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jon019

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Everything posted by jon019

  1. EDIT TO ADD,.....SEE ABOVE, posted at same time....CHfather is, as usual, so far ahead of me i don't even see his dust... ...nice suggestion.....believe only for drug info tho. before the internet i used to ask med school libraries or my docs office for last years copy. over 20 scripts used in my CH career....it helped to know more than what was on the script bottle. now patient insert sheets cover way more than most folks will ever need.... .....believe what i was referring to is this (never seen myself): UpToDate: Industry-leading clinical decision support When you care for patients, the stakes are high and every decision counts. You need the best evidence and clinical guidance at your fingertips to answer even the most complex questions with confidence. ....subscription service for medical professionals.....this physician should have access either personally or through his practice network. website fwiw: Evidence-Based Clinical Decision Support System| UpToDate | Wolters Kluwer
  2. ....are you female...some behind the times pcp's don't think women get CH...they are frightfully and obviously wrong. ...what's your diagnosis? triptans were developed for migraine (but work for CH too)...is this his hang up? ...i am not recalling the name of standard reference that physicians use...hoping another clusterhead will come along and provide. it says the same as the below .orgs and .gov (not the frequently derided .coms)....i could have filled a page easily. EVERY ONE of them states the standard acute care for CH abort is OXYGEN and TRIPTANS (Imitrex)... ....if there is a way to present this info to your pcp...mail or email or mychart or advocate w/o being present to witness the embarrassment (and therefore reluctance to believe) i would try that. if you have an honest relationship where you can sit and talk openly face to face and present references...go for that (i'm suspecting no...but that's an assumption).... ....i saved this comment til last but i was SHOUTING it upon first reading your post..."get thee a new doc"....sheesh, this is a bizarre thing for him to say. preferably a headache specialist (or at least a pcp willing to listen, learn and provide)....and not just any neuro (who frequently know jack spit about CH).... Pharmacotherapy for Cluster Headache - PMC (nih.gov) Cluster Headache Treatment Options | AMF (americanmigrainefoundation.org) Cluster headache - Diagnosis and treatment - Mayo Clinic Management of Cluster Hns use, hieadache (aafp.org) Cluster Headaches: Symptoms, Causes, Treatments (clevelandclinic.org)
  3. ...guess we're gonna have to turn around....
  4. .....the first words out of a proficient headache specialist doctor once he/she diagnoses CH should be: "here's a script for oxygen"...saved my sanity, perhaps life. no side effects, no rebounds, fast, cheaper than triptans, easy once you figure set up and the right breathing techniques, way more portable than stereotype implies. kept a job and career 31 yrs by bringing e-tanks (in cart) to work (office, car) and larger m-60 at home. even successful busting may require use for slapbacks and occasional breakthroughs... ....the high caffeine for abort works sometimes for some...i needed the caffeine plus taurine of the 2-hr energy drink type mostly to improve the oxygen effectiveness, making sure to avoid caffeine at all times except to abort. my experience that no rebounds or sleep interruption...tho caffeine was a trigger in between normal hit times.... ...if you are interested there are multiple threads on verapamil usage...just type in search bar. i had fairly good success reducing hits and intensity for seven yrs while titrating dosage to match place in cycle... ...a food log can help narrow those triggers...besides alcohol i only had 2, aspartame and msg (determined this way). note that msg comes in MANY versions...do a google search (anything hydrolyzed, autolyzed, tvp, yeast extract, yadda yadda). see "migraine diet"...doesn't necessarily apply to CH but there are some clusterheads who benefit by avoiding nitrates, glutamates, tyramines (beer, cheese, fermented foods)... ....injectable triptans more effective for most...tho the 6 mg statdose is WAY too big a hammer...most find 2 mg sufficient using imitex vials or hacking the statdose and using an insulin needle. goal is ONLY as last resort abort when all else fails. after successful busting is likely not needed at all .... ...whether staying in an active lifestyle or not made no difference for me. but, some find immediate strenuous exertion at first sign of a hit.... like running or exercises or any aerobic to be a good abort tactic. oddly, a trigger for others... ...be sure to get baseline blood tests per the D3 regimen...you need to know where you are starting from and what levels gets to pain free... ....finding a good busting regimen could make all the above moot....tho the D3 regimen is good for ya whether CH or not... jon
  5. ....has he tried hyperventilating OXYGEN at the VERY FIRST sign of a hit... with a non rebreather mask at 15-25+ liters per min with an energy drink of at least 120 mg caffeine/1000 mg taurine? a 2 oz 5-hr energy type goes down quick and can abort on its own....for me it made oxygen faster and more effective... ...any prevents like verapamil?... ....any prednisone/prednisolone iv and/or taper to break a cycle til a prevent kicks in?... ...abortives like imitrex or zomig nasal spray?... ...diet analysis to eliminate alcohol, nitrates, msg, aspartame, personally specific triggers?... ...stress reduction measures...? stress can be either a prevent or a trigger... ....active physical exertion ? (abortive for some, trigger for others).... ...vitamin D3 regimen?.... give us any details you can think of and any measures tried and we'll try to help... .
  6. ...another article of interest x/migraine again website Can LSD and Magic Mushrooms Treat Migraine and Cluster Headache? — Migraine Again
  7. ....among other "fun" stuff i was safety mgr. we talked about putting a sign over the hole as a safety reminder to "chain them damn tanks". finally decided that would be too big of a screaming red flag to WISHA (OSHA). not wanting to waste dramatic evidence, we left the hole and even cleared a space around it. told inspectors, "oh yeah, that,....old forklift damage we're getting ready to fix".....
  8. .....when caught in the woods a couple times without ANY aborts...and while contemplating how dumb i was for being unprepared... i hyperventilated to dizziness. am sure the fear adrenaline of what was gonna happen helped...but dang, it was near miraculously successful... ....note that Batch has recommended a pre hyperventilation head start on your way to the O2 tank. his remarkable descriptions of the biochemistry involved are fascinating....
  9. ....just wanna throw in for those contemplating welding O2 and coming across this thread in future.....NEVER tell them you gonna breathe it or you are gonna have to find a new shop.... ....and i have to say...i am totally shocked they would ship a full tank ($125...yikes!!), and i bet it's by ground...planes have gone down from O2 tank "incidents". have witnessed a broken stem tank going through cement wall ....and a chlorine tank explosively leaking for no apparent reason (that gas is eerie green)..
  10. .... note that many chemotherapy protocols include various steroids.... for an extended period. .... had almost the exact same discussion with eye surgeon. it developed remarkably rapidly besides the odd appearance. eye monitoring should be standard protocol for extended use of this incredibly powerful drug. it cannot be said enough for clusterheads (or their physician!): do not be enthralled to incaution by the near miraculous relief it can bring. there is a reason it has such LIMITED usage for CH. transition only.... never more than twice/yr.. and even that is risky... .... edit to add: i am not advocating against steroid use to break a cycle.... which can be incredibly effective and sanity saving. it's use should be for relief while transitioning to a preventive like verapamil.... or better yet busting. or sometimes, for just a frigging break.....
  11. ...i was allergic to toothpaste for a long period,... and triggered by "something" in a multivitamin (never figured out which ingredient).. anything is possible. clusterheads seem to have a good read on their bodies...trust your observations and use your gut instinct....
  12. ....we did....saw her like her Dad still does....
  13. ....first the tube, then..... ....let's blow this popsicle stand Pop....
  14. ...yur stirring a semantics pot Jeebs....3 kinds of lies, ea progressively worse: lies, damn lies, and statistics. for me i was 1 out of 3 with a methylprednisolone iv/taper...so 33%. but the first time, it stopped a cycle MID FREAKING cycle. it was a miracle!!!!....and 100%. i'm guessing.... with COMPLETE confidence.... that the actual number is somewhere between 0 and 100%.....
  15. ...spiny is entirely right that O2 suppliers must follow the script, BUT, it's important to note that YOU don't have to. get the script (hardest part) then crank that regulator (you bought your own on amazon to save on leasing, right?) to whatever works....key being reservoir bag full enough for full breath each time. for many that's 15-25+ lpm...some even higher. no one knows or cares what that is, find the flow that works for you. some find that starting high then lowering as the hit subsides an effective strategy and saves O2..... ...one of the saddest phrases in clusterville is "oxygen doesn't work for me"...when, in fact, it doesn't work at that pathetic flow....turn that baby up!! and experiment with various breathing techniques too. hyperventilation most frequently reported successful, but also slow breathe and breathe and hold...or a combo of all, can be the bliss.....
  16. ...all our eyes over your shoulder mate....
  17. ....before switching an O2 provider that is at least somewhat cool with a CH patient, ask for more tanks. i kept 6 e's on hand at all times for a decade+ before my provider (Lincare) finally got m-60's.....yee-haw! also a good opportunity to educate them on the needs of a clusterhead....paying it forward for the next 'head that wanders in. if at all possible, pick up and deliver your own tanks.....they loved that even WAY before the current labor/supply shortage. a personal relationship with shop mgr and backroom tech goes a long way too....then you are a person instead of a file number. delivery drivers can be your best friend, treat 'em like the gold they are....sometimes they can find you a tank or 2 when "none exist"....or even a few extra.....
  18. ...thank you @Tim Hogge ...ALWAYS worth mentioning (and rarely is), as dehydration is endemic and a facilitator of all kinds of bad issues. at one time in clusterville there was even enthusiasm for a "water therapy" treatment of CH. Worked for some! but not well enough for enough clusterheads to gain much traction. worth a try and hydration is important for everything anyway......
  19. .....don't give up on the O2....when episodic there would be occasional cycles where i would get the wakeups like that. i suspect it was due to an inflammation/allergy that was "firing" things up....and that my vitamin D level was below optimal. get your levels checked and try the D3 regimen. Diphenhydramine (Benadryl) may be helpful, with added benefit of drowsiness at an appropriate time...
  20. ...it's a long, windy road.....but there's sun at the end Shaun.....
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