jon019

...well...that explains why the arrogant prick anesthesiologist blew me off when i PLEADED with him to forgo the epi for my own "head" surgery...he at least coulda told me the above.... .....good news/bad news from this clusterhead if ya can't talk 'em out of it: did NOT trigger a cluster cycle...did wake up to a one-off 6 hr kip 8+ hit ...you know it's bad when you are scaring ICU nurses.....drained the hospital O2 to no avail and they wouldn't give me triptans.... ....if i was yu i'd keister a Zomig....

...hi Mox ....have always thought there's gotta be some kind of brain chemistry alteration going on...pain hormone driven or actual headaches mediated. post a CH hit the euphoria was welcome but short lived, then the beat with a 2x4 exhaustion. no brain fog, but perhaps the other side of same coin, as cumulatively during a cycle i found that my mind was actually sharper/more focused. used to do a lot of writing for work and i "almost" would hope for a cycle when i had an important project. i look back on some of the things i composed and wonder "who wrote this!?".....cuz it was better than I knew... ...dangdest thing.....and just a guess, but have you considered low blood sugar or other nutritional issues? best jonathan

...yeah, stress hormones....i think mainly this one since it is slower but longer acting....but adrenaline and norepinephrine too. Cortisol What It Is: A steroid hormone, commonly known as the stress hormone, produced by the adrenal glands. What It Does: It takes a little more time -- minutes, rather than seconds -- for you to feel the effects of cortisol in the face of stress, says Sood, because the release of this hormone takes a multi-step process involving two additional minor hormones. First, the part of the brain called the amygdala has to recognize a threat. It then sends a message to the part of the brain called the hypothalamus, which releases corticotropin-releasing hormone (CRH). CRH then tells the pituitary gland to release adrenocorticotropic hormone (ACTH), which tells the adrenal glands to produce cortisol. Whew! In survival mode, the optimal amounts of cortisol can be life saving. It helps to maintain fluid balance and blood pressure, says Sood, while regulating some body functions that aren't crucial in the moment, like reproductive drive, immunity, digestion and growth. But when you stew on a problem, the body continuously releases cortisol, and chronic elevated levels can lead to serious issues. Too much cortisol can suppress the immune system, increase blood pressure and sugar, decrease libido, produce acne, contribute to obesity and more. "Ducks walk out of a lake, flap their wings and they fly off," says Sood. "When you face something stressful, particularly if it's not likely to repeat or doesn't have a huge long-term impact, you want to be able to shake it off and move on with life."

......never made any difference either way....would quit during cycle, between cycles...sometimes for months. the only direct effect i could ever discern was smoking during a hit was nucking futs....would raise a hit level exponentially. counter intuitive as far as i was concerned. as nicotine is a vasoconstrictor and shoulda helped. of course, there are 999 other nasty components that must be considered....

...missing one dose and having breakthroughs sounds like you've found the bottom of the effective dose for you....called titration. is GOOD to know... ....240 is on the low end.....most reported effectiveness is 320-480 mg/dy in DIVIDED doses (through out day). for me, anything below 480 was useless and i went up over 1000 in high cycle. not recommending that high, just reporting experience and observation of these forums... .....verap is a very dose dependent med for CH control...clusterheads can tolerate doses that are way above that needed for blood pressure control. scares docs who are unfamiliar. hoping yours is not reluctant to up your dosage...just one more notch (80 mg tabs) to start would seem prudent... ...depending on your cycle you may be able to ramp back down in between.... ....there are those who feel stop/start results in ineffectiveness in the long run....this should be discussed with an experienced hedache physician. my cycles too close together to determine personally..... ....since it can cause heart rhythym problems is always a good idea for a baseline ecg and any time dosage increased. .....extended release is reported by many clusterheads to be less effective than immediate release...xr never worked for me but that could well have been that blood levels not high enough due to slow release. even if you and your doc decide not to increase dosage, you should try the immediate release verision... .....if you know your cycle hit times you can time doses to several hrs before anticipated hit. it's definitely a crap shoot, but on occasion i'm sure it helped...not really possible with xr... .....feel free to pm if you want to talk about off line... best jonathan

.....what's yur dosage? ....timing of doses....just the one? ...immediate release or extended?

....good luck! years ago i was the patient of a research neuro that did early studies on botox for migraine. she told me they were delighted with results. had asked to be included in the study....cuz why not?.....she told me "oh sorry, it doesn't work for CH". i sadly smelled money as the market for M beats CH....sigh. keep us informed, i have heard of it helping some of us.....

...hi mr w, ...stress or coming OFF of stress are CH triggers for many. during an ECH cycle, coming off any significant stressful situation was almost a guaranteed hit for me....staying stressed was (tho less so) preventive. my speculation that it's changes in hormonal (cortisol?) or other physiological systems. CH hits or cycle never seemed connected to my pscyhological well being..... no matter what that was.... .....CH changes...it just does...not necessarily indicative of any significant health changes. one thing it is NOT is a psychological illness....ya can't think it away...have never seen any reports or literature reporting so. just "well meaning" folks who tell us "it's all in your head".... .....i stopped years ago trying to explain my CH to anyone beyond: "REALLY bad, disabling headaches"....anything more and eyes glazed over. how to describe the indescribable is above my pay grade.... best jonathan

.....ummm....welll.....if you bust every 2 months you might just get that year....and more.... .....i used the triptan zomig nasal spray (5mg) as abort of last resort (carried on person at all times).....no fumbling with needles or injectors....a simple press and inhale. worked better for me than imitrex.....

.....yup, ya gotta learn to play mind games.....during a hit i used to focus on the cigarette i was gonna have after.....it was always the best smoke and one of the better distractions to get me through. quit smoking 8 yrs, 5 days, 4 hrs and 12 mins ago......but i don't miss it.....REALLY!

hi Eli, ...i assume this is referring to mushrooms or some other busting substance? ....postponing a cycle would have had me doing the happy dance every day til the next cycle...and i used to have one every 6-8 weeks...even avoiding ONE hit was cause for celebration... ...busting is not a one off deal....folks who bust determine dosage and frequency based on personal experience. if you get 2 months "free" for each bust then your periodicity of busting is evident... ...sorry if i'm missing something...just really puzzled why you would not pursue this further....you are on the right site for insight... best jonathan

...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!.....