All Activity

When oxygen doesn't work and triptans only "help some," it raises my curiosity. Have you used an injected triptan (Imitrex)? Did it not stop the pain pretty quickly? (It sounds to me like you are using O2 correctly enough that it ought to be providing some benefit, and I don't believe that it's ineffective for 15-20% of people in that circumstance.) You mention periods between your "worst pain attacks." Is there always or nearly always some level of pain that sometimes breaks out into much worse pain? Regarding busting, seeds (rivea corymbosa seeds, most often) are very effective and there is typically no "trip" from them. They are legal to purchase and possess in most US states, and preparation is simple: crush, soak in water, drink. People have found Schmerbal's Herbals to be a good place to get them (half an ounce would be more than plenty): Rivea corymbosa, Untreated Ololiuqui Seeds ~ Schmerbals Herbals®

I hear you when it comes to changing cycles - can be somewhat unsettling. Glad that you haven't had a full blown attack in a few weeks and that you have O2 on the ready. Heres hoping that your cycle is short lived and that it is over soon. On the D3 regimen side a couple of things could help tweak it and for that you'd want to have the follow up lab tests at the 4-6 week mark - you'd see where your 25(OH)D level got to and if within the target of 80-100ng/mL. Did you have that lab measurement and did the loading dose get you up into that range? Cheers, Craig.

@dhuddly My TBI was decades ago…I nearly died in a motorcycle accident going 50 mph on a concrete road, w/o a helmet, at age 12. It’s a miracle I survived and don’t have a disfigured face (I do have some second-degree burn scars on my body but fortunately almost nothing on my face…but only b/c they scraped my face twice a day, in very painful procedures.) Although I had a TBI, I fortunately didn’t lose speech or have to relearn to walk, etc. The severe headaches started soon after my hospital stay …or I also had them in the hospital, but being unconscious or semi-conscious —combined with pain meds— possibly kept me from feeling the severe headaches. I lived in a very small town then (small hospital), and honestly didn’t know enough to advocate for myself until my college years. Since my mom had what she called “sinus headaches,” we thought mine were the same. Wrong! I was finally diagnosed with chronic migraine at age 20, but I suspect I also may have had CH all along. I know there are far worse TBI stories than mine…maybe yours? Please share your experience, if comfortable doing so. I know not everyone with severe headaches including CH has had a TBI, but it certainly makes our cases complicated and intriguing, doesn’t it?

Have a question. My cycle this year has been weird. Luckily I only get one every 3 years. They have lasted anywhere from 1 month to 6 months. This is the lightest cycle as far as pain Ive had. I am 7 weeks into it. Havent had a full blown ch in almost 3 weeks. I started the vitamin d regiment 3 weeks ago. Just took my second round of emgailty. Now for the question. My cycle usually gets real sporadic then is just gone one morning. This time I am still having constant shadows of about a 3. But atleast twice a day I have one that will spike to a 6 or so. O2 if I am home will stop it. My question I guess is the emgality and vitamin d just masking the bad pain and I am still in full cycle or is it actually trying to taper down and end. I have had a few days here and there I woulda bet they were gone and everything felt normal. Also Ive noticed any pressure such as a pillow on the back of my head will set off a headache this time.

@AchyBreakyHead Sorry you're here friend. I too have a past TBI and am curious how long ago yours was and if ch started after or before the TBI?

@Dallas Denny thank you.

@AchyBreakyHead The site is clusterheadaches.com but I have to admit that I haven't logged in there in several years....there's a wealth of info there but I'm sure the activity there has suffered as we have since Zuck created "the Book"! Most of us that have been here since we went live in 2009 came from there!

@Dallas Denny LOL, I'm old enough to relate to you with the Freeze dance! Glad to hear you were sharing your slick moves with your bride. I'm sure she loved it. What is the sister site you referenced? I am reading all I can about CH ...there's a lot of crossover with my chornic migraine and occipital neuralgia (and just yesterday my neuro scheduled additional testing for my C4-C5... as a neck problem found on MRI may also be giving me cervicogenic headaches.) I'm truly a "head case" (LOL), but still try to find humor in it all. I've been to Johns Hopkins and three other major university hospitals...but only recently diagnosed with CH...so I'm adding CH knowledge to what I've learned in the past about other severe headaches.

@Dallas Denny @Racer1_NC @Bejeeber I would be so estatic and eternally grateful if oxygen worked for me! Maybe I just need a little help. Fingers crossed I can make it to the conference. Thank you for your time and efforts on this site (including patience with the newbies) and the conferences. Hope each one of you has a great day.

@AchyBreakyHead ironic that you would say "tribe" because that term is often uttered at our conferences!! There's a piece on our sister site ch dot com called "pain vs suffering" that covers your question.....we are survivors!!! It's really funny that achy breaky heart would come up today......as I said, Im 79 and that song came on a YouTube video my Bride was watching and I got up from my ez chair and started doing the "freeze" line dance!! Lol! First time I've done that dance in MANY years but I was nailing it!!! DD

Thank you for the kind words and welcome, Dallas Denny. I may have found my tribe...my close friends and family try to sympathize but they simply can't emphathize like fellow sufferers. Btw, do we call ourselves sufferers here, or survivors, etc.? I'm not sure I've danced to the song but, when trying to think of an appropriate and cute screenname, the song title just came to me. : )

@AchyBreakyHead Guess we were typing at the same time young lady....old fart of 79 here! I would urge you to follow thru and attend our patient conference in Chi Town....you'll leave with a whole bunch of new friends that totally understand your pain!! Our oxygen guru @Racer1_NC will be doing O2 demos, if he can't figure out a way to make it work for you then I'm afraid you are one of the rare folks that it doesn't work for!! DD

@AchyBreakyHead Bejeeber asked the question I would have and provided some reading material for ya so I'll just say welcome to the community and sorry ya had the need to join us! Love your choice of screen names!! I spent a bit of time doing line dances to achy breaky heart...lol

@Bejeeber Bejeeber, thank you very much for your quick and thorough response. I’m rare (maybe not always a bad thing but, in this case, it may be!) - For what it’s worth, I have learned that I’m often an unusual patient. For a recent example, just a couple of months ago, I found out while hospitalized for ketamine treatment that I was setting off alarms because my heart rate was dropping into the low 30s during my morning CH attacks. Not even my neurologist had heard of it, but I found in my own online research that a drop in heart rate can be a rare side effect of CH. I’ve since had testing for my heart and it’s fine, which likely proves my suspicion of a rare CH side-effect as accurate. I should mention I’m also female, which is somewhat rare in itself, compared to the percentage of CH sufferers who are male. Oxygen therapy - I’m thankful to have found this site and I did a lot of reading before I tried home oxygen…so I learned about the importance of a non-rebreather mask and other details. In fact, I found myself educating the oxygen distributor about oxygen for CH but, I’m sure that unfortunately may not come as a surprise to you. I also had tried oxygen when hospitalized for ketamine treatment..while it wasn’t a miracle, I thought it maybe helped a little then. Possibly just a placebo effect because I wanted it to work so badly. (It was during a hospital stay for ketamine that CH was finally diagnosed. I believe I’ve had it for years, and simply thought CL was my “worst migraines.” The diagnoses alone is worth so much. When I read online that CH is considered the worst human pain -- even worse than gunshot wounds, amputations and childbirth -- I felt sad, yet also validated.) When I tried oxygen at home, level 15 with the special mask, it sadly did not help. I breathed deeply, etc., trying to follow the tips found on this site. Rare again? - I suspect I may be in the 15-20 percent of CH sufferers who do not benefit from oxygen therapy. That said, I’m certainly open to trying again. I hope to attend the upcoming conference. Maybe someone there could help me try again (my clusters are daily). The tanks, even smaller ones, are heavy and cumbersome to get to my second-story bedroom. Maybe not at all an issue for a lot of people but, as a 60+ female, it’s unfortunately an issue for me. I’m mentioning this in hopes that you/others may have suggestions. Busting - I admit I didn’t realize what “busting” was until reading more on the site yesterday. As much as I’ll try nearly anything, I’m a bit apprehensive to try it. The reasons are (1) because I don’t know how to get what’s needed and safely and legally try it (maybe you or someone else could educate me on that?), (2) I have drug allergies, which understandably causes me to be reluctant to try anything new. That said, I need relief/improvement and am certainly open to at least learning more about this potential option. Travel/Driving - On a slightly different topic, are there strategies for traveling with chronic CH? Seems most of what I’ve found so far is more for episodic CH. I’m especially interested in learning of anything to help in the case of driving. I have read that a lot of people keep oxygen in their car but, if oxygen doesn’t help me, is there anything else I may try (that I’m not already doing) to quickly minimize the pain/effects? I see no option other than nearly immediately pulling off the road (at a safe and ideally populated public location...that I can quickly find) because I reach maximum pain level within about 5 minutes. Any suggestions to speed recovery time? Thank you so much for your time, concern, and valuable input! : )

Hi @AchyBreakyHead - sorry you have the need to be here, but welcome. You've tried a bunch of stuff I see. Good news is there is more to try, and it's better stuff. One thing to get out of the way first, is whether your attempts with oxygen were optimized or not? High liter flow (like 15 lpm or higher) with a non-rebreather mask is widely considered a minimum requirement by those in the know, so if you were prescribed and tried lower flow (like 8 to 10 lpm) with a rebreather mask it's not surprising it was ineffective. You'll find more about this and plenty of other very pertinent info in the Basic non-busting information linked to below. Meantime busting, which is a much more effective preventive than any prescription, is described at the blue New Users Please Read Here First bar at top of the page here ^^. My suggestion would be to check this info out, then post any further questions you might have! https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/?do=findComment&comment=61401

G'evenin @Sub. I've been huffing weld ox for close to 20 years now. So, weld ox has got to be contam free or the welds won't be good......if an O2 supplier deals in both med and weld ox, both types of cylinders are filled from the same spigot......med tanks are vacuumed prior to filling while weld ox cylinders just get a "sniff" test. Costs are going to vary depending on location......when I began using it in Texas I was able to lease a large (48" tall x 9" dia) cylinder but sorry, I'm old and don't recall pricing.....when I moved to Okla I had to purchase my rig.....$300 for a full cylinder the same size as above, $50 for a weld ox regulator from Harbor Freight (last time I checked they were up to $75), and $25 for the clusterO2mask from ch dot com, and refills/exchanges were $23 ( it's been 4 years since it was refilled so not sure about current pricing. The cons: You can't tell them you're gonna breathe it....you're taking up glass blowing as a hobby or selling minnows....their biz is selling welding stuff so they really don't care....the 2 I've dealt with didn't ask me anything. As I said, no Idea what you'll run up against trying to source it in your part of the country. Hope this helps...any questions just fire away! Dallas Denny

Insurance company denied my medical oxygen. My neuro recommended welding oxygen as an alternative. Please, can anyone provide a starting point on seeking out safe, reliable welding-oxygen? Not necessarily looking for specific brands(?), but generally signs and what to look out for. I know literally nothing about this. Concerned about purity and unreliable equipment. In Connecticut if that is relevant.

Hi, I’m new to the group/website…Seeking any and all advice on pain relief, and hoping to connect with others who have both chronic CH and chronic migraine. Recently diagnosed with chronic CH but, at age 62, I have 50 years of chronic migraine and occipital neuralgia experience following a TBI and fractured neck. CH, of course, is my worst head pain. I’m now on SSDI (permanently disabled) after “soldiering through” decades of trying to hide my pain from employers. Even without the extra stress of a career, the DAILY CH is still so debilitating and discouraging. I find strength and hope, though, in the hours in between my worst pain attacks. : ) Helps some: Triptans, Emgality, lidocaine nasal spray, Qulipta, Neuro Energy & Focus caffeine gum, neck pillow, Penetrex muscle rub, ice packs. Doesn’t help: Oxygen therapy (bummer!), nerve blocks (have had for migraine, not specifically for CH yet), ketamine hospitalization (x2), many other RXs, PT, various neurostimulator devices, etc. Any suggestions? Thank you, and hoping to meet some of you at the October conference.

Hey there Jimmy. I would say you sound like you have been doing the reading and I reackon you are onto something with the D3 regimen down year round along with intermittent preventative busts and hopefully it never comes. As for diet, there was that small ketogenic study - I just don't know about caveman diet, by that I presume you mean meat - and meat alone, I am not sure that the microbes in your colon would thank-you for that and I suspect in time we might see that the state and composition of the microbiome influences the disease in ways we currently don't understand. I am one for the D3 regimen year round and 3-4 monthly busting (more so than ever now given a recent 16 day cycle was aborted with the MM - 2nd dose). If only there was a magic prescription of things we could do to guarantee ourselves no cycles would come but thats currently a well-wish, best we can do is - as you say, stock up and implement those things that are tried, tested and true as per the community, be that traditional or alternative treatments. I think you'd be hard pressed to find a more definitive guide that Bob Wolds Pocket Guide as a resource of most all treatments, last time I looked. Worth having a look if you have not done so before! Cheers and all the best. Craigo.

... thank you Jeebs and DD....trying to share what i've learned from fellow clusterheads and the CH giants... many right here! still remembering when i didn't know and how scary it was. so, anyway...

Not sure why you would say this cuz I can assure you that I said no such thing @Jimmy Martinez

Thank you Dallas Denny for your support! I hope you are able to view this communication. I saw a post you did recently where it says you can't "comment" anymore on a thread unless you are a moderator.

Hi Friends, this site and the incredible people on it who share LIFE SAVING information is invaluable. Thank you. I'd like to meet people in person or at least speak with them on the phone. Digital communications are awesome but I feel so much more can be gained by being in an in-person support group. Maybe even a ZOOM group. I'm in Los Angeles. I have questions about busting, DMT, and anything else that I can use against our common enemy. I'm hoping to get better and better at disabling the condition. No matter what happens, for the most part, if I'm not experiencing the agony of a you know what, I'm the happiest, luckiest man alive with ZERO complaints. I will say that if there is a positive to this condition, it's appreciating the time when life is CH free and I can sleep through the night. I'm excited to meet and know people who have found a way to successfully combat the condition and also those who are no longer affected/victims. If anyone is in LA or knows of anyone in LA, please let me know. I just want to learn more and get my arsenal ready for when the battle begins. That's a lot of fancy talk for learning more about every tool available that will weaken or eliminate the CH cycle. Thank you! Jimmy Martinez in the San Fernando Valley section on LA. PS: I'm excited about DMT. I don't know what it really is but if it kills a cycle or weakens it, Im all in.

@jon019 that was a whole raftfull of "on point" responses to a bunch of questions brother!! Salute!!!

Thank you Bejeeber! I hope you are receiving this communication?