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jon019

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Everything posted by jon019

  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!
  15. ....ummm.....same here ^^^^^^^^^ ....the advantage of a bag is a reservoir of O2...no waiting. i suppose if flow is high enough that wouldn't matter, but potential waste of precious gas thru blow by.. ...many use the Cadillac of non rebreathers from sister site clusterheadaches.com...this their store...cheap at any price, but $30 a screaming deal (and i aint got no financial connection ) ClusterO2 Kit - Clusterheadaches.com - Online Store
  16. ...nose breathing ok INSIDE a mask....the caution if mouth breathing with tube....dilutes the O2. ....the breathing you describe for anxiety was similar to what i did to calm the frantic panic of a bad hit....which only made it worse. when adopted (part by accident...part by "there has got to be a better way!")...the effectiveness of O2 then dramatically improved.... ...my experience with low tank volume was the necessity to monitor the resulting decreasing flow volume...actually was a nice distraction to focus on and crank up....that or pounding my head with whatever hard object was in reach, at least til i figured shit out.... ...never tried but some report better success with a demand valve (can be expensive)...provides plenty O2 while, at least theoretically, saving O2 ...plenty of incredibly sadly funny "info" on some FB forums....at least here it's easier check out our (my) biases/history...
  17. .....are there any holes in the mask? tape 'em/plug 'em....you want pure O2 with no room air mix... ....make sure flow is high enough for bag to refill for next breath....you don't want to be waiting... ...some find breathing directly from tube better...just be sure no nose breathing while using mouth tube... ....downing an energy shot (2 oz/5-hr energy type quick, easy, no sugar) on the way to tank enhanced effectiveness immensely for me.... ...absolutely critical to start O2 immediately upon perception of hit...stay on after for as long as it took to abort...if i waited or could not get to tank quick enough there was a point where no amount of O2 would work. since it is best to avoid triptans as only a last resort abort, learning your hit "tells" is vital. is not always obvious to the clusterhead as many report that others around them can see a hit coming before they do....weird but true. ....hyperventilation (some start even before getting to O2 tank) is reported best method....others (me) find slow DEEP breaths just as effective with added benefit of calming effect....another is breathe and hold. try various methods to see which works best....a combination worked best for me (slow/deep/hold..repeat), sometimes within same hits.. ...no, reliable sources of medical/welding O2 will not give you "bad oxygen"....note that scuba tanks are compressed air, not O2 on the off chance this is what you're using... ...schedule changes are poison to clusterheads....a sadly limiting factor for many....i had to maintain very specific routines...especially sleep and eating (low blood sugar a trigger)...
  18. ...hi ft...welcome! very interesting post...thanks, herein my comments... Cluster Headaches has no triggers. ...gonna have to disagree....aint no absolutes with CH except the pain. lotsa triggers for me...., but, like you say...when IN cycle They attack in regular intervals. ....definition of CH....then it changes... Certain foods and alcoholic drinks will make the attack periods last longer and the headaches much more intense. .....naw, not for me.... 35 yrs....a hit was a hit no matter the cause... A headache that last 10 to 15 minutes with a beer in your system might last a few hours. ...if my hits hits were 10-15 mins i wouldn't even be posting....90 mins every damn time....tho several cycles the hits were 0-10-0 in 2-3 mins, i was very willing to accept that over unaborted 90 mins.... Alcohol and chocolate for me can trigger an attack while in a cluster period - i got ralnot while I am in remission. Alcohol is the worst. Avoid it at all cost while going through a cluster period. All kinds. Alcohol will only make things worst. YUP! Eats dry soups and teas often. Stay hydrated. ...absolutely but watch them dry soup mixes.....lots with msg (massive trigger for many) in various hidden forms. hydration is critical for CH and many other issues.... Responsibly consume caffeine such as hot coffee. It helps; each individual might have to figure out how to use coffee for their own selves. ....caffeine at the wrong time for me was a trigger.....as an abort ONLY, in the form of 2 oz energy drink, vital. folks really do need to figure this.... A warm shower during an attack can help.LY, i ...hottest setting i could stand on hit spot helped as long as i could stand....hit was back full force when stopped... Relaxation is also needed. ....a trigger for me....20 yrs of hits 20 mins AFTER work stress stopped nearly every day. relaxation in the form of deep/slow breathing of oxygen at first sign of hit, enhanced with energy drink was my salvation... Stress does not cause clusters; stress causes the attacks to last longer and makes it take longer for us to return to remission. ...different strokes for different folks...stress was ALWAYS a prevent for me.....cortisol/adrenaline? dunno. my longest remission was while caring for Ma her last days...and will executor. days after that 5-6 months....BLAM! hits were back to "normal" If you are an anxious person pre- and post cluster periods you may be subject to panicky feelings; panic attacks. This is part it this disease. The pain is intense and during periods you had then will executorve to take time to deal with your feelings so that you can expedite a return to remission. ...the mental aspects of dealing with CH are incredibly important. i considered maintaining sanity thru this nightmare as a lifetime achievement.... You have to remain active and have a regular sleep pattern and wind down after activities slowly - never to fast. ...ok...i walked 5-16 mi/dy on the job, which felt great, but not any effect on CH. maintaining a consistent sleep routine, actually any routine, was very important for me.... I had not had an attack since Oct. 2021 until a little before Christmas Day 2022. I am about three weeks into a cluster period now. Sometimes I get about 8 - 10 attacks a day imainly at night and some early in morning around 9:00 am. Most lasting about 30 minutes and some lasting longer up to 3 hours. I have had these a long time, about 20 years and can share remedies that might helpful to people. Thanks for listening and have a wonderful day. ....do you use oxygen? life changing abortive for me. please do share, we depend on it... best jon
  19. ...look up OXYGEN and/or Durable Medical Equipment for your area. Lincare and Apria are several of the major players....some pharmacies carry O2 but the options are limited and prices higher. don't let anyone talk you into a concentrator...not pure O2 and not enough flow for most...
  20. Cause= wonky hypothalamus, ain't no fixing a deep brain issue...yet. but we can manage the effects....
  21. ...too bad...like Jeebs said...an old one with limited success. gets tried when "nothing else works". some success with infusions that they do in a hospital setting for intractable and constant hits. overuse has such nasty side effects that it has fallen WAY out of favor. your neuro seems so enlightened that this is surprising...
  22. ...dang it, bad berries when one of the kids is down...glad you shared so we can send vibes...
  23. ....worth noting that a 2 oz 5 hr energy type drink has MORE than RB of the caffeine/taurine we need.....and is TSA friendly!
  24. .....the vitamin D3 regimen has a far, FAR, FAR better success rate than any of these expensive proprietary supplements...careful not to throw so much stuff at the beast that when you tame it, and you will....ya don't know what did it! leaving you at ground zero for next cycle and the same dance starts all over again... ...really, do everything you can to get OXYGEN ...is life changing for so so many....then strongly consider busting!
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