Bejeeber

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

Alright, CHSurvivor, assuming it's the *illegal* part that's non-negotiable with you, I'll just suggest you may wanna keep an eye on the developments with BOL-148, an ultra powerful preventative with the sort of well funded clinical trials that can win FDA approval apparently beginning right around now at Harvard Medical.

Oh OK I'm just now seeing this discussion after having replied to the New Member-DBS recipient, chronic survivor topic you started, CHSurvivor. There are plants that literally grow right at our feet that are more powerful for preventing CH than any currently available drug, legal or otherwise (I say currently available, because there are high hopes for BOL-148 to become an approved and available medication). Personally I think considering these plants that nature (or "God", depending on one's beliefs) has put in our faces and said "here, just eat this, I have provided an effective non toxic treatment", to be drugs is questionable. It's certainly no surprise to me that the likes of Harvard Medical et al, have become involved in researching these plants and are confirming their efficacy for CH. The Rivea Corymbosa seeds used by indigenous peoples for millenia for instance, can be very effective for some, are at least a good starting place for busting, and many of us have found that at therapeutic levels the only side effect is a good night's sleep, with no intoxication (!) Comparing this to the vomiting of blood, 28 staples in head, infections, lack of relief, etc., or the specter of drugs like prednisone, I hope you may get a real sense of why busting is very rapidly becoming the treatment of choice for so many CH'ers, many of them middle age and older church going type folks who've tried countless therapies and only wish they discovered, or considered, this route long ago.

Hey CHS, There's a lot of very pertinent info to be found on the message board here beyond what you see on the main page. There are just an awful lot of veteran CH'ers here such as myself who after decades spent with the condition have found *busting* to provide the most effective relief. I think this Newsweek article on us and busting makes for both an interesting read and a good introduction, plus I see your dog's name is actually Buster ;D: http://www.thedailybeast.com/newsweek/2009/10/14/the-psychedelic-solution.html

A couple things about that in case you're not already up on it: 1) the injectable form is significantly faster acting tends to be much more effective for us CH'ers. Half doses (3 mg) or less will reliably abort an attack, and of course dramatically conserve fund$ and lessen side effect risk. Instructions for administering partial doses here: http://www.clusterheadaches.com/imitrex.html 2) From what I've seen the Imitrex, Zomig, etc. triptans will likely more completely block your busting efforts than Prozac or Verapamil will, and are generally detoxed from for 5 days before a bust.

Hey Bob - it sounds to me like you're doing an awful lot of stuff right, and that you're well researched indeed. The fact that you got 2 days PF after 2g seems encouraging, and please keep in mind that some post dose hits are common even with very successful busts, so you still could see some real results from this 3g whopper you just experienced. One thing I can think of for your future busting strategy is to maintenance bust between cycles, because it can be easier and more immediately effective that way. You probably already knew that, but this is only your second cycle, so how could you guess when the next one would start up? :-? That was a good first post ya left there, thanks for including the essential info. [Edit: I see CHF slipped a reply in while I was still formulating mine. That happens a lot LOL. About the SSRI issue - others have successfully busted while on them, so it's not necessarily a deal killer IMO.]

And now after that little rant of mine, onto a more positive note - hats off to those who take action against the insanity and sometimes even win. A recent case in point would be the announcement just this month of $20 million funding for trials of the ultra powerful CH killer BOL-148 with intent to bring it to market. The fact that this is taking place within the medical field itself seems like a huge turnaround to me, hopefully with all manner of sanity and mass CH relief resulting. 8-) Not that that's going to help you at all right now Bubblesup, dammit. > I hope in the meantime the home busting approach will carry you through with some serious PF time.

Yep. The way I look at it, that's just us humans for ya. :-? There appear to always have been societies that subscribe to dumb, arbitrary stigmas and taboos, often with complete buy in from the highly educated authority figures. Sheesh we can really be a bunch of idiots and jerks.Â

I second that [smiley=vrolijk_1.gif] Jeebs