Jump to content

Bejeeber

Moderators
 View Profile  See their activity

  • Posts

    4,789

  • Joined

  • Last visited

  • Days Won

    279

 Content Type 

Posts posted by Bejeeber

    Where can I get Oxygen tanks in Austin Texas?

    in General Board

    Posted

    I've been in the Austin area for 7 years now, so you'd think I might know, right??!!

    But sorry, I haven't used O2 since arriving, so I'm of no help. :(

    You may already be aware that many do switch to using welding O2 when medical O2 availability or cost isn't working out for them.

    I don't want to threadjack here, but as an aside, many forum members have been needing a whole lot less O2 since pursuing the non-pharmaceutical preventives such as are discussed in the blue New Users - Please Read Here First banner link at the top of the page, in case you haven't already been looking into such already.

     

     

    • Like 2

    Introduction

    in General Board

    Posted

    Howdy, @The Count

    Glad to see you immediately got the good overview skinny from @CHfather (who is the best of the best).

    58 minutes ago, The Count said:

    There is a well-worn trope in the UK for describing suffering as “I wouldn’t wish this on my worst enemy”.

    Turns out that one has been in recurrent use in the US too. :)

    DBS implant

    in General Board

    Posted

    I think you're right, it's been 2018 since Tom contributed to discussions. I suppose you could always try direct messaging him via the site here, as that should deliver a notification to his email. 

    I do remember how much success, and pretty much a new lease on life, he'd found with busting following his DBS, and I would hope the same could work for you if you develop a renewed interest in busting and the D3 regimen. 

    • Like 1

    DBS implant

    in General Board

    Posted

    Yep @clusterheadachesurvivor aka Tom is the one other I can remember who had dbs, but he is someone I'm definitely going to remember as we met and hung out a bit at a CB conference.

    Which demand valve to buy?

    in General Board

    Posted

    The Fuster Cluckers. I just went all Sherlocky myself in a search here to date the inception of this legendary Clusterbusters and Bomba Shack house band, and it was over 13 years ago (!!) Whew time flings by in such a jiffy when you're having cluster attacks fun. :lol:

    You're an official member of the band now whether you like it or not SHallMusician, and if you bring a demand valve for sharing to the gig, I think that automatically elevates you to the position of music director, assuming DallasDenny is cool with it. :D Congratulations (??). :P

    • Haha 1

    PLEASE READ: Heart-wrenching news involving our beloved spiny's family, and how we can help

    in General Board

    Posted

    Spiny has done so much to break me personally out of cluster hell and get me PF again, I’ll never be able to thank her adequately, and with her 12 continuous volunteer years here, involving over four thousand forum posts of truly expert, helpful, encouraging guidance, I know there are countless legions of others who have benefited from the same.

    As we all know, bad (as in really bad) things can happen to good people though. Now her adult daughter is suffering from the worst sort of utterly debilitating afflictions. Of course Spiny is devastated by this, seeing her child disabled and screaming in pain every few minutes. Today, true to form, spiny is traveling across the country to be with her daughter, to help her through, and to eventually bring her home (which will need to be modified-for-wheelchair-access) for care.

    Some real funding will be needed to make this possible, and there’s a GoFundMe that members here are already starting to contribute to in an effort to bring an aspect of ‘good things can also happen to good people' to this heartbreaking situation. For me it is also at least one way of expressing gratitude for all spiny has done:

    https://www.gofundme.com/f/usn7ba-help-me-bring-my-daughter-home

    • Like 4
    • Thanks 1

    Just Diagnosed - scared and have questions

    in General Board

    Posted

    @Baby Moth, as evidenced by @BoscoPiko's reply, you sure came to the right place!

    Since Bosco covered the big stuff very nicely, I'll just follow with a bit of additional color:

    3 hours ago, BoscoPiko said:

    will this get worse?

    If left alone, or treated with certain pharmaceuticals it could, yes, but IT'S NOT GOING TO because you've happened upon the Blue Banner, D3 regimen, etc., that often enable us to prevent entire cycles - a big and most welcome deal. :D

    4 hours ago, Baby Moth said:

    oxygen

    Great that you've had the O2 prescribed. It can be essential to know that high flow/non rebreather mask O2 can really make it work great if it isn't 100% working to abort attacks when following a typical low flow etc. prescription.

     

    • Like 4

    New cycle

    in General Board

    Posted

    3 hours ago, BoscoPiko said:

    I do recall someone on here (I think it was @Bejeeber) mentioning a study that showed an increase in suicidal tendency

    You got that right @BoscoPiko, and it's also the real world experience of some CH'ers here, one of whom described it as something like a "reverse survival instinct" that gabapentin can spur. It is weird indeed, and can be experienced as not having any sort of "I want to kill myself because I can't take it anymore" component, but more like a calm and nonchalant "it would be very right to turn the lights off permanently right now" feeling, with no emotion. :o

    That said, I'm one of the few and far between whose CH has benefitted from the 'ol gabby, where it cut the number of attacks per day in a raging high cycle in half for me, which in turn made it possible for me to abort every single attack that did break through, and that was a really big deal.

    I'd advise anyone on the gab to watch out for the weird thoughts/feelings, be prepared to recognize them as the drug talking, and to fully ignore them.

     

    • Like 2

    Suggestions? Can't stop the pain the week pre surgery

    in General Board

    Posted

    Hi @gegibsonjr, what @Shaun brearley said, and this is not exactly an additional suggestion, more just a mention in case you haven't seen this discussed before - vaped DMT is proving to be an especially effective CH abortive.

    I'm pinging @spiny here because she knows all too well the ins and outs of back surgery for a CH'er and may have some pointed advice on what to demand in the anesthesia dept.

    Heck for that matter, the legendary and god-like :D @Dallas Denny just had major neck surgery, and could conceivably have a pointer. Gee, everyone is doing it - even our own bum also god-like @jon019 may know a thing or 3 about CH/back surgery. 

    (FYI, @jon019 was referred to as a bum for a sec there in a term of endearment American sense, not the UK meaning)

    • Like 3

    YouTube Channel all about Migraines

    in Migraine General Board

    Posted

    @Justin S , strategies for busting with psychedelics are discussed aplenty in our CH message boards such as https://clusterbusters.org/forums/forum/8-theory-implementation/, to which you are cordially invited. :D

    Spoiler alert: Microdosing generally isn't considered effective enough (larger-than-micro-doses are typically recommended).

    Not to detract at all from the value of a direct consult with @MoxieGirl for anyone who can land one! :lol:

     

    Clusterbusters Video

    in General Board

    Posted

    Agree with ShaunPiko, but will add.....er, wait a minute, they really went full nutshell on it, so I just have to agree with no real need to add anything.

     

     

     

    (OK, this has also partly been about finding some way to interject the term 'ShaunPiko' into the conversation.)

    • Like 2
    • Haha 1
×
×
  • Create New...