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jon019

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Everything posted by jon019

  1. .....workmates used to think of me as a cat....he jumps up and runs out of a room suddenly and seemingly w/o reason. had to, if i didn't hit the O2 as soon as a hit felt an abort was much less likely to work..... and the longer the delay the worse the chances. golly, i hope it doesn't ramp up that quickly to 8+ for you...anything that high defied abort with anything but a triptan for me, and even then.... ....an energy drink on the way improved effectiveness/speed dramatically. "Wired" WAS my drink of choice....16 oz. with 344 mg caffeine and 3200 taurine, used half a can (8 oz) at a time, the equivalent of a full can other brands. i still cannot understand the success of energy drinks....as far as i'm concerned, along with cranberries, is testament to the marketing abilities of the food industry. w/o CH i would never touch these disgusting drinks....and all that sugar to cover up the gaaaaaack... ....was with delight i discovered the 2 oz 5-hr energy types. no sugar (note if you are sucralose sensitive, i had to avoid aspartame), minimal taste, way portable, easily downed, equivalent components. brand name quality found at grocery outlet stores for $1 or less ea... ...never more than 1 can Wired or 2 2 oz for me in a day out of an abundance of caution. my neuro did not approve of taurine..."too neurologically active and we don't know enough about"...it worked so i did anyway...
  2. Brian...pisses me off you are still getting slammed. i was amazed/impressed that the infusion center person sounded real familiar with CH and prepared. dunno, maybe you were especially detailed on intake and they listened. they only do infusion and not the ns scripts?
  3. ...hi @Lizzie Hall, have heard very little on the sites i visit re psilo and migraine. could you share type, dosage, frequency, etc. would be valuable info for newbies on a strategy that worked....
  4. @Shaun brearley....here's hoping you don't "have the blues so bad this time it put your face in a permanent frown"....and the NEXT bust means "you feelin' so much better you can...." :
  5. .....yee-haw and sounds familiar....play with the flow to dial in. M-60 tanks doubled that abort #/tank.... and reduced visits to the O2 shop. though the E's are quite portable and easy to roll around in a cart. used to love me some the smell of a new mask....associated it with the GOOD that was happening...
  6. ....so glad ya found us, so glad a place like this exists...we are standing on the shoulders of giants here at CB...and i look forward to the time when we can talk about the "old days" when CH was still a thing.... and now is a usta be....
  7. ....good stuff from mit....i got hung up on the Imitrex and forgot the Zomig (5 mg NS)....which became my abort of last resort. i know it works differently, at least less dramatically, because i got NONE of the severe Imi side effects noted by so many, and it lasted longer (18 hrs). with these long term HA's, even an oral might be worth a try....
  8. ...was thinking to myself: ya know CHfather, you'll never know how helpful and wise the above post is to so many of us.. ....when it hit me: say it!-so i did thank you
  9. ...if there's such a thing as a "standard treatment" for CH...this is it. many a clusterhead has found temporary relief while a prevent like verapamil is ramped up. i did a methylprednisolone IV/taper twice. the first time it stopped a cycle (mid-cycle!) which was incredible but rare...the second time no effect. none further since i didn't want to get on that particular merry-go-round long term.....and verapamil/oxygen/energy drinks/perhaps D3 were effective...... ...certainly worth a second attempt at sufficient dosage....
  10. ...been doing this dance for decades and have never seen a more apt description...wow...exactly! are you a writer...your phrasing in your posts is amazing. ....it sounds like cluster within something else. aint no rule says you can only have one HA type. i'd say find a specialist....but i think you need a DIFFERENT one...sheesh.. ...i didn't drink alcohol for YEARS, even out of cycle, because one of the few actual 10's i've had was a post drink hit from the depths of hell...scarred me. that said, Imitrex can be near miraculous and i would actually try again. as with O2, must be used at first hint of a hit otherwise likely to be ineffective. it making a hit worse is a highly unusual cruelty beyond comprehension. i'd hope a coincidence, but understand any reluctance.. ....beta blockers useless for CH...just one more migraine med thrown at us. opiates equally useless with the potential for introducing other problems.. ...as has been said, it is beyond comprehension why a prednisone or methylprednisolone iv/taper has not been tried to give you a break while ramping up verapamil (calcium channel blocker much more successful than beta blocks) verap is sometimes needed at very high doses that PCP's are reluctant to prescribe (i used IR 480 mg/dy in low cycle, 980+ in high)... ...there are clusterheads who have found relief with ketamine. i know nothing about, but is worth looking into, especially with an experienced HA specialist... ....start the whole D3 regimen yesterday...ya got nothin to lose.... ...i would insist on a indomethacin trial to rule out HC, like Jeebs and spiny said... ...you are on a busting website, might be time...there are non-psychoactive options if that's a concern... ...in the place you are at i would be exactly the same, so this total spit balling. some folks believe a trigger must be an immediate effect...while some indeed are, i do NOT believe all are. delayed reaction entirely possible.. probably old news to you, but for suspected (not the knowns like alcohol and msg) i used to do elimination/re-intro diets where i would totally eliminate a type/class then slowly re-introduce....carefully noting hits before/during/after. the only one i found for sure was aspartame, most of the migraine no-nos made no difference (e.g. nitrates, tyramines in cheese and fermented foods, glutamic acid containing like tomatoes and mushrooms ), sorry, this sounds lame but it's all i got for now.... .....asking a clusterhead to "be patient" is medical malpractice. get the damn script, go talk to the O2 shop, offer to pay out of pocket if necessary, or take up welding tomorrow. you need to find out NOW if O2 works for you. read the files on proper use...very important. this could be life changing all on its own... ....no reason not to try the Emgality. no reason to delay a nerve block...do it! it will either work or it won't, there are minimal (if any) negative consequences... ....absolutely keep searching for a diagnosis....undiagnosed ailments get treated with the whatever is handy. HA can be hard to diagnose, avg clusterhead mis/undiagnosed for 3-5 yrs....proper treatment, in the end, relies on diagnosis and the right practitioner...
  11. re the a/c....many a clusterhead same-same. i did that, or head in freezer, or hottest shower on head, some do cold, some alternate. spiny cooks herself like a lobster..
  12. ...the cursed server error is bedeviling....this a test
  13. ...nope...makes no difference. highest reported success rate is hyperventilation (even w/o supplemental O2 can help). others do slow breathe, and/or breathe and hold....or a combo. you need to try them all to see which works best for you...but PURE O2 is critical.
  14. ...try breathing directly from tube....mixing room air with O2 is a waste of O2
  15. ....you want anything with minimum 100-120 mg caffeine and 1000 mg taurine (thought to boost caffeine, some are intolerant). do a google search of ingredients. red bull was the first and is highly advertised (so is expensive) and actually lower levels of energy ingredients than most. i haunt the grocery outlet stores and get brand name product for less than $1 ea. the 2 oz varieties way portable, easily/quickly downed, minimal sugar (reg versions have OUNCES), less of the typical gacky taste... ...totally agree with CHfather re O2 concentrator...not pure O2, not enough flow, EXPENSIVE (usually a lease), suspect older versions even less efficient as they heated up with use....
  16. Hi AC...welcome... ...i know it's counterintuitive, but 3 lpm (especially mixed with room air) can and does use more oxygen (with lower success rate) than much higher flows (recommended 15-25 lpm). i could kill a hit in 5-15 minutes at 8-12 lpm provided i started at the first sign of a hit ...preceded with a quick downing of an energy drink on the way to the tank. with a non-rebreather mask got 2-3 aborts per e-tank... best jonathan
  17. Yo CE...so glad you found us... talking, sharing, or just plain ranting with folks who understand and care can be incredible "medicine" all on its own......and then ya got spiny! kept reading that truly wonderful post to throw in something...but there weren't no room. Golden!! ...all i can say is that it makes me sad and frustrated that somewhere along the way there was no OXYGEN given. guess it goes along with the clueless misdiagnosis, but every medical reference i've ever seen (from the 80's on) acknowledged that O2 was THE recognized abort. safe, fast, easy once dialed in, ways of making it inexpensive, and none of the nasty side effects we all know so well with the migraine drugs thrown at us. may not work for all, but does for more of us than anything else...save maybe triptans. you've never been given, Imitrex (sumatriptan), Zomig...or any other triptan..or they didn't work? i'm shocked. OXYGEN can be a game changer...saved my sanity, perhaps my life. That should be your first step.... best jonathan
  18. ....and one day Tonto said kemo sabe well, kiss my ass, I bought a boat....
  19. ...they gave Dylan a well-deserved Pulitzer ....and for my money, there has never been a lyric written that's more evocative, gut wrenching, and affecting than this. In Japan, they declare artists like these National Treasures ....JP, oh my....
  20. ...welcome....glad yur here, sorry you have to be....now, ...where's the OXYGEN?
  21. ....a) oxygen can have such dramatic and positive effects for CH treatment that you really should go all out to get it....which may include some shoving of the civilians who just don't get the URGENCY CH hits cause. quick, easy once dialed in, nunna the nasty side effects of some of the meds we use...life changer for some of us. ....b) i TOTALLY get wanting to stick to the hard earned strategies that one uses to deal.....been there, done that. but, there just might be another way that works, might even be better......and it's always nice to have alternatives. clusterheads sharing about beast wrangling is why we're here.....that and a cool family that happen to understand and care... .....there are countless clusterheads who would be doing a happy dance for access to the vials. BIG score! Nothing to add to @Bejeeber concise and vital primer. above...agree with everything he said! Note from experience re self injecting. The only ooky part is the first time or 2....after that it's no big deal no more.... PS....26 D reading is NOTHING. the lowest level i've ever heard of lowering CH hits is in the 60's....i believe batch @xxx would say 80's or even higher. ...hope he comes along to comment. benefits beyond CH for your overall health too.....
  22. jon019

    Intensity

    .....^^^^^^^^^this is very good advice....i wish it wasn't so but i've lost count of how many times i've seen that hyperventilation is THE way to use O2. it MAY be the best (probably but not universally)... but it sure as hell aint the ONLY. i personally can't hyperventilate, but thru hard earned experience found that very slow deep in/out was extremely effective. may not get the max O2 in circulation in the minimal time, but it worked...it DID calm me the f down, and eliminated the adrenaline, overheating, agitation, anger, spastic movement, stress hormone reaction that are the hallmarks of a killer hit. mixed in, or after, i progressed to a very similar technique as described by Freud. my fear is the seemingly never ending reports from newer clusterheads that "oxygen doesn't work for me". well....maybe....and maybe it's just a particular technique that doesn't..... and you.need.to.keep.trying the various methods. ....there...rant over (afterall, aint that part of what CB is for?)...this ones a pet peeve...oxygen made all the difference in giving me a life....
  23. jon019

    Intensity

    Hi Tamari...welcome... ...your best bet is to hit the oxygen at the first sign of a hit. i understand a desire to conserve O2...but in the end it aint worth it! ...some have found an energy drink/caffeine immediately before the O2 makes it more effective...for me sometimes it was all i needed.. ....staying on the oxygen for 5+ mins after a hit abort may help with the shadows. others find that ginger, caffeine, or regular pain relievers like aleve help with shadows (i'm sure you know these meds no help with an regular hit)....for me, nothing ever worked on shadows, i had to learn to just deal with it ....you should experiment with various types of O2 breathing, hyperventilation/slow breathe/breathe and hold...or a combo... all work for different folks. there is no right way.... best jonathan
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