Echo Posted January 25, 2014 Share Posted January 25, 2014 Hello everybody, Really wish I joined this forum earlier, there is so much information and so much great feedback from people on questions. I have been looking around for experiences with oxygen, as it only seems to buy time for me, rather than stop the attack entirely. I'm interested to see how it affects people, since I've been hearing different experiences from different sources. So I've set up this poll (hopefully done it correctly) and hopefully we can compare. Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted January 25, 2014 Share Posted January 25, 2014 Hi Echo In a nutshell, "life saving" for myself and the vast majority of headbangers here!! I've personally met only one CH'er for whom O2 was completely ineffective!! So I'll beat CH Father to the punch and ask how you're using O2 therapy, what flow rate, what type of mask?? Welcome to the community....but sorry you have the need to be here!! DD Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted January 25, 2014 Share Posted January 25, 2014 Hi Echo, I voted "Oxygen stops the attack (entirely)", although it's not entirely as simple as that for me. After the intensity of a cycle would ramp up for me, I found that O2 would do exactly *nothing* for me when administered in the tired, old, outmoded (but sadly still prescribed) low flow rebreather manner. Then I got educated by our headbangin' bruthas and sistahs on high flow 100% O2 and could even abort stronger hits. This is an extremely typical, common experience. At the apex of a cycle when the intensity is through the roof and the CH seems to have some pent up ferocity from being stifed so much, even the high flow O2 can fail me, or for wake up hits, only last an hour, then the beast is back, so I've deployed imitrex shots in such cases as a back up (an injection could buy me 3 hours of sleep before the next hit). This was all before busting, which has rendered me not in need of any abortives for a good while now, and that is also a pretty common experience. Lotsa CH'ers swear by an energy drink/shot's ability to help the O2 work, and to keep the attack at bay longer BTW. Your doggie looks like he was about to snatch the camera. Quote Link to comment Share on other sites More sharing options...
Echo Posted January 25, 2014 Author Share Posted January 25, 2014 @ Dallas, My neurologist believes 7 to 12 L per minute is the range to try with and stated there is no point in going above 12. (I asked about that when I noticed it doesn't cut them off properly for me). By look of this website though, trying higher might well be worth it. My regulator allows me to go up to 25. Should I try that? I have a regular simple mask like this one: @ Bejeeber, I tried the energy drinks thing too and ended up drinking them all day every day, as I haven't had a headache-free day in over 6 months now, or night. Unfortunately I'm now on verapamil and lithium at the same time and caffeine causes some nasty side-effects to flair up even more, so I'm trying to stay away from it and grabbing the oxygen again more often in the faint hope it works for a change. And yes the doggy (still just a puppy really) was absolutely fascinated and tried to see if the thing was edible after the picture was taken haha well spotted! Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted January 25, 2014 Share Posted January 25, 2014 Hey Echo Absolutely crank it up to 25 (if you have no underlying conditions like COPD), but ONLY after you get the correct mask!!! Check out the O2 page on the little menu tab on the left side of the page....you need the opti1mask which you can order from the store at our sister site CH.com...around $30 + s&h...in the meantime, you can use a standard NON rebreather mask( looks like your photo but with a 2 liter ambu bag attached. With this set up I consistently abort a hit in 5 to 8 minutes!! DD Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 25, 2014 Share Posted January 25, 2014 Echo, when you read that oxygen page under the MENU tab, you'll see a lot of things that will probably help you (such as blocking the empty holes on your mask so you're breathing in only straight oxygen with no room air mixed in, and using an effective breathing strategy). There's also a link there to a website in Europe that sells the O2ptimask. One thing that's not mentioned there that helps some people is to look down toward your feet as you breathe. A well-known CH doctor here recommends that to all his patients. Also, taking a deep inhale and then holding the air in your lungs for a few moments before forcefully exhaling it is highly recommended. The flow rate you want to use is one that allows the bag on your mask (if you have one, as Denny notes -- you should have one, or you don't have a proper non-rebreather mask) to always be full and ready for your next inhale. That might be 25, or it might be less, depending of what breathing strategy works best for you. It's great that you have a 25 lpm regulator -- most people here have to buy their own. You are in a perfect location (the Netherlands) to try busting with psilocybin. Many people there have used "truffles" with excellent success. And you could keep taking the verapamil if you want to, and maybe even the lithium, though that might make the psychedelic effects of the truffles considerably stronger. If you're going to stick with conventional medications, I wonder why your doctor hasn't prescribed injectable sumatriptan (Imitrex, in the US) to abort attacks, particularly when the O2 wasn't working (which we hope will change now). But I try not to spend too much time wondering why doctors do what they do. 1 Quote Link to comment Share on other sites More sharing options...
Echo Posted January 26, 2014 Author Share Posted January 26, 2014 Hiya, After reading the comments here, I did look more into the mask you guys recommend and located a place where I can buy it. The mask I have doesn't come with a bag, just a plain mask with 2 holes in them indeed. Fixing that asap! Honestly a little disappointed that my doc isn't aware of this stuff. He's doing research on CH oxygen therapy right now and told me it won't work if it doesn't work at 12. I'll be pointing out this info about the mask you guys have better success with. I heard about shrooms but honestly I'm scared to use psychedelic drugs... nervous about getting a bad trip. I've never touched hard drugs in my life. Hopefully there will be something similar that has the hallucinatory part taken out of it, that would be okay. My doctor did try sumatriptan on me but I had a bad reaction to it (and it didn't abort my attack), so that's not a good option for me. We will only consider trying that again while being under medical supervision, when we run out of other things to try. Gotta say I'm very glad I found this website. After trying painkillers, betablockers, sumatriptan, verapamil, oxygen and lithium, so far without any success... the way the doctor started talking sounds as if there's not much left to try. This is an eyeopener and gives me hope again. Just getting oxygen to work, would be amazing. Quote Link to comment Share on other sites More sharing options...
Bejeeber Posted January 26, 2014 Share Posted January 26, 2014 Hopefully there will be something similar that has the hallucinatory part taken out of it There is indeed exactly that - it's called BOL-148 - but in this twisted world it is unavailable to us at this time. :'( Something you may want to still look at for busting though is Rivea Corymbosa seeds ("RC"). Many of us find we can take them right before bed and just sleep right through whatever mild effects there may have been. 8-) Some find RC doesn't work for them but mushrooms do, and on occasion others have found the opposite to be true, so there can be a bit of trial and error involved. Also, there's the vitamin D3 regimen, and, well anything CHfather mentions should be paid very close attention to. 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 26, 2014 Share Posted January 26, 2014 I see Jeebs got in ahead of me once again! So this is redundant in many (or most places). I wish he would quit doing that! Hopefully there will be something similar that has the hallucinatory part taken out of it, that would be okay. Many people use seeds (rivea corymbosa seeds) that contain a busting agent, but which are not hallucinogenic at the level needed to treat CH. Something to think about. the way the doctor started talking sounds as if there's not much left to try There's plenty of stuff to try! Two things that your doctor probably wouldn't know about but which have helped a lot of people with CH are a "vitamin D3" regimen, and licorice root. You can read about them here: D3: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804 Licorice Root: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298659068 Quote Link to comment Share on other sites More sharing options...
spiny Posted January 26, 2014 Share Posted January 26, 2014 Echo, I would definitely try the D3 regimen, especially considering your location!!!! It is a great aid in treating CH. With your short days, vitamin D would likely be low. Get your level tested first if at all possible. all the best, spiny Quote Link to comment Share on other sites More sharing options...
Echo Posted January 26, 2014 Author Share Posted January 26, 2014 I am laughing so hard right now. We used to have licorice root sticks as "candy" when I was a kid. We would just chew on them or make tea with them (or both). Actually found out that the local pharmacy started selling them and bought one (about a week ago). But I looked away for a second and my puppy snatched it off the table and ran off with it. I took it off her but damn those begging puppy eyes. Heart breaking.. I gave it back to her and she ate the whole thing. hahaha I'll definitely pick up some more tomorrow then. It is really great to hear there are so many more things to try, even little things that I can try while the doc works his way down the list of well-known-meds to try. You guys are amazing and incredibly supportive. That really gives me hope, and helps get through another day. Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 26, 2014 Share Posted January 26, 2014 Unfortunately, those licorice sticks are different from the licorice root extract that's used for CH. while the doc works his way down the list of well-known-meds to try  When your oxygen starts working right it will make a huge difference. The thing about oxygen is that there are no side effects. With almost every other prescription CH med, there are side effects, often significant ones, and even long-term ones. (With lithium, for example, you should be getting regular blood tests to make sure you're getting enough but not too much -- and some studies have shown that when people with CH stop taking lithium, they sometimes experience severe "rebound headaches.")  That's a reason why busting and D3 are so appealing to many people -- no significant side effects have shown up for either of them. The licorice root you have to be somewhat careful of while you're taking it, because it apparently has some significant effects if you take too much for too long, but over the short run, used properly, it doesn't seem to create any distress. I'm just saying that the more that you can successfully treat your CH with relatively side-effect-free treatments, the happier you're likely to be. There's nothing on your doctor's list that will not have side effects, even pretty major ones. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted January 26, 2014 Share Posted January 26, 2014 The mask I have doesn't come with a bag, just a plain mask with 2 holes in them indeed. (Don't mean to come out of the gate too hard on your doc but it sounds like he hardly knows what he's doing. (atleast he knows about 100% O2, so I'll give him that Some docs (a LOT of them) don't have clue as to how to properly perscribe O2. That guy doing his "study" is going to incorrectly report that O2 is useless for his patients, when it's really his script that's useless. He didn't give you a non rebreather mask if it doesn't have the bag that can fill with 100% O2. And that pretty much equals complete failure to help CH attacks. Not to mention he's completely clueless if he says over 12lpm won't help. Many people aren't able to get aborts until they go to 15lpm at a minimum. Some people have to go all the way up to 25lpm and do a short hyperventelate to take out attacks. It sorta gets me to hear quacks that act like experts when they don't have the first clue as to what they're doing. (But, glad he atleast got you the O2 script, you can modify as needed from here!!! yayyyy) You're on the right track getting the "Non Rebreather" mask from the website. PFW, J Quote Link to comment Share on other sites More sharing options...
Chad Posted January 27, 2014 Share Posted January 27, 2014 The mask I have doesn't come with a bag, just a plain mask with 2 holes in them indeed. (Don't mean to come out of the gate too hard on your doc but it sounds like he hardly knows what he's doing. (atleast he knows about 100% O2, so I'll give him that Some docs (a LOT of them) don't have clue as to how to properly perscribe O2. That guy doing his "study" is going to incorrectly report that O2 is useless for his patients, when it's really his script that's useless.  He didn't give you a non rebreather mask if it doesn't have the bag that can fill with 100% O2. And that pretty much equals complete failure to help CH attacks. Not to mention he's completely clueless if he says over 12lpm won't help. Many people aren't able to get aborts until they go to 15lpm at a minimum. Some people have to go all the way up to 25lpm and do a short hyperventelate to take out attacks.  It sorta gets me to hear quacks that act like experts when they don't have the first clue as to what they're doing. (But, glad he atleast got you the O2 script, you can modify as needed from here!!! yayyyy) You're on the right track getting the "Non Rebreather" mask from the website. PFW, J I think we have all been through this avenue with neuros. My current one admits she isn't versed on it so she asked what to write on the script and I said 15 lpm. Now, most of us have regs that go far beyond this so if the doc writes 10 lpm max, who cares. We have control of that. If you don't have a good reg, check them out on EBay as they're relatively inexpensive until you exceed 15lpm +. Quote Link to comment Share on other sites More sharing options...
Racer1_NC Posted January 27, 2014 Share Posted January 27, 2014 If you don't have a good reg, check them out on EBay as they're relatively inexpensive until you exceed 15lpm +. Here's a 25 lpm reg on the cheap...and brand new. http://www.amazon.com/gp/product/B004GC4I6K/ref=s9_psimh_gw_p364_d0_i1?pf_rd_m=ATVPDKIKX0DER&pf_rd_s=center-2&pf_rd_r=16EPQYD8GKDAGDPH5N9X&pf_rd_t=101&pf_rd_p=1688200382&pf_rd_i=507846 Quote Link to comment Share on other sites More sharing options...
Echo Posted January 27, 2014 Author Share Posted January 27, 2014 (Don't mean to come out of the gate too hard on your doc but it sounds like he hardly knows what he's doing Yeah.. From the look of the forum, this is what you all went through as well. He's not the first neurologist I've seen, but supposedly, he's an expert on CH. I really wonder, don't these doctors ever look at forums like these? I know it's not scientific data like Pubmed might give them but surely it gives them a better sense of new research directions and for advise on things to have their patients try if nothing else works... I asked what's gonna happen if these meds of his don't work for me and he started talking about some sort of pacemaker as a last resort. Really rather make sure I've tried everything before they go putting bits in my head. The new oxygen mask is on the way and my regulator goes up to 25 so I think I'm good for now. Can't wait to try it out. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted January 27, 2014 Share Posted January 27, 2014 Echo, You're a smart cookie. Don't let them start cutting on your brain... I've spent most of the last 4 years Completely Pain Free, thanks to finding this website!!.. J Quote Link to comment Share on other sites More sharing options...
Echo Posted January 27, 2014 Author Share Posted January 27, 2014 I've spent most of the last 4 years Completely Pain Free, thanks to finding this website!!.. J I'm happy for you. It's good to hear that a lot of people finds ways to fix it for themselves. What turned out to be the solution for you? Quote Link to comment Share on other sites More sharing options...
CHfather Posted January 27, 2014 Share Posted January 27, 2014 The new oxygen mask is on the way Here's a video showing how to assemble the O2ptimask (simple as it is, it stumped me) and suggesting ways to use it. He demonstrates the breathing tube that you can use instead of the mask, and has an important suggestion for using that tube with a high-flow system (block the non-breathing end of the tube as you inhale). Some people like the tube (they feel like they get a better inhale, and it's less "claustrophobic" for them than the mask); others strongly prefer the mask, in part because they find that taking in O2 through the nose is soothing in itself. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted January 28, 2014 Share Posted January 28, 2014 Echo, When I first started dosing with the substances mentioned here I used HBWR seeds (LSA) to kill a cycle. Then maintenance dosed every 90 days with the HBWR. After a year a cycle came and wouldn't go away with the LSA dosing. I switched to vitamin M to kill it and have used mushies (mostly) every 60 days to keep the CH away for the majority of the last 3 years. (4 years total). To kill the cycle with vitamin M, I dosed a medium strong dose every 5 days for 3 doses. Life is a thousand percent better now than it ever was before 4 years ago. Sending you well wishes you'll be 100% painfree soon! J Quote Link to comment Share on other sites More sharing options...
Platypus Posted January 28, 2014 Share Posted January 28, 2014 O2 doesn't help me at all. But my HA's are more migraine w/ features of cluster. Quote Link to comment Share on other sites More sharing options...
Echo Posted February 11, 2014 Author Share Posted February 11, 2014 I am very pleased! The optimask does a better job than the old mask in acute treatment of attacks. It's not a 100% success rate but I think that's because I'm reluctant to continue using it for an extra 10min after the pain stops or that I'm sometimes late to use it. (Still stubbornly wait to se if I can't kill it with an energy drink first, cause its faster) I showed the mask to my neurologist today. He admitted he had no idea what sort of mask we get when he prescribes oxy therapy but he was very happy to hear all this and copied the information. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted February 11, 2014 Share Posted February 11, 2014 Echo, Sounds like you're doing a great job educating your doc. Also sounds like he's open minded and maybe he'll take that knowledge to the next patient he sees! Doesn't sound like you've tried the truffles or mushies yet? When/if you do, I hope you have the same "wow" moment I did. Living painfree (or pretty darn close to it) is something I can only hope for everyone with CH. J Quote Link to comment Share on other sites More sharing options...
Echo Posted February 11, 2014 Author Share Posted February 11, 2014 That's right, I haven't tried them yet. Still nervous and too much of a coward :-[, anxious about getting a bad trip. It's still on my list and I often think about it, looked up where to get it and everything... but I didn't want to try that with verapamil + lithium in my system already messing me up. Shrooms is one of those last resort options for me, I need to get quite desperate before I will go through with that. Right now, melatonine is a clean thing to try so I will try that first. Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 11, 2014 Share Posted February 11, 2014 The optimask does a better job than the old mask in acute treatment of attacks  Happy to hear this!! :) :) Quote Link to comment Share on other sites More sharing options...
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