jon019

...it was the rare cycle when i DID have night/sleep hits...enough of an anomaly that in hindsight there must have been something else going on...like allergies, illness, inflammation.... ...a doc who would say night hits are a determinative symptom in ch diagnosis would also say "women don't get ch".... ...find a new doc.....

MERRY CHRISTMAS 2020!

...when i was young and poor and tormented by the fools at the so called health insurance companies, i dreamed of one day being able to afford a "demand valve" which were (and are?) hundreds of dollars...i got along without....but this woulda been nice..... .....am reminded of the $500 Texas Instrument scientific calculator, big and heavy as a brick, i used to make special trips to the store to drool over with the same "some day" thoughts....now they give those away.. ....nicely done Snowflake...a very practical real world solution.....

.....excessive use of caffeine (and i would suspect that "excessive" is user dependent) is a known cause of rebounds..... .....inconsistent use is a known cause of headache (that i know not the proper term for)....consider the well reported "weekend headache" where the worker drone abstains or greatly reduces typical weekday consumption...and the body cries out and objects to lack of the normal with a "reminder" headache.... ....personal....anecdotal...talkin about me.....over years of dancing with the devil practice.....I found that abstaining from caffeine at ALL times, other than when hit, resulted in fewer hits and improved efficacy when used FOR a hit. the body is a marvel at maintaining stasis...it'll get used to and regulate for all kinds of differing factors. if one regularly ingests caffeine there becomes an amount that is "normal" and effects are dampened.....abstaining and then introducing a large bolus of caffeine as an abortive at least temporarily overwhelms the dampening effect, and the desired vasoconstriction aids in CH suppression (always hit the O2 concurrently, if possible). works for me.....YMMV ....triple strength, HOT coffee used to be my go to...a little inconvenient and hard to get down but effective. energy drinks, kept really cold and pounded FAST became an effective replacement, i think the additional ingredients (taurine, et al?) improved effect...but DAYUM what an awful taste, and SO MUCH sugar or the dreaded trigger, aspartame. the 2 oz 5-hr energy types became my go to.....LOTS of caffeine+, minimal sugar, and easily carried everywhere............ best jonathan

...throw in an energy drink or strong caffeine drink slammed at first sign of hit.....with a box of zomig ns (5 mg) back for abort of last resort and you are golden.... ...D3 and or 'shrooms may make the above moot....

...hi Snowflake.... ....many meds have completely different effects the first time (few times/weeks?) compared to what is achieved ongoing. or, once efficacy achieved, there may still be the "slap backs" we are all familiar with. i would caution not to make a final decision on ketamine based on one experience...especially one where you were prepared and able to abort so quickly (in my mind, what's one more hit aborted out of thousands)... ...you know your body best so these are just thoughts....but i would consider myself fortunate to have the option of trying ketamine in what sounds like an ideal setting...it was never an option for me and many... best jonathan

you're making me nuts spud....ONE abort with O2 will make it a worthwhile "get" and probably eliminate the need for most if not all the meds you've tried/trying.....i can still cry at the memory of the first hit being aborted like water down a drain.... and that was almost 40 yrs ago.... ...imagine doing that with O2...it's about a thousand times more effective... ....used to happen to me....had the O2 tank set up next to bed ...everything ready to go...slap the mask on and crank the valve....3-5 mins later back to sleep. keys: rig ready, train yourself to wake upon hit (it's hard but doable), keep lights off/eyes closed, activity minimal, no angst/anger/adrenaline, try not to fully wake....no thoughts...just breath..... ...yes...do the D3....and water is good best jonathan

...i feel like me and my boy Sherman have entered the "wayback machine"....since i thought this has been general knowledge for decades!? nothing new but a short read. liking the part where they say will spur additional research (ANY research into ch is good research)....but more specifically, if lesser dosages are of sufficient efficacy so as to minimize the well known negative and severe potential side effects of over and/or extended use.... mr. peabody 'Clear Evidence' Oral Steroid Effective for 'Suicide Headache' (medscape.com)

...we understand frustration.....

hi...welcome... ...not necessarily to defend "old man doctors", but i am part of that phrase and i feel like pointing out that MIS-diagnosing young/female clusterheads is just a quick and easy out for them on a LONG list of reasons for missed diagnoses ....all ages, genders and types of docs. few are trained/ know/learn squat about CH. i present as a classic case of CH...both symptom and stereotype.... and still went undiagnosed for years...most of us, sadly, have the same story (i think it's an avg of 3-5 yrs)..... ...be your own best advocate, if you can't find the right ha doc, at least find a doc who is open to learning ...if need be, from you! .....we can help.. best jonathan .

...hi Jennifer....welcome...glad ya found us... ....frequent inexplicable metallic taste in or out of cycle that seemed unconnected to anything (except possibly teeth grinding)..never concerned me, just figured "part of the deal"... ...also...phantom odors....locker room, mold, toast, manure, several more....and an overall enhanced odor detecting facility....since i made my living with my nose it was one of the very few non negative aspects of CH for me. of course, like many other clusterheads, certain odors were a surefire trigger...like zinc welding fumes, some perfumes, and some other strong ones. since CH is a neurological condition, it is not surprising to me as part of CH ....or separate but due to the same etiology...or completely unrelated and coincidental. never discussed with a neuro, haven't seen in the lit beyond the triggering aspect... best jonathan

DD...thank you for your continued posting of these various studies...always fascinating reads and encouraging that there are folks out there like Dr. Schindler who are in the "give a damn" category...because it sure aint for the money....and makes me feel less like an orphan... ....also always cause for a rueful reflection on the short sighted, narrow minded, prejudices that cost us decades of research time, effort, and funding that would have saved a whole lotta folks a whole lotta agony.....

....agreed with everything Pebbles said...doubles or triples supply therefore lowering cost, side effects and rebounds. the tiny insulin needles are less scary (tho not to everybody) and painful compared to the stat dose....and if prefilled, just as convenient (i used to carry such in a stat dose sleeve). until i found zomig ns to be superior in all aspects (save price) this was my last resort abort... ....insurance companies should actually be pushing these for all the above reasons.... but seem ignorant of the product in multiple ways...which is bizarre since the money aspect alone seems to be their driving force ( i long ago abandoned any illusion that concern for patient care/well being was involved in any of their decisions). where i used to get them (costco), the pharm was as perplexed as me... "same drug, same total dose, same price...what's the problem?" ....availability and knowledge of supply has always been puzzling to me....on every CH forum i've ever been on can be found stories of clusterheads being told by docs, pharms, ins companies: these "don't exist, can't be found, not made anymore, or what's that?".... so once again i do an internet search and can find it every time. maybe not conveniently, but were it me, i'd dog hunt it down....

.....30+ yrs here...hundreds of tanks used and thousands of hits aborted....and the ONLY negative was an occasional dry nose...

..hi Dogo..welcome! ....google an image for trigeminal nerve...any and all areas it serves may hurt before, during, and/or after...my oddest aftereffect was that my hair hurt....and i'm mostly bald... ...i'll second chfather's oxygen suggestion....and supplementing with energy drinks or a strong caffeine drink FAST at first sign of a hit helps many.. ...note that vasograin contains caffeine so that helps...but it may be affecting sleep and a need for sleep aid...have you and your physician discussed melatonin...many find it helps with night time hits... best jonathan

...hi Mezzo...welcome.... ....most find that 2-3 mg of suma is plenty to abort a hit so if you hack the stat dose you can double or triple the effectives doses and avoid the HAMMER that is 6 mg...not sure if available anymore but there used to be vials where you could draw up and inject with insulin needles the amt you need...ask your pharmacist if these can be obtained... ....at one time i obtained 18 doses/mo by way of a letter doc wrote to insurance company...called a "letter of medical necessity" ...the phrase "intractable cluster headaches" was advised by an insurance broker as 'magic words".....helpful to point out to doc that ins company is practicing w/o license and changing his/her script!!! ....same neuro once prescribed suma and zomig nasal spray (5 mg) at same time...she knew the games ins companies play and was not happy about i(ins co approved w/o question)....be warned tho...VERY IMPORTANT not to mix different triptans within 24 hr period... ...i found the zomig ns to be far less harsh than suma, few if any side effects, no rebounds, and longer lasting...only one way for you to find out if true for you... ...with OXYGEN caffeine and possibly D3 there were far fewer times i needed a triptan....so was only a last resort option...spiny is absolutely right....should be avoided if possible... best jonathan

Wow...yes! ...for many years now... from many sources I've seen that meditation (and other "mind tools") is useless for ch. sometimes the dismissal is aggressive. I find this to be short of sight and narrow of mind. meditated every day for every year I've had ch... didn't reduce or alleviate one single hit... but instrumental in maintaining my sanity and will to carry on between the hits...

....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