Bejeeber

Hi Ravyn, what THMH said, plus when someone reports a low success rate with sumatriptan I tend to go out on a limb and guess that they've likely been prescribed the pill form. Is that the case with you? Inhaler and injection delivery methods for sumatriptan are much faster and more effective for CH, and many CH'ers reach a 100% abort success rate with injections. I still think of sumatriptan as something to only use in a pinch when the high flow O2 100% isn't available though.

Just postulating here, but I tend to think of CHfather as a little more of the Jeopardy contestant type as opposed to the NASCAR fan type, so maybe that's why he doesn't know what "goody powders" are. ;D Heck I haven't followed NASCAR myself, so that's probably why I too don't know what goody powders are. And I was definitely never qualified to be a jeopardy contestant, so I guess I just don't know jack about squat. ;D Well there's the imitrex tip - I totally know about the imitrex tip! :-?

Mine too have typically built to a crescendo then gradually fizzled out.

Gotta love hearing that best ever type of news! You are right Domino, the above assertions are certainly generally true, but as can happen with every rule, I've actually seen some exceptions. For instance an occasional CH'er who has an absolutely predictable attack 1 hour or so after falling asleep has had some success preventing it with an imitrex pill at bedtime. Also some CH'ers are known to lie down (and writhe) during an attack. I think this can depend on severity of attack and personality of a given CH'er.

Happy vibes sent, Ajax, the M will set things right. [smiley=thumbup.gif] Thank gosh indeed for that back up bullet. Good work having the contingency plan built into your arsenal - you weren't kiddin' when you said you never wanted to get caught off guard again. 8-)

Yes, I'm afraid that's typical. When CH'ers in cycle are told to wait months it basically constitutes criminal negligence IMO. Of course an actual headache specialist would be the only type of neuro to bother making an appointment with - the garden variety neuros usually don't know jack about CH, but that won't stop 'em from winging it and prescribing all manner of wrong junk. Just FYI - the abdomen - just to the side of the belly button - can be a practically painless spot to inject. My experience was the first injection induced all manner of cringing and flinching and false starts, but once you've actually taken the *plunge*, ya realize it's easy. Nothin' to it. No biggie. Granted, some people have more of a needle phobia than I do.

So glad to see the cavalry has swooped in - POUNCED really ;D. The info dished out so far is rock solid and invaluable, Kristi. I think you're smart to consult on the latest developments with these most excellent and knowledgeable folks here - it will make a BIG difference and bring effective ways to fight off the beast. LOL thanks for filling in 'til I got here CHf. 8-) And now allow me to expound! An imitrex injection user (granted we don't know yet if it is the injection form you are currently using) who is having 3 attacks a day but has just one 6 mg syringe of imitrex per day can instantly solve that predicament by following the instructions in the above link. That method is well established and has proven successful for 100's (at least) of CH'ers including myself. Notice the link dates back to 1999. I also like this Newsweek article on busting for CH, I think it makes for a good, well written, interesting intro to the topic: http://www.thedailybeast.com/newsweek/2009/10/14/the-psychedelic-solution.html

I'm sorry, I've seen it discussed for years now, but haven't seen anyone report success with it for CH. I coulda missed something, I hope I'm wrong about it mainly being for migraines.

Hi 4my, I sure hope you can get the 'ol hubby to seriously look into everything CHfather pointed to, as that was a most excellent individualized info packet he supplied regarding stuff that lotsa CH'ers have found to be more effective than what the doctors tend to prescribe. At the risk of earning myself a vigorous and well deserved wrist slapping, I'll post the same observation here that I did to another recent thread about short term memory. I feel my memory is not great, but it is OK, and that is a significant improvement from the genuinely bad memory I was experiencing before I was on the memory/cognitive supplement phosphatidyl serine. There are various brands, but I know this one works for me - 3 pills a day, one with each meal: http://www.iherb.com/Now-Foods-Phosphatidyl-Serine-100-mg-120-Vcaps/745 After finishing one 120 pill bottle at the 3 per day dosage, I figure anyone trying it could assess whether they are getting a benefit. Regarding the blackouts, I do recall Ron, one of the members here, speaking of how his CH'er son Michael, who has a history of especially severe CH, was known to black out at a certain point during a major attack.

Sorry I can't answer that question, but I imagine some other CH'ers around here might be interested in visiting that site.

As far as public perception is concerned, I think it would be more productive to get the name changed to something much more accurate than "cluster headaches", rather than blaming people for not getting what our condition is about. Here's my latest analogy I just dreamed up: What if the most excruciating affliction known was something where it felt as if the nerves of your teeth were regularly, spontaneously and relentlessly being drilled with tremendous intensity beyond what any dentist drill could do, with zero anesthesia, and not only did this condition not respond to painkillers, but there was very little the medical field could do for it while it dropped the sufferer to his/her knees every time it hit? What would be a good name for that affliction? Cluster toothache? NO!! Should someone be concerned you may commit suicide over a toothache? NO. Should someone be concerned you may commit suicide over a backache? NO. Tummy ache? NO. Should someone be concerned you may commit suicide over a "headhache"? NO. Backache, stomach ache and headache refer to milder conditions, as soon as you tell someone you have cluster "headaches", you have basically LIED, and totally given them the wrong impression, entirely WRONG information, and they can't be blamed for believing you're just whining about a headache. Everyone gets headaches. We need to take some responsibility here, stop dishing out the pure BS telling people we have "headaches" and stop doing it yesterday. Does that qualify as a bonafide rant? I guess I feel kind of strongly about the "H" word LOL. [Edit: Dammit CHfather you beat me to the punch as always, slipping your post in there while I was still writing mine. Must learn to type faster. Jerry remains fastest gun in the west. ;D 8-)]

Hi Mom O' Teen, So sorry your son has CH, but so glad CHfather stepped in here and gave you the best crash course you could possibly hope for to get you up to speed on how so many of us are proceeding. Lots of us have been frustrated indeed with what conventional medicine currently offers for CH, have felt need to take our care into our own hands, and have been successful with it. Of course so many of us immediately dismissed psychedelics for CH as insane quackery when we first heard of it, but Harvard Medical is all over this for good reason and we hope to see a 100% non hallucinogenic version (BOL-148) available by prescription before too long. For future reference, this Newsweek article on the subject is a very good read IMO: http://www.thedailybeast.com/newsweek/2009/10/14/the-psychedelic-solution.html There's nobody anywhere who can give you a more focused summary of critical info for CH relief than CHfather , so please study his reply very carefully.

Not kidding about this one - I spoke to a gal who said she and her family (who I think she was responsible for) barely escaped in the middle of the night with their lives and just the PJs on their backs as their home burnt to the ground. She said her hair turned white by the next day, and she never had a CH attack again. Too bad Spiny has informed us that scaring doesn't always work. Otherwise folks such as myself who can be scared by a roller coaster such as Colossus at Magic Mountain could spend a lot of time at amusement parks for therapy. It would suck to stand in a long line for a ride while hoping to abort a hit though!!

Sigh, yep I think a lot of us have heard that tired cliche of a response a time or 3, before we just gave up trying to explain. :-?

I find that getting my Omega 3's from flax oil doesn't bring any burping issues. What this means though is that I'm not buying into the assertions I've seen from the very vocal (and sometimes hysterical IMO) Dr. Mercola that animal source Omega 3's are the way to go. As loathe as I am as a vegetarian about advising anyone regarding chowing down on animules, there is this claim from Dr. Mercola about Krill oil and fishy burps avoidance: "...it is now best to obtain the important omega-3 fats with DHA and EPA fatty acids from a high quality krill oil. In addition to being very high in omega-3, krill also contains almost 50 times more antioxidants than fish oil, which prevents the highly perishable omega-3 fats from oxidizing before you are able to integrate them into your cellular tissue. Additionally, the omega-3 in krill is attached to phospholipids that increase its absorption. This means you need less of it, and it will not cause belching or burping like many fish oil products."

Very interesting about the take a week off thing Ricardo. I'm going to try to remember that one.

Hi MG, I think your idea of at least upping the dose sounds worth trying. I do think of 1.2g as being a little on the lower side dosage-wise. Mixing it up does appear to have brought results on occasion for some others - I know you've tried RC aplenty, so yeah that mostly leaves paper I guess. Well unless you have some peyote growing in there in your english garden, or if there's a surprise announcement this week that BOL-148 is now available over the counter with special introductory coupons. Dan has mentioned that facet (as opposed to regular old occipital) nerve block injections have been providing him relief from chronic-ville for a couple weeks at a time.... And heck for all I know, Potter's classically succinct reply could have it's merits for a very daring and extremely motivated pyschonaut/buster...?Â

WOW. That is like a CH world record. And here I think I'm going to the moon and back with 2g. You are no lightweight CH, not by any stretch of the imagination.

Apparently Jeff isn't so "barometrically inclined" since we know he resides right there in barometric stability-ville but he can still get royally slammed if not able to bust, especially when enduring some super stress. So maybe let's not just flippantly leave our vitamin M back home when we all go tromping down to SW Florida, people, OK?Â

Looks like it's time for Spiny, the poster child for barometric pressure fluctuation as a trigger, to load up the belongings and the hubby in a U-Haul and make the permanent move to SW Florida by the end of the week. That'll leave you one day for packing, Spiny. 8-)

Looking forward to seeing everyone too, and thank gawsh you'll be able to hop back across the pond this time Moxie, you're a major positive force here and it wouldn't be right to have you go missin' at the conference shindig again. And that goes for you other fixtures (and casual visitors) here too who didn't make it last time - you know who you are - no excuses this time! Gee willikers now I hope nothing gets in the way of my attendance or I'll be one bonafide jerkface for making the above comment.Â

Just FYI - There is at least one CH'er around here who actually routinely uses ginger to quell shadows. I would suspect MSG first for anyone whose CH attacks are triggered by Asian food.

If there's a typical profile for a CH guy I think I might fit it. I was in my early 20's minding me own business driving on the Long Beach freeway towards LA when this pain outa nowhere just started behind the eye, eliciting a WTF?! response. OK the Long Beach freeway thing isn't typical, but the early 20's thing is apparently common. Another common aspect for a cuckoo subset of several guys on the CH forums Lenny and I have talked to, including Lenny, is that it started in the year 1980! :-? Maybe it was just some sort of omen that a full decade of horrible popular music and fashions was about to ensue. I did the typical routine of having teeth pulled, blah blah etc. before going to a stone age pre-internet information hub known as a *library* ;D, where I quickly found in a book that I had CH and O2 could be used to abort (the self diagnosis was confirmed by a headache specialist several years later).

The birdman rocketh. 8-)

What Pos1964 said!Â