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jon019

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jon019 last won the day on January 29

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  1. ...home again home again jiggedy jig!!!! ....i'm jelly of the "handles"....could use those myself.....
  2. ...for one easy payment of $19.99 + s&h i can help you focus Shaun....
  3. ...no spit....there's a bug!!...i just lost another entire post here. ....and smartphone autocorrect comes from the devil's fingertips in my experience
  4. ...hmmm...well...if we are talking intractable CH then ya might hafta go there...but there are newer BETTER options like busting, D3....and as Bejeeber notes, ketamine....which is incredibly promising! all assuming that proper oxygen use with energy drinks is not an effective breakthrough of these measures abortive...please do read ....you would be wise to proceed cautiously with lithium. in my CH "career" of over 20 meds tried...it is the only one offered i refused outright. some few have indeed found effective, and perhaps infusion beats the old pill form. but, it is a med with scary potential and dialing in the right dose difficult and critical (too little and no effect, just a bit too much, and YIKES!). this dance requires extended/extensive blood work and monitoring which is intrusive on "normal" life ...
  5. ...my fingers are too >>>>>> to even try that ...but similar happens to me online.....tis a bitch when your msg disappears with one key press....one word from completion!!!!
  6. ....no regrets either way Jeebs....as usual we gotta find out for ourselves...share among ourselves....then bring the world into our reality. this one so promising it deserves repeated attention. the potentials for CH and mental health issues demand it....
  7. hi Sam...welcome ...yes on RC... ....see the blue banner at top to start: "new users-please read here first" lotsa good stuff...feel free to ask any questions best jon
  8. ...same here....but that was because every cycle/triggers/pattern was same for 23 yrs when ECH. for me pointless, but still believe can be a valuable tool to detect subtleties of importance... ....seems we have discussed this a few times and i thought there was a newer version of journaling, but the search function fails me....perhaps someone recalls that thread(s)? ....one of my favorite diagnostic stories...and i believe from National Migraine (now Headache) Foundation newsletter... was the physician who noted, and used in diagnosis: "boy, you folks (clusterheads) sure do seem to all journal, i see it consistently". it was kinda implied as an OCD component of CH that i really don't know is valid or not ¯\_(ツ)_/¯. but i agree, we do seem to have the need.... ....the other favorite was the physician who asked, and considered a definitive diagnostic indicator of CH, a positive response to the question: " have you thought/considered/contemplated suicide?" is called suicide HA for a reason, and i firmly believe an absolutely essential question for any diagnostician....sorry for the thread divert...am easily distracted... "
  9. .....yup, could be...the very first methylprednisolone IV and taper stopped a cycle mid cycle for me....it was miraculous and i thought i had found THE answer. sigh....never worked again (2 more trys) after which i avoided as there are potential serious consequences.....and other measures got dialed in. ...FOR SURE!....and provided blood levels in range is exceptionally safe and widely effective....
  10. .....a headache specialist is absolutely critical....most neurologists don't have any more knowledge about CH than any PCP. i had brain surgery (not CH related) from a highly skilled neurologist... who saved my life. out of curiosity and to amuse myself, i later asked him about CH. his response: "don't they use inderal for that?" yeah doc, about 30 years ago...he also had no idea about O2 as an abortive. same lack of knowledge from 4 or 5 previous neuros...and one even diagnosed me (WITHOUT telling me) as having "basilar migraine"...i don't even know what that is...except NOT! ....what immediately struck me in your post was the seeming diagnosis based on previous notes...sheesh and DAMN! i now sign up for every mychart from every provider...it's YOUR info. and it's plainly evident from BoscoPiko's description of her experience that a forthright, direct, face to face relaying of the nightmare that is CH can go a long ways with a provider able and willing to listen...
  11. ...yup ...they call him MISTER Tibbs...or rather "Master Member" for a reason.....
  12. ....yup, same for me over the years about half the time because some insurance providers covered and some didn't. some O2 shops are stubborn about this and you may need to shop around....go talk to them in person so you are a face and not a phone call. funny (not ha ha) turned out that self pay or ins copay was exact same $ out of pocket. still, there are advantages to being covered, as it means your diagnosis is more recognized in the system (insurance and O2 shops) and that could be important down the line. i'd start out self pay then work toward coverage. an advocate doc (find a headache specialist if at all possible) in the process can be critical, as a "letter of medical necessity" can (and did for me) change denials. and always, ALWAYS, ALWAYS APPEAL any denial from an insurance company...always seemed to me that the first denial was automatic and they were hoping you would just go away... DON'T. and besides the doctors note, provide any documentation of medical lit/research supporting your claim (e.g. oxygen along with triptans is medically recognized as THE primary abortives(s) for CH).... and besides, O2 is WAY cheaper than triptans, w/o the rebounds and nasty side effects......
  13. ... this made me smile cuz i been there... once was lead on a critical sales presentation to some very important clients.... was seated between company President and VP having to prove myself to them too. a hit started right when i did, and quickly got to an 8...there was NO out, i just had to keep going for 45 mins. when the tears started leaking hit side i turned my head so they wouldn't see. might have been the bravest thing i ever did in my life..... and i have no recall of anything i said.... but i made the damn sale! they might have wondered why after the handshakes i ran out of the room tho...... .. thanks for sharing... triptans have their place... i never go anywhere w/o a Zomig ns..... but only as a last resort abort for years now. too many of us know exactly what you experienced.....
  14. ... yeah.... he's wrong! .... crap like that is what makes FB such a dangerous minefield for clusterheads... mixed in with that absolutely essential care, compassion and vital info is stuff like this that does a disservice.... especially to the folks new to CH and those w/o the time, desire, ability, means or motivation to go in depth. i mean no disparagement to the many good folk on the many sites... and i'm there too.... but the info is just so scattershot and unreliable it's scary.... with much difficulty checking the bona fides of the poster or researching a topic.... ... the pioneers of busting figured a better way.... the info is right here.... and the Yales and Harvards of the world are finally getting on board.... .... if the anecdotal reports from thousands of clusterheads on the dangers and consequences of overuse (even "proper" use) of triptans isn't enough.... it's right in the medical literature and on the dang label/insert of the script!
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