Bejeeber

Hey Matthijs, Welcome to the US! Other than the medical stuff, I hope you'll like it. You very well might receive insurance through the love of your life's employer (you don't necessarily have to be married), so I'd check on that detail if you haven't already. Some insurers are better than others about covering imitrex, but I think they're the exception to the rule. This long heralded "imitrex tip" will allow you to conserve supply while reducing side effect risk: https://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1361807077 And you'll be living in the land of the free-to-procure-yourself-some-cheaper-welding-O2, if insurance isn't doing you right with the medical O2. Yeah it looks to me like it is definitely time to be trying out the high flow 100% O2. I understand the psilocybin truffles there can be mild, can I ask if you dosed at a level where you experienced tripping, and did you detox from imitrex for 5 days beforehand? A fantastic thing about the US is that's where some of the helpful folk here such as CHfather (who is known for helping with some critical, even lifesaving details) come from! 8-)

Hi Dave, First of all I'll opine on this: I don't see a particularly compelling reason to entertain that worst case scenario concern just yet. From what I've seen and experienced, the weird morphing of your once predictable CH attacks after 20+ years episodic is actually kinda NORMAL for an episodic. Yep, the CH can take some cuckoo left turns after decades of convincing us it's behavior is ultra reliable, happens all the time. The good news I suppose is that you may even find your remissions extending longer, which happens often enough. Now that your CH has shown it can go into overdrive intensity wise, and/or will return after 90 min, you'll need to hit it with an O2 rig that packs a heavyweight counter punch. we're talking 100% O2 at a higher liter flow, which very likely will be more effective. Here's the good info on that: https://clusterbusters.org/?page_id=77 You also sound to me like one prime candidate for knocking the CH cycles out altogether with busting. Here's a riveting National Geographic segment covering that subject and featuring our forum member Hipshot/Dan: https://www.youtube.com/watch?v=qFuL7pcShDk Awright, now I'm going to hit "Post Message" and see whether CHfather has beat me to the punch with a reply. His advice is golden BTW - taking it very seriously can result in tremendous CH relief.Â

Well isn't that a common profile and common experience for CH'ers here! Linda and Tom, if you didn't see it on TV, I suggest you watch the internationally aired National Geographic segment about our buddy Dan (forum name: Hipshot) and his fairly typical, eye opening, jaw dropping even, experience with busting, an approach a lot of us have found to be a MUCH more effective preventive than any toxic pharmaceutical: https://www.youtube.com/watch?v=qFuL7pcShDk

Dang another study indicating our hypothalamuses suck. And blow. Or at least the connections to and from the haypothal-aroni may be screwed up...? I'm trying to come up with a catch phrase that could sum this study up in a way my pea brain can grasp.Â

What CHf said.Â

Welcome to ya, Lisa and hubby. CH'ers tend to learn aplenty here indeed - and then they often put that knowledge into action and actually find an improved level of relief. 8-)

Steroid pack: It is a temporarily very effective preventative for a lot of us, while we're at the high dose, and for the very rare individual it can even break a cycle (don't even think of counting on that though!). It commonly messes with the personality in the aggression/hot tempered dept., yes. The main risk/drawback as I see it is the CH can come back with a vengeance after the necessary taper down. Staying on it longer than your prescribed burst would be extremely dangerous, permanent side effect-wise. Hopefully the verap will be kicking in by the time the pred steroid is tapered, which is the standard plan, and which is why they are prescribed together in this manner. OK that bit you probably already knew - sometimes I don't know when to shaddup.Â

This is just tragic - it has to hurt beyond what any words can describe. So sorry to hear it, and I hope thoughts of Jacob being in a better place can bring some solace.

Venting: good. Molding and busting supplies run dry: bad. :'( I can imagine how your heart must've sunk when you discovered the molding. Dammit. Regarding sansert, I know it has had some positive mention here in recent times, and some had good results with it, so I hesitate to rain on the parade, but I remember it from when it was widely prescribed back in the day (they were dishing it out like candy!), and BOL-148 it is not. It plain doesn't work for a sizable percentage of us, and even feels quite toxic to some such as myself, so I caution fellow headbangers against counting on it to be some sort of elusive guaranteed CH killer med. I'm hoping somehow some springtime busting supplies and PF time make it your way ASAP Vickle!

Cool. Too bad they had to edit out the mention of LSD and psilocybin and just say "street drugs" in the televised version, but otherwise a good report. 8-)

[smiley=thumbsup.gif] [smiley=thumbsup.gif] It must've been good to get a break like that, but dam that is so not cool to have the beast back again. > Here's hoping for another mamajuana like beast squasher to come your way ASAP, with even longer lasting results. Hell I'm sure you'd be down for some PERMANENT results, starting many years ago!

Curious whether she's tried the occipital facet nerve block injections that at least at one time were providing Hipshot with total relief for 2 to 3 weeks?

Hey aneur-x, sorry to read they hit a nerve while in there, but glad to know they were able to go back and deaden it! If I'm not missing something here, it looks like the unique cause and treatment of your CH doesn't particularly correspond to the ordinary CH experience, so there's not exactly a call for us all to run out and get us some of that snazzy new fangled RF lesioning for ourselves. It's a dam interesting report though, thanks.

Well here I go again veering off on an off topic technicality, but I'm all too familiar with said leg cramps MG, and it turns out there really is stuff you can do about them. Go pinch your philtrum. Jeez that sounds like some crude insult, but doing so can actually knock out a leg cramp toot sweet. OK I only just now looked up learned what the cuckoo vertical groove area between the upper lip and nose is actually called (philtrum), but here's the deal - when that cramp hits, the 'ol philtrum is a super effective acupressure point, and when pinched it works great for most people for relieving the cramp within 5-10 seconds or so. "Location: Two-thirds of the way up from the upper lip to the nose. Benefits: This first-aid revival point has traditionally been used for cramps, fainting, and dizziness." These cramps tend to be a symptom of a magnesium deficiency (which is common in CH'ers BTW). Potassium can be involved too. Personally I've found they can be prevented altogether with diet. It's the difference for me between waking up with raging cramps every night and zero cramps. Daily doses of organic celery and organic golden or russet potato skins, plus a dill pickle (all electrolyte rich stuff) can do the trick. Has to be organic because synthetic fertilizers kill the soil and cause the leeching of it's minerals that would've otherwise been found in the food grown - possibly a reason some people are magnesium deficient to begin with.

Dun.

 2 things immediately come to mind: 1) That completely sux 2) That entirely blows :'(

Hey uncBerd What they said. 8-) You just got replied to by 3 fabuliciously well informed types in a row, and when you're fortunate enough to have CHfather start dishing out info for you, rest assured there's always gold in them thar hyperlinks! Plus, Cool. Well 100% would be cooler, but just wanna verify that you're up to speed on the partial dose injection approach that revolutionizes the imitrex experience for many a headbanger: http://www.clusterheadaches.com/imitrex.html You're not alone with that superstition behavior. ;D Some of us continue to hang around when out of cycle, or when our family member CH'ers are out of cycle, but we're insane unusual in that regard. Those meds are brand spankin' new by my standards! Yep the "official" expiration dates for imitrex are widely considered to be chock full of baloney.

Hi timmyy, Since the O2 and the mushrooms serve different, but complementary purposes (the O2 is for aborting impending attacks, while the mushrooms are for preventing attacks altogether), a lot of us have successfully employed them both in a dual pronged strategy. They can make a great combo. 8-) The best case scenario involves using O2 for aborting attacks while detoxing from meds, then not even needing O2 anymore after mushrooms have sent the CH into remission. Remission, sweet remission is of course what we're hoping for you.Â

All I can think to say about that is WTF??!! What a rip off. > Fingers crossed that the "Over the lips, past the gums, look out you f***ing beast idiot, here mamjuana comes" counter attack will conk your dragon a good one on the noggin and we'll see how he likes it for a change.

Ugh that seems like it sums the situation up pretty bluntly but accurately. :'( At this point, drawing from memorable Ricardo and Jeff quotes, this topic could be retitled "Patience and a buttload of hallucinogens vs surgeons just wanting to cut on peoples brains for money"

Hi Robert, I've seen plenty of other CH'ers over the years report onset following a head injury, so as you may know, you're definitely not alone there. Glad to see our preeminent CHfather is right on the case with his trademark condensed and spot on advice pointing to the most effective treatments.

What Jeff said about apologies, ashmologies. ;D

Sorry, coulda picked a better time to whip out some attempted pseudo tuff love. But not knowing when to shut the crappity smack up already, and having the distance of the Atlantic ocean to protect me from a vigorous and possibly well deserved face slapping , I'll close with this attempted zinger: When someone (like MG) has said "if I get to hungry, my body goes into panic mode. I can't think straight, I am incapable of making a decision, even about what to eat.", it reminds me of a certain low blood sugar related state, which can be called hypo-whatever, but is a real thing that a certain percentage of the non-diabetic population experiences, and for which (DOES THIS SOUND FAMILIAR?) tests/drugs/doctors may have little to nothing to offer. Glad to hear your Snicker barring is actually rare these days BTW. Jeez now I realize I coulda skipped launching into the entire misguided lecture series. ;D I'm still finding DrTy2's mention of low blood pressure intriguing. Of course there's often a good natural way to treat this sorta stuff, and besides pickles 8-), I'm recalling that licorice root is known as an effective treatment for low blood pressure...

Interesting - I saw some TV thingy once where low blood pressure patients were supposedly stabilizing their blood pressure by eating pickles (?!). And MG it has been long established that you have all the signs of being hypoglycemic (as am I) so ya think maybe it's time to get a wee bit smarter perhaps about eating ultra sugary crap like Snickers that spike the blood sugar level way back up in a real jiffy (weeeee!) but correspondingly tend to then induce a low blood sugar rebound (BOOO!) ? The nuts in there are good. It would be pretty basic common sense-ish for a hypoglycemic who has been lectured about this before to eat nuts but skip the honkloads of poison sugar. <End of tuff love lecture>

I'm sorry you were wrongly prescribed that, as so many CH'ers still are. 10 LPM with nasal canula is just pathetically ineffective for a large number of us, and it is not by any stretch of the imagination high flow 100% O2. The good news is there's a very good chance O2 could still work for you if administered effectively. So yay for that.Â