jon019

Did You Ever Have To Make Up Your Mind - MonaLisa Twins ft. John Sebastian - YouTube ....interesting first post 'kitty...wanna tell us a little about yurself?

......now i got no qualms....you need a new neuro....a headache specialist .....anyone with ANY knowledge of CH knows you don't let a clusterhead just ride these out w/o rescue meds (oxygen, triptans, ergots, ketamine even....)....there's a fricken good reason they are called "suicide headaches"...SHEESH, this pisses me off..... ...in cases where diagnosis is undetermined/questionable it is not at all uncommon for an Indo trial to rule out HC.....when/if it works it's like a miracle....(EDIT to add: and another reason for a specialist is to get the right dosage...too little and you think it doesn't work when it may be "THIS" dosage doesn't work...)

...see the attached Kip scale...a beloved fellow clusterheads interpretation. it doesn't fit mine, but bear in mind the typical pain scale you'll get at the doc shop doesn't represent us either. it's importance is as a reference...kind of an "in reference" that clusterheads of an era used (use) to talk to each other in the same language.... The Kip Scale (clusterheadaches.com) ....there's really no way for us to gauge how O2 is going to work for you....timing/flowrate/breathing techniques/etc....took me hours of sometimes bitter experience to figure what works for me.....then it changes and ya start learning all over again.... ....a few basics: get yourself a non rebreather mask (no holes/bag attached, see ClusterO2 Kit - Clusterheadaches.com - Online Store ) so you are getting 100% O2, start out with higher lpm flows (15-25+) and work your way down til ya find the sweet spot, if any. try various breathing techs like hyperventilation (most popular), slow breathing, breath and hold, a combo. most find it important if not critical to start at the first sign of a hit. many, like me, are benefitted by same time quick downing of an energy drink (min 120 mg caffeine/1500 mg taurine).....and staying on O2 for 5-10 mins after a hit aborted. since you are unsure when to start, you are just gonna have to try.... and record/remember your results. in my case, i put a time limit of 20 mins on any attempt because by then i knew it wasn't gonna work....and no sense wasting O2. in reality, i would probably stop sooner because i just "knew" ...and cannot explain how...you'll know......

...food for thought....sorry for the hijack... ....if redbull works and he likes it, then fine...as the saying goes "don't mess with success"....just note it has lower levels of caffeine (less than strong coffee) and taurine than most other brands..... is WAY more expensive (you're paying for advertising)....and tastes like dirt...bleeech! ....do a google search for levels in all brands. my favorite large can was "Wired"....16 oz with 344 mg caffeine and 3200 taurine...half a can or less worked just fine. while low blood sugar a trigger for me, it proved to be just WAY too much (all of 'em, must be to hide the taste). have to be careful of the sugar free versions as aspartame a trigger like msg. switched to the 2 oz 5-hr energy types...most use sucralose as sweetener...goes down quick and is easy to carry anywhere (like on a plane)..... ...have never paid more than $1/can or bottle for any at a grocery outlet or dollar type store.....and that's sticking with the major brands for peace of mind....

...ok now....yee-haw getting the good stuff in place.... ...oxygen saved my sanity...perhaps my life...used M60 tanks at home and e tanks in office/car. just saying so ya don't feel trapped at home...dunno sizes of welding tanks but there's lots of folks here can comment re availability of smaller sizes.... ....my best outcome was to hit the O2 at the FIRST sign of a hit....delaying even for a short time increases the chances it won't work and puts doubts in ones mind...we don't need that crap. a double/triple coffee or an energy drink with at least 100-120 mg caffeine and 1000-1500 mg taurine (2 oz 5-hr type is quick and portable) just as quick increased the effectiveness. staying on for a few mins after killing the hit helps many. there are various breathing techniques....hyperventilation (really hard and fast in/exhales) has a lot of adherents. i found that slow in and out was as effective and helped calm me down.....anger and adrenaline and overheating are the enemy. at other times breath and hold worked. point being, don't get hung up on the "right" way...aint no sucha thing. the right way is the one that works for you....try them all. in different cycles different techniques worked for me...sometimes within the same hit... ....let us know how you all are getting along...we care.... best jonathan

....depends on the time frame.....first yr a slow ramp up (tooth pain only) , next few yrs peak ass kicking..... then slow ramp down next 20.....at which point went from ech to cch. chronic responded better to all aborts and hits at lower levels (still woulda killed a civilian, but i digress)....currently near daily shadows but only rare actual hit. get your plan of action and attitude in line, have the tools on hand or easily accessed, and be prepared to zig when the beast zags...you'll do fine.

...i think Charlie ("Sir Charles") made it that long....gave a lot of folks hope and help....

....sorry that i can't answer your first question...it's the quest for the holy grail..... ...re "last ha in cycle".....absolutely could.....it was the worst of the cycle.... not a 10 but a pointed pain i can only describe as "exquisite" and unique. i actually prayed for that hit as i knew what it meant. depending on how thrashed i was i would wait 2-3 days for the beer test...2 weeks if my resolve had been too hammered........................

...yeah, i know, it aint gonna happen officially. we've pretty much always been on our own...or what's a Clusterbusters for? citizen science that DECADES down the line might get a mention like "yeah those alt medicine cluster folks were onto something".....................

...thank you...fascinating....can see as an important tool in psychotherapy... but begs the question, and another study....does it also block the beneficial effects for CH? ....still, without availability of bol-148, a potential option....

...yeah, would seem any placebo in this type of study would have to have some kind of psychoactive effect...and recruitment would have to defer to "inexperienced users" who would not be able to discern "type". have experienced the niacin effect...rather unpleasant but no psychoactivity....

...hi Kat...can't speak to the effectiveness of amovig or it's effect on busting, but have been in clinical trials for another condition .. ....if you can work it around a busting schedule, or are willing to pause busting if need be, i would strongly encourage participation for the following reasons: ....#1...with a bullet...it might work! ...if it doesn't work, you have identified yourself as a potentially willing trial participant, for a defined condition, and they already have all of your pertinent personal data. recruiting for trials is a tedious, difficult, expensive undertaking....making participants a valued "commodity". once you are in the system, your chances for future opportunities goes way up. (added note, another one of the reasons i always encourage finding a HA specialist...they have knowledge of/access to trials...) ....Pebbles is absolutely correct...and the cost:benefit ratio may not work....but trials are ridiculously expensive and the sponsors motivation can be to your benefit...sometimes free, sometimes at reduced rate/couponed, sometimes you get access to meds that others don't (primary and adjuncts)... ....for the same reasons (trial sponsor cost/efforts/rewards in money and treatment successes) trial patients are treasured and (at least in my case) get boutique level care....with a care coordinator. means immediate access to docs and appointments and referrals and lab/procedure results and and and. careful, it might spoil ya to the regular assembly line..... ....trials are no guarantee of any better result than "standard of care"....that was the case for me. however, the information obtained is priceless to researchers/providers...finding out what doesn't work can be just as important as what does. the information obtained can be used to direct/redirect future efforts.....and the knowledge that you might be helping someone else down the line can be REALLY rewarding..... best jonathan

...point taken devonrex..... your situation breaks my heart and i mean no disrespect.....there are no absolutes for clusterheads.... ....sometimes the decades of frustration with the medical community and insurance companies that have failed us through indifference and ignorance gets to me.... i find it especially hurtful when some of the tools that help so many are unknown, misused.... or thrown at us in a useless manner.....and an opportunity to save so much anguish is lost...

...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

......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.....

...dang drewbie...this sounds like a mess...sorry to hear...just a few thoughts... ....O2 worked for me "most" of the time... and while there were times when i felt like i was experiencing an O2 rebound, it was thankfully rare. my hindsight belief it was having to do with an allergic reaction or system inflammation of some kind... which precipitated the hit and remained active irrespective of the O2 working on the hit at hand.... ...if this is an allergy mediated...a course of benadryl (diphenhydamine) might be in order ...somewhere between 25-100 mg/dy for 7-10 days...worth a try, just be aware of drowsiness effect. if an inflammation, a course of prednisone or methylprednisolone may be in order ...normally i hit O2 at FIRST sign of a hit (plus an energy drink)...and advise same for all....but for reasons I totally do not understand there were cycles where it became quickly evident that either O2 no longer worked, or the hits just kept coming back, UNLESS i waited til the hit got to a level 2 (one notch beyond a shadow for me). scary stuff, but it was frigging amazing as the the O2 would then work just fine.... ...i know this is difficult to contemplate but, as bad as CH is, there is no guarantee clusterheads don't have another form of HA. when i hear that O2 AND imi are not working....tells me might be something other than CH going on....worth a consult with your ha specialist... ...i completely understand the "letting a hit play out"....been there too. one of the reasons i've alway felt the beast is an entity with evil intent is that sometimes just seems "it" must be placated. am sure there's a physiological explanation, but................ best jonathan

hi Amos...welcome! ...well...yikes...i can't imagine you DON'T have rebounds...so i'll ask first: have you tried/considered alternating different triptan like Zomig nasal spray (separated by 24 hrs)....effective for some.. ....OXYGEN ??!!...if you've tried we need to know how (source/flow/mask/technique)?...life changing in my case.... ....how about the D3 regimen.....cheap, easy, beneficial beyond ch, high success rate...eliminates the other meds... ...then, of course, there is busting..... best jonathan

oxygen info Clusterheadaches.com NEW Message Board

welcome dave....OXYGEN?

Episodic ch......Chronic ch....

......seeds, spores, grow kits....not L or M....

....took me 8.....keep looking....they be out there......

...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.....