CHfather

Your doctor, unless he or she is very very committed to treating CH, won't know anything about the D3 regimen. And if s/he sees the amounts of D3 involved, s/he will probably say that it's way too much. Testing of vitamin D levels is part of any standard blood test. I'd bet ten to one that yours is low. I'd recommend that you ask your doctor for a blood test, discuss the D3 regimen with him/her if you want, but keep an open mind, read the information, consider what the members here have to say. I didn't give you a link to the D3 regimen the other day because it had mysteriously been moved and I couldn't find it. Here it is: https://clusterbusters.org/forums/topic/1308-d3-regimen/ The thing you want most from your doctor is oxygen. Most non-neurologists don't even know about O2, even though it is the #1 medically recommended treatment for CH -- effective and no side effects! You can find info about oxygen here: https://clusterbusters.org/oxygen-information/ Sadly, I would be willing to bet, maybe not at the 10-to-1 odds I was offering regarding your D level but at least at 5-to-1, that your doc won't prescribe it, and will give you some BS reason why not. (The real reason that most docs don't prescribe it, in my opinion, is that they're afraid: they don't have any patients who need O2 at this level so they have no experience with it, and most don't even know how to write a prescription for O2 for CH.) Maybe your doc will prescribe Imitrex; maybe it will be the injectable kind (not pills, which don't work at all; or nasal spray, which sometimes works). That's an easy prescription to write -- and it does stop your attacks. But it's bad for you, and you can't take too much of it, and it's EXPENSIVE. Yep -- drinking is far and away the #1 trigger. It's great that you can get so much relief "just" by stopping. Please be sure to check back. We're just dealing with the basics right now, but there is more that will be helpful once we see where things settle.

Again, thanks to all. Something called Theraspecs has been recommended for her (they get good reviews from migraineurs, at least insofar as online reviews can be trusted). We'll probably get a pair and see what happens.

Thanks, you two. No, J, no mood-related meds.

I mentioned in an earlier post that my daughter was finding herself to be highly sensitive to natural light. She has found that if she stays away from sunlight (a miserable enough way to live, on top of having cluster attacks) she is practically painfree (we recently thought her cycle was nearly over), but if she sleeps in her bedroom where some natural light comes in she gets hit not long after waking up, and if she goes outside in daylight she gets bad attacks within an hour or two. Multiple attacks. We have checked carefully for other possible triggers and just don't see any. She has a couple of good days, goes outside in the afternoon to walk her dog, and wham gets hits that are sometimes resistant to O2 and energy shots, which usually work for her. Have others experienced this? Any suggested explanations? I realize it might be time to see a neurologist, but aside from the very long wait to get to see one, not being able to go outside in daylight severely limits her options.

Grumpy', just checking: Do you have oxygen? Or any kind of abortive, from energy drinks, which help many people, to injectable (or nasal) sumatriptan? Are you doing the D3 regimen? If you are only using verapamil right now, you're in a good position for busting, if that's something you would want to do. Read about it in the numbered items in the ClusterBuster Files section.

Thanks, spiny.

>>>spiny said: I could only take 240mg because my resting BP was 80/60 at night.<<< spiny, do you mean that your BP was "normally" 80/60 (before you took the verap), or that the verap lowered it to 80/60? I ask because my daughter's normal BP is about 80/60, and she has been told that therefore she can't take verap.

>>>Pebblesthecorgi, on 06 Dec 2016 - 9:14 PM, said: Airgas is basically a distributor and generally doesn't do "retail" on medical gases.<<< Thank you for this clarification! We get our welding O2 from their industrial outlets, and the Airgas medical facility is practically next door, so I had imagined one could get medical O2 there. And thank you for the overall smart and helpful post above.

It's probably worth mentioning that there are at least a couple of folks who once were very active members here who have gone from chronic to painfree (painfree for several years, at least) from various forms of busting.

I'm not an expert, and this is mystifying to me -- how can you be "the public" they can't sell to if you have a prescription? Our great moderator, ThatHurtsMyHead, lives in Florida. He'll probably see this and have some helpful information if it's a state law issue. You can PM him from here: https://clusterbusters.org/forums/user/20384-thathurtsmyhead/

I'm not in Central Florida, but have you tried Airgas? Big national company that seems like it should have big tanks. Airgas Healthcare South Region - Orlando: Silver Star Rd 3100 Silver Star Rd Orlando, FL 32808 3.91 miles Get Directions (407) 293-6630

You could try water soaking and an orange juice chaser.

Orange juice is fine.

"Magic mushrooms" in treating CH has to be understood as a popularization of multiple possible approaches. It seems that virtually any psychedelic substance will help treat CH. As Pebbles' says, DALT seems effective for many people. Many get good results from LSD. People are reporting that very low doses of DMT work great for them. And many get excellent results from rivea corymbosa (RC) seeds, which unlike psilo and acid are legal to purchase and possess. It's just not legal to process them (which means, in the simplest form, grinding them up and soaking them in water for an hour). At therapeutic levels, RC is very unlikely to cause any kind of trip or any serious side effects at all. It's not the "tripping" that treats the CH. So if you don't want to wait for shrooms to grow, or figure out how to order DALT, or find someone trustworthy with LSD or DMT to sell, RC might be something to consider as a next step. Read the numbered files in the ClusterBuster Files section. Here's a link to the one about RC: https://clusterbusters.org/forums/topic/684-5-lsa-seeds-of-the-vine/ Those files were composed a long time ago now, and we know more, so please check back with any questions, or before you do anything. Many people order RC from here: https://shop.tranceplants.net/ I can't think of a reason why you wouldn't try the D3 regimen that I linked to in my earlier post, and I will say (again, more or less) that if your O2 works 30% of the time, I am very, very confident that it will work much better, much more often, with a high-flow regulator ($30), a mask designed for CH ($30), and being sure that you use the most effective breathing strategy for you.

You didn't sound cold-hearted to me, at all. Your points were good and consistent with what I had been thinking, and I did think maybe it might help others. I'll probably post it over in the "triggers" thread so, so it doesn't become as lost as it will here. Can you say what you learned about light effects as you mention in your post? Same kind of thing -- that completely dark is better?

Can't answer your specific question, but here are a few thoughts: Are you splitting your injections? https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Doing the D3 regimen? https://clusterbusters.org/forums/topic/1308-d3-regimen/ You mention drugs but not oxygen. You have oxygen? If you tried it many years ago and it didn't work for you and so you gave it up, it's been found that a higher-flow system with a better mask can work for most people.

Good points, amon and jon. Thank you.

I have a friend who lives alone. When her CH cycles get bad, I move in for a week or so to help out. It’s always been true that when I got there, her attacks would become much less severe, and then right after I left, they’d ramp back up again. We figured it was stress related, naturally. And then we realized something else. When I’m there, I sleep in her light and airy bedroom, and she sleeps on the sofa in her completely dark living room. No windows; no natural light there at all. This time, same thing again: bad before I got there, basically fine when I was there (a few small hits), but very bad attacks right after I left—right after she had gone back to sleeping in her bedroom! Got hit at 2am, 4am, 6am, and 10am. Oxygen wasn’t enough for some of them and she had to resort to trex injections, which is rare for her. So, as a test after three days she went back to sleeping in the completely dark living room. Attacks immediately down to one mild one per night, readily handled with O2. Don’t ask me . . . It’s hard to imagine that some tiny amount of outside light in the middle of the night is affecting her so dramatically. But the difference is dramatic, and we haven’t thought of another explanation. To be clear, there are curtains in her bedroom, but light still comes in when it's light outside. But the middle of the night???

john', I can't answer either of your questions. Unrelatedly, I will mention that with the Optimask, there were some reported issues with high-flow O2 leaking out the back, out the exhale port during inhales. It's illustrated here, and what to do about it (put your hand over that port), starting at about 5:30:

It would be very nice if people could take this to their doc and get a demand value prescribed!

No OXYGEN????? That's what you want and need most right now!! https://clusterbusters.org/oxygen-information/ You can split your trex injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ What's your verapamil dosage? Some people don't see benefits until the 900-plus mg/day level. Start the D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Check for triggers: https://clusterbusters.org/forums/topic/4568-triggers/ I don't think the Toradan is going to help you. Some things to try: Drink an energy shot at the first sign of an attack (most people seem to prefer them very cold); take melatonin at night, starting with 9mg and working up if needed; when you're having an attack, get your feet into a bathtub of water that's as hot as you can stand. All of these help some people. Consider busting (see numbered files in the ClusterBuster Files section of this board). It's been the only reliable source of long-term relief for many people. Yes, there will be help some day. Research is going on. Not enough of it, by far, but some. Here's one example: https://clusterbusters.org/forums/topic/4711-14-years-in-the-making-psilocybin-clusters-enter-the-lab/#entry49962

For most people, a higher-flow regulator and a better-quality mask can make a very, very big difference in the effectiveness of O2. Having confidence not to go directly to the triptan is important -- not only is too much triptan bad for you, but there is some evidence that it creates rebound attacks and extends cycles. You can get multiple injections from one Imitrex injector. See https://clusterbusters.org/forums/topic/2446-extending-imitrex/ More than a few people here have reported that verapamil only becomes really effective for them at high dosages, in the 960 range, or a little below or a little above.

It's great that you got a diagnosis so quickly and appropriate medical treatment so fast, pz'. Still, as you say, very crappy that it's CH. Are/were you getting quick aborts with your O2? Did you feel like the Zomig is effective? Did you use the Zomig "as needed" -- maybe if the O2 didn't seem to be working -- as opposed to using it with every attack? You should consider the D3 regimen described here: https://clusterbusters.org/forums/topic/1308-d3-regimen/ It makes a huge difference for many people as a long-term preventive, and it's probably better for you than continued use of verapamil. Also, should it come back -- many folks benefit from melatonin at night, starting at around 9mg. And an energy shot drunk down at the first sign of an attack helps a lot of people. "Busting," which is discussed in the numbered files in the "ClusterBuster Files" section of this board, has been a godsend for many people here.

amon, thank you for this. As long as people are getting sensible medical advice, and understand their options and what they might mean (as you clearly do), I'm fine with whatever they choose. Maybe you're doing the D3 regimen, which has proven to be a very effective preventive for many.

Wow, doctors who still believe that crap about eye color and facial features. All kinds of crazy stuff out there, but the biggest survey ever done of cluster patients found "the predominant eye color in cluster headache patients is brown and blue, not hazel as suggested in previous descriptions." There was a time when the facial features of people with CH were considered to be "leonine," and women with CH were considered to look "masculine." You can see some of that here: https://books.google.com/books?id=aJRV199FZcoC&pg=PA288&lpg=PA288&dq=cluster+headache+%22leonine%22&source=bl&ots=fyMnbJA4n9&sig=OZJF346qIx1ymX7VxM4RGpjPqBw&hl=en&sa=X&ved=0ahUKEwjAudOym7TQAhUF04MKHVvcAMsQ6AEIODAE#v=onepage&q=cluster%20headache%20%22leonine%22&f=false Some of that stuff is downright disgusting. "Men with cluster headaches looked lion-like but inwardly were like mice," it says, in what is a "serious" book about headaches published by a serious publisher in 2001. What is wrong with these people? Of course, it wasn't long ago, and it still is widely true today, that women often weren't diagnosed with CH because supposedly it was a "male" condition. Women were believed to get migraines; men CH. A lot of harm done by all that nonsense. You can see a collection of folks with CH at that Facebook page. It's just called Cluster Headaches. There are apparently quite a few FB groups, some of which are disliked by folks here. You have to apply at the FB page to be accepted, but usually that is pretty straightforward. If you have any problems, let us know. Some of the administrators/leaders used to be regulars here. Others might correct me about this, but since Verapamil is supposed to be a preventive, it would seem to me that unless you have a medical condition that is contraindicated, you ought to be taking it now, or at least start before your cycle is expected (if you want to play roulette with guessing about that). It takes some time for verapamil to take effect. Regarding oxygen, maybe they were trying to save you (or someone) some money, but there is a tradeoff between having to get to the doctor's office once a cycle has started, and then going through the potential hassles of getting your O2 delivered and set up properly, and just having it set up and ready on the first day you need it. It would also possibly be good for you to be ready with the good mask (which you could buy now) and a higher flow regulator than the one you'll get from an O2 supply company. But you can't really get the right regulator until you know what size tanks they'll be giving you, since there are two types of regulators, and some fit smaller tanks and some fit larger tanks. You should receive one or more of the larger tanks, but we've seen all kinds of BS go on here regarding oxygen suppliers. Overall, if you felt like pushing the docs a little more about getting O2 now, and starting on verapamil before your cycle, I don't think that would be a bad idea, but that's just me. I hope they also intend to give you an injectable sumatriptan, for possible breakthrough attacks. The mask designed for CH can be ordered here: http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit Have you considered busting (as described in the numbered files in the ClusterBuster Files section)? Ginger tea can sometimes help that "headache hangover" feeling.