, so you can get through this episode and then decide on a longer-term strategy.)
The exercise thing works for some people. Very vigorous exercise right as an attack begins. Others may have more to say about this. But oxygen is better, and the energy drinks are likely to work.
You're not rambling--you're very clear. And even if you were rambling, everyone here knows what it's like, the fear and panic and shock of having something like this happen to you. It will get better.
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We talked about some things I have to change (bye-bye smoking).There are some people here who say that stopping smoking made a big difference for them, and there many others who have quit and had no CH-related benefits from doing so. I suppose stopping smoking is always a good thing, but I would not say that it has to be a top priority in the short run, especially if it adds to your stress/distress. Much more important: Get oxygen. Try the energy drinks. Start the D3 or licorice root. Seriously consider busting.
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Sorry, snuffy, but it definitely sounds like your doctor isn't wrong. But folks here have learned to manage this thing and make it a whole lot less terrifying. Plus, you picked a good time to get CH
(
), because a reliable treatment of some sort, whether it's BOL-148 or a chip implant or some other amazing product of modern science, is right on the horizon, and also because people with CH have developed some treatments that work very, very well.Thank goodness, too, that you had a competent doctor who recognized CH right away. As you may have read here, so many people have been misdiagnosed and mistreated for so many years, with so much related, unnecessary suffering.
On to some things you can do . . . Â
Your doctor prescribed oxygen, I hope. It's the essential first-line abortive. If s/he didn't give you such a prescription, that's the very first thing you want to address. More info here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790
You might already have read that quickly drinking a RedBull or Monster or some other energy drink at the onset of a cluster headache can stop them or keep them from getting worse.
I strongly recommend that you begin either the simple, inexpensive vitamin D3 protocol that has helped many, many people quickly and also lastingly, or the licorice root treatment that also has proven very beneficial for many. Regarding the D3: You take about 10,000 international units per day of vitamin D3, taken with food; 2 or 3 calcium citrate tablets per day, with or without food (ideally, these tablets should also contain magnesium and zinc); and 3,000-5,000 mg per day of Omega 3 fish oil, with food. That's it, except that many people find that a glass or two of lemonade or limeade per day with meals increases the effectiveness. Many people start getting significant relief within a day or two. The levels I listed above are the "default" levels--you might wish to adjust according to your own tolerance. These are not "megadoses"--all are within standard recommended daily allowances except the D3, which is high but not inordinately so. To read a great deal more about the D3 regimen, you could wade through the following thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0  The discussion board where that thread is posted is a very good source of "non-busting" information.
You can read about the licorice root method here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068
If you can't use the "busting" method, then you can't -- and I think the other things I've listed here will surely keep your CH in check for now, or even permanently. But it's kind of too bad that you can't bust, because with no history of taking the kinds of pharmaceutical drugs that impede busting you'd probably get very good results from it. As is often said here, if the ingredients used for busting weren't unlawful (in varying degrees) it would surely be the first recommended form of treatment (after or along with oxygen) for CH. Excellent outcomes, no side effects.
People here have lots of other tips for coping with CH (for example, know what your "triggers" are -- alcohol, chocolate, and heat being some typical ones). Let us know what you're doing and how it's working and you'll get more advice.
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Chris, how are you doing (hoping maybe the "miserable" is an old entry)??? Haven't heard from you since your post ten days ago, unless I've missed something.
O2? D3? Anything good at all???
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i hope it's the D3 helping, too, christina! that would be cool.
(if you want to delete that re-post, there's a button to do so in the upper right corner of your post)
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Sounds like you're doing the D3 regimen correctly, Christina -- I really hope it helps you! If the calcium is not "calcium citrate," then you should take all these pills with food (not necessarily all at once, just with food whenever you take them). And you might remember that the popularizer of this D3 method also recommends a glass of lemonade or limeade with meals once or twice a day.
Here is a list of doctors in Arizona who have been recommended by people with CH. It's from the website www.ouch-us.org. I'm assuming that because these folks are reported to understand CH, they might be receptive to prescribing oxygen. I know it would mean more out-of-pocket $$, but maybe you could call and see whether they'll prescribe O2 for CH. The good thing about getting oxygen by prescription is that the oxygen supplier should have the right mask and regulator, so you don't have to wait to assemble the whole system the way you do if you're building it from welding-supply oxygen and buying your own regulator and mask (and maybe you avoid some initial out-of-pocket costs, too, but I'm not sure about that). If you do get a prescription, please be sure to read that oxygen page of mine that I've been referring you to, because there's still a lot that can go wrong . . . and often does, in terms of them bringing you the right equipment and setting it up properly. If you stay on top of the supplier from the beginning there's less chance of frustration.
Mesa:
Dr. George Wang
Phoenix:
Dr. Joseph R Cohen (DDS)
Southwest Pain Management Associates
Dr. James L. Frey
Barrow Neurological Institute
Dr. Alan Hamilton (PCP)
Scottsdale:
Dr. Constantine G. Moschonas
Four Peaks Neurology
Dr. Jeffrey D. Steier
Tempe:
Dr. Stephen D. Chakmakian PCP)
Hoping for the very best for you,
Jerry
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Good for you, Christina! If I'm remembering right, sumatriptan is Imitrex. I'm a little out of my depth here, but I'll take a shot at an answer and let smarter people correct me if necessary. Yes, it will interfere with busting -- you're supposed to detox from meds like this for five days before busting. Is it injectable, or pill form? I think it's widely believed here that the pill form is not very effective. I guess that it would better for you not to use it if your seeds will be there in less than five days.
If you don't mind, please tell us exactly what you're taking with the vitamins. Not everyone does this "right."
You will want to move ahead with the oxygen, too. While busting works, it almost never works instantly, so you'll want to take several seed doses spaced five days apart. It's likely that you'll still get some headaches during that time -- in fact, what are called "post-dose hits" can be pretty severe (usually only once or twice). They're viewed here as a sign that you are shaking things up after a dose: often they also come at different times than your normal headaches. I'm hoping that the vitamin protocol might help you, but being able to abort attacks with oxygen helps you stay "detoxed" from things that block busting.
I have some other thoughts, but gotta run right now. Again, congratulations on taking charge of this tough situation.
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I will also order the seeds. Anyone know the time frame on those? Do they need to grow?Christina, you can have seeds (rivea corymbosa) shipped overnight, or delivered within about 5 days or less. You can use them immediately. They're not expensive. Here are some vendors:
www.psychoactiveherbs.com
www.shamansgarden.com
If you do take zomig, though, you might have to "detox" from it for a few days, because it interferes with busting.
In section 1 of the oxygen file (http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790) there are links to two articles about oxygen for cluster headaches. If you have to go to the ER again, maybe you should have them printed out to bring with you. Or, Can you go back and show them to the docs there? Chances are they've never seen a cluster headache before and who knows but they might be receptive to this information. (Believe me, I understand how exhausted and frazzled you are, so I'm not saying it's easy to do any of these things, at all. Just trying to think of what might help.)
If you go the welding oxygen route, you'll also need to buy a regulator and a non-rebreather mask, which you can't get at the welding-oxygen place (many people order them new on eBay).  The total cost for the two of them would be about $60. We can show you in more detail how to do all this -- I just wanted you to know that there's more to it, practically and financially, than a trip to a welding-supply store. But since oxygen aborts a CH headache within 15 minutes for 90-plus percent of people, the investment and hassle would almost certainly be worth it for you.
Nobody minds any questions you ask here, and as you can see there are lots of people who will do their best to help you.
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Oxygen is essential. Busting works. RedBull or some other energy drink high in caffeine and taurine helps many people if it is drunk rapidly at the onset of an attack. Inhaling cold air from an air conditioner is a poor but sometimes effective short-term substitute for oxygen from tanks with a non-rebreather mask. Here's a more direct link about using LSA (seeds) as a busting method (the other files there by TommyD are also good): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974
The link Jeff gave you is very good for finding seed suppliers and other resources.
I'd urge you to consider beginning right now the simple, inexpensive vitamin D3 protocol that has helped many, many people quickly and also lastingly. Take about 10,000 international units per day of vitamin D3, taken with food; 2 or 3 calcium citrate tablets per day, with or without food (ideally, these tablets should also contain magnesium and zinc); and 3,000-5,000 mg per day of Omega 3 fish oil, with food. You can find these ingredients in a pharmacy or drug store. Many people find that a glass or two of lemonade or limeade per day with meals increases the effectiveness. Many people start getting significant relief within a day or two. The levels I listed above are the "default" levels--you might wish to adjust according to your own tolerance. These are not "megadoses"--all are within standard recommended daily allowances except the D3, which is high but not inordinately so. To read a great deal more about the D3 regimen, you could wade through the following thread: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0
Or, you could try the licorice root method discussed here. Depending on where you live, the licorice root extract might be harder to find than the ingredients for the vitamin D3 protocol. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068
Everyone here has been where you are, Christina, or they've had a loved one who was suffering as you are. Today those same people are living lives without pain, or with far less frequent and far less severe pain. Stick in here with us and you'll be one of those people, too.
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Wonderful!
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Thanks, everyone! (Interesting, kaboom! The phrase "great minds" pops into my head, but I can only say that for your sake I sure hope yours is a lot greater than mine.)
 Ting, would you mind saying a little more about what you do with the light therapy (how you use it; what you use)? I could ask you this in a PM, but maybe others will be interested, too.I use light therapy almost everyday.Thanks,
Jerry
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Gosh, I now see from some further research that there was a time, back in the 1990s, when Dr. Kudrow (CH sufferer, HA specialist, father (grandfather??) of Lisa) actually was thinking about light therapy/resetting circadian rhythms as a treatment for CH. Apparently it didn't go anywhere . . . so now I'm very curious to know whether that's because it just didn't really work to treat CH, or maybe (consistent with my fears) that it somehow made some CH worse, or maybe it was just supplanted by more effective things. I'm remembering that someone here knows Dr. Kudrow -- Do you think we could ask him?
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My daughter has awful sleep problems, which we are attributing to her dysfunctional hypothalamus (though there might be other factors). I've been reading about "bright light" and "blue light" sleep therapies that are used to re-set a person's circadian rhythms. Apparently this is a legitimate therapy, since it's mentioned at sites like the Mayo Clinic's and the Chronobiology Lab at a big New York Hospital. Our fear about trying it is that messing with her brain's already-screwed-up (or maybe already CH-causing) relationship to daily and seasonal light patterns might trigger something bad for her. She's been PF for quite a while now (thank you!), but the sleep thing is really messing up her life.
Any experiences or general cautions related to this type of therapy? (Yes, I saw that interesting recent study posted by Kyle, suggesting the hypothalamus might not be involved in CH after all, but that's not enough to make me throw caution to the winds in this regard.)
Thanks!
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Sandy, we're used to tales of Bob's exploits--and I can speak for myself to say I never get tired of hearing about them! He's an amazing inspiration for me and so many, many others. Glad "we" were able to share him with you.
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  leslie, i did a small amount of research on the citrate/carbonate issue a while back. in general, i think "batch" is saying (over at ch.com), "this is what worked for me, so why not do it this way?" and that's pretty much the way i've approached it, too.  from my research, there doesn't seem to be a major difference in absorption of calcium whether it's in citrate form or carbonate form, but -- as you suggest -- it seems that the citrate is easier on the tummy and can be taken without accompanying food. it could be, also, that the citrate is more often blended with magnesium and zinc (and often a small amount of d3), and someone (batch, i guess) thinks those ingredients are also important -- but i don't know that for sure.CH Father,you are so right about that site being hard to wade through. Do you know why calcium citrate is recommended? And why not calcium carbonate? Is it related to stomach issues?
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Yan, according to Batch's specifications, you want to be taking roughly 10,000 IU of D3 each day (with food), and I'd say the chocolate version is not a great idea, especially since chocolate is a CH trigger for a lot of folks. Here in the US, one can get D3 almost anywhere -- grocery stores, pharmacies, etc.--and I'm sure you can also find it on the internet. He suggests a glass of lemonade twice a day with meals. This thread is hard to wade through, but it might at least be worth it to you to skim it for any important information: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416/0
Here's a site that I'm pretty sure is in Canada: http://www.tranceplants.net/
(One person here has said she did not think their seeds were very effective for her.) The cost is low enough that if they'll ship before 8/5 (which is the way it sounds) you might just order 100 or 200 now -- but you do still have the detoxing to go through, so maybe you can wait. Couldn't you order from a US-based supplier, such as iamshaman.com (I'm just asking -- don't know the technicalities)?
I hope some of this is helpful--I'm sorry your situation is so tough. I take it there's some reason you can't have oxygen at work.
Jerry
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Welcome, Yan! Sorry for what you are going through, and hoping we can help you. That's a very tough thing, going from episodic to what seems more like chronic.
I can assure you that most people here are not "into drugs," and most are able to arrange their busting strategies so there is little or no psychedelic effect--only a cessation of cluster attacks. And many are much older than you: "Hipshot" (Dan), for example, is about
97.Â
 I think it's safe to say that seeds, such as rivea corymbosa seeds (RC), can almost always be used with virtually no psychedelic effects. You can learn more about how to use seeds here http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974and also in other files by TommyD in the "Clusterbuster files" section of this board. Ask questions -- plenty of very kind and knowledgeable folks here will help answer them.
I suppose your biggest challenge will be "detoxing" from your meds, some of which interfere with the effectiveness of "busting" with psychedelics. So let's be sure you're giving the vitamin D3 regimen it's best shot. You say "maybe the vitamin D I'm using is not the right one." Is it D3 -- that's what the regimen calls for. You can find it almost anyplace, but here's a list provided by "Batch" over at ch.com:
>>>>>>>>>>>>I buy these items at Costco. Sam's Club has some of these vitamins and minerals under Member's Mark label. You can buy the Kirkland brand over the Internet from Amazon or go to Puritan's Pride web site. They carry the same items.
Costco has the best deal on the 5,000 IU vitamin D3 softgels: $6.99 after $2 OFF Trunature® Vitamin D3 5000 IU Extra-strength 500 Softgels < 3 cents/day 20 cents/week
Sam's Club: Member's Mark® Vitamin D-3 5000 IU - 400 softgels $10.68 < 6 cents/day, <38 cents/week
Puritan's Pride SUNVITE™ MAXIMUM STRENGTH VITAMIN D (D-3) 5000 IU: 500 softgels for $14 <6 cents/day, <40 cents/week<<<<<
And of course the D3 protocol also calls for calcium citrate, Omega-3 fish oil, and maybe a couple of glasses of lemonade or limeade each day. I trust you've also done that.
Also, in terms of being able to detox, there are some oxygen strategies, sometimes referred to as "power using," that seem to work quicker and more lastingly than the 15lpm flow rate and the standard non-rebreather mask. If you're interested, ask about these and someone will advise you. Even at 15, many people say that the O2ptimask is more effective: http://www.clusterheadaches.com/khxc/index.php?app=ccp0&ns=catshow&ref=LifeGas
As I say -- ask questions. In one way or another, we're all in this together, we all learn from each other, and we all care about each other.
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enjoy, wade, and congratulations for taking control. some people suggest a bust between cycles, maybe three months from now if you're on the fairly typical twice-a-year schedule, and also to be sure to bust at the first sign of a new cycle (some people here have regretted waiting too long). i would also recommend that you do the maintenance-level D3 program: 5 IU of D3; couple of calcium citrate tablets; and 2-4 mg of fish oil. probably can't hurt, and lots of evidence that it helps.
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Jeff/Lynn, a relatively easy solution to the falling-asleep-and-still-inhaling-O2 problem is to cut the strap off the back of your mask and hold it on with your hand while you're using it.
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I will bookmark those Ebay links for when I figure out which type of oxygen tank I will get.I hope you're not going to wait too long to get oxygen--can't be repeated often enough that it's a complete game-changer for most people with CH.
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Lynn, I notice that you asked before about whether shrooms are legal. No. Unlike RC seeds, shrooms are illegal to buy, sell, or possess. There's a lot of frustration and anger here about that, properly so, but it's the case.
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You can order a new regulator from eBay for about $25: http://shop.ebay.com/i.html?_nkw=regulator+15lpm&_sacat=0&_odkw=non-rebreather+mask&_osacat=0&_trksid=p3286.c0.m270.l1313
And a non-rebreather mask for about $15: http://shop.ebay.com/i.html?_nkw=non-rebreather+mask&_sacat=0&_odkw=nonrebreather+mask&_osacat=0&_trksid=p3286.c0.m270.l1313
Maybe there are lower prices elsewhere, but probably not significantly lower. THERE ARE DIFFERENT TYPES OF REGULATORS FOR DIFFERENT TYPES OF OXYGEN TANKS (basically, two different types), so you have to know what type of tank you are getting before you buy your regulator. You want at least one large tank, and maybe one smaller one for portability (the big ones are heavy). You might go through a lot of O2, so you have to weigh the trade-off between what you're paying (one tank or two, plus the smaller one) and not being stuck without oxygen.
Also, while the basic non-rebreather mask will probably work for you, many people think the O2ptimask is well worth the higher cost ($27.50). You can also buy these in different sizes to be sure it fits your face properly (not sure if size options are available at eBay). http://www.clusterheadaches.com/khxc/ Â
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Another of your usual great reminders, Ting. Thank you.
Has your daughter returned yet, and seen her new room?
And I have the same problem with uploading images--would love to hear any advice about that.
help with welder's oxygen
in General Board
Posted · Report reply
christina, you're going to have to get advice from someone who has used welding tanks. i'm afraid, only as a suspicion, that the oxygen tanks you found on craigslist are for scuba diving, which would be of no use to you, i don't think. but i'm just not sure, and i don't know whether i'd trust someone's used tanks.
you've been working so hard at this, i really hope some help will arrive. i know you had said you are in the phoenix area. there seem to be a lot of welding oxygen places there, which can be found by entering [welding supplies phoenix] (without the brackets) into google.  this link might take you there. http://www.google.com/#hl=en&sugexp=bvre&cp=24&gs_id=1x&xhr=t&q=welding+supplies+phoenix+az&qe=d2VsZGluZyBzdXBwbGllcyBwaG9lbml4&qesig=mTEPNtT7D_xNwxouBXZ3-w&pkc=AFgZ2tlBMQMTReTfAPzqX7MujLvHzE_gXQ0EUsYMeQuM4XeINgWuiGert7lHsEHv29YRSv2_kAfhNeqR6UgEHIuu_2zUagzEVw&pf=p&sclient=psy&safe=off&source=hp&pbx=1&oq=welding+supplies+phoenix&aq=0&aqi=g2g-v2&aql=f&gs_sm=&gs_upl=&bav=on.2,or.r_gc.r_pw.&fp=7caaed5eb0414d97&biw=991&bih=452
from what i have read, the answer to the question "what do you want it for" should be "welding" and the answer to "do you want acetelyne, too?" is "no." i completely screwed up when i was desperately trying to get welding O2 for my daughter. i asked for a 15lpm regulator, too, and the guy just told me to go away.
yes, if you have a non-rebreather mask (with tubing), then all you'll need is the regulator
(i just got a nice PM from a fellow who had been encouraged to try the D3. he said it had taken a while, but he was now PF (and he was chronic). so i hope you're sticking with that.)