jon019

...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

Me personally...no. Seems they are available.... but were always a task to track down. I would suspect low demand means pharms don't stock... As of 7/18 manufacturer GSK: https://www.gsksource.com/imitrexinjection generic manufacturer Hikma (formerly West-Ward Pharmaceutical) https://www.hikma.com/media/1992/final_hikma-us-injectable_catalog.pdf here's one site selling generic: https://www.healthwarehouse.com/sumatriptan-succinate-6mg-0-5ml-vial-5-pack.html Best Jon info only...no endorsements

Hi Brendan...welcome....sorry you need to be here.... I think you did an excellent, even chilling job describing what you are going through....I'm sure it resonates with all of us in the family. Cannot even imagine describing symptoms to anyone during a bad hit. Tho it does remind me of a fervent wish many clusterheads have...and that is to experience a hit IN FRONT of a treating physician...so they can SEE what this crap is like. It would be a true nightmare for THAT to go over their head...…………………………………………………... Chris already said most of what I was going to say...only better! OXYGEN OXYGEN OXYGEN!!!! LIFE CHANGER ...several other thoughts.... Imitrex is frequently reported as causing rebounds and/or affecting cycles negatively. If you get the statdoses, some versions can be split up into lesser dosages. The onboard 6 mg is a real freaking HAMMER dose.... whereas 2-3 mg is sufficient for many....with fewer side effects. Better yet, it also comes in 6 mg vials (I think still available) where you can draw up (tiny diabetes set) and use exactly the amount that you need...with many more doses than the usual 2-pack stat. Ask your doc to prescribe the vials...or ask the pharmacist to substitute (as one told me: "same drug same price" ). I did not like the "ooky" feel Imitrex gave me so I switched to Zomig nasal spray (5 mg)….for ME 99% effective, minimal side effects, 18 hr PF "holiday". Same price and no dose splitting...but ya might wanna give it a shot (pun intended)…………. Read this letter titled "Letter to Coworkers" (by Simon). Many find it extremely helpful...only you will know. Bit of a dated format...was the only version I could find right now (is a post from CB sister site: clusterheadaches.com) http://www.clusterheadaches.com/wwwboard/messages/63158.html Best Jon

Hi AWO, Glad you found what works.....and you have company.....this thread may be of interest: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=chspecific;action=display;num=1160235186 (search term of "cluster knot" or "neck massage" or similar will get you lots more...this is the longest thread) Seems the discussion in that thread was more re ice v massage. No personal experience as I've never had the lump....ice anywhere on the head puts me though the roof...and I have "massaged" the crap out of my head and neck to no avail...alas. I am fully willing to accept and applaud that this is a remarkable and relevant strategy for some...but that the age of the threads and the study you posted (thank you!) are indicative of a less than universal efficacy.... or it would be more widely known to the community. Was there any follow up research from these folks? Best Jon

….soma the same folks as here, plus a bunch more "cracked heads"...started by a man (DJ) over 20 yrs ago cuz he found out he had CH and NOWHERE to find info!!! …... saved some lives and everything that boy.... ! ….just watch out for the occasional axe murderer...and read a few of the threads...you won't be sorrrrrrrrrry

.…. "cluster kit" from our sister site...it's even on sale...tho to tell the truth it is PRICELESS.... http://www.clusterheadaches.com/ccp8/

ALL the above ^^^^^^^^^^…..and I'm not sure that private insurance "has" to cover it... but they WILL.... provided ya play the game! Of the 8 insurance companies over my career, 7 of them refused initial request for O2 as CH treatment. Totally bizarre when the alternative triptans are so damn expensive (tho ALSO limited by them). Just one more entity that doesn't understand CH and doesn't seem to care either. Sermon over... OXYGEN saved my sanity, if not my life....I seethe when I see refusals and the completely inexplicable federal veto. I got it EVERY one of those 7 times...because I HAD to...…….. If they won't: Appeal immediately by writing and phone...keep copies of ALL communication and persons talked to. Do not accept the bullshit line that "we don't accept oxygen as treatment for CH." It's in the lit as the referenced by CHF and THMH....and that would mean they are practicing medicine without a license (i.e. the droid in the basement with the green eye shade and the mission to deny everything). Call 'em on that one...anything in writing or verbally from an identified rep is golden. Be sure you have a prescription...and send 'em copies of either or both of the lit above. I REALLY hope you have an advocate Doctor....who cares and is willing to fight the insurance company....and hopefully pissed at incompetence. You'll need a "letter of necessity" describing his/her diagnosis and treatment plan (O2 of course)....and woe be the UNLICENSED insurance jockey who disputes that. (one of my fav memories is the blistering letter my neuro sent...it really worked). If you are working.... seek help from the HR person to go to bat for you. Better yet...besides that person, find out who is the broker that sold your company the policy. Request HR put you in contact....THAT person is really considered the insurance company customer...they'd prefer you go away...but they WILL listen to this person. Meet and greet and give 'em all the above..... Game on...don't get mad...get busy. It got to be sorta fun after a while...and a great distraction...stress being a prevent for me...hoping this will save you a little.... Best Jon

SO TRUE....sometimes all we got is clusterville and our supporters....PLUS an o2 mention!!! ...I like my anchovies on pizza.....it's the umami!

Hi Popoid....some other thoughts... ...re D3 sounds like you just need to reload and see what happens... ...as already stated the pill form of sumatriptan is worthless for an expedient abort (some find help as a preventive, especially for sleep)..ya need the injector OR a nasal spray...I had excellent results with Zomig 5 mg NS....99% effective within 10 mins...18 hr 'free" time...no side effects... ...still concerned re your diagnosis.... and what are your Docs qualifications.... ….vomiting is rare for CH...have never heard of the need for anti-emetic...more common with migraine...tho not at all unheard of to have multiple headache conditions at the same time (reason for my previous question re diagnosis). while there are many similar treatments....not all apply to either condition or multiple... ….have used several anti-emetics for other reasons...Ondansetron was worthless....Ativan much more successful...YMMV ….the things I have done to my head during a hit would be classified as "assault" by an onlooker...distractive pain I suppose...you pay later.. ...some find help with the hottest shower (on the head) they can stand...some the coldest (or a bag of peas or ice pack)...some alternate hot/cold.. GET YOURSELF SOME OXYGEN !!!! PROPER MASK AND PROPER TECHNIQUE( we can post links). It has gotta be a prescription from your Doc...and if he/she won't or doesn't know....ya need a NEW Doc. It's the fastest, relativelycheap, easiest, no side effect, PRIMARY medically known and accepted abortive treatment... Best Jon

Hi Popoid...welcome! The quick answer(s) is YES and likely.... YES! A cluster hit can be like a train wreck...not much that isn't affected. My hair used to hurt...and I'm bald!! You may wanna tell us more about yourself or ask anything....we aint Docs but we are professional patients..... Do you have a CH diagnosis? Do you have a headache specialist Doc...VERY important... many PCP's and even some neuros are unfamiliar with the condition and treatment. Any prevents tried (e.g. verapamil, Vitamin D3 regimen, magic mushrooms, psychedelics, seeds)? Aborts like the BEST: OXYGEN! What form of sumatriptan are you using? Tried energy drinks (caffeine/taurine), exercise, or other? Best Jon

^^^^^^^^ what J said! …..and chanting works...although The Buddha might not have appreciated my version during a bad hit: EVERY foul word I have ever heard...and some I just made up..REPEATED over and over and over again! Out of consideration for the neighbors...I carried a pillow around the room to shout into...it got soggy...……... Best Jon