jon019

....check your journal...you know, the one you keep on when, where, how hard, how long, activities, eats, stress, weather, etc..... soes you (and maybe a good doc) can figure this out (and then stop journaling)....cuz it sounds like maybe there's "something" happening one day but not the next (like weekend headaches from no caffeine)....we call 'em "triggers"... ....another thought......if yur fairly new to CH it could be your "pattern" has not settled in yet...for some it takes a while (1 yr for me)................

...oh...dang...forgot to mention energy drinks.....minimum 100 mg caffeine/1000 mg taurine at first sign of hit or on the way to O2 tank...great for shadows (small hits) and aborts for some folks...made O2 better for me....

Jon - I’ve heard great things about oxygen therapy but haven’t had the opportunity to try it. If your doc hasn't suggested/INSISTED the "standard of care/#1 abortive"...which is O2... time for a new doc....preferably a headache specialist....O2 has saved lives and sanity in clusterville.... It sounds like it gives moderately faster relief, which would be a godsend. .....how's 5-10 mins 90% of the time for me.....without ANY of those nasty side effects you mention...relatively inexpensive.... easy to use...way more portable than non clusterheads will tell you...can be obtainable by self pay if the insurance won't cover....from welding supply shop if not.......... I have a similar concern about so many medications - id like to know which one works in the future. I’ll see how feasible oxygen is with my insurance. ...a "typical" protocol would be prednisone to break a cycle while the prevent kicks in (10-14 days)...doubling up with two preventives (Verap and Depo) is unusual and I would say lazy...but then I do not know your med history so there could be valid reasons for that (he says doubtfully).... .....what is the verap dose (6 x 80 mg = 480?).....that would be a recognized 'sweet spot" amount...many require much higher (I used over 1000 mg/dy in hi cycle)....if you ever figure a pattern try timing the doses just prior to expected hits... ...if ya gonna use a triptan you'll want injectable or nasal (i use Zomig nasal spray 5 mg) as a last line of defense when all else fails...in my case, the Zomig has few, if any, side effects, no rebounds, and a long half life compared to sumatriptan....pills are worthless as an abortive and require exquisite timing to be at all useful as a prevent.... ...you are in the right place to learn about busting..... ....the D3 regimen could make all of this moot...do it now...it's good for ya anyway.... best jonathan sorry to step on Bof post...typed this before saw that.... totally agree........

Hi Blair, ...where's the OXYGEN!?........... ...that's a lot of rocks being thrown at the beast...careful that when you succeed...and you will...ya won't know which one hit...

...follow the trigeminal nerve pathway....folks have pain in all or some areas....it can and does occur on either side. cannot speak to the pain with pulse....mine and most report unilateral steady piercing/pointed/ burning/pressured... but we all be different....

.....for me the scariest thing a doctor can say is "I dunno", and that's certainly what I'm getting now...... au contraire mon frere.....the scariest is "we gotta stop dickin' around with this!"....actual quote to me, and it wasn't about CH. gimme a doc who knows his/her limits any day over some version of "I'm God...lissen up!". Now then, what ya wanna hear next is : 'but we're gonna figure it out".....find ona them..... My immediate goal is to get O2 as fast as I possibly can. More questions will come soon I'm sure... ...and we await a report on the first time an O2 abort drains away the pain like water...and it will.....and you find yourself in tears of gratitude, relief, and God knows what other feelings.....cuz we have been there............ best jonathan (3 decade O2 huffer.....) P.S. welcome to the board!

......cool! ...the senior bus I ride has a sign: "We stop for garage sales".....I do Sally's and Will's on my own.....

WOW...exactly!!!....used to almost wish for a cycle when I had to write for work....lots of us get the euphoria....but this I've never seen before... wish it was harnessable w/o the CH.....

Welcome!....try this "cluster quiz" from our sister site first.... http://www.clusterheadaches.com/quiz.html best jonathan

...just do the math....one hit at a typical 10-15 LPM for 10-15 min would be 16 cans (plus no mask and <100% O2)....at $15 ea that's ca $240....makes the drive down to the welding shop with a box of donuts for the boys a worthwhile trip...

...hey art...why no O2 in SK?....can you not take up a new welding "hobby"?

….have always been a fan of bacteria/yeast/mold poop.....beer, wine, cheese, sauerkraut....pepperoni!......

..."Abother issue, my doc prescribed 5lpm which I know won’t do much. I was so grateful that I even got a script that I didn’t fight this." ...consider yourself fortunate...a clusterhead NEEDS a diagnosis (for MANY reasons and most wait years) AND an O2 script (many ignorant physicians won't even write)...it don't matter a damn what the script says....it is the "ticket to ride"... "If I purchase a regulator 15 lpm or 25 lpm, can I still use it with this prescription flow? " ...YUP...nobody cares what flow you actually use...regulators go from 0 up... "I can right? I’m sure the tank will run out in like 20 minutes but it is possible? Any and all help is appreciated" ...don't focus too much on using the "right" flow...it's different for different folks.....you'll figure it out...start high and go lower til it don't work...then go back up... ….just generally, for budgeting purposes, an e-tank lasted me 2-3 hits and an m tank 5-6 hits... YMMV... Best Jonathan .

...sorry if I missed this.... have you tried asking an O2 shop to accept self pay? Did that for many yrs....unknown if they are still willing, I'd try multiple outlets...this is dated but I paid $10/e-tank to start and eventually $14...

...nope...CH is not a choice....guilt/shame is...I got pissed and made a plan and followed through.....sometimes it even worked...and when it didn't...NEW plan....

Welcome TEG, glad ya found us, …..yeah...OXYGEN, D3 and perhaps busting.....your goal is to have the suma on hand for the RARE, if any, breakthroughs..... because right now it sounds like way too much of a med that can feel miraculous but has some nasty side effects and can potentiate rebound hits... ...had the same problem thru 7 different insurance companies (O2 too)...one being BCBS...the 12/mo they are allowing is pretty standard...best I ever did was 18/mo....there are several strategies that worked for me...in the end, ALWAYS got both....(if Medicare, forget the O2 being covered, do self pay or welding O2)... ...starts with an advocate Dr (s)...mine were with a headache clinic used to dealing with insurance droids...your doc has gotta be on board. You need a letter of "medical necessity" stating what your diagnosis is (codes important) because you and your doc BOTH know you have CH.. and insurance companies "act" or ARE ignorant of CH and will give you the typical baloney of denial since "we don't cover these amounts for migraine patients. No shit! ....but YOU.DON'T.HAVE.MIGRAINE! Next, his/her PRESCRIBED treatment. Hopefully your doc is as pissed as he/she should be that some paper pusher is questioning their professional medical opinion/competence...and making medical decisions w/o having examined you (aka practicing medicine w/o a license). ...my opinion, constantly reinforced over the years....health ins companies routinely deny claims out of hand...they COUNT on a certain percentage just to give up...DON'T! Treat this like a game you are gonna win. No one likes hassles with insurance.... but it's nowhere near as soul crushing as riding out hits "naked". ...keep a record of every communication with names, dates, and times...be prepared to quote their own words back at them...especially the stupid and wrong... ...it would be especially helpful (if you get your ins through an employer)....to get HR on your side...better yet, request HR to put you in touch with the broker who sold the company the health insurance policy. This person is incredibly important since THEY are the customer of the ins company and more likely to get some action... you are just an annoyance... ….one strategy my doc employed was to prescribe 2 DIFFERENT triptans at the same time...since one ins Co wouldn't give me enough Imitrex, she wrote another for Zomig NS (5 mg)...might even have been BCBS...they didn't even blink, approved immediately...tho the 2 scripts were same cost as ONE script of the Imi I needed. Side benefit of that: discovered Zomig worked at least as well, with fewer side effects and longer effective action. IMPORTANT NOTE: never mix triptans...always give at least 24 hrs between different types.... ….Imitrex is sometimes available in vial form (ask your pharmacist or check online)...where you draw up the med and inject yourself (I used diabetic needles)...allowed me to get 15 aborts (2 mg ea) out of one script and avoid the hammer of 4-6 mg in the statdoses (which can be dissembled so you can use less...like FunTimes said)... Best Jonathan

…..part of a clusterhead's tool kit...carry with you always....

….check that they didn't switch your script to ER....usually don't work.... ...and yes, but so rarely it made me laugh when it did....

...compounding pharmacy (and/or a hospital)...be sure the script is scrupulous cuz they'll laugh ("you are gonna do WHAT!?")....when they figure it out (easy mixing) they'll give you two HUMONGOUS bottles of 4% Lido sol you will NEVER EVER use up...be sure to take the time to educate about CH, they'll be curious....once home be prepared to place oneself in odd and precarious positions in which to insert the lidocaine soaked Q-tip onto JUUUUUUST the right place DEEEEEP inside your nasal passage (felt like my brain)...while also writhing with the beast (must be entertaining to watch)...I amuse myself with the memories…. ...if you are one of the precious few this works for: GOD BLESS you mate!....and, if so, I still got those bottles we talked about... ...but yur only gonna know, if ya give it a shot! OH...and: OXYGEN! Best Jon

"Anyone know if you can just check O2 tanks into checked baggage? Kind of a pain in the ass, but without other options I could do it." Absolutely not...they will laugh in your face (been there) ...it's a significant safety issue...

…..perhaps only useful for future reference.....I used Lincare travel program for trips to CA, NV, and OK...delivered E-tanks directly to hotel...same charge as home (WA)….done online...the attached link shows their NO location.... https://www.lincare.com/Location-Map/moduleId/2040/controller/Location/action/LocationList?searchState=LA NEW ORLEANS - LINCARE INC. 1533 SAMS AVENUE SUITE D HARAHAN, LA 70123 Phone:504-733-1702 Fax:504-733-1713 Best Jon

...mine were like a bell curve every 6-8 weeks for yrs...slow ramp up...level off...slow ramp down.....I ALWAYS knew when the cycle was over when I got hit at the very end of the ramp down by a HUGE one. it was weird...I used to "pray for the whopper". If I was in a hurry there was always the beer test...a guaranteed yes/no on cycle end for me. I think you've said alcohol is not a trigger...so I guess the best I could say is to attempt what you think MAY be a trigger... ...mental health wise...I think it's just easier not to dwell on it (easy to say when you know your cycle...so keeping a journal helps)….

….that's really good to hear!....napping is a big time trigger for many....

Welcome Andy...sorry ya had to find us...…. I was diagnosed with CH this month. I kept thinking I had sinus problems because of the stuffy nose and pain behind my eye. Looking back over the years, I now realize that I may have been experiencing CH for years, but now, at age 62 it is much worse! They started when I got home from hiking to the top of Mt Kilimanjaro (19300 ft). DANG....for most of us the fervent wish/dream/fantasy(?) is to age OUT of CH...it's rare to age in.....tho I think you are probably right that you've been a clusterhead for a while now. Your activity level or some other action may have been protective. Elevation change and/or barometric pressure changes are well known/common triggers... My neurologist has prescribed low dose of Verapamil and Zomig nasal spray (which I can't take until my MRI has been read). She said getting Oxygen in nearly impossible. Low dose (which is?) verapamil is generally worthless...the sweet spot reported as 480 mg/dy immediate release in divided doses....some go much higher (I was over 1000/dy in high cycle). Can have cardiac effects which MUST be monitored... and may negatively effect your mountain climbing. Was quite effective for me til I dialed in the O2 use and possibly helped by D3 regimen.... That is a REALLY dumb thing for your doc to say about O2... as it is medically accepted as THE best first line abortive. Relatively inexpensive, easy to use, NO side effects like verapamil, portable (E tanks). Find yourself a headache specialist...many (most?) neuros are clueless when it comes to CH. I had an eminent brain surgeon ask me about using Inderal for Ch....said "yeah doc, 30 yrs ago and it didn't work then"...……... Zomig NS (5 mg) is my abort of last resort...expensive but 99% effective w/o (for me) the nasty side effects of Sumatriptan.... An energy drink or REALLY strong coffee at first sign of a hit is effective for many....helped O2 work better/faster for me... The only thing I have found that stops the CH is 16 minutes running on the treadmill. Even when I wake up at 1:00 am, it works immediately (forget about sleep for awhile). Vigorous activity is definitely an effective strategy for many clusterheads....but it does become a convenience issue....some really unlucky folks get triggered by exercise... Get yourself some OXYGEN...even if you have to get it from the welding supply...start the D3 regimen (good for ya even w/o CH....) Best Jon

Yes and yes.... just saying I wouldn't make any judgements based on a one off....