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jon019

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Everything posted by jon019

  1. ….that's really good to hear!....napping is a big time trigger for many....
  2. 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
  3. Yes and yes.... just saying I wouldn't make any judgements based on a one off....
  4. ...well...ok...I'm certainly aware of rebounds from suma...but that's usually reported after extended use of injections...one day after an oral dose could be coincidental or how you react....i'd give it a few more tries before I nixed a tool......
  5. ...anyone walking around a corner and catching me trying to abort a hit with O2 woulda said: "Jon, why are you staring at your feet?".... ….now, the only thing I know about physiology was learned from Playboy (circa the 60's)...so this is just ME sayin what worked for ME: In this position it was easier to breath; slow ,fast, however I wanted.....also seemed to allow for drainage (sumtimes ) of my congested nose and the breathing easier thing....then, of course, was convenience to the spit bucket..... always kept around as ona my symptoms was a gusher of spit I couldn't possibly swallow fast enough (added benefit is that'll gross an observer out enough to get 'em to leave you alone.)......lastly, it kept me a little bit "under control" in a calming position sense.... to help avoid the dreaded thrashing and screaming and pacing...…..it all became a very distinct routine......YMMV Edited to add...nowhere did I say ROCKING in this position is not allowed....doing it right now out of habit....
  6. ...ok...for soma us born in the last century...while I think I know what a bot is... why oh why would a bot (or it's master) give a damn about an alternative medicine site for an ailment practically unknown to the civilized world (or, at least, to 95% of the docs I've ever been to...……………………………)
  7. ...my script said 8 LPM...still said that when I bought MY OWN regulator that went to 25.....
  8. ...I know it's not funny but I got a wry smile out of the 3 D tanks story.....my first O2 tank was a C or D...given to me to 'try out" (without a script!) by a kindly front desk person at Lincare......didn't even last one hit...but ALMOST...and I was HOOKED! Sanity...perhaps life, saved...……….. ...for YEARS I kept asking for M-60's...got the same "we don't carry"...then one day I asked (as ALWAYS) and they said: "SURE, how many?...no rhyme or reason given and I didn't care...but I HAVE to think that eventually the requests nationwide got to corporate... and overrode the probable reluctance of local branches to stock and keep track of (which they're lousy at) even MORE inventory...…...so if they don't come through...KEEP ASKING...you might be helping yourself AND fellow clusterheads... ...for me it was 1-2 M-60's at home, 4 E's in the closet, one E in the car and/or office, and a bag o' energydrinks….life got pretty good in between the hits (which I KNEW I had the tools to deal with)…... ...btw....don't buy your regulator(s) at O2 shop prices...I got 3 of 'em off the internet (name brands, 15-25+ LPM for less than $100 total)...
  9. ...yeah...what Freud said...persistence PAYS...I used Lincare (self pay/ins pay/no pay (long story)) and have heard EVERYTHING you describe...so it's really an individual manager thing...go over their head as diplomatically as possible...and get to know the driver/delivery person/back room techs REAL well...not always, but the farther (further?) you get from mgmt. the BETTER chance for care/concern/compassion/SERVICE....…………..
  10. ...umm......well...I kinda thought that's what CLUSTERBUSTERS.org was all about...………………...
  11. jon019

    24hrs in

    great...thanks for the update... ...caffeine can be a trigger....for myself if taken outside of normal hit times it caused more frequent hits.....but if eliminated until needed it proved to be an excellent adjunct or abortive....I believe the body adjusts to regular caffeine consumption but lags at a high dose...hence the effect we need (vaso-constriction)….
  12. jon019

    24hrs in

    ...first things....do you have a CH diagnosis? ...do you have a headache SPECIALIST doc? ( this can be CRITICAL)...who prescribed the Imitrex? did he/she discuss Oxygen or preventatives or a prednisone taper to break the cycle? we need some history here to help you better...…... …."getting one" ain't gonna work.... and you'll need a prescription unless you go the welding O2 route....and a combination of highly portable e-tanks and M-60's is good plan...I used 6 and 2 of ea... ...caffeine is a vasoconstrictor...all by itself is helpful for head pains of various kinds and is frequently combined with aspirin for superior effect (see Excedrin...which ain't much use for CH hits beyond a shadow)……,.anyway, the caffeine in HIGH doses taken IMMEDIATELY at first sign of a CH hit can be helpful or even abortive for some folks... ….energy drinks have a high level of caffeine (you want 100+ mg/serving) combined with various other ingredients the most helpful for us being taurine (minimum 1500 mg/serving) which seems to turbo boost the caffeine...sometimes were all I needed...other times made the O2 much more effective. buy by price not brand name, COLD and fast better, there are sugar free versions as the regulars have ridiculous amounts of sugar...beware artificial sweetener aspartame as it is a trigger like MSG for some....
  13. jon019

    24hrs in

    ...not if used with proper technique (can be different for individuals...but easily learned what works for YOU)....enough flow (15-25+ LPM)...and the correct mask (NON- rebreather)..….saved my sanity, perhaps my life...………….. ...WAY cheaper than triptans...fast, easy, NO side effects...portable with planning ………..
  14. jon019

    24hrs in

    OXYGEN!!!!???? ...............w/an energy drink back...…………..
  15. ...having witnessed a cluster attack where every fiber of my being wanted to call 911 despite what I know....and having been witnessed having a cluster attack where I had to BEG them not to call 911 because of exactly what you say (plus no insurance)....I don't think it's practical to expect perhaps a complete stranger to witness what a cluster attack looks like ….and believe a piece of paper that says basically "nevermind"..... ...that said, I do believe it would be a good idea to carry some kind of "medic alert" type indicator for when they DO haul you to an ER...………...
  16. Holy f'ing shit.....how could I have been so stupid to miss this for 38 years??????!!!!
  17. ^^^^^^^everything CHf said!...so I'll repeat for emphasis... ….that is a weird and potent mix yur on....if the Indo works it changes your diagnosis and you can drop 2 of those right away....be aware of potential stomach issues and talk to your Doc about remediation measures...problem now being you won't know which of the 3 is effective. normal practice is to try the Indo first and alone to RULE OUT hemicania continua.... ...if truly CH....GET OXYGEN (the BEST abortive)….it has changed/saved many a clusterhead's life and sanity (decades ago for me)...add an energy drink (minimum 100 mg caffeine/1000 mg taurine) at the first sign of a hit improves efficacy for me and many... NOTHING to lose with the D3 regimen (except possibly ALL other measures )...and its good for ya CH or not.... ...totally understand the fear of 'chronic'...I was same..... but having been both, the difference was just attitude...once ya got a plan and the tools it's just different forms of the same beast to manage...was episodic for 23 yrs, it helped me to think of episodic as just being "chronically periodic"....perhaps just a semantics game, but "it's all in yur head" anyway, right? Best Jon
  18. ...since I no longer use I don't pursue local access.....internet searches show these below...which I do NOT endorse or know if valid...only link... ...the number of people who report difficulty finding, if at all, tells me it may be a fruitless search....which is really too bad....and puzzling ..if I was a conspiracy theorist I might think the drug companies would rather sell the DAMN expensive statdoses over the more efficient vials... https://mms.mckesson.com/product/467246/Glaxo-Smith-Kline-00173044902 https://www.healthwarehouse.com/sumatriptan-succinate-6mg-0-5ml-vial-5-pack.html https://www.txvendordrug.com/formulary/search/drugs/imitrex-6-mg05-ml-vial
  19. Voc...have you looked into getting suma in vials (6 x 0.5 mg)? No tear downs required and you can inject exactly what you need with diabetes needles. Used to cost me the same ridiculous price as the statdoses…. but with MANY more aborts. avoided the HAMMER of a full dose (which I believe is side effect heavy and contributes to rebounds)... …..eventually found my way to Zomig 5 mg NS....all the benefits with nuna the side effects for me....added bene of 18 hr 'free " time...…..
  20. Hi Stuart…..with a reference that old and minimal, if any, reported efficacy (saw discussed years ago) this sounds like "let's throw a really powerful drug at a problem we don't know what else to do with".....I'd do oxygen, energy drinks, D3, busting and/or perhaps a prednisolone taper and verapamil before I even thought about this stuff.... ….side note...I know a old pharmacist who worked in a mental hospital...he and his colleagues used to joke that the only folks who could handle thorazine were the ones crazy enough to need it...…………...
  21. ….Henry Ford used to say " whether you think you can...or you think you can't...you're right"....always a good idea to solicit opinion...but there is only ONE way to truly know....every med and every strategy I ever tried I went in believing "THIS is the one"....that way I knew if it didn't work it wasn't because I didn't give it a FAIR shot....
  22. OXYGEN....………………………….
  23. jon019

    Taurine! WOW!

    ...very FEW reports of success for clusterheads....not pure O2 and lower flow than necessary....
  24. jon019

    flying on CH

    ...carry a 2 oz 5 hr energy type drink...
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