jon019

...wow...cool....quite specific instructs.....comes up in the treatment option section but not on a forums search....

...hi Timothy...sounds like you got a winner neuro...that's a good get as they are hard to find... ...agreeing with CHf re lidocaine...typical is 4% solution from a compounding pharmacy. definitely worth a try but a very awkward procedure, especially so in the midst of a hit. delighted she referred you to CB but not sure why she thinks there are instructions for use...never seen such here... ...get the O2 yesterday....tis a life changer... best jonathan

...if you can work out the O2 supply and a regulator (Amazon, Alibaba, Flipcart?) it may make your triptan pursuit moot.... ....imitrex statdose pens are quite easy to use....you don't even see the needle...remove the safety, press the button...look for a version of less than 6 mg... ....using vials of imitrex you can inject only what you need (2-3 mg for many) with insulin needles....they are small and virtually painless. one abort and you will not be worried about injecting being a problem anymore... .....the nasals work best with proper technique...plug opposite nostril, tilt head back slightly, inhale GENTLY as you press plunger. if it drips out you need to inhale more, if it goes down your throat and tastes awful, inhale less. this too will become rote with enough use (hopefully minimal because O2, energy drinks, busting, and/or D3 regimen render triptans a fading memory).... best j

...absolutely no reason to just ride out hits if your prevents are not working.... or you are having breakthroughs. just be cautious on overuse...not heart healthy and can cause rebounds. sorry if i missed, is O2 not working? .... as others have said, orals are useless as abortives....however, some folks who know their cycle and hit pattern well are able to use as sort of a prevent to get some sleep or for pf time for an event.... ...re nasal sprays...i don't think it's a waste to find if something works...or doesn't....is equally valuable info either way. Zomig NS (5 mg) was my go to as abort of last resort...no side effects and a long pf window. also easily and unobtrusively used... ...the reports i've seen indicate that many folks can successfully abort with less than 6 mg...which is a big HAMMER. 2-3 mg worked great for me and many others with fewer, if any, side effects, less chance of rebounds, cheaper, more aborts per script. hack the stat pens or better yet, vials and insulin needles.... best jonathan

@FunTimes....that sounds like "rebooting" the hypothalamus.....i never thought to try. i'm wondering if a visit to a sleep therapist might be in order for some of us. perhaps light therapy as another form of reboot...

.....got pretty good at knowing when it was "safe" (no shadows, no symptoms of a hit w/o pain, gut feel).... but the few times i missed, O2/energy drink didn't work and i had to go to my abort of last resort: Zomig NS, which worked 99% of the time no matter the causation. no recollection of any one-off trigger kick starting a cycle.....

@elSchreib...OXYGEN OXYGEN OXYGEN....from a tank, not a concentrator, with a non rebreather mask/mouthpiece/demand valve at minimum 15-25+ liters per minute. an energy drink/strong caffeine downed at the first sign of a hit increases effectiveness for many. stay on for 5-10 mins post hit. decades of success for me that saved sanity (perhaps life) with NO side effects, NO rebounds, mostly quick aborts, cheaper than Imitrex, way more portable than one would think..... ....have no experience with Wim Hof breathing...certainly worth a try. some aspects kinda what i did (personally I'd combine with O2.) .... this cluster journey changed DRAMATICALLY for me when I discovered (by painful experience doing it WRONG) that using the O2 with slow, DEEP, meditative breathing, reduced my anger, agitation, angst, overheating, and excess adrenaline. all contributing to successful hit aborting. many find that a hyperventilation technique is the most successful, others breath and hold......sometimes i would combine all 3. try 'em all...point is: there is no "right way".... ...check out the D3 regimen....it's good fer ya whether you are a clusterhead or not... regards jonathan

Location map (lincare.com) UTAH shops ...although mixed reviews for Lincare in the CH community ... they are ubiquitous and it all depends on the shop mgr you encounter anyway, no matter the supplier....overall they served me well (especially the techs and drivers)... .....even if you don't have insurance or ins balks....with a prescription in hand, from a headache specialist doc (or a PCP who is willing to learn/listen),..... sit down with the O2 shop manager with an offer to self pay. in some cases this is even cheaper than insurance. cheaper yet, a fallback plan of welding O2....just don't tell 'em ya gonna breath it.... ...if you will be travelling, Lincare has a "travel program" where you can arrange O2 at your destination...i successfully used this for OK, CA, NV, WA... ...dunno your history, but don't let anyone push a concentrator on you.... best j

.....i am of the firm belief that one should go with "gut feel", you know you best. even if things turn out unwanted or not as expected, the mental anguish "savings", in my experience, are worth it.... ....whether to bust or not with viral illness going on is a very good question that i don't recall seeing discussed here. there has been much discussion over the years, in various places, that illness/inflammation/allergies/trauma are fodder for the beast....so having covid is likely to make matters worse. hoping others can share actual experience...

....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!