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Everything posted by jon019

  1. .....see AussieBrian at clusterheadaches.com....his email addy is in the tag line. way good bloke, if he don't know he'll know someone who does.... Clusterheadaches.com NEW Message Board My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com
  2. Prednisone didn't work, so I've only been using oral sumatriptan (we are going to try Verapamil for next cycle) and some Advil and Tylenol. ...unusual for pred to not at least interrupt cycle while a prevent kicks in. note that verapamil is very dose dependent, and the lower levels have less chance of success. 480 mg/dy in divided doses seems to be the sweet spot...some go much higher. hopefully your doc willing to up the doses, if needed, to find what works for you. many inexperienced with CH are reluctant to use the dosage we need. immediate release (IR) better results than extended (ER). LOTS of water and fiber to keep GI moving along... ....advil and tylenol basically worthless for CH and care must be taken not to use too much. some folks find they help with shadows (naproxen sorta helped me there on occasion) This current cycle has been different. We are now in week 5. The attacks stopuped at the end of week 3 (like past cycles), but now I am hstill getting 1 to 2 dull headaches a day that seem to linger much longer than a true 10/10 hit. I'd imagine these are what many of you refer to as "shadows." They are also like clockwork, 12 hours in between. ....that sounds more like "subtle" hits than shadows...which most find less predictable than the dang predictable timing hits My doctors insist the cycle is ramping down, but it just seems to be morphing and not ending. Again the pain is 2/10 vs a 10/10 for proper attack, but it's still happening. If I take half of a sumatriptan (50mg) it knocks it out, but I am so over taking meds. Has anyone experienced a pattern like this and if so do you think it's better to just take the pain or is it better to knock them out with the .5 sumatriptan? Could the suma be prolonging this cycle? ...YUP.... it can cause rebounds and extend cycles....your gut feel on meds is correct. OXYGEN has none of these negatives ...fast, easy, and relatively cheaper compared to sumatriptan ...combining (or even alone) an energy drink (minimum 100 mg caffeine/1000 mg taurine) or other high caffeine drink AT FIRST SIGN OF A HIT with the oxygen was my go to....sometimes all by itself was sufficient. ....have you considered or tried the D3 regimen and or busting.... Thank you in advance for your insight and much love to all of you enduring these horrid headaches.
  3. .....nope...separate by 4-8 hrs. ask your pharmacist...they really know this stuff....
  4. ...CHfather has already discussed this elegantly. just to add my few cents. this is an odd combo i've never heard of and looks like a kitchen sink approach of old options. i have used all 3 (20+ total) and verapamil actually worked (at proper dosages depending on cycle) reasonably well (70% reduction in hits and lowered intensity).cypro and amitip were worthless for me (and that was maybe 18-20+ yrs ago (IOW he's reading old lit).....and little, if any reported, success with CH. guessing its the verap that's working. always my concern with multiple prevents, of these or others, ....that if this works....which one? ...there are newer meds i'm surprised have not been tried and i really second the urging of OXYGEN, energy drinks, and D3. faster, cheaper, safer alternative to traditional meds. ...then there are always the alternate methods discussed here... have the BEST track record....and make the above moot...
  5. .....ah yes, mamma don't allow no smart ass cluster bunny here....
  6. ....and not taken as such...i was riffing on your comments that are near universally true in clusterville. ....VNS works for some...worth a try
  7. ...same feelings here as Jeebs....worth a try. have always wondered about our "active" vocalizations that seem above and beyond those experiencing extreme pain. thinking back patients here for one, as i am one. totally theorizing that it is an attempt to influence "some" bodily function that will relieve our pain. sometimes it's voluntary, and sometimes just feels necessary. could it be the vagus we are hunting? dunno ...never seemed to work for me tho studies have shown that vulgarities/profanities shouted in the midst of anxiety do have, if nothing else, at least psychological benefits. since it was mostly wasted energy/made things worse in my experience, i trained myself to remain calm and non vocal while hitting the O2 and concentrating on "breathe" only. before that carried a (soon soggy) pillow to scream into in deference to the neighbors... ...i do think it behooves anyone wishing to explore vagus nerve stimulation to try out the VNS device. 'tis specifically designed to do such. i occasionally see a positive report for CH patients....but it has not caught on so apparently only works for some (who wouldn't want to be one. only one way to find out)...tho i bet $$$ w/o insurance approval.
  8. 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
  9. ....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)
  10. ...guess we're gonna have to turn around....
  11. .....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
  12. ....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... .
  13. ...another article of interest x/migraine again website Can LSD and Magic Mushrooms Treat Migraine and Cluster Headache? — Migraine Again
  14. ....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".....
  15. .....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....
  16. ....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)..
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