jon019

Hi Jonathan, thanks for your response. Yes I've tried energy drinks the past years but found it made it worse. I don't suspect the coffeine / taurine or else but rather the high amount of sugar being a problem for me. Sure there are zero/diet versions around but same here, maybe the artificial sweeter isn't well tolerated. ...since low blood sugar was a trigger, i relied on the hi sugar content (RIDICULOUSLY high, methinks to cover the disgusting flavor) for a bit....but it was just too much so moved to the sugar- free, except for aspartame versions (vasoactive and also a personal trigger.) eventually landed on the 2 oz 5-hr energy type (with sucralose). no reaction to this artificial sweetener, highly portable (allowed on planes!), more caffeine/taurine than most, and easily/quickly downed.... For coffee, I am a coffee lover (black and strong) but unfortunately it also seems to rather kick something off then help. Out of cycle I get sometimes shadows after a coffee so jury -for me- is still out . ...caffeine/energy drinks between hits was a trigger (no problem out of cycle, same as alcohol). however, when saved as a heavy dose "jolt to abort" a hit, proved quite effective... Agree on the gut feeling part. Interesting what you say, it goes a bit in the direction what I meant in terms of allowing an attack to build up. Challenging to not miss the sweet spot though. ....yup, goes against all hard earned experience and a definite tightrope walk....fortunate for me it was rare and i knew right away if it was gonna be one of "those" cycles... Best

.....are you using caffeine/energy drinks to aid the O2?....I found it improved effectiveness dramatically if powered down immediately when a hit felt.. ....i am also one of the advocates of hitting the oxygen immediately and paid the price often if i could not get to the tank soon enough....BUT, over the years there were cycles where i HAD to WAIT until the hit got to a Kip 2 (not 1, not 3+) for it to work...and it would. strangest damn thing that i found by accident, after much panic that the o2 wasn't working any more. I have absolutely no explanation for it, but I do know that clusterheads have an innate feeling for their own cycle that others can't fathom. go with your gut.... best jonathan

ABSOLUTELY!....

...living between the hits has always been a goal....sometimes thought it actually harder (for me) than during a cycle.....as there is no enemy at the gates to motivate my anger/determination. when a cycle ended....chemically or naturally....depending on how soul sucking it had been, i would eventually do a "beer test". got pretty good at knowing when "all clear" even w/o that.... ....after that it was f**# minding the triggers...got a life to live. then one day, a trigger will indeed trigger....so it's wash-rinse-repeat..... ....but, i'll repeat...living between the hits and acting like just another regular person...the beast takes enough...it can' have that..... best jonathan

hi Leo...welcome to the boat.... ......aspartame is vasoactive and a distinct trigger for me... same as MSG in all its ubiquitous, mostly hidden forms.....none of the other artificial sweeteners, like sucralose, but folks with sensitivities to such would not surprise me..... ....have always believed a log of CH hits and cycles...recording timing, weather, location, and what you were doing and ingesting preceding same... can be determinative in narrowing down one's particular triggers. know of one doc who uses as a diagnostic tool the fact that cluster patients seem to do logging almost compulsively. makes sense as we try to figure out the beast...... best jonathan

...hi MF...welcome... ...oh absolutely....and combined with a ciggie post hit was the closest I could get to a buzz while in cycle. never knew if it was endorphins from pain, physical exertion (I was VERY active)....a reaction to excess adrenaline dump....or some kind of psychological relief high. what i did notice was that the longer my ch "career" went, and the lesser my anger, agitation, physical activity, overheating and stress became.... because i learned how to deal: (OXYGEN!!!, energy drinks, D3, meditation for mental health between cycles....and actually going from ECH to CCH) ....the lower the level of euphoria post hit i experienced. would make that trade ANY day.... ....there has been discussion....a number of yrs ago.... at clusterheadaches.com.....not sure how much can be said about post hit euphoria that's worth a deep dive, which is probably why it's an uncommon topic.... best jonathan

...sorry you need to be back....but we all appreciate check ins to let us all know how family is, motivation to maintain vigilance, and reports on methods of dealing... ....could very well be that chill (ill?) winds a trigger.....could be the weather changes that bring those winds. noticed one time that nearly every time i was driving to the O2 shop i was wearing sunglasses. initially thought it was the bright light causing hits or the cycle....turned out, it was the RAPID change in barometric pressure (Pacific NW) that brought that sunshine. Lo pressure or Hi pressure no problem.....it was the rapid change. You can stay out of the wind, but ya can't hide from the barometer....sigh.... ....you may need to up your D3 for a short time and/or add in an old school anti histamine like benadryl for a bit....tis springtime, where the weather is unpredictable and the pollen isn't.....

...i think that's still the case....although we hear of occasional work arounds or different interpretations by different offices....hoping someone else can comment more positively... ...still, that's pretty damn rude of Apria to just drop a patient like a poopy diaper....ask them about self pay, if ya got a script there should be no reason for them not to accept. cost of course would be determinative. i did this for many years when my ins company did not cover O2...turned out the out of pocket cost to me was exactly the same either way. made sure to maintain a face to face relationship with the O2 shop mgr...making me a person and not a file... ...your other option would be welding oxygen, which is the same dang stuff, just don't tell 'em you are breathing. in the long run probably cheapest alternative... just have to deal with the hassle factor...

.....sorry, asking Chris....he's in NYC.......

...absolutely @Chris Moore!...and MANY thanks to @Bejeeber for pointing out the tele-med possibilities....i smack my head, well, more than usual, that it never occurred to me... ...these are the states Dr Ravitz covers: California, Colorado, Florida, Georgia, Michigan, New Jersey, New York, North Carolina, Ohio, Pennsylvania, Texas. ...she's in Manhattan....do you know of any local clusterhead patients of hers.... and their thoughts?

...i am gobsmacked...for yrs we here on the cluster farm have bemoaned the lack of access to such.....WOW this never occurred to me either....this might be a game changer!

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