Jump to content


Advanced Members
  • Posts

  • Joined

  • Days Won


Posts posted by jon019

  1. ....i'd bang some Benadryl...even with the FM. sounds like a "histamine bomb" from an allergic reaction.....more likely leading to a CH vs the other way round. it is almost spring, pollen could be around, check for house mold, new carpet?, new whatever?....  and brush any pets outside before they come in....allergens on fur maybe....

    • Like 1
  2. 1 hour ago, CaptChaos said:

    I can still successfully abort a headache in 4-7 minutes at 15ml flow. It's just that the headaches rebound after 60-120 minutes throughout the night until I get up for the day. 

    ...only a few cycles with the 1 hr wake ups for me..(O2 always worked better than day time hits!). never could figure what was different to cause this oddity ("normally" 3 daily hits) except sleep being a frequent trigger for most clusterheads (no blissful in cycle naps for 30 yrs for me)....and triggers can be transient. 

    ...have you tried staying on O2 post abort for as long as it took to abort..

    ...since CH is likely a wonky hypothalamus...which also controls sleep...a connection to CH is not surprising, and more than a few have found improvement of CH with sleep apnea treatment. worth a doc consult....it never occurred to me at the time...

    • Like 4
  3. 32 minutes ago, BoscoPiko said:

    Not sure if this is because you can no longer adjust the LPM's higher or what but find this true. (at least for me).

    ....as the tank got below half full i used to stare at the flow gauge as a form of distraction.... so i could turn up the decreasing flow as the tank approached empty. there indeed was a point where the knob was at 10 (11 if you are a Spinal Tap fan) and flow just steadily decreased anyway...bears monitoring. sometimes when aborting a night time wake up, with no lights, the sound of the hiss was all that was needed. THAT'S too much experience....sigh

    • Like 4
  4. ....an e tank would last me approx 2-3 hits and a m-60 approx 5-6. if it didn't work after 15 ins i'd quit to save O2 and ride it out (or spend a precious Zomig NS)...always worked better with an energy drink (never more than 2/dy)...

    • Like 3
  5. ....the only thing i can add here is how CRITICAL  it is to start oxygen at the FIRST sign of a hit. for me there was a very small window.... and if i missed it NO amount of O2 was gonna work. if you've ever had a cat that would suddenly and seemingly for no reason go tearing out of a room...that was me. it amused my colleagues....

    ...there are various breathing techniques and different ones work for different folks. most successful reported to be hyperventilation...can/should be started on way to tank. slow,deep breathing  in/out worked best for me, added benefit of being calming, breathe and hold another. try them all, try a combo...all the motivation i needed to find the "right" one was provided by CH itself........

    • Like 5
  6. ...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 ...




    • Like 2
  7. 9 hours ago, Bejeeber said:

    Then there's this week's discussion of ketamine infusions for CH. I've been kind of bringing it up a lot just lately, hoping I won't regret it after results are in from more CH'ers reporting their experiences, giving us a better idea how consistently/universally effective it really may be, but here I am broaching it again, with you this time @Jusnobody, because I know it's reputed to be effective for pain in general, plus brain stuff. Just wondering if you've looked into it?

    ....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....

    • Like 2
    • Thanks 2
  8. 5 hours ago, FunTimes said:

    when I was tracking everything I went old school with a pad and a pen. Filled a few notebooks then got fed up with it and threw it all out. 

    ...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...



    • Like 4
  9. 1 hour ago, Bejeeber said:

    occasionally prednisone treatment will put a CH'er into a sustained remission continuing after taper down, and it sounds like that could be an additional possibility in your case.

    .....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. 


    1 hour ago, Bejeeber said:

    I still like the D theory though. :D

    ...FOR SURE!....and provided blood levels in range is exceptionally safe and widely effective....

    • Like 3
  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...

    • Like 3
  11. 52 minutes ago, kat_92 said:

    You may just need to be a self pay patient. That’s how I do it. 

    ....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......

    • Like 2
    • Thanks 1
  12. 18 minutes ago, BoscoPiko said:

    because if I'm in a critical client meeting where I could stand to loos a project for the company I could use 30 minutes to buy me a close and am willing to suffer to keep the ball rolling at the firm.

    ... 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......:huh:

    .. 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.....

    • Like 5
    • Thanks 1
  13. 15 hours ago, kat_92 said:


    ... 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!

    • Like 9
  14. ....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 B))

    ClusterO2 Kit - Clusterheadaches.com - Online Store

    • Like 2
  15. 23 hours ago, Seattle cluster said:

    I did not know about the no nose breathing as I believe that is how I used to do it with other masks atleast on inhale. 

    ...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...


    • Like 2
  16. .....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)...




    • Like 5
  • Create New...