CHfather

I guess I would suggest that amount of pain is a diagnostic criterion, but that you ought to treat it as CH (or perhaps as hemicrania continua -- see below) and see what happens. You don't describe the nature of your attacks. Do you have head pain all day every day, or do you get some number of attacks each day? If the latter, how long do they typically last? Are you able to sit or lay still during them, or do you need to pace or at least rock back and forth? Do you think the Aleve or iboprofen, or whatever you are taking now, actually helps them? What are you using now? Surely someone must have diagnosed/misdiagnosed them as migraine and given you something, such as Imitrex? If you have distinct attacks that last some number of minutes of hours, can you get oxygen to try? Oxygen is effective for a very large percentage of people with CH, but not effective for most people with most other headache conditions. Have you ever taken indomethacin? That works to treat a CH "lookalike" condition, hemicrania continua (HC), but it doesn't work (hardly ever) for CH. Also, HC pain is generally less severe than CH pain, with occasional episodes where the pain worsens. Sounds like this is a possibility for you, and it is easily diagnosed through your response to indomethacin. Here's a link to some HC information: https://www.migrainetrust.org/about-migraine/types-of-migraine/other-headache-disorders/hemicrania-continua/

Interesting that they're still using cocaine. That was the original substance used, but for quite a while it's been primarily lidocaine. Would very strongly urge your son to start now on the vitamin D3 regimen that has helped hundreds of people with CH. You can read about it in the ClusterBuster Files section of this board.

Maybe there will be an answer here to this question. I am nearly certain that there is a Portland-area group. You might try asking at the Facebook page of the group "Cluster Headaches." It's a membership group so you might have to wait a while before being accepted (I don't know what "a while" is). Your best bet might be to directly PM 1961mom, a member here who lives in the Portland area: https://clusterbusters.org/forums/user/17179-1961mom

Excellent advice from urs and amon. As they say, OXYGEN, OXYGEN, OXYGEN. I think urs meant to say "up to 1000mg/day" regarding the verapamil (or maybe he meant up to 1 gram) I assume the metoclopramide that your doctor prescribed is to protect your gut from the naproxen. Since the naproxen won't help anyway, I think you might consider dropping those two, unless the metoclopramide is for some other condition. What form is the sumatriptan in -- pill; nasal spray; injection? You could try melatonin at night, starting at about 9 mg and working up if necessary to find an effective and acceptable dosage. You could try an energy shot, such as 5-Hour Energy, at the first sign of an attack. That works for many people to reduce or even abort an attack. Several people have found that putting their feet in a bathtub with water that's as hot as they can stand will make an attack more tolerable. Busting could well be the best thing for you, as it has been for so many, but unless you can get your hands on a busting substance right away and you've been off the sumatriptan for 5 days, you need something to get you by. That something is primarily OXYGEN.

You did it.

The D3 regimen is described in the ClusterBuster Files section in some detail. I see that the switch to the new board has messed up some of the formatting, but I think it's still readable. Here are the ingredients (hope the formatting holds when I post it). If you are taking verapamil, take it 6-8 hours apart from when you take the calcium supplements. Read more here: http://www.vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10,000+IU+of+Vitamin+D+in+80+percent+of+people Supplement Dose Vitamin D3 (Cholecalciferol) 10,000 IU/day (Adjust as needed to keep serum 25(OH)D near 80 ng/mL) Omega 3 Fish Oil 1000 to 2400 mg/day (Minimum of EPA 360 mg/day, DHA 240 mg/day) Calcium * 220 to 500 mg/day Magnesium 400 - 800 mg/day (magnesium chloride, glycinate or oxide) Vitamin K2 (MK-4 & MK-7) MK-4 1000 mcg/day, MK-7 200 mcg/day (MK-7 preferred due to half-life) Vitamin A (Retinol) * 900 mcg (3,000 IU) for men, 700 mcg (2,333 IU) for women (Maximum Dose) Vitamin B 50 3 month course, after that, the 7 B vitamins in the Mature Multi will be sufficient Zinc * 10 mg/day Boron * 1 mg/day minimum, 3 mg/day optimum Regarding detox, you can read about it, with some inaccuracies, at the file called "Playing Well Together" in the ClusterBuster Files section. Because there are some inaccuracies there, I would suggest that you post your questions in the "Share Your Busting Stories" section of the board. Many people can help you if you describe all meds you are now taking. In essence, you want to be off most pharma meds, particularly sumatriptans, for five days. Verapamil at lower levels doesn't seem to block busting. About other things, such as steroids or topirimate, I think there are still open questions.

Sorry you are taking all that stuff. The side effects must be unpleasant. (It's my very vague understanding that sometimes lamotrigine increases the side effects of divalproex.) It's good to ask your neurologist about the full D3 regimen. If there is a specific interaction with your current meds that he is concerned about, that is important to know; if he freaks out about the large amounts of d3 just in general, as some doctors do, I think you'll have to make the decision on your own. As far as I know, no one has had bad effects from that much D3, as long as (1) they are taking the full regimen, and (2) they have blood tests to make sure that their D levels don't eventually get too high. You'd want to take the calcium part of the D3 regimen 6-8 hours apart from verapamil (because verap is a calcium channel blocker). You will probably have to order the mask separately. If your doctor is highly sympathetic and if it's possible in Canada, you might try asking for a demand valve system for your O2. If you want to order a mask now, it's at http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit We just had a report from a person having very good results with another approach to using oxygen. If you type the phrase "red neck" (in quotes) into the search bar at the top of the page you will see posts about that method, which doesn't require any fancy equipment. We have found that it's not necessary to be completely off of verapamil in order for busting to be effective, but I don't think anyone knows what applies at 960 mg/day. Sounds like your doctor is really trying to help you and more or less knows what he's doing (as much as anyone does when treating CH). If you think busting might be something you want to try, I guess you'd have to look at all the meds you're taking, and I'm lost there. I can say that for some people, having a good O2 system, having the D3 regimen kick in, and using energy shots makes it easier to get off the necessary meds enough to try busting. (And it's also not completely unusual that when people stop the triptans, their headaches become less bad, probably because of the rebound effects you have mentioned.)

Many people who come here really desperate find that "busting" (taking psychedelic substances, sometimes in doses small enough that they do not cause a "trip") is the answer to their prayers. You can read about busting in the numbered files in the "ClusterBuster Files" section. What might be the hard part for you is that you should stop taking triptans for five days before busting. We can discuss this more if you decide that you want to try busting. "Truffles" from the Netherlands have proven to be quite effective for busting. Busting has helped many people with migraines, too. Meanwhile . . . Do you have a preventive medication? Usually that's a calcium channel blocker called verapamil in the US -- and usually it has to be taken at higher levels than many doctors prescribe in order for it to be effective. Have you tried quickly drinking an energy shot such as 5-Hour Energy at the first sign of an attack? If you are able to get melatonin (it's available openly here, but I think only by prescription in Europe), 9 mg at night, or more, can be very helpful. Magnesium can help (that is mentioned in Bob's paper; I'm not sure of the dosage). Some people find that if they stay on the oxygen after an attack has been stopped, for about 10 minutes, it can hold off future attacks. Oxygen when used in conventional ways is most effective if the flow rate is at least 15 liters per minutes, and if you have a mask that is made for people with CH. You probably didn't have either of those things the last time you tried it. There is also another method for using oxygen that we can tell you about if you get that prescription. Finally, I would suggest that you look at the list of "triggers" in the ClusterBuster Files section. It is possible that you might notice something there that is making your situation worse.

I read elsewhere that you were at Headache on the Hill this week. Thank you! And thanks to any others from this site (Bob, of course, as always) who also made the journey.

:-) I wonder how many people here have actually tried Batch's method. I think you are the first to report on having done it. Thrilled that it worked so well (plus the energy shot).

OXYGEN!!!! It's not even a question. You must have it. The vitamin D3 regimen described in the ClusterBuster Files section has helped hundreds of people.

I can tell you with 99% certainty that your blood test will show that you are far below the D level that is required to affect CH. With 81.3% certainty, I can say that you're below even the medical standard level for D. It would be wrong for me to advise you to start the "loading" process that Batch describes, but I guess I can suggest that you seriously consider doing that. If you can't get that blood test soon from your gp, you can pay something like $45 to get an online prescription to have a D test from a local blood lab.

clusterb, without knowing your specific situation regarding access to O2 and its cost, I'll just mention that if you put the phrase "red neck" into the search bar at the top right of the page, you'll find posts with Batch's suggested method for using O2, which uses far less than the conventional method, and which he says is also just more effective for treating attacks. Batch has led to many advances in O2 use and other things (D3), so it might be worth taking a look at what he says

We have had a couple of people here over the years who used caffeine pills (plus taurine pills). I have to admit that I don't recall whether they took them when an attack came on -- which seems to me like it would be too slow-acting -- or somehow used them preventively. Some people do find that caffeine alone -- a strong cup of coffee, for example -- will cut down an attack. The conferences always have great content, and hanging with other folks with CH is very moving. (I say this latter part only from observation, since I don't have CH myself -- my daughter does.) When my daughter was getting three- and four-hour attacks that were not controlled by O2 and energy beverages, triptan injections were a lifesaver (particularly with the split doses, which had a lot fewer immediate side effects). Since it's now widely believed that triptans can cause rebounds and extend cycles, I suppose it's a tradeoff that each person has to decide about.

jon019 wrote: >> Re energy drinks: Red Bull actually has a relatively low level of caffeine and taurine than other brands and is ridiculously expensive (yur paying for adverts). Try Monster or Wired or any other brand with at least 100 mg caffeine and at least 1000 mg taurine. Grocery outlet stores carry 16 oz (good for 2 hits) for a buck a can. <<< I feel like I should have some pre-written text about energy shots vs energy drinks, because I don't have the "energy" to give a full statement about them each time I mention them. Those little 2-ounce shots, such as 5-Hour Energy, actually have more caffeine and taurine (total, not per ounce) than the most of the bigger energy drinks. Regular Strength 5-Hour has 200 mg of caffeine; Extra Strength has 230. By comparison, there are many sizes and types of Monster drinks, but even the 16-ounce ones have no more than 160 total mg of caffeine. So in my view the 5-Hour Energy, which can be chugged very fast, is considerably more likely to be helpful. An 8-ounce Red Bull has 80mg, so an Extra Strength 5-Hour is the same as three of those. I'm not advocating for 5-Hour in particular, just saying that many people are surprised by the relative caffeine levels of shots vs. drinks. jon' -- I copied and pasted your text up above, and it came out with that big line spacing you were mentioning. When I hit "delete" at the end of each line, it came out as it is above. So seems that somehow your system is adding carriage returns at the ends of lines.

These are the only two questions I can answer with any confidence. I suppose Dr. Peter Goadsby, at the University of California - San Francisco Medical Center, would be considered a leading neurologist regarding CH. Whether he knows anything you can't learn here at at ch.com is another question. If you go to the homepage -- clusterbusters.org -- you'll see an item called "Resources" under the "Cluster Headaches" menu item. There's a list there of doctors recommended by folks with CH. Yes, some people do find that O2 stops working and then works again. I don't think anyone can say why, except that at least in some cases it seems that other treatments (D3, busting) seem to cause the O2 to work better. Is your O2 system optimized -- high-flow regulator; top-quality mask?? If you use the search bar at the top of the page with the words "red neck" you will see a suggested alternative method from Batch, a guy who knows what he's talking about. Couple of other brief thoughts. More than a few people find that they need as much as 960 mg/day of verapamil to get results when they are in cycle. Have you tried melatonin at night (starting at 9mg and going up as needed)? Energy shot/energy drink at first sign of an attack, as in while you are getting on the oxygen?

I would venture that for most people their earliest cycles were often shorter and the pain was more manageable. Maybe I'm wrong about that; it's just my sense from what I've seen and read. So it is very possible that your cycle was ramping down on its own. Since it's also very possible that the D3 helped, you should definitely continue it. It's rare, but not unheard of, for the D3 to kick in within a week. (It's very much unheard of for Tylenol to help, so I'm going to guess that it isn't actually helping.) Your doctor prescribed no meds? Do you know what to insist on from the neurologist? First of all, OXYGEN. Absolutely first -- 99% of people with CH will tell you that. Yet half of neurologists fail to prescribe it, even after diagnosing CH. Then you might want an additional abortive, which would be injectable sumatriptan. Not pills, and probably not nasal spray: injectable. And maybe a preventive, which is typically verapamil. Since you don't know what form your cycles are going to take -- could be every six months, might not return for years -- that will presumably be taken into account. So even if you don't get anything right now if your cycle seems to have ended, you need to know that this specific neurologist is someone you can confidently turn to when/if your next cycle arrives. There's a lot more for you to know, so you should continue reading as much as you can here. Please also read about busting, in the numbered files in the ClusterBuster Files section. At the very least, it's an option you should have in mind when your next cycle rolls around. Many people will tell you it's the best way to manage CH, and it's why this specific website/message board were created.

Great news!! Hard for me to think of why you wouldn't take at least one more dose for the sake of clearing it all out. Maybe scientific curiosity, but I think most folks would choose pain-free over science. Thank you for the detail in your report. 14 seeds and 17 seeds would these days be considered by many to be very low doses, so it's good to have these data points.

Welcome, Michelle. If they gave you a standard non-rebreather mask, it will have a circle of open holes on one side or both sides (often one side is open and the other has a white or gray gasket in it). Cover any of those open holes as you inhale, so you don't mix room air with the O2 (you can cover them with a thumb, or you can just tape them shut). Cut the strap off your mask, so you have no chance of falling asleep with the mask on. Consider quickly downing an energy shot, such as 5-Hour Energy, just before you start on the O2. (Or can try a cup of coffee or some other high-caffeine beverage.) When you breathe in, hold the air in your lungs for a while before you exhale. Some doctors recommend looking down toward your feet as you breathe. There's more . . . so let us know how that goes. When you say "two tanks," is one big and one small? Both big? Both small? ("Big" is 3 feet tall or taller; "small" is 2 feet tall or smaller.) As amon' says, try the D3. It's described in the ClusterBuster Files section. You have no pharma preventive (typically verapamil is tried first) or abortive (injectable sumatriptan)? Many folks here aren't big on the pharmas, but some do find that verapamil will end a cycle and sumatriptan will almost always stop a breakout attack. Have you considered busting????? (Read the numbered files in the Files section.)

Andrew, you are right to seriously consider busting, and THMH has given you what you need to know: read the numbered files in the Files section and follow the process he has described. If you have not done the "Vitamin D3" regimen you should start it. It has made a very big difference for many, many people. You can also read about that in the Files section. (I realize that people in your situation are inclined to eventually give up on treatments, and surely you might wonder how some vitamins will help you when powerful medicines have not helped. But many people in that very situation have achieved very good results with the D3 regimen. You have to follow it to the letter. We find often that when people say they have "tried everything," they have missed some core elements, most particularly oxygen. Have you used oxygen? If so, how was it delivered? Because often people who did not get relief from oxygen were using ineffective delivery systems -- the regulator did not provide a high-enough flow rate; the mask was shoddy or used wrong; the O2 came from a concentrator, not from a tank/cylinder/cannister. No matter what success you have with busting and D3, effective oxygen can be a life-changer. If you have actually used everything pharmaceutical that typically helps with CH (I would include sumatriptan/Imigran, corticosteroids, and verapamil at the top of that list) and none of it helps you, and not even ketamine helps you, I have to say that I would also test a different diagnosis, such as paroxysmal hemicrania or hemicrania continua. Those things look a lot like cluster headaches -- but they are effectively treated with a single medication, indomethacin. So if indomethacin is not on the list of things you have tried, it would be worth a shot.

Brooke, as you are clearly all too aware, there's not likely to be a lot the neurologist can offer. From time to time, someone posts here about a pharma treatment that worked out great for them (the most recent, in my recollection, being Seroquel*), so it's not hopeless to try. I'm not going back over this thread, so I'm asking questions that might already be answered: Is he doing the D3 regimen? Taking melatonin at night? Trying energy shots? Is his O2 system optimized with a high-flow regulator (25 lpm or more) and a good quality mask? If he's using a standard non-rebreather mask, is he covering the open holes in it, with tape or with his thumb, so that no room air is getting in as he inhales? Does he have tanks/cylinders of oxygen, not a machine that makes O2 from room air? I recall that he has trex. Is he using it? Is he splitting the injections so he uses only 2 or 3mg at a time? Has he seriously considered busting (which you can read about in the numbered files in the ClusterBuster Files section)? This place isn't called ClusterBusters for no reason. You don't have to answer any of those questions, of course, but if you have any questions, please ask! * You can find the threads about Seroquel by typing that word into the search bar at the top of the page. I'm not vouching for it; just giving an example of something that seemed to work for somebody. Topamax is another; gabapentin is another; lithium is another . . . In my view, the side effects and unreliability of those things argue for doing the D3, upgrading the oxygen system, trying the other non-pharma methods, and very seriously considering busting. Just saying that down the pharma road are many things that have worked to some extent, for some time, for some people, and down the non-pharma road are many things that have worked more effectively for longer periods with far fewer side effects.

Reading at the site that Denny posted, I see that it appears that they give you a prescription you can bring to a LabCorp site to get tested. The price seems reasonable enough, and some of the reviews say the results can be obtained very quickly. Thanks, Denny!!!!

There is a list here of recommended doctors for CH: https://clusterbusters.org/cluster-resources/ It's not updated or complete, but if you can find someone on this list, you will be better off. Many/most neurologists don't recognize CH, and when they do, many/most make terrible prescriptions (not prescribing oxygen, for example). Some of his symptoms sound like they might be hemicrania: "Hemicrania continua is characterized as a continuous, strictly unilateral headache of mild to moderate intensity with superimposed exacerbations of more severe pain. During these exacerbations, one or more autonomic symptoms (ptosis, conjunctival injection, lacrimation, and nasal congestion) occur ipsilateral to the pain. Many patients report a foreign body sensation, like an eyelash or a piece of sand, in the eye ipsilateral to the pain. This headache is defined by its absolute response to therapeutic doses of indomethacin." Here's something I'm absolutely not sure about. This is all speculative. I think you might be able to contact a local blood test provider and get a vitamin D test done. You could look up "blood test provider" on google and call one. They might not take insurance, but the cost might not be much more than the online D test, and the results would be considerably quicker (you're looking at at least a couple of weeks to get the online test, return it, and get the results) and more reliable. [EDIT: Looking back at Denny's post, I see that the process he's describing is potentially quicker than the one I was thinking of, where you order the kit online, it gets mailed to you, you put some blood on it, mail it back, and wait for results. But maybe what I'm suggesting would skip the middle man.] My daughter has CH. It is very difficult to deal with that as a parent. THANK YOU for doing what you are doing!!

Regulator: http://www.harborfreight.com/oxygen-regulator-94846.html Basic mask: https://www.amazon.com/Non-Rebreather-Mask-w-Vent-Adult/dp/B00B1FJNXS/ref=sr_1_1_a_it?ie=UTF8&qid=1486486017&sr=8-1&keywords=non-rebreather+oxygen+mask Better mask: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

First, you need to know that it's not likely to help you if you take it less than five days after an imitrex injection. This is common belief here -- maybe you will turn out to have a different experience. Also, taking a "very small dosage" once probably won't help. Read the numbered files in the ClusterBuster Files section of this board to understand the standard protocol, but basically it's (1) 5 days off imitrex; (2) a recommended dose of roughly 1.5g of dried psilocybin mushrooms, taken every five days. If you're going to do the D3 regimen, you should do the whole thing. Read about it in the ClusterBuster Files section. Take the calcium about 8 hours away from the verapamil. Also, if you are going to continue with imitrex, you should read the file, "Extending Imitrex," which is also in the ClusterBuster Files section. You can use half to a third as much imitrex to stop each attack. (Many people are convinced that imitrex/sumatriptans extend CH cycles and create substantial rebound attacks.)