CHfather

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.)

To be clear here -- the bag should empty as you breathe in, and then refill as you hold the air in your lungs and exhale it. If it's not depleting at all, something is wrong.

I don't know what the price difference is, but I remember that Batch said he got all his D3 ingredients from Costco, the house brand, called Kirkland. The thing about O2 flow rate is that you want enough flowing into the reservoir bag that you can use your most effective breathing technique and never have to wait for the bag to fill. If 15 does that for you, you're fine, at least for now. If it doesn't, you can buy a regulator pretty inexpensively online. (But do check out that post from Batch, which I can't link you to because of some defect in the new message board.)

3. You might want to search for the phrase "red neck" using the search bar on the top right of the page. You can find a thread where Batch talks about a different approach to using O2 that he says is very effective -- and Batch knows what he's talking about. 4. You should seriously consider the D3 regimen, which you can read about in the ClusterBuster Files section of the board. It has been very effective as a preventive for many people. Probably strongly preferable to staying on verapamil. So glad to hear of your success so far and the great support you have!!!

Darren, I wrote you a fairly long reply that was in effect eaten by the new system. So I need to make this one short. 1. I can't answer your specific questions -- sorry! 2. Your O2 system is probably at far less than optimal efficiency. At least 15 lpm is pretty critical, and most people get substantially better results with 25+ lpm. This mask is better than the standard non-rebreather: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit

J, I still can't post an intrenal link, and I'm finding it verrrrrry frustrating. I a recent attempted psot, I tried to link someone to the thread where Batch describes the "redneck" O2 system, and also to the info about the D3 regimen. I got that big error message (403 error, or something like that). Going back to my attempted post, I could get it back up again -- but I couldn't delete the links I had created, so I had to start over. Can this please get fixed? I suppose it's fine to just tell people to go to the CB Files to read about D3, but in the other case I'd have to give about 4 instructions to help someone find the comment on the thread.

you are a treasure, dln. thank you.

There seem to be people who disagree with me about this, but my answer is yes/no. Yes to the important parts -- a demand valve attached to a DISS fitting will bypass the lpm settings on your regulator, and most importantly, yes, you will get as much O2 as you need every time you need it just by inhaling. This second part is not relevant to the "yesses" I just stated, but it's of interest to me, and I will be happy to be corrected if I am wrong. I think lpm stops being meaningful when you are using a demand valve. Think of the typical mask with a reservoir bag. The lpm determines how fast the bag gets filled, but when you breathe in, you are not breathing the O2 in at the rate it came into the bag (the lpm that your regulator is set to), you're breathing it in at whatever rate your inhalation creates. With a demand valve, the O2 is always available, so there's no bag to fill, and therefore no relevance to flow rate in that regard. Similarly, as with a bag-based mask, when you breathe in, you are breathing in at whatever "flow rate" your inhalation creates. Doesn't matter what it is; the oxygen will always be there for you.

Sumatriptan oral is very unlikely to help you. Nasal spray, a little better. Injections, most effective. BE SURE to check back with us if you go the injectable route. There are a lot of misgiving about triptans -- anecdotal and research evidence that they might cause rebound attacks and extend cycles. Have you tried quickly drinking down an energy shot, such as 5 Hour Energy, at the first sign of an attack? Often lessens the severity of the attack, and sometimes even aborts them. Some people say the colder they are, the better. Don't forget to check for monosodium glutamate in your foods as a trigger.

Lovely. Thanks for all the years of work that have made this possible, Bob.

A couple of years ago I posted about a person who thought that melatonin had made her nighttime attacks worse. I think one other person said they had had a similar experience. On the other hand, the young woman I originally posted about now takes melatonin pretty regularly when in cycle. She's not sure it helps, and she doesn't like being groggy in the morning, but she no longer thinks that it makes things worse. Pain in the butt to figure out, this CH. I gather that you are looking for the simplest and most benign way to treat your CH. I'd strongly urge you to go straight to oxygen, which will abort most attacks very quickly when properly set up and used, and has no side effects. You might well want to also see if increasing your verapamil dosage (and switching to non-ER, as amon10 says) is feasible. That usually has to be done slowly, so it might not be practicable, but dosage as high as 960mg/day can be needed during a cycle. Oxygen, D3, and verapamil are in my opinion the combination you want to try.

Ah, good catch amon. On the computer, second line down on top left, there's a tab for "online users."

Me, too. The Sewell poster on LSA. As you say, Geoff', may that wonderful man rest in peace. He answered every email question I sent him with kindness and compassion. Geoff' -- Did you do maintenance dosing to prevent cycles?

The only options I get from "Insert other media" are "insert existing attachment" and "insert image from URL." It doesn't seem to permit me to upload a file that exists on my computer.

During a cycle, people often need more verapamil than most doctors typically prescribe, even though the higher level -- as much as 960mg/day -- is medically acceptable.

J, three issues. First and most frustrating, I just composed a reply to TinaLi in which I allowed the system to embed the link I had created to the D3 regimen file in the "CB Files" section. When I clicked to post my reply, I got a big error message saying something about a "potentially dangerous condition" in my post, and my whole post had been erased! [follow-up edit: when i went to create a new reply to TinaLi and clicked on reply, it restored my previous content, and it posted okay as long as I didn't add a link to the D3 file] Second, I tried to attach a PDF to that same post, but found that I can only attach "existing attachments." I was presented with five versions of the "20 Questions" document that I guess I must have attached at a previous time. I didn't see any way to get into my files to select a new attachment. Third, I can't figure out a way to get to the main CB board. I had wanted to refer Tina to a document that is (or used to be) in the "Treatment" section of the main board, but I can't figure out how to get there from here. Clicking on "ClusterBusters" or "Home" just brought me back to the top of this board.