Bejeeber

Hi Marilyn, That's horrible about your dad having CH - especially with it getting worse. The fact that you're asking about truffles leads me me to guess you may be in the Netherlands or thereabouts, since we've seen that psilocybe truffles are available and legal there, and CH'ers have had success busting wth them. Sorry I don't know how much to take (I know it can depend on the type of truffle though). If you don't get an answer in this thread, you'd probably be able to get your question more readily seen and answered if you were to start a new topic and include a summary of your question right in the title. Also, one of our members here, Oscar, is from the Netherlands and is familiar with truffles - he's a good guy who has advised many others in this regard, and I imagine he'd welcome a private message from you. Here's where you can do that: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=viewprofile;username=566A7A786B190 Finally, searching for "truffles" and such in the top left corner google message board search box may yield some results (I briefly tried, and found some discussion of truffles but wasn't immediately finding guidelines on how much to take). Best luck to you and your dad - you're an angel for helping him, and I bet you'll be successful.Â

I remember seeing that too - it was a massive LSD overdose given to an elephant for a little "experiment", and I see now there was an ensuing controversy over whether the LSD or the barbituate/thorazine administered afterwards caused the death. http://www.erowid.org/chemicals/lsd/lsd_history4.shtml In any case injecting an elephant with LSD is crimminal and extreme cruelty in my book.

That's right neighborly of ya b.g., thanks! I hope to not be needing those numbers for awhile though as I am in the LHZ (Lucky Headbanger Zone) with vit M currently keeping the 'ol McBeasty down for the count. I bet the positive experiences b.g. and weatherman have had with Apria are much more typical indeed, and my persnickety local rep was just an anomaly.

Man that's fantastic that Apria has been so good to you b.g.! Unfortunately they weren't bending over backwards for me so much here in Nashville - I guess the service and value can vary according to local management. It was a few hundred dollars for O2 from them over the course of 2-3 months or so, and I had one of their gals calling me and threatening to cut me off because she calculated that I was using more than my low flow prescription called for (I was of course going for the 'ol high flow action). I found myself reflexively LYING and saying the doc approved high flow to which she responded she would call the doc and confirm that, so the whole deal was getting mighty creepy very quickly. Technically she was justified, but I guess you can see why I wasn't as thrilled with Apria as you. Also, at the outset a rep said they'd deliver O2 7 days a week. Imagine my delight when I called late on a Friday when in the middle of a whole lotta high cycle CH aborts and they said "Whaaaa? No we don't deliver on weekends and our last delivery has gone out today! Now you go have fun with your CH attacks and empty tanks - have a nice weekend".Â

Nope. Yep. Congrats on knocking that beast down with the Vit M nofear! [smiley=thumbup.gif]

Hi Kristi, Sorry, not sure about the O2/mask issue - hopefully someone will be along to help sort that out. :-? Regarding the other preventative options - The RC seeds CHfather mentioned can be (legally) ordered for next day delivery, though I suppose that'd be sooner than you'd actually need them since you'd first need to detox from the imitrex for 5 days.

Hey There LeftEye, I like what CHfather and BlueB said. A lot. Ya came to the right place. 8-) I doubt you have to be concerned about quality controls when ordering spores for growing, since they are legal to order in most states (assuming for now that you're in the USA). It's not like a black market thing. We've seen legions upon legions of CH'ers report ordering spores, and other than some that didn't produce fungi for whatever reason (likely due to growing conditions), I don't recall anyone having other problems with what they've received.

Hi Kristi, I think Ajax mentioned something there that pertains to the "if it's my only choice" issue, which is there are a whole lotta CH'ers (not to mention medical researchers) who've found that busting is indeed a more effective preventative choice than any med out there. Prednisone is horrifically dangerous in sustained high doses beyond the conventional burst/taper dosage. And the likelihood of hip replacement surgery for anyone who goes there is just the beginning of the risked permanent side effects. So yep pred is just a transitional med, commonly used while buying time for the verap to kick in. You might find the video of the talk by the founder of this site, Bob Wold, on his long journey with all the meds and eventually busting, to be very pertinent. It has a happy ending. Here's the link: http://vimeo.com/10918637

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