jon019

.....a headache specialist is absolutely critical....most neurologists don't have any more knowledge about CH than any PCP. i had brain surgery (not CH related) from a highly skilled neurologist... who saved my life. out of curiosity and to amuse myself, i later asked him about CH. his response: "don't they use inderal for that?" yeah doc, about 30 years ago...he also had no idea about O2 as an abortive. same lack of knowledge from 4 or 5 previous neuros...and one even diagnosed me (WITHOUT telling me) as having "basilar migraine"...i don't even know what that is...except NOT! ....what immediately struck me in your post was the seeming diagnosis based on previous notes...sheesh and DAMN! i now sign up for every mychart from every provider...it's YOUR info. and it's plainly evident from BoscoPiko's description of her experience that a forthright, direct, face to face relaying of the nightmare that is CH can go a long ways with a provider able and willing to listen...

...yup ...they call him MISTER Tibbs...or rather "Master Member" for a reason.....

....yup, same for me over the years about half the time because some insurance providers covered and some didn't. some O2 shops are stubborn about this and you may need to shop around....go talk to them in person so you are a face and not a phone call. funny (not ha ha) turned out that self pay or ins copay was exact same $ out of pocket. still, there are advantages to being covered, as it means your diagnosis is more recognized in the system (insurance and O2 shops) and that could be important down the line. i'd start out self pay then work toward coverage. an advocate doc (find a headache specialist if at all possible) in the process can be critical, as a "letter of medical necessity" can (and did for me) change denials. and always, ALWAYS, ALWAYS APPEAL any denial from an insurance company...always seemed to me that the first denial was automatic and they were hoping you would just go away... DON'T. and besides the doctors note, provide any documentation of medical lit/research supporting your claim (e.g. oxygen along with triptans is medically recognized as THE primary abortives(s) for CH).... and besides, O2 is WAY cheaper than triptans, w/o the rebounds and nasty side effects......

... this made me smile cuz i been there... once was lead on a critical sales presentation to some very important clients.... was seated between company President and VP having to prove myself to them too. a hit started right when i did, and quickly got to an 8...there was NO out, i just had to keep going for 45 mins. when the tears started leaking hit side i turned my head so they wouldn't see. might have been the bravest thing i ever did in my life..... and i have no recall of anything i said.... but i made the damn sale! they might have wondered why after the handshakes i ran out of the room tho...... .. thanks for sharing... triptans have their place... i never go anywhere w/o a Zomig ns..... but only as a last resort abort for years now. too many of us know exactly what you experienced.....

... yeah.... he's wrong! .... crap like that is what makes FB such a dangerous minefield for clusterheads... mixed in with that absolutely essential care, compassion and vital info is stuff like this that does a disservice.... especially to the folks new to CH and those w/o the time, desire, ability, means or motivation to go in depth. i mean no disparagement to the many good folk on the many sites... and i'm there too.... but the info is just so scattershot and unreliable it's scary.... with much difficulty checking the bona fides of the poster or researching a topic.... ... the pioneers of busting figured a better way.... the info is right here.... and the Yales and Harvards of the world are finally getting on board.... .... if the anecdotal reports from thousands of clusterheads on the dangers and consequences of overuse (even "proper" use) of triptans isn't enough.... it's right in the medical literature and on the dang label/insert of the script!

....ummm.....same here ^^^^^^^^^ ....the advantage of a bag is a reservoir of O2...no waiting. i suppose if flow is high enough that wouldn't matter, but potential waste of precious gas thru blow by.. ...many use the Cadillac of non rebreathers from sister site clusterheadaches.com...this their store...cheap at any price, but $30 a screaming deal (and i aint got no financial connection ) ClusterO2 Kit - Clusterheadaches.com - Online Store

...nose breathing ok INSIDE a mask....the caution if mouth breathing with tube....dilutes the O2. ....the breathing you describe for anxiety was similar to what i did to calm the frantic panic of a bad hit....which only made it worse. when adopted (part by accident...part by "there has got to be a better way!")...the effectiveness of O2 then dramatically improved.... ...my experience with low tank volume was the necessity to monitor the resulting decreasing flow volume...actually was a nice distraction to focus on and crank up....that or pounding my head with whatever hard object was in reach, at least til i figured shit out.... ...never tried but some report better success with a demand valve (can be expensive)...provides plenty O2 while, at least theoretically, saving O2 ...plenty of incredibly sadly funny "info" on some FB forums....at least here it's easier check out our (my) biases/history...

.....are there any holes in the mask? tape 'em/plug 'em....you want pure O2 with no room air mix... ....make sure flow is high enough for bag to refill for next breath....you don't want to be waiting... ...some find breathing directly from tube better...just be sure no nose breathing while using mouth tube... ....downing an energy shot (2 oz/5-hr energy type quick, easy, no sugar) on the way to tank enhanced effectiveness immensely for me.... ...absolutely critical to start O2 immediately upon perception of hit...stay on after for as long as it took to abort...if i waited or could not get to tank quick enough there was a point where no amount of O2 would work. since it is best to avoid triptans as only a last resort abort, learning your hit "tells" is vital. is not always obvious to the clusterhead as many report that others around them can see a hit coming before they do....weird but true. ....hyperventilation (some start even before getting to O2 tank) is reported best method....others (me) find slow DEEP breaths just as effective with added benefit of calming effect....another is breathe and hold. try various methods to see which works best....a combination worked best for me (slow/deep/hold..repeat), sometimes within same hits.. ...no, reliable sources of medical/welding O2 will not give you "bad oxygen"....note that scuba tanks are compressed air, not O2 on the off chance this is what you're using... ...schedule changes are poison to clusterheads....a sadly limiting factor for many....i had to maintain very specific routines...especially sleep and eating (low blood sugar a trigger)...

...hi ft...welcome! very interesting post...thanks, herein my comments... Cluster Headaches has no triggers. ...gonna have to disagree....aint no absolutes with CH except the pain. lotsa triggers for me...., but, like you say...when IN cycle They attack in regular intervals. ....definition of CH....then it changes... Certain foods and alcoholic drinks will make the attack periods last longer and the headaches much more intense. .....naw, not for me.... 35 yrs....a hit was a hit no matter the cause... A headache that last 10 to 15 minutes with a beer in your system might last a few hours. ...if my hits hits were 10-15 mins i wouldn't even be posting....90 mins every damn time....tho several cycles the hits were 0-10-0 in 2-3 mins, i was very willing to accept that over unaborted 90 mins.... Alcohol and chocolate for me can trigger an attack while in a cluster period - i got ralnot while I am in remission. Alcohol is the worst. Avoid it at all cost while going through a cluster period. All kinds. Alcohol will only make things worst. YUP! Eats dry soups and teas often. Stay hydrated. ...absolutely but watch them dry soup mixes.....lots with msg (massive trigger for many) in various hidden forms. hydration is critical for CH and many other issues.... Responsibly consume caffeine such as hot coffee. It helps; each individual might have to figure out how to use coffee for their own selves. ....caffeine at the wrong time for me was a trigger.....as an abort ONLY, in the form of 2 oz energy drink, vital. folks really do need to figure this.... A warm shower during an attack can help.LY, i ...hottest setting i could stand on hit spot helped as long as i could stand....hit was back full force when stopped... Relaxation is also needed. ....a trigger for me....20 yrs of hits 20 mins AFTER work stress stopped nearly every day. relaxation in the form of deep/slow breathing of oxygen at first sign of hit, enhanced with energy drink was my salvation... Stress does not cause clusters; stress causes the attacks to last longer and makes it take longer for us to return to remission. ...different strokes for different folks...stress was ALWAYS a prevent for me.....cortisol/adrenaline? dunno. my longest remission was while caring for Ma her last days...and will executor. days after that 5-6 months....BLAM! hits were back to "normal" If you are an anxious person pre- and post cluster periods you may be subject to panicky feelings; panic attacks. This is part it this disease. The pain is intense and during periods you had then will executorve to take time to deal with your feelings so that you can expedite a return to remission. ...the mental aspects of dealing with CH are incredibly important. i considered maintaining sanity thru this nightmare as a lifetime achievement.... You have to remain active and have a regular sleep pattern and wind down after activities slowly - never to fast. ...ok...i walked 5-16 mi/dy on the job, which felt great, but not any effect on CH. maintaining a consistent sleep routine, actually any routine, was very important for me.... I had not had an attack since Oct. 2021 until a little before Christmas Day 2022. I am about three weeks into a cluster period now. Sometimes I get about 8 - 10 attacks a day imainly at night and some early in morning around 9:00 am. Most lasting about 30 minutes and some lasting longer up to 3 hours. I have had these a long time, about 20 years and can share remedies that might helpful to people. Thanks for listening and have a wonderful day. ....do you use oxygen? life changing abortive for me. please do share, we depend on it... best jon

...look up OXYGEN and/or Durable Medical Equipment for your area. Lincare and Apria are several of the major players....some pharmacies carry O2 but the options are limited and prices higher. don't let anyone talk you into a concentrator...not pure O2 and not enough flow for most...

Cause= wonky hypothalamus, ain't no fixing a deep brain issue...yet. but we can manage the effects....

...too bad...like Jeebs said...an old one with limited success. gets tried when "nothing else works". some success with infusions that they do in a hospital setting for intractable and constant hits. overuse has such nasty side effects that it has fallen WAY out of favor. your neuro seems so enlightened that this is surprising...

...dang it, bad berries when one of the kids is down...glad you shared so we can send vibes...

....worth noting that a 2 oz 5 hr energy type drink has MORE than RB of the caffeine/taurine we need.....and is TSA friendly!

.....the vitamin D3 regimen has a far, FAR, FAR better success rate than any of these expensive proprietary supplements...careful not to throw so much stuff at the beast that when you tame it, and you will....ya don't know what did it! leaving you at ground zero for next cycle and the same dance starts all over again... ...really, do everything you can to get OXYGEN ...is life changing for so so many....then strongly consider busting!

...hi be23...welcome....i make no assumptions so some of this may not apply... .....get yourself an Optimask from ClusterO2 Kit - Clusterheadaches.com - Online Store the shop masks are crap... ....your e cart and a 15-25+ lpm regulator from Amazon/Ebay....shop will want to lease at ridiculous prices ...rethink buying "a" tank....you are gonna need at least 3 e's or 2 m-60's. tho tanks don't really expire they do have "expiration dates" that O2 companies have to comply with. testing/recert required periodically..... and they may refuse to refill an uncertified tank and/or private. if you buy ask ahead if they will... ...it may be different now but i refused to monthly lease tanks from Lincare....just did an exchange as needed....worked great. running it by your insurance company may help....your argument being lower cost....the shop more likely to listen to them than you...

...just a different game x...more like chess than checkers...

.....sorry, this is a further thread jack...and liable to be missed by folks who should see it....but, sigh..i need to say..... ....adding a little bit to my "regular" and playing the "game" comments above. it happened to be convenient so i picked up and delivered my own O2 tanks...they loved it, saving them money and hassles.... AND, for me, keeping a face to the "file". also, lugging your own tank(s) with their frigging name on it makes it REALY hard to deny that they "carry tanks". the downside here is that developing a relationship with the delivery drivers can be immensely beneficial. those folks see and hear and "get" the patients at the other end of these tanks. there is many a clusterhead who can attest to delivery drivers going far above and beyond for them. also, never hurts to poke your head into the back room and introduce yourself to the techs who fill tanks and prep equipment..a thank you goes a long ways with folks who rarely see YOU.....

...woo-hoo kat...good for you....clusterheads kick ass!! ...your experience is so NOT uncommon that it boggles the mind. a business whose express purpose is to provide oxygen to scripted patients yet acting like ..."well, but not YOU"....SMFH.... ....ya gotta look at it as a "game"...i guess i learned it from negotiating business contracts, but it is a lot harder to blow off an anonymous caller or paper requestor than a real live (in our case incredibly HURTING) person. made it a point to meet and engage with a seemingly endless treadmill of O2 shop managers..... so they knew me as a person and not a "file". i aint charming, but the consequences of failure were so high i did my damndest.... with pleasant discussions and reams of medical citation documents. not saying this will always work, sometimes the corporate walls are impregnable....but it worked for me more times than not. ESPECIALLY important, just like getting that first HA specialist neuro appointment, is becoming a "regular". once achieved the hurdles can just magically melt away. and if they don't....clusterheads don't give up....the stakes are just too high......

.....did this with Lincare in CA, OK, NV, WA many times with no hassle or extra charge...just remember the mask and regulator.....

.....yup, i'd call ahead...note that it is unlikely the flow will be higher than 3-5 lpm....so that's the first question....

...not sure why a pred taper would be too early 2 weeks in....more likely too late. typical for hits to return after end of taper, so pred is a transition med to (hopefully) break cycle while a prevent (like verapamil) kicks in. 240 mg/dy of verap a low dose...reported sweet spot is 480 mg/dy of immediate release (sustained release lower chance of success). many go much higher...which scares pcp docs but is well tolerated by clusterheads... ....pure OXYGEN (no concentrator) at flow of 15-25+ lpm, with a non-rebreather mask and proper breathing technique (there are various worth exploring) is the best abortive with none of the side effects or rebounds of triptans. an energy drink (2 oz 5-hr energy drink type avoids all the sugar and volume) or other high caffeine delivery method enhances effectiveness....and sometimes works alone. ....a headache log concentrating on cycle lengths, timing (seasons, travel, etc) number/intensity of hits, diet, activities, and weather that seem to coincide with hits can be most helpful narrowing down triggers and enhance planning/warning for next cycle. just be careful..... correlation does not necessarily mean cause... ...there is nothing funny about CH but this: ...was amusing and TRUE! oral triptans are mostly worthless except for very minor hits and maybe sleep aid (Benadryl or melatonin could help there) but daily use could lead to rebounds or cycle extension.... ...i am being redundant for emphasis....this all in the file @CHfather already referred...DO STUDY!

...i'm settling down for a long winter's nap....

.....this is a wonderful gift for ALL of us.....and the timing is exquisite!!