jon019

Hiya MG...maybe the water based (vs oil based) version would work better... ...and EXCELLENT point re meds...SO TRUE. For example... I have GI issues with Mg Oxide that are non existent with Mg Citrate...go figure... Best Jon

...yup…..everything spiny said!!! ….just wanted to add for folks new to O2.... from personal experience...usually the hard way. there IS more than one way to properly use oxygen...and I worry that folks try an "accepted" particular way, it doesn't work....so they think and we see the most dreaded phrase: "oxygen doesn't work for me".....or worse yet, just go away sadder than they arrived.... … OXYGEN inhalation is the near miraculous salvation system for clusterheads....owe my sanity and perhaps my life to it....as do MANY others...it's FAR too important and proficient/efficient/sufficient to NOT try every possible way to make it work!! ...personally I use spiny's method of breath and hold...others find hyperventilation on O2 works or works better....plain air hyperventilation is my measure of last resort when caught out on a mountain trail with no canned O2....sometimes it even works! (don't forget the 5-Hr energy bottle in yur pocket...ALWAYS)…. ….early on I used < 8 LPM quite successfully (no money no insurance)….later 12-15 LPM....no idea if 15-25+ would work better because I can't breath that fast...but I'd sure try it if lower lpm's don't work for ya...…. ….you CAN expect that different cycles will react differently to O2....at times staying on for a few minutes after hit abort helped prevent getting re-hit soon...other times it was a waste of O2.....only experience will tell ya... ….all the above assuming ya already got the proper gear: canned O2 (no concentrator), non-rebreather mask or direct mouthpiece or some type of demand valve.....use the wrong gear and it probably won't work and sadly you'll get the wrong impression (btw....aint NOTHING wrong with a garbage bag full of O2 )…. Best Jon

Hiya TCB...welcome aboard! Siegfried is absolutely right....great points. One of the frustrating things for clusterheads: we have the same thing.....yet we're all different! Find yourself a headache specialist to sort it out... and don't dismiss the possibility of multiple headache conditions. Different treatments work for different types...so ya collect the ones that work. I'm shocked (dismayed) you apparently have not been prescribed OXYGEN !?. LONG time first line primary CH abortive, well discussed, researched, and approved by the medical community...the right flow (at least 15 LPM), the right mask (non rebreather), and the right technique....and lives have been changed and saved. Look into Vitamin D3 regimen also...…. Best Jon

It's not funny...it's f*****g HILARIOUS! Thank you! I saw that spam and couldn't quite figure out what they were selling...not THAT'S stupid...…………….

Dan, ...only a little to bit to add to the most excellent post from CHChris (and I'm likin' the double "ch" too)... ….you are already well ahead of the game with your O2 procurement. Many of us have had to pay out of pocket... and it seems more and more these days O2 shops are not as willing to accommodate that like they used to. As Chris noted....many also charge the same rental for different sized tanks....which means a larger tank (even if costing more) will be more cost effective in the long run.... ...are you sure about extra cost for delivery? I used to pick up my own but there was no cost difference if I had delivered (self pay or insured). Sounds like you've already looked at that... but just in case... ...in the long long run I'd do the welding oxygen dance if I were you....scores of other clusterheads do... ...here is the link for the clustermask….it remains one of my FAVORITE possessions: http://www.clusterheadaches.com/ccp8/ ….you might want to poke around that forum too

Hey Stev....now THAT'S a winner/enlightened Doc (or practice)! Very happy to see this. Would you mind posting the Doc's name and general area...might help a fellow clusterhead in the area. Best Jon

Dan.....anything smaller than an E tank is a waste of time and effort. See chart at this link: https://www.bing.com/images/search?q=o2+tank+sizes+chart&amp;qpvt=o2+tank+sizes+chart&amp;FORM=IGRE Don't they deliver? That's usually how O2 shops operate.....I got get 6 e's and/or 2 M60's at a time (picked up myself but was convenient)...

Yo Stev….an MRI/CT is advisable for diagnosing because there ARE conditions that mimic CH...and may be considerably more dangerous. Did the original Doc order one? Re previous question. I don't bust but if I did I would tell my Doc....YMMV. HOWEVER...you REALLY need a headache specialist... cuz a Doc who "isn't clear on what CH is" is a scary situation.....unless he/she is willing and EAGER to "look it up" and then DO something. Some are...some aren't. Best to have one that already knows. Many a clusterhead has been misdiagnosed with "sinusitis" cuz the Doc may not have ever seen a clusterheadache patient. I had a life threatening ailment "dicked around with" (quote by the Doc himself) cuz they thought sinusitis (old med proverb: if ya hear hoofbeats think horses...NOT zebras).>>>>>bingo-bango you got sinusitis! That said....I have no idea what your Doc is looking at and what your health situation is. You COULD have sinusitis (also)...don't dismiss out of hand cuz of some old cranky clusterhead.... Best Jon

...un piccolo mala testa (small bad head)...I would suspect every clusterhead has a slightly different definition...mine would be a hit (yes, it's STILL a hit) less than 2 on a scale of 10...am totally functional but know it's there and MAY lead to somethin' worse. what some clusterheads call a "shadow" would be called a bad headache by civilians....but then we are jaded....

Hiya Stev….welcome aboard! I'd list everything you take for the doc.. and ask if there are any questions or concerns (kinda backwards, I know, but...... I LOVE that story DD! The only time a medical professional ever showed interest learning about CH from me was a Pharm in a hospital (Doc had prescribed intranasal lidocaine...yikes!). Coming off a hit so I only gave her a rambling 20 mins...when I thought about it later I despaired at the opportunity lost...coulda talked for hours...and maybe saved another clusterhead some grief...……….. Best Jon

Hi Dan, Also have not heard of or experienced O2 making things worse...suspect it's your cycle ramping up. You are doing exactly the right thing by staying on for a few mins after the hit subsides. Also used to get hit hourly at night (in high cycle)...for whatever reason the O2 worked better than the usual 15 min (only 5-8)...but back again in an hour. What I did was (guessing here) learned to wake up as soon as hit started (and no idea how I did that)...with my rig all set to go....just had to slap on mask and open valve. Left lights off, only swung knees off bed and stayed sitting, eyes closed, none of the usual movement, anger, angst, swearing...NO thoughts other than breath-breath-breath-breath. Never really woke up and could get back to sleep almost immediately. Usually got 5 or 6 hrs of sleep a night... which I was eternally grateful for because the alternative was NO sleep. Turned out my ATTITUDE about what was happening was just as important as the tools I was using...literally changed my life. Hoping someone with far more expertise in O2 checks in here...it's a good question others may benefit from.... What size O2 tank are you using? An e-tank would last me 1-3 days... so I BADGERED the local Lincare supplier to stock M60 tanks (needs a different regulator). About 3 times the volume so 3 times the lasting power. Heavier but not enough to dissuade... as they have a really neat handle that makes sclepping easier than an e without a cart! No idea if the tapering off Dopeymax has any effect either way...it never made any difference for me.... beyond the worst side effects of any med I ever took. Look forward to the brain fog lifting and best wishes on the busting...you're in the right place for that. Best Jon

...I resemble that remark (in more ways than one)...hottest shower on the head I can stand....know of another who alternates hottest/coldest (he likes a frozen bag o' peas...…..)

...same as Fun Times here...it's our wonky hypothalamus (body temp regulator amongst MANY other functions )...source of the beast in the first place. a wise diagnostician would take this into account in a differential diagnosis

Hi Maria...you and your MOST EXCELLENT hubby/supporter(we LOVE us some of those) have a whole bunch of folks here who genuinely feel your pain and desperately want to help. I would caution you and US not to throw EVERYTHING you hear and read about this at the beast at the same time. One of 'em is gonna work...we KNOW that...but the danger becomes when it does.... WHICH ONE!? Systematic trials of known treatments (e.g steroid taper (10-14 days), verapamil commencement (480 mg/dy of immediate release version is reported sweet spot for ch), and O2 is one….with triptans (Imitrex, Zomig, et al) for breakthroughs. Busting is another with O2 standby. Oxygen plus energy drinks another. D3 regimen can be taken pretty much no matter what else as it's good for a body regardless of ch or not. Like CHf said about Indomethicin...may take a couple weeks to be effective. I'd also read the O2 file for proper usage as many have given up on this life saver too soon due to inadequate flow or mask or technique. Is the "a" preventive amitriptyline? That's another...lower on the success list than others...but I'm not your doc. Hoping for a ch cognizant neuro for your appt...and just delighted that your system allowed for an emergency queue jump. Best Jon

Hi brs...some thoughts... I also second what CHf and Fun Times said... My initial thought was "needs a headache specialist"....but with the treatments you describe it sounds like you already have one. Has he or she discussed the possibility of a headache form other than (or in ADDITION to) CH....like the hemicrania continua CHf pondered? Have you tried indomethacin to at least rule that out? Re O2. What flow? (15-25 LPM recommended)….what mask (must be a non-rebreather or direct mouth to mouthpiece)? What technique (breath and hold or hyperventilation)? When started (first sign of a hit)...for how long....do you continue for at least 5 min after hit fades? What dose of verapamil....what form (immediate release (IR) or extended(ER))? Has your Doc tried upping that? In peak cycle I was at over 1000 mg/dy ….at low cycle 480/dy. 480/dy of IR is reported "sweet spot" for many. Timing dosing to expected hit times was somewhat successful for me. Both verapamil and Imitrex have been reported to negatively affect cycles for some folks...either lengthening and/or causing rebounds. Personally hadn't heard that for steroids...but could be... and it can produce some really nasty side effects, so is generally used in a taper and/or IV to break a cycle while a prevent med kicks in (10-14 dys). Since it's not working for you anyway... ...I'd drop that one like a sh**ty diaper....3 months is too long for CH. What form of Imitrex...injection or oral (usually worthless as an abort)? Have you tried other types? I have great success with Zomig 5 mg NS with minimal side effects, no rebounds...might be worth a try. Come to think of it, in your situation, an oral form (there are several kinds other than Imi) may give some preventive relief. Can't comment on busting other than: you are in exactly the right place to learn about that....and it is especially important to be off certain other meds (listed in files section)before trying. Ooops...forgot to add... Tony has some really good points.... and based on the failure of all the meds you listed... it might be in your best interest to taper off all of 'em! Did that once myself for 7 years (as have others)....O2, energy drinks and maybe D3 got me through. Kinda a reboot startover….doesn't seem ya got much to lose.... Best Jon

Yo bro...feels like a kidney stone.... but they found a very expensive NOTHIN'... and I left with a Tramadol scrip.... ….did use my hard earned CH smarts/experience when asked "the pain question". previously woulda said a 2-3 (once broke a hip and told 'em it was a 2, cuz compared to a hit it was...BIG mistake) .... but doubled it and added 2 for an 8... to get the non-CH "civilians" attention THIS time.... it worked!

…..check out this thread: https://clusterbusters.org/forums/topic/3037-recommended-doctor-list/ it's dated but a good start .....don't assume any neurologist will do as many (maybe most?) don't know much about CH either (I had a brain surgeon neuro ask me if they used Inderal for CH ?….told him yeah, 35 yrs ago!)..... ….ask about their CH experience FIRST... before a very expensive disappointment... …..most neuros of ANY kind are booked for months...don't get discouraged......be SURE to tell them you are a CH patient (especially if you are in cycle) as some (&/or their staff) understand the urgency (that's the place ya want!)….and be willing and vocal about filling in for a cancelled appt... ….pain and headache clinics are also place to look... ...WHEN...not IF ya find a good one....share it with the rest of the family...please...as they are treasured... Best Jon

Hi Vanessa..glad ya found us... OXYGEN is THE recognized treatment for CH...for decades...saved my sanity maybe my life....and there are THOUSANDS like me who could testify better than I. A doctor with TWO patients with CH (most never even see ONE) who doesn't know that or hasn't not bothered to do the most basic of research (pred gabby and verapamil oddly notwithstanding) desperately needs to be fired for a headache specialist.... ...in the meantime...listen to D Denny....it's GOLD! Best Jon

Hiya Amy, 1. I live in Canada and my pharmacist says the Imitrex injectable vials are "discontinued." I have only ever used Imitrex nasal spray but they leave me feeling dizzy and eventually stop working early in my cycle. I would like to use the injectable form next cycle- any suggestions for me to find this on my own? Not sure why we keep hearing this…I don’t think it’s correct…check out these threads.. https://clusterbusters.org/forums/topic/5614-imitrex-injections-discontinued-in-canada/?tab=comments#comment-56604 https://clusterbusters.org/forums/topic/5745-my-experience-with-ch/?tab=comments#comment-57517 Suspect that in this world of statdoses and convenience there is a low demand so a low supply for a product requiring syringes, vials and draw ups. I never thot a big deal….but ??? Injectable should be quicker. Many folks find that the statdoses are too big a hammer (4-6 mg) and get by with 2-3 mg after dose pen tear down or the aforementioned vials….and therefore fewer side effects and possibly lesser chance of rebounds or negative cycle effects… (edit...sorry...didn't see CHf reply) 2. I read that Zomig may be more effective - is this in a nasal spray or injectable as well? Should I try that next cycle if I can't get the injectable Imitrex? It's nasal spray, I use the 5 mg version as my abort of last resort when oxygen, energy drinks and (formerly) verapamil insufficient. For me is superior to imitrex: 99+% effective within 10 mins, 18 hr ‘free” time, minimal side effects, no rebounds, no negative cycle effects, easily carried, unobtrusive usage. Similar (HIGH) price to other triptans…comes in boxes of 6. It would be really neat if you could get a sample from your doc to try…as my experience may be unusual… 3. Verapamil - first time I was prescribed it as a preventative I began taking it in July (2013- expected cycle) and had shadows. Verapamil worked to prevent the cycle and I stayed on it for 6 months to xmas. I weaned off Verapamil a few days before xmas and 2 days later the beast hit. The verapamil only delayed the cycle but it often feels like it won't let me get away with anything without taking me down first!!!! Whether to stay on or change dosage or form is a question only you and your doc can answer. I stayed on IR year-round because of rapid on/off CH cycling. Many (not ALL) find immediate release (IR) superior to extended release (ER). Sweet spot reported to be 480 mg/dy in divided doses….I would go over 1000 mg in high cycle….timed to expected hit times being somewhat more effective…. 4. I am into week 4 of my current cycle. The Vit D protocol and Verapamil together bring down the intensity and frequency of the hits. I have had a few PF nights. However, this morning I woke up from a dream ( as usual - most of my attacks come right out of REM sleep) at 5am to an intense HA that I first tried to hit with oxygen, then Immitrex....then gave up wimpering in the shower and sobbing myself to sleep. The lastest addition to my clusters is the Panic Attack which has me vomiting along with the beast. The lorazapem helps to relax me so I can focus on just breathing through the beast. Four hours later, I woke up feeling dizzy, weak, exhausted with no head ache. This usually signals the end of my cycle. So why when I see the effects of the verapamil and Vit D for a week or more do I still get whacked at least one good time before the beast quits? It's like he has to win every god damn time!!!!! When episodic (years) I knew that the cycle was over when I got BLASTED by the worst hit of the cycle (which is saying a LOT). Used to crave-yearn-pray for that hit…weird yes, but I KNEW what it meant. The “beast” as an entity vs a medical condition would be affirmed by many a clusterhead…it seems to be “alive”, with a will, a vindictiveness, and an evil intent that is spooky……….. Many find energy drinks…drank COLD and FAST at first sign of a hit…then hit the O2… to be quite effective. Minimum 100 mg caffeine and 1000 mg taurine (caffeine booster)…bought by price not brand as they mostly taste AWFUL....which at the time I don't care. The 2 oz 5-hr energy drinks have the advantage of portability and quick use. Lotsa sugar in most….look for sugar free WITHOUT aspartame (a trigger). I purchased at discount grocery stores for less than a buck per... Sorry for the rant. As you all will agree, no one really understands what I am going unless you have been there with me Aint no rants in clusterville…we share…yours nicely written! Best Jon

…..not enough "reallys" Chf ……….I'd add at least a: REALLY!!!! ...quick, effective, cheap, easy, portable, NO side effects, life changing...what's to lose!? ….add an energy drink at the earliest hint of a hit (minimum 100 mg caffeine and 1000 mg taurine)... ….consider trying Zomig nasal spray (2.5 or 5 mg) for breakthroughs...my experience it's less of a hammer than Imitrex and 18 hr "free" window with no rebounds...…. ….and I'd JUMP on the D3 regimen....it may make all the above moot.... Best Jon

...and then there's some of us (me anyway) that found verapamil produced a 70% reduction or dampening of daily destructive debilitating hits.....better than anything else added to O2/caffeine. THAT was a whole lotta light at a very dark time in my life.... ...ingesting any med, drug, supplement (artificially or naturally sourced)...heck, SUBSTANCE, taken in a dosage higher than nature typically provides in diet, requires the prudent patient to research the heck out of it...including roots, seeds, leaves, berries, and even mooshies…………….. Best Jon BTW: I'm at over 20 different meds in this ch career (plus chemo).... and whatever long term price I have and will pay...nobody is gonna be able to tell "yup, that was the one that did it"...……………….personally, I believe verapamil to be WAY down on the lifetime impacts list...………………….YMMV BBTW: Yup....D3 fer sure....with O2 back....and CB.org in reach

Thank you Pap!

Batch?...ya got a link to the redneck O2 bag and proper technique...could only find at ch.com

...i'm not following.....a script faxed or carried to the o2 shop and yur walkin out minutes later with green headed buddies...they be used to "urgent" need in the first place ...don't let ANYBODY tell you they need a respiratory referral/evaluation.....waste of time different disease....you may have to dig up med code for ch which will refer to the manual and all the allied "approved" treatments...of which O2 is one and even primary (yur docs office should be ALL OVER this)…………… ...and oh, I forgot, yur a welder so ya got O2 up the butt or around the corner....a tank, a crescent wrench, a plastic bag and yur ONLINE......NOW