jon019

....why?

....hi IFB...welcome....you've heard great stuff already...if i repeat, oh well... My GP has changed the scrip this time to 15L/min with a non-re-breather mask, which I believe is what you're suggesting i should use. .....some go (much) higher to find relief...don't limit yourself ...the script is just the "ticket to ride"...we each find the best flow that works...nobody else knows or cares what that is. a non-rebreather type is vital...just make sure you are not out running the bag....better yet would be a demand valve or direct from a tube. there are various breathing techniques.....most find hyper ventilating (strong inhale/stronger exhale w/a crunch at the end) the most successful.....others do breath and hold...or, in my case, sloooooooooow breathing (calms and decrease the adrenaline/anger/angst). w/o O2 i would not be writing this...saved my sanity and perhaps life. give it your best damn shot....most successful abort for the most clusterheads. it would be a real shame to suffer needlessly by giving up too soon... My Verapamil was increased last year to 240mg slow release. .....aint enough, that's actually a good STARTING point, the dosage most frequently reported successful is around is 480 mg/dy in divided doses. i went to 1040 in high cycle. immediate release thought to be more effective than slow release...do some research here for the nuances if you pursue. there can be consequential side effects so goal would be to avoid if possible .....tho good to know that clusterheads are more tolerant of these dosages than blood pressure patients... I was taking so much Zomig, that my benefit plan started capping it. Here in Ontario, Canada, the cost is $28 each spray. ...OXYGEN, plus energy drinks at first sign of a hit, plus Vit D3 regimen my best strategy...with Zomig NS (5 mg) as abort of last resort...and rarely needed.... but REALLY nice to have in reserve. in the US they start out with a cap...any more than 6 sprays/month is a raging battle to obtain...pricing similar for me... When I got below 3 boes (of 2). I would literally start to panic that I wouldn't be able to find more. ....STOCKPILE in between cycles...the stuff lasts a long time. best neuro i ever had knew this strategy...too many fights with insurance for her. tho oversuse of any triptan IS problematic...ya wanna get to the point where it's a rare need.... When I first started Cambia, it was very effective. Just like Zomig was at first, but I was told Zomig was to be used at the beginning, not DURING a CH. .....NSAIDS like Cambia rarely effective...tho many find helpful with shadows (Naproxen helped me there, nada for a full hit). danger is gastro issues (bleeding/inflammation/upset) with continual use/oversuse. if using a triptan, the vast majority find that immediately upon feeling a hit is critical...delay tempts fate... Maybe my GP didn't have a lot of experience in prescribing for Cluster Headaches, but I really don't think a lot of GP's have that experience. ...all too true....good reason for sites like this as we usually have to be our own advocates. except for a headache specialist, i knew more about CH than all 8 of my PCP's. my goal (successful or i left) was to find one willing to LEARN...and provide what i needed (mostly an O2 and triptan script)..... As for the energy drinks, is there a specific brand or certain product within a brand line? Or just plan old redbull ? .....buy by content (read label...and more detail available via google search)...nearly all have higher caffeine/taurine content than Red Bull (it's just the most known). i buy brand names at outlet stores for 50-75% off. look for minimum 120 mg caffeine/1000 mg taurine..... I am a little concerned that an energy drink in the middle of the night, I may not get back to sleep? ....clusterheads are different animals....i could down an energy drink and sleep w/no problem.....many report same... Mind you, the quality of sleep after a CH is pretty sh*tty. .....i was exhausted after a hit so no problem......O2 tank next to bed just in case a cycle with the 1 -hr wake ups...

.....yeah, an albuterol trigger wouldn't surprise......damn steroids are so active! if so, stinkin' thing is you did nothing wrong....an appropriate action to deal with your needs.......one that any NON clusterhead could do w/o a second thought or consequences......sheesh. ....try some antihistamines (old school work for me) for spits and giggles too...it IS springtime! ....may the "bust" abide j

....favored m60 and e tanks....found the the m's a workhorse, just crank and breath, thankfully no thinking involved... ....the e's took a bit more "finagling" (a word my dad favored). as the volume dropped (especially below half) the lpm's would follow...i was constantly adjusting the flow upward to maintain adequate lpm. got to where i went by sound, as reading a stinking dial when being hit was not user friendly. in my case, it meant volume left was not a consideration and i used to leave a little in several tanks as a "reserve".....like a scuba diver. the horror movie scenario of a friday evening, empty tanks, and closed O2 shop being one you only wish to experience ONCE!.....

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".....................