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Posts
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Everything posted by Bejeeber
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Nice tip for affordability there, and nice work with stretching out those doses.
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@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: 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. 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.
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Suggestions? Can't stop the pain the week pre surgery
Bejeeber replied to gegibsonjr's topic in General Board
Best of results to you @gegibsonjr! Other CH'ers here have had successful back surgery - ready for you to join that club! -
I've nothing to add except an endorsement for the impressively condensed best of the best advice already offered.
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Suggestions? Can't stop the pain the week pre surgery
Bejeeber replied to gegibsonjr's topic in General Board
Just piping in to back @CHfather up on the typical effectiveness of that 60 mg pred level in a burst/taper (then of course watch out for a return of attacks when the dose gets down to around the 40 mark or so). -
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. 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.
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Suggestions? Can't stop the pain the week pre surgery
Bejeeber replied to gegibsonjr's topic in General Board
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 @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) -
@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. 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!
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+1 for the cluster gallows humor.
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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.)
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Cluster Headache Medication & Psychedelic Use Survey 2023
Bejeeber replied to MichelleC's topic in General Board
Each of us could have been looking a lot better after that way overdone rager of a booze fueled 'Survey Complete Partayyyy'. The last thing I remember is repeatedly shouting "I'M A CLUSTER BUSTING MICK JAGGER, MOTHERF**KERS!!!" while vigorously strutting in the middle of the highway - that was probably around the time law enforcement got involved. -
Cluster Headache Medication & Psychedelic Use Survey 2023
Bejeeber replied to MichelleC's topic in General Board
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Cluster Headache Medication & Psychedelic Use Survey 2023
Bejeeber replied to MichelleC's topic in General Board
I took the survey and am now strutting around all proudly and junk as a result. Please everyone take this survey thang. -
Can see that dad was making sure to stay between her and the "deep end".
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She's having a blast! Is that some manner of doggie life jacket she has on? If so, seems like a good idea for aiding with floatation for an older dog.
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Hi @Frenchie, I'm copying some excerpted info from @CHfather's Basic Non-Busting Info, which I consider to be a particularly invaluable resource, below: Batch has recommended what he refers to as a “redneck” approach, in which hyperventilating with room air is alternated with using pure O2. Read more about that here: https://clusterbusters.org/forums/topic/4919-batchs-hyperventilation-red-neck-bag/ Stay on the O2 for 5-10 minutes after you have aborted the attack. For many people, this holds off future attacks. Many people find that drinking caffeine or some kind of energy beverage as they start on the O2 significantly improves their abort time. More on caffeine/energy beverages below. People find different ways of breathing that work best for them. I have mentioned Batch’s suggested hyperventilation strategy as one example. In general, you should be inhaling deeply as you begin, holding the air in your lungs for a second or two, and then deeply exhaling, to the extent of doing or nearly doing a "crunch" to force out as much air from your lungs as possible. Looking down toward your feet as you use the O2 has been shown to help with aborts. Caffeine/taurine. For some people, caffeine alone can help to stop an attack or lessen the severity of the attack. Some folks keep strong coffee on hand for that purpose. Some folks use caffeine pills, and some people take taurine pills along with caffeine pills. They take those pills at the first hint of an attack, or a couple of hours before a predictable attack time. Many use energy beverages. Because some ingredient in energy beverages in addition to caffeine is believed to help with attacks (believed to be taurine), many people use those. I recommend energy shots (such as 5-Hour Energy) at first sign of an attack. Shots are quick to drink down and they have more caffeine than energy drinks, such as RedBull, that are much larger. Many people say the shots work best for them when they are as cold as possible. For many people, energy shots/drinks don’t keep them up even if they drink them at night. In addition to all the “standard” energy beverages, some people like “V-8+Energy” drinks.
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Glad to hear of the cluster free part - what a big deal that is!! Wondering if you're considering some additional busting session(s) in hopes of alleviating the depression, since it's known to potentially help with that too?
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Okay HERE WE ARE at July 3rd - what 's the verdict @BoscoPiko, did we make it a full year without an attack?! I'm practically assuming so. In light of OldArn's bad news/bad results yesterday, some good news is sorely needed, and I figure that is your jam today.
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Going on a year?! Now that's something big to celebrate - Bosco-Independence-from-Beastcapades Day! Belief in jinxes is pure unadulterated superstition. This is my more recently adopted, previously declared intellectual understanding , and I repeat it publicly with intent of keeping so many years of my knocking on wood with crossed fingers habits tamped down. I just hope I didn't jinx the whole thing - wait, DAMMIT see what I mean? Still lots of dejinxification work left to do.
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No shadows on the days on? Sometimes it seems like the real use for most meds out there was discovered inadvertently when it was noted that they alleviated some unanticipated thing. Thank you for discovering that Semaglitude should be investigated for off label CH prevention, trials starting immediately . You should get credit, royalties, and they should change that ugliest of names to 'Boscofixya' or similar.
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Man I all I can think to say is "Aughhhhh!" Have been pulling for Dallas "Hell and Back, Several Times" Denny to make it through in a reasonable facsimile of one piece. It seems that phase is complete....now for the good juju* to really kick in for the significant relief you've got coming, so you can fully exploit those longevity genes that found your dad living so impressively long, and you can enjoy a good nuther 3 decades or so without this manner of BS! * That's how I roll
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Between the weather in St. Thomas and the "special" rum punch elixir served at the Bomba Shack there (back in the day anyway), I have to think @spiny indeed just suggested the ultimate cluster bunny suppressing combo platter. Obviously we do all need to move directly there immediately if not sooner, without passing go or collecting 200 slammers.
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If your weather in north Texas is anything like mine in central Texas, I suppose the violent storms and/or frequent weather that threatens such can't be all that great for those with barometric sensitivities. My hope is that your busting will fully adjust you to the new barometer!
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All I can say is I've lived for years in each of these places, and of those, the weather is just ridiculously the best at the beach communities in San Diego. It only requires that you be a double zillionaire in order to afford retiring comfortably there. L.A. (incredibly mild weather at the beaches) San Diego (the most unbelievably mild weather in the continental US at the beaches) Seattle (Meh, it's OK weather-wise) Nashville (Love it to death, but the #1 worst on my weather list) Austin (close runner up to Nashville for volatile weather)