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Welcome! Cluster headaches seem to be more rare in young women, so I'm not glad that you're here exactly but I'm glad we aren't alone! I had my first at 20 and am 36 now. I have not tried as many of the medications you mention - my last doctor prescribed me sumatriptan in tablet form which didn't do anything for me except propel me into a medication overuse cluster episode. I will say that 5 hr energy is a great abortive for me, and that I have had a lot of success with a procedure called Sphenocath, which is an SPG nerve block where they put a lidocaine solution on a nerve cluster in your head. I had it done in 2019 and didn't have another episode until this year. I did it again this week and am down to just shadow pain, I think I'll probably go back for another one in a couple weeks to see. The Sphenocath is a lot more commonly used for regular migraines, the doctor who did mine said it's really 50/50 with cluster patients, but as we know here just about anything is worth a shot. Good luck!

...good morning Erica...welcome! ...yeah, thanks Ma for sure...diagnosing CH in an adult is a crap shoot..it would seem to be even moreso for a child.... ....you don't mention OXYGEN.....considered the best abortive and NO side effects, especially heart wise. any experience there? wouldn't need the other meds.... ...careful with the Excedrin....some folks find it helps with shadows (naproxen does for me) but is useless for a regular hit, nasty potential stomach side effects and additive to any blood thinners you may be on. methinks the caffeine is the key ..... best jonathan edited to add...i see i posted same time as CHf...unintentionally redundant....but obviously i agree

I have six cats and magic on my side! Keep up the good fight my friends!

......been doing some form of this dance for near 40 yrs now, and it continues to break my fricken heart that the absolutely true above has changed so little....especially so for O2 ...the best, highest success rate, safest, cheapest abortive.... ...it is to sigh.... and one of the many reasons for ch.com, cb.org, et al. i am forever grateful for the clusterheads and their supporters who DO understand.... and reach out to others in the "family".....if we aren't our own best advocates sometimes it seems we got nothing.....

Is he breaking open the injectors to get multiple shots from each? That still won't cover 5-6 attacks per day, but properly set up oxygen will deal with many/most/all of those, so the Trex is just needed for breakthrough attacks. https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Or vials and syringes, as Pebbles' mentioned. Verapamil is a good example of what I was saying . . . One form (immediate release) works better than another (extended release), but most doctors don't know that. And the typical dosage required to prevent attacks is often far higher than most doctors prescribe. So it is concluded in many cases, "Verapamil doesn't work for me," when in fact it never got a test with a real possibility of working. Same for prednisone. We see person after person here who gets doses too low (such as the standard "dose pack"), and/or time periods too short, in contrast to what is known to be needed for prednisone to work for CH. I'm with Pebbles' and your husband that these aren't great options in any event; I was just saying that many, or even most, people with CH haver not had proper prescribing, so they don't know whether they work for them or not. Properly prescribed, they usually do.

In principle I agree with @CHfather. If one fails to respond to injectable imitrex then the diagnosis should be scrutinized. I have a similar belief to properly administered oxygen. If it doesn't work I would be skeptical of a CH diagnosis. There is general agreement oral forms of triptans are useless for aborting CH. Subcutaneous triptans should be highly effective in a person with classic cluster headaches. Many find reduced doses of 2-3 mg highly effective in aborting an attack. Using multi dose vials or splitting autoinjector doses helps reduce side effects and increases available doses. As @glo points out when you are getting hammered several times a day its impractical and virtually impossible to keep up with the shots. Between limitations on prescription amounts, side effects and rebound headaches very few could maintain control over 3 plus daily attacks. I live just south of Michigan's Upper Peninsula in a similar climate and can't say cold exposure helps much. Tried it naked in the snow and all. I'm not sure most of us can get cold enough to trigger vasoconstriction in the brain without developing hypothermia. Also when you warm up you are going to vasodilate like crazy which might be counterproductive. Its good you are seeing a headache specialist. They are a peculiar group. It must be exhausting to deal with headache people all day especially if you deal with non responders. With a few exceptions I suspicion many get jaded and burnt out pretty fast which is why you have to be your own resource and advocate. The very most important thing is to have a proper accurate diagnosis because that allows you to guide your own therapy. Personally I believe besides the classic criteria for CH you should also respond to sq triptan and\or oxygen to support the diagnosis. All the rest of the treatments are hit or miss and vary widely between and within individuals. @glo mentioned many. There's an endless list of things to try, scattered case reports about IV therapies, hormone intervention, surgery and stimulators but in truth none are consistently reliable. Things like steroids (used properly), verapamil and other pharma have significant down sides which makes prolonged use impractical. Also it seems the beast is a moving target and what may have worked for a cycle is a fail during the next emergence. If you are confident in the diagnosis and maxed out conventional therapy, have followed the latest iteration of D3 and still struggling then it might be time to consider busting. This is a very individual decision and choice which each person must be individually responsible.

Thanks, it's coming back to me from dealing with this 2 years ago. I sent the script request to his doc using the language from this site. Thanks for the reminder!

O2 condensors are essentially pointless for CH. You really do need to fast track getting the right O2 setup. Others on this forum are super helpful and knowledgeable about this.

Hey Ruth If its any consolation...were in the exact same position, the whole of last year i was doing my honors research and all i kept thinking about was " the last thing i need right now over and above COVID and academia is a cluster episode". My wish was granted as soon as i finished on the 12th of Jan and got my first episode since 2019. the beast keeps waking me up at 1am everyday and a further surprise as soon as i wake up...and oxygen is now hard to come by here in South Africa since COVID hit us. Hope WE all get through this. Stay strong!

Correct! a lot of people have hade great success with using the D3 regimen. For some it have stopped clusters all together others like myself it has cut down the amount of hits per day and the severity of each attack. You will need to get your bloodwork done to kind out what your levels are and make some adjustments but it is worth giving a try. XXX Formally known as Batch on this site, is available to help you out with any questions about this.

Sorry to see you back, but at least you are among those who know what you are going through (Relatively speaking as we each have our own tailor made beasts) I have decided pets, particularly cats should be part of a ch'ers coping kit. My devon is one of the only things during a hellish hit that can bring me some peace. Hopefully, all gets back on track for you fast.