CHfather

>>>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.

The only thing I'm wondering about in what you say here is the "pain shot" that helped you at the ER. Do you know what it was? Maybe a triptan -- most conventional pain medications, even the very strongest, such as morphine, won't help with the pain of a cluster headache attack. Or maybe your attack was ending on its own. For my money, the best straightforward guide to pharmaceutical treatment of CH is the one by Goadsby that you can see from here: https://clusterbusters.org/medical-research-reports-studies-case-reports-links/ Folks here will tell you, though, that pharma meds may be needed in some cases, but they do have substantial potential side effects that you want to minimize. Pharma meds are what the neurologist is going to give you. I have to say I'm puzzled that your doctor, the one who says he has CH, couldn't prescribe something, but maybe you have to be attentive to possible interactions with the RMSF meds. If you get another attack soon, you might try quickly drinking an energy shot such as 5-Hour Energy. Many people like them very cold. Also, you might try melatonin at night, starting with about 9mg. Yes, you are completely correct about oxygen. Go prepared to insist on oxygen and not accept no. You should consider starting on the vitamin D3 regimen: https://clusterbusters.org/forums/topic/1308-d3-regimen/ If you are prescribed injectable sumatriptan (Imitrex), which you probably should be, be sure you are aware of this very important strategy: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ You might want to look into "busting," which you can read about in the ClusterBuster Files section of this board. And you probably would also benefit from reviewing the list of possible triggers that members here created: https://clusterbusters.org/forums/topic/4568-triggers/ Alcohol is the great big no-no for most people, but there are a lot of things that can set off an attack. Please stay in touch.

I'm glad you've kept at this. A headache center is your best bet. Keep a diary in which you track your pain levels and the duration of your noticeable increases in pain. Maybe also track sleep patterns and other possible factors, such as situations that might be triggering attacks (stress, climate changes, certain foods . . .). Your consistent relatively-low-grade pain might be what folks here call "shadows," but it could be something else. The more information you have, the better your chance of getting a good diagnosis. If you feel a severe attack coming on, you might try quickly drinking an energy shot, such a 5-Hour Energy. It might help. Many people prefer them cold.

Ting! Thrilled that things are generally good for you. My best to you and your daughter. Jerry

You're not alone in not wanting anyone to see you having an attack. Hiding attacks from friends and family, even from people they live with, is a very common characteristic of people with CH. I sat with my daughter night after night in the early days, when she had nothing at all to abort an attack. She chewed on coffee beans. Well, she had "oxygen," but her neurologist had prescribed a concentrator and nasal cannula, so she believed oxygen didn't work for her. She can't take verapamil because her blood pressure is already low, and she (like me) has terrible reactions to steroids, so they are out. She also reacted very badly to Imitrex at first, but she can handle it better (still not great) with the split injections. We didn't know then about energy shots, which sometimes help her. I was amazed by her bravery then, and I still am now. She really is a hero to me, and yes, my heart does break just thinking about what she goes through. No one who hasn't seen an attack can come close to understanding the horror, and even those who have seen attacks can't really understand. She was in herr early twenties when they got severe enough to see a doctor, although I believe she had them as an infant and she had had forms of them long before her twenties. Her first diagnosis was gluten allergy. Then tooth problems. Then, amazingly, trigeminal neuralgia, which neurologists continued to say. I actually diagnosed her myself, when I was watching a youtube video about surgery for trigeminal neuralgia and the doctor giving the video said something like, "First, let me tell you about some things that are not trigeminal neuralgia," and described the symptoms of CH. All this is of course a familiar story, in one form or another. She has tolerable cycles and days, and better ones, and worse ones. Oxygen works well for her on 90-plus percent of her attacks, and she has trex for breakthrough attacks. She had to stop doing the full D3 regimen because of other health issues. She's a brilliant young woman (a very successful lawyer before the CH wrecked her career), and she's not willing to be made dopey by drugs like topamax and gabapentin. This is more than you asked for, but I needed to say it all.

Thanks very much for the kind words. They mean a lot to me. I just posted this at another thread, but it seems pertinent here: My daughter has CH (I don't). Six years ago, people here helped us learn how she could manage it, after she had been misdiagnosed and mistreated for years by some "highly trained" neurologists. That's why I'm here -- out of gratitude; to keep learning as much as I can; and to try to help keep anyone I can from going through what she went through. The heroes of this board and the CH community are too numerous to mention. In my view, everyone who fights CH is a hero. Back when I came to this board, before Facebook, this was a livelier place. There were at least 20 people here, whose screen names I could still list off the top of my head, who helped me and my daughter within a matter of just a few days. It brings tears to my eyes just thinking of how much I owe, and we all owe, to them. In many ways, I'm just a conduit for what they taught me. I've been really happy lately to see some newer folks taking up the campaign here, providing great help, advice, and support. Dallas Denny, spiny, and I, among others, are getting up there in years, and so until there's a cure or at least a 100% effective treatment, there's going to be work to be done and eventually it will be done you all. Keep it up, folks, please keep it up.

My daughter has CH. Six years ago, people here helped us learn how she could manage it, after she had been misdiagnosed and mistreated for years by some "highly trained" neurologists. That's why I'm here -- out of gratitude; to keep learning as much as I can; and to try to help keep anyone I can from going through what she went through.

What a nice post, Jarhead -- thank you for it. Do you feel fairly certain that you have cluster headaches? If you do have CH, you will really want to get oxygen from your appointment, among other things (most likely a preventive such as verapamil and maybe an additional abortive (in addition to the oxygen), ideally injectable sumatriptan. Oxygen is often the tough part, even though it's listed in every physician's guide as the #1 abortive. You should probably look over the information here -- https://clusterbusters.org/oxygen-information/-- and consider printing out this journal article to bring with you: http://jamanetwork.com/journals/jama/fullarticle/185035 Neurologists don't prescribe oxygen anywhere near as often as they should. If you have CH, the D3 regimen will almost certainly help you, too. https://clusterbusters.org/forums/topic/1308-d3-regimen/ Keep us informed, please.