jon019

....been both episodic and chronic.....the fear of changing from one to the other was constant and oppressive...then it happened and i learned it's really the same beast in different form... and strategies must and can be adjusted. there is ongoing discussion on which is "better"...i could make arguments on either side...but it really doesn't matter cuz ya don't get to choose. personally, upon reflection, i think the basis of the fear was "change". had a similar gut wrenching fear of hits changing side...why would that be "worse"?..dunno and never found out. ...the beast is hard enough to deal with...making yourself nuts with worry about how he changes the "rules' is kinda pointless....attitude, a plan, and the right tools are the key.. best jonathan

Tony...Amazon and others have at home vit d tests for about $50 (US)....and there are sample at home and send to lab versions also....are these restricted in Finland?

....you're doing the right thing by having it checked....it does seem odd that one of the usually transient symptoms of a beast visit would remain...but myself and others have reported a permanent constriction of the hit side pupil...multiple eye docs/neuros just look at it and shrug so i've stopped worrying about it.... best jonathan

@Pebblesthecorgi....interesting question that "success" definition...methinks it's all relative and highly individualistic.... ...for decades i never thought that completely PF was realistic....while it happened for some, it seemed so rare that my goal was that which enabled the closest to a "normal" life......and i do not consider that life and career to have been possible (and therefore successful) w/o O2 and caffeine.... ...yet, that was only a ca 80% proposition...leaving 20% to deal with "by any means necessary". that included D3, all the weird stuff like diet and cayenne powder up the nose, or verapamil and 19 other meds, and triptans (which work great, but i've always thought of as "you can pay me now...or you can PAY me later") so last resort only. may have been fooling myself on occasion, didn't care then, don't care now..."it" worked until it didn't.... ...is it all a tail chasin' sonofa girl-squirrel?...YUP!....but perfect is the enemy of the good....livin' between the hits got me through... best jonathan edited to add.....D3 regimen may or may not work for me....the other benefits make it worthwhile.....then, of course, mooshies and such remain a possible if needed....

.....re D3 regimen i am of the flock...Batch (xxx) is the good shepherd...he will more than likely be along shortly, you can start with the first (has been updated) post by CHfather in this thread:

Yup...YESTERDAY!!!

...there isn't much at CB that isn't golden...the responses you've received above are among the best I've seen and should be in a text book...and I'm an old guy on these forums... ...whatever you need to do to get O2...DO IT!....if ya can't find a doc with the simple smarts enough to look up THE PRIMARY abortive (next to or along with triptans) as recognized in the literature and real world...then you're gonna have to take up a welding hobby.... ...the very first time you successfully abort a hit with OXYGEN, as the pain drains away like fricken' water down a tube.... you WILL cry with joy....and probably curse whoever stood in the way of getting it in the first place. 1982 was my first...I can still get teary remembering.. ...many of us find that an energy drink alone or in combo with the O2 is incredibly effective in aborting or lessening a hit... .....I am concerned with your listed drug cocktail...with the exception of Zomig, which is my abort of last resort and highly treasured...in the unlikely case that one of these "prevents" works you won't know WHICH one, and you'll ride the merry go round forever (especially if your cycle ends on its own anyway). ...pregabalin (Lyrica) has a very low success rate and some crummy side effects...propranolol is an old drug (first drug tried on me nearly 40 yrs ago) that sometimes works for migraineurs and rarely, if ever, for clusterheads......verapamil can be effective (was for me for a while) but SR is extended release with much fewer reports of effectiveness, you want the immediate release, and the sweet spot for most is 480 mg/dy in divided doses, some (my case) go up over 1000 mg to find relief in high cycle...(heart rhythm should be monitored)... ...put the D3 regimen and/or mm in your bag of tricks and the above may be moot.... best jonathan

...ask your pharmacist if they can get the Teva generic.. https://www.tevagenerics.com/product/sumatriptan-injection-usp-autoinjector ...if you are using the 6 pack vials their supply is sporadic vs the stat dose if available at all.. ...as an alternative the 5 mg nasal spray Zomig formerly from Astra Zeneca...now Amneal worked as well for me with lesser side effects https://zomig.com/?gclid=Cj0KCQjwtsv7BRCmARIsANu-CQcaW9Xpzm_hGTRHyo0ZTnAU2FsR35-Pg-Igc2wr2ZyEGVsiRDGUXZ4aAhhMEALw_wcB best jonathan

.....sounds right...here's hoping so... ...Edvard painted it....

.....mine a bell curve....slow ramp up of number and intensity...a plateau of soul crushing bangers....slow ramp down. i knew the cycle was over when i got one last screamer which was always worst of cycle (actually prayed for that one as i knew what it meant). when i collected my wits and nerve (sometimes several days, sometimes several weeks), did the beer test.....Heineken....surefire tell..................

.........yes, fortunately rarely.....check your triggers.....several 6-8 hr bangers from anesthesia/alcohol for me....

thanks for posting this DD.... ...does CB or anyone have thoughts on particular form and content of comments likely to be more effective than simply saying "O2 works for me"...or is it just number of affirmative commenters that's more important? jonathan

OXYGEN...OXYGEN...OXYGEN.....life changing/sanity saving....and since she in a hospital setting the opportunity is there to try w/o going thru all the hoops most of us do... .....15-25+ lpm at first sign of hit, make sure only O2 (no room air, plug any mask holes), energy drink/caffeine first and quickly improves efficacy for many, stay on for 5-10 min after hit subsides, try various breathing techniques: hyperventilation, breath and hold, slow deep breathing ...or a variation. we each find our own "style" that works best... ....and find a headache specialist....she is being poorly served best jonathan

@EggMan Before getting a neurologist, I was mistakenly prescribed 360 mg of Verapamil for a year for episodic cluster headaches. ...that's not necessarily a mistake..... just a little lower than most find effective...add in O2 and triptans and it's pretty standard practice (with maybe a steroid taper/IV to break/interrupt a cycle)....anything below 480 mg/dy and extended release were worthless to me..... but depending on cycle 480-1040/dy was the only prevent med that ever worked for me (both ECH and CCH). those familiar with treating CH are aware of the need to go high dosage (it scares most PCP's)....note that heart rhythm must be monitored... Usually I continue taking whatever combination I’m on through a cycle; for fear of things getting worse. .....that's good...once a treatment protocol is agreed on with your provider it is pointless not to give it a fair chance....of course, common sense should prevail should side effects become a problem.....tho it should be noted that side effects frequently subside with continued use.... Oxygen (either prescribed or welding) and sumatriptan injections are my lifelines. ......and nice to have on hand for any breakthroughs post D3 or alternatives....one of my favorite sights in life is a DUSTY O2 tank..... I’m going to add Benadryl to my list of preventatives though. ....as needed to deal with allergy mediated hits or sleep issues, I hope....not an automatic prevent protocol...

...get yourself a hobby...we'll call it "welding"...you can get a whole lot of welding O2 for 78 bucks.....and you can turn the dang flow to hurricane level if ya want...they really don't care what you are gonna do with it.... just DON'T say yur gonna breath it...if you feel more comfortable with a cover story tell 'em you need it for your dad, brother, mom, sister, S.O...whoever....as they are indisposed right now. this has the benefit of allowing any and all neophyte questions..... in bocca al lupo, jonathan

kat...I'm not following....changing the script will have no effect on usage...you determine the flow that works for you...nobody else will know or care....

...fixed it for ya...............

.....thank you for the share.....it's delightful to hear when a clusterhead (so their family too!) finds success..... ....always breaks my heart when folks say "O2 doesn't work" when it might be, just might be, a matter of mask +/or flow +/or technique.....and some of them will miss the life changing miracle I know oxygen to be.....because they didn't pursue it..... ....good onya for keeping at it til ya found what works for you.....truly one of the problems with oxygen therapy is that there is no "right" way...beyond the basics, ya gotta find out some stuff on your own (incl right here).....

...boy that's an old one I haven't thought about for a long time...tried in the 80's to no effect.....relative of lsd so in theory effective...."supposed" to only be used in intractable cases (as a prevent) where other meds fail, as it has potential very bad side effects (note, with EXTENDED use).....requiring a periodic drug holiday.. ....having not seen any significant reported success with this over the years, I am initially inclined to be dismissive.....but it all depends on where you are on the spectrum that only you know....as Chfather recently pointed out....we are far more likely to see failure stories than success....still, it's a long shot....

...when episodic most of my cycles were eerily consistent...same number, intensity and timing. but on occasion, would get the "one hour wake-ups" all night long ...very odd change in a remarkably consistent pattern. it had to be an outside influence that i only figured out yrs later (greatly influenced by Batch's thoughts)...musta been allergies... ...would suggest a trial of Benadryl (diphenhydramine)....an old style anti histamine that works much better for clusterheads than the newer versions...do a search here for Batch and benadryl for dosage advice and a way better explanation.... ....for reasons i am unaware of O2 worked every time within mins for these wake ups...wasn't always the case "normally" ...where O2 was 75-90% effective.. best jonathan

WOW!...what spiny says!...feels like we been peeking at each others homework! ...the only thing I would add to try is a technique a respiratory therapist (thanks Judy-Bob) once advised that has served me well....called pursed lip breathing...you make your lips real small and forcibly "puff" out air causing back pressure...opens airways, improves oxygenation and CO2 expulsion....google it for a better explanation .... OXYGEN ROCKS!!!!

...be aware of and prepared for the beast to reappear post steroid taper...while it can break a cycle, the usual purpose is to buy a temporary( 10-14 day) reprieve until a prevent (like verapamil and others) kicks in....

....the ending about using as a prevent is definitely a "yeah right" moment... ...most of it looks like stuff I've done...tho a LOT more violently and near involuntarily.... ....what does intrigue me is the possibility that a regimented plan involves a thought process and distraction that most definitely could be helpful...the few times I was able to put my mind somewheres else were remarkably successful........it was too hard to replicate consistently

...one of the problems with undiagnosed yet treated conditions is how insurance companies will or most likely WON'T cover the treatments or procedures you need...you may be fine with current but run into problems with next...it does sound like your PCP is treating appropriately tho the vison issue sounds more migraine than CH... .....many folks find that immediate release verapamil is superior to extended release.... put that in your consideration file and note that 360 is a somewhat low dose....480 seems to be the sweet spot and some go much higher as needed.... .....what type of O2 mask and flow do you use...a specialized clustermask and 15-25 lpm can make a huge difference....adjustments in body position may help...I found sitting at a 45 degree forward body lean with head down "looking at feet" to be optimal...YMMV best jonathan

@Tomas.....get caught w/o tools....you could try hyperventilating (with INTENT)....actually worked for me......once or twice...