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Everything posted by Bejeeber
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First Cluster in Years - Trying to Get D Levels Corrected
Bejeeber replied to TryingToFix11's topic in General Board
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First Cluster in Years - Trying to Get D Levels Corrected
Bejeeber replied to TryingToFix11's topic in General Board
Ugh, yep that makes sense. Here's hoping this Full Monty kicks in right away! Just as the beast will surprise us by slamming us with a cycle right when we least expect it, I like to think sometimes we can get surprised by not having one kick up when we do expect it. Seriously hoping that for you @BoscoPiko! -
Sumatriptan and increased attack frequency
Bejeeber replied to CHfather's topic in Research & Scientific News
I had already piped in closer to the inception of this thread, but here I go piping away again. I semi-agree with this: ......in that in high cycle, there are those of us who will be awakened hourly with yet another attack, following our O2 aborts. That's a lotta attacks, and since I've aged into the 3 hour long attacks (when not aborted), it is a greater quantity of attacks than would have been possible without the O2 aborts. Still, I think of these hourly attacks following O2 aborts as being more like re-aborts of the same single attack that keeps just wanting to come back and break through. And the question can come up regarding whether O2 technique/set up/adjuncts could be that much more optimized for longer lasting aborts. -
Deleted. I had thought maybe you just wanted to doubly emphasize your point. Seriously though, dunno why the pesky double posts happen.
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I figure if your doc is not a headache specialist, he is unlikely to have much (or any) clinical experience with CH, hence his references to what he knows - migraine. It sounds like he is not super into researching CH so far, so I'm gonna second the suggestion of @BoscoPiko to seek out a headache specialist if at all possible. And yep, triptans and stuff are prescribed for both migraines and CH, but everyone and their clusterhead mom will tell you that one of the best things you can have prescribed by a doctor is the more CH-centric oxygen for aborting attacks. Then a lot of people 'round here (I'm one of them) and their clusterhead dad will tell you the D3 regimen and busting can be very effective, non toxic ways to prevent CH whilst bypassing the pharmaceutical RX routine and doctors in general.
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This is a common issue for CH'ers unfortunately. I don't know if it could be a possibility in KSA, but especially since the pandemic, virtual doctor appointments became more commonplace in various regions, so just mentioning that in case you haven't looked into it yet, in hopes a headache specialist might be available that way. You've happened upon advice in this thread from some of the world's most informed lay experts on effective ways to combat CH, @CHfather is one of them, and he's right about those steroids. My anecdote is I'm still trying to recover 33 years later from a too-long-on-prednisone stunt I had pulled out of desperation, and at this rate it doesn't look like any full recovery is ever going to occur! Also I found that following my numerous other pred tapers, the CH did seem to want to come back with a vengeance. I've found busting to have been more effective than any drugs for prevention, but I won't be surprised if your remission chances will be high with just the D3 regimen, if that is your main option for effective non-toxic prevention.
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I'm still seriously considering having the corrective surgery, but haven't been entertaining the thought that it could also alter my cluster status for the better. Mainly just hoping the epinephrine they need to use wouldn't set me off. Glad to learn it sure didn't for your uncle!
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I've been diagnosed with a deviated septum, and although I can't remember, and am not finding documentation for what side it is on, I'm currently convinced it is on the same right side as my cluster festivities, as I can't breathe as well on that side. @dmlonghorn May have pertinent info to contribute here, as when he had some manner of nasal surgery, I believe he experienced something to this effect: His chronic CH was relieved for some months, then returned, with probably a still unresolved question as to whether he has now gone episodic.
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Endorsing @jon019's sit in the hot bath, and @dmlonghorn 's exercise. Have personally tried the exercise, and found it to be about as effective as the freezing air. Neither worked for me in high cycle, but both did during my less intense ramp up first week or two. I only first attempted these after years of built up CH hardening though, so for someone 'only' on their second cycle, they may be more effective.....?
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All the meds of course can have bad side effects, but if you decide to try to make it through this cycle with meds, while preparing to prevent the next cycle altogether with D3/busting, the typical, and often effective strategy is a prednisone burst/taper to temporarily knock the attacks out, while waiting for the verapamil @BoscoPiko mentioned to take effect, and in emergency if without O2, triptan injections or nasal spray (NOT PILL FORM) for aborts.
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OH YES, just read @BoscoPiko's post, and absolutely caffeine, often in the form of an energy drink (like Red Bull), or energy shot (like 5 Hour Energy), tends to be the first go to for aborting attacks in the absence of O2 - or even right alongside O2, or freezing air, etc.
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Hi @Jimmy J, that's messed up that this reappearance of the CH is going on right now. All too often it is only headache specialist type neurologists who know enough about CH to prescribe O2, but if your appointment isn't with one of those, you never know, you could still end up marching out of the visit in full possession of the desired O2 prescription. CH'ers in the US having difficulty getting such a prescription have long had success just getting their O2 form a welding rentals outfit (no prescription needed, and it's purported to be the same stuff as medical O2), so you could always start looking into that, and a non-rebreather 02 mask, as a backup in case the doc visit doesn't go swimmingly. Hey since ice in the mouth helps a lil' you might be a candidate for the breathing of freezing air that has been known to abort attacks for some of us some of the time. Bad time of year for getting any of that freezing air au natural, in the northern hemisphere anyway, but if you have a car: At first inkling of attack, run, don't walk out there with ice already in mouth, get the motor running, crank the AC full blast, stick your shnoz right up to a main vent, and breathe deeply 10 min or so until attack well dissipated. A goal can be to replace the CH with a delightfully mild in comparison 'ice cream' headache, and yes, if successful, neighbors may think you've gone mad if they hear you gleefully running up and down the street at 3:30 AM waving your arms over your head and hollering "I now ONLY have an ice cream headache!, I now ONLY have an ice cream headache!", but please do us all a favor and try to remember to have at least put on some pajama bottoms if doing so. A window type air conditioner in the living space is another potential source for the the McFreezy air.
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what do you do when you're struck down at work??
Bejeeber replied to ToniEvo's topic in General Board
What Jon said. Lots of CH'ers (in the US anyway) get their O2 tanks at a welding rentals place. This may be the time to ask if she's tried the energy drink or energy shot at the very first sign of an attack? These will actually abort attacks sometimes for some CH'ers. Now if it was me being struck down at work, I'd slip out and take 3 puffs from a DMT vape, which will cause a very short lived (like just a few minutes) psychedelic experience, and will kill an attack dead cold immediately. Granted DMT can be harder to come by than O2 though for a whole lot of us. -
All I know is some CHer dudes report viagra and cialis will trigger a cycle if used, while some episodics say they don't have an issue with them when out of cycle. Similar to CHer reports about epinephrine, though it is a vasoconsrictor. The discussion left off on a hopeful note regarding trimix over at the related topic "Warning to the guys out there", which I will admit the entirety of any discussion I've seen.
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200mg. That's hardcore. I like it, and will personally be likely to try it on for size, powder in liquid style, when the need arises! I see this as further evidence that @spiny is not screwing around here when it comes to beast killin' time. For those who wish to also incorporate the taurine, I suppose emptying one of those pills in alongside could be a thing? Not sure what taurine tastes like, but hey, it's in the Pure Kick drink mix, not to mention Red Bulls, 5 hour energy shots, etc.
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I must have become desensitized to that through all the years of exposure to scandalously pants-less cartoon characters:
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6 pkts for a buck? Man that is a whole new world of cheapness - the brilliant Charles is to be commended.
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The fact that your attacks suddenly stopped when you quit smoking, and have stayed gone for 12 years since, suggests to me that for your individual case, there could be a connection between CH and smoking, even though this hasn't been seen for others. Whatever the case, congrats on this 12 year stint so far of beating the devil - it's always so great to hear of someone escaping the clutches!!!