Bejeeber

Hi Jennifer, Here's the link to the Bomba shack topic that kindly Dallas Denny is rooting around for (I keep a hot link to it handy now 8-)): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1297450426 The Bomba shack is in Tortola, which is across from St Thomas. Mushrooms are legal there and last I heard, available for purchase.

T'boy I wouldn't be at all surprised if your aunt has been prescribed low flow, rebreather O2, which was cutting edge in the 1970's. Unbelievably doctors generally are still stuck in the 1970's, not even realizing that the high flow, non rebreather O2 method of administering O2 is so much more effective. There are rare individuals for whom O2 doesn't do much, but I'm hoping your aunt is about to see a major improvement as she steps into the O2 big leagues. And if your mawmaw isn't getting that consistent of O2 results, hopefully the same for her too. There are chronics in your mawmaw's age range who have busted and gone into remission BTW. 8-) I think you're transitioning from feeling helpless to being extremely helpful.Â

Chris, I'm hating hearing about what you're experiencing , but glad to see the good advice CHfather is offering. Like so many others, after 30+ years since the beast first visited me, and a metric tonload of prescriptions over the decades, I have embraced busting as the most effective solution for prevention, and O2 as my first line abortive (I'm also on the D3 regimen now). I encourage you to seek out O2 and follow through on CHfather's other recommendations ASAP, but let's go ahead and talk drugs too since you're currently on the 'ol cocktail's worth. Imitrex. If it upsets your stomach, it sounds like you're on pill form. The vast majority of doctors prescribe it this way. The vast majority of doctors are utter a-holes when it comes to CH. Slow acting pill form is for migraine. Fast acting, more effective injection or nasal spray forms are for CH. Meantime, about the only usefulness I've heard of for imitrex pills for CH, is that some CH'ers who have a predictable time an attack will hit take the pill one hour before and can prevent it. Here's the imitrex tip which outlines how to get 2 to 3 aborts per injector instead of just one, and makes for less expen$e and less side effect risk: http://www.clusterheadaches.com/imitrex.html We'll be looking forward to when you have O2 as your primary abortive and can reserve imitrex strictly for emergencies if at all. Neurontin. Some CH'ers swear by it, more swear at it. Personally I found I had to take it up to 2400 mg per day (on a neurologist's advice) to get prevention from it. It prevented about 50% of the attacks, which beat the heck out of 0%, and made it worthwhile for me at the time. The kind of sleep deprivation you've been experiencing will drive anyone entirely cuckoo. Most of us have considered giving up before finding some significant relief. Don't you even think of that anymore - you've arrived at a place here where you'll find out how to acquire a fearsome but non toxic arsenal for beating this MF-ing beast to a pulp and sending it screaming home to it's mommy. Which is a good, good thing.Â

Uh oh, sounds like your aunt and grandma have probably been getting all of their treatment info from doctors. This place is riddled with CH'ers and their supporters who know all too well that what the medical establishment has to offer can be one big prescription for a tremendous amount of pain. The fact that you've stopped in here could very well be a huge turning point for your beloved aunt and mawmaw, one in which I know you'll be very happy to have played a major role in, tomboy. As Ron said, CHfather laid a motherlode of priceless info on you, and I think it's important to re-iterate this part: And this:

Hey Rob - Jeff asks the questions that cluster-enquiring minds want to know, so I'm looking forward to hearing more, so we can be cram maximum informative-ness into our responses. You asked about energy drinks - I know that they can work for both migraine and cluster if chugged right at the onset of an attack. The shots can be handy for this. It's the combo of caffeine and taurine in them that is credited for their abortive capabilities. Personally I can't abort a CH hit that's determined to go to a high Kip with an energy drink, but milder hits, yes.

Yeah Zenchow! Sounds to me like the very welcome signs of the end of a cycle indeed. Keep after it as clustermom suggested, and you just may be able to thwart the entire next cycle - how cool would that be?!  8-)

Oh my darlin' Deltadarlin, a good thing about me and internet forums is that my notorious mumbling isn't as much of an issue as it is in person. 8-) Something missing from me so far in this thread is a BIG thanks to you OUCH'ers who organized this shindig and pulled it off so well, and I know you were a real ringleader DeltaD! The food was good too, although there was a bit of a generation gap that cropped up when a horde of us were marching back into the hotel for the banquet. It went something like this: Jeebs: Alright, I'm ready for some cluster-vittles! Val: Some cluster-what? Jeebs: Vittles. That's what we call food here in Tennessee. Val: <eyebrows raised, silence> Jeebs: You need to watch some old '60's Beverly Hillbillies reruns! Val: Why would I want to do that??!!

Well this has quickly spun out of control. ;D

You don't have to answer that Kaboom, Dan knows full well that Dreamboat is my middle name. In fact this is the boat I rode in on: http://www.youtube.com/watch?v=KodlzjCxfig

And Jackie is one of the super nice OUCH'ers who even lent me her phone when mine broke. Thanks again Jackie, and looking forward already to the next time we can lounge around on the outdoor benches and blab it up. 8-)

Roast a few marshmallows for us Mystina.

Sandy! So good to meet you too - sorry, I lumped you in with the "other fine CH'ers" due to your huge 3,000 + post count where you've been helping people over on ch.com, which had me forgetting for a second there that like me you are bi-forum , and are over here too! ;D Yeah Bob has me all fired up about BOL - he sure makes a very good case, and I know so many of us are chomping at the bit for the next trials to get underway. I practically came out of there chanting BOB! BOL! BOB! BOL! ;D

Woopsy - just clicked on this topic for the first time now, sorry. :-[ Thanks for thinking of me though. Unfortunately I wouldn't have been able to attend even if I had responded in time.Â

Live and in person at the Nashville OUCH conference today! And plenty of other fine CH'ers and supporters whom I previously knew only in cyber form. Yep - and very unexpectedly even Kaboom(!!), hands down the most fabulous surprise attendee of the event, who told me something very AWESOME - she's gone 5 days in a row PF even while riding on planes!! (Please forgive me Kaboom if I'm risking any jinxy-ish action by reporting this here ) Bob (Wold, clusterbusters founder) was enthusiastically welcomed for one of his patented, well presented and seriously informative talks on BOL and clusterbustery stuff, and he was even presented with an award with great fanfare and applause for best research I think it was. I told him that I think there were some sort of anti-busting poltergeese in the room or something though, the only thing that could account for the big clusterbuster charts falling off of the walls during his talk. It was a GREAT day in in the clusterhood.  8-)

Nobody can claim you're not qualified to hand out one of those! ;D

Without a doubt! Sorry to hear of the O2 setback though - this is unfortunately a very common experience when dealing with O2 suppliers. I'll just echo the recommendations for a minimum 25 LPM regulator and an optimask.

Hurray for the return of Clustermom13! Your Bonkerhood (kinda like a knighthood) is now officially bestowed.Â

Hi Cristy, I can tell you that there are some chronic forum members here who have been helped by mushrooms so much that they are basically no longer chronic. They've gone into remission! There's no absolute guarantee this will be the case for every chronic, but certainly worth pursuing IMO. The bad reactions to mushrooms that I've seen reported are basically 'bad trips'. I've had a couple of them myself, but at a busting dosage level, they were more like feelings of anxiety regarding very real issues affecting me and others around me, not a big delusional freak out or anything. It was so unquestionably worth that temporary unpleasantness a thousand time over to be able to stay in remission. Taking the herb skullcap with the mushrooms is reported to ease anxiety, and set and setting is important. I think as long as you read the warnings: http://www.clusterbusters.com/warning.htm and don't have any of the issues mentioned you'll likely be fine. Many CH'ers very much enjoy the experience, and in fact my first bust was an enjoyable one.Â

Hey Thoro, What CHfather said, only LOUDER! ;D And are you administering your O2 in the most effective high flow rate/non rebreather mask way as outlined here?: http://www.clusterheadaches.com/O2/index.html Asking because even the supposed top notch specialists can be dumb about this and prescribe the much less effective old antiquated low flow/rebreather O2.

CHfather makes a very good point about how at least some CH'ers find RC to actually be a stronger busting agent - my previous commentary is colored by my personal experience and what I've seen a couple others report, but we all react differently. I guess I should just say if you try one busting approach without results, don't get too discouraged, the next one you try may do the trick. And since the head in the freezer trick helped some, you might still wanna try the car A/C thing - I find it provides a stronger, more effective stream of cold air than the freezer. I doubt exercising between hits will help all that much - it's more of the sort of thing where at the very first twinge of an attack you BOLT, and if it works, you will have aborted the attack before it has gotten very strong. Cool that razorPP lives by you!Â

Hey Zenchow - well I bet the busting option could really help you, I hope you're able to get ahold of some busting materials ASAP. Although some of us find that Rivea Corymbosa seeds don't seem to be as strong acting as mushrooms for instance, at least the RC is legal to mail order and possess (it's relatively cheap too), so that could be something you can look into while awaiting the big busting guns. 8-) Also please do look into that welding O2 we were yakking about over at the ch.com board. Besides no prescription being required, from what I've heard it's also cheaper. 8-) But meanwhile, today, none of that is going to do you any good, granted, so FWIW here's what I do that can abort my hits when no meds/treatments are available (although it mainly just works for me during the first ramp up weeks of an episode): 1) At onset, run to the car and deep breathe freezing air from the blasting A/C vent through your nose. Combined with an energy drink and possibly ice cubes in your mouth this might abort an attack. 2) Ultra vigorous sprint til you drop type exercise at onset. (I'm not the only one who can potentially kill a hit with these techniques BTW, I've seen several others report some success) Hang in there Zen, it sounds like you're poised to be treating this stinking beast to a walloping counter punch or 3. 8-)

Hey Kaboom - so good to hear from ya. Admiration here for your ability to look at the glass as being half full, when your best week = 3 days PF during a really busy time with work and single mom-ing. Granted, 3 days in a week pain free beats the ever livin' heck outa 7 days painFUL, but with your weekly combo treatment, we're pulling for you big time to achieve that 7 days per week PF Nirvana.Â

Hi Skibo, Ron really dished out the good advice there, and I'd just like to say ditto to all of that. Some additional comments in response to your questions: 1) My personal experience with CH and (I know this is the same for many others) is that the pain is most intense right behind one eyeball, stronger than the other associated trigeminal nerve pathway pain that can hit the teeth etc. 2) About the calcium channel blocker (probably verapamil?), that's actually a tough call in your case, since some folks can bust effectively while still on it, and I don't know that there is wide agreement about how much it may interfere. 3) Other ways to keep things under control (besides the #1 abortive choice of O2 that Ron Mentioned) would be energy drinks with caffeine and taurine for possible help aborting attacks, and for prevention, the high dose vitamin D3 regimen that appears to be working for some CH'ers could be worth looking into -Â it is discussed here: http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1291969416

Oh a sports drinky-ish version, interesting indeed. 8-) Funny how it even actually contains the lemonade and calcium ingredients of the D3 regimen (but it doesn't look like there'd be enough calcium really at 14 mg to officially qualify).

Man family probs SUCK! Sorry to hear that, but glad about the still kicking thing.Â