Bejeeber

Hi Mike, Glad to see you received that reply with the condensed details from CHfather - I agree with all he has said. The next time you're expecting a cycle or suspect one could be starting up I believe there's a good chance some preventive psilo could actually knock it out. Meanwhile if it is the injectable form of sumatriptan you are using, I'm notorious for always wanting to check to see if new members here are aware of how to stretch the doses and conserve supply, plus lessen side effect risk.

I've heard others ponder whether their past drug use may have caused their CH. I understand the regret and/or guilt regarding past recreational drug use and the tendency to blame current afflictions on it, but I haven't seen any evidence whatsoever of it being a cause of CH. The reverse is actually true with psychedelics, and as MG said, many of us have looked back at times of past psychedelic use only to realize we were in remission then, VERY LIKELY courtesy of the psychedelics. Plus there are plenty of CH'ers such as ClusterHeadSurvivor who had never done drugs. Now if you actually got bonked a good one or two on the noggin, THAT appears to be a nasty trigger indeed for CH, there are plenty of stories of head injury related onset of CH. And echoing MG again, your genetic link with your CH'er maternal grandfather sounds to me like it could be the most significant "cause" of your CH.

Nice.

Lithium strikes me as one of those drugs that is REALLY going to get some widely varying reactions from individual to individual. I had tried it with no dramatic improvement for my CH, also no dramatic side effects. Personally I think of it as being low on any modern day list of stuff to try for CH.

Dreamrider, I see so far some of the more popular and widely adopted newer therapies have been mentioned such as the D3 regimen - if I may suggest considering more of a focus on message boards than doctors for learning what's new (if you haven't already been doing so), that's where I've been noticing CH'ers finding their most effective strategies. Personally I've been partial to this message board. The annual clusterbusters convention is good too for learning of the freshest developments from medical and non-medical expert types.

GOOD ONE.

My CH onset was 1980 so I guess this is the longtime CH vets thread so far. Thing is though, I've been very lucky to experience ever expanding remissions, so compared to someone with yearly cycles, my onset would be the equivalent of more like 1990-something. ANYHOO, that's a dam good and interesting post dreamrider, THANKS. Especially since you go back a long time with CH like meself and DD, when you hear "oxygen" you may be likening it to the only way it was prescribed in the bad old days of yester-decades, which was low flow, rebreather, which wasn't so effective for a lot of us. Meh, come to think of it, as informed as you are, I suppose you're actually well aware of the high flow 100% O2 that has become heavily favored by modern day motivated CH'ers, but thought I'd cram my patented little mini-rant in there anyway. The morphing of the way your CH cycles behave sure is the same sort of thing I've seen a lot of other long time headbangers report. Here's hoping that kip 11 slapback was indeed a final death throe for da beast for this cycle!

Hey there bigmark, Whenever someone says O2 hasn't worked, I know what they mean. It didn't work for me either. The thing is though, 99% of the time it didn't work because pathetic low flow rebreather O2 was prescribed. At this point I think I may have seen a thousand CH'ers report giving up on O2, not knowing they'd been given a bad prescription. It's getting kind of old LOL. (I was super active on another message board before this one, blabbing away on thousands of posts there too, so I guess I'm ready for my special lollipop now or some vigorous slaps across the face and a command to shut the BLEEP up. Or both). ANYHOO, whenever someone says O2 hasn't worked, I want to ask if high flow 100% O2 has been tried? (When I found out about the high flow 100% O2 and tried it, it worked for me, as it does for almost all of us). And for forever now, I've been suggesting that people who have seen results from high flow 100% O2 consider identifying it as such when recommending it to newcomer CH'ers and not just suggest "O2" or "oxygen", which most everywhere except for message boards still means the weak, ineffective crap. BTW, there is a lot to learn here about super effective preventatives too.

So many song candidates could fit the bill, enough for for pretty much everyone's taste to be offended by at least one of them, ha. I think the Fusterclucks should open with a medley off them all at the first inaugural CB meet and greet at the Bomba Shack. And FYI, 1LS, you're an official member of the Fusterclucks. It's a large band.

Hi DocLeila, What DD said. Plus the phenomenon of cycles suddenly and unexpectedly morphing and/or extending in length after many years/decades of a consistent pattern has been reported time and time again here. Fortunately for some of us, the remissions can extend in length too. It sure sounds like you've been largely successful lately with minimizing the attacks, and I would hope adding one or more additional angles of counter-attack could enable you to land a knockout punch. Something like the D3 regimen DD mentioned, or a new busting substance. Licorice root has been favored pretty heavily by some herbal enthusiasts BTW. I think every Episodic fears going chronic whenever their cycle becomes longer than previously experienced, but I think it's too early for you to be too concerned about it right now.

I know "Hollywood" Dan / Hipshot of National Geographic cluster fame was having some success there for awhile at least with a different sort of nerve block - an occipital facet nerve block, after the the usual types weren't effective for him.

I fared better upon clicking - it took me directly to an interesting site indeed: http://www.920coalition.org/ "........The 920 Coalition is a collaboration of non-profit organizations and individuals organizing events around the world on 9/20/2015 to bring attention to the role of psilocybin mushrooms in our society and health care system. Members of the coalition bring a wide range of perspectives and expertise on psilocybin and a shared belief that this plant medicine plays an important role in culture and healing. The broad prohibitions on the use of psilocybin in many countries are deeply misguided and there is now overwhelming evidence that they should be changed. The Coalition is working to increase awareness of recent medical research as well as traditional healing uses that have been practiced for thousands of years in many regions of the world......"

If you're on mobile/touch screen you may see some faint greyed out text near the lower right of your post area - pressing on those will hopefully bring them up bold, and one of them should be *delete* (I'm just basing this on what I see on my old steam powered iPad).

In the US lots of us bypass the doctors and prescriptions and just go get some welding O2, which is the same stuff. Somehow I imagine such a "Wild West" sort of stunt could be very difficult to duplicate there though, sorry.

What Spiny said. If a CH'er is going to take a triptan, slow acting imitrex tablets are known to be ineffective, whereas the fast acting injections are the powerfully effective standard. Triptan using CH'ers in the know have widely adopted an imitrex injection extending strategy that conserves supply and lessens side effect risk: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

I think it's practically undeniable that you can experience more attacks when aborting them with triptans such as zomig. It's possible to experience more attacks when aborting with O2 also, but still O2 is much healthier and preferable for all kinds of reasons. Many CH'ers feel that the the CH period can be extended by triptan use, but I am personally not sure about that yet, because I know there is a common tendency for the periods to just lengthen regardless as the years/decades go by, as happened with me before triptans were even available. Fortunately for some of us, the remissions can also lengthen.

Oxygen is good, yes, especially with a higher liter flow than uninformed doctors generally prescribe, and at a 100% concentration. If sumatriptan pill form works for him that is good (and unusual, as for most of us it is too slow acting). Injectable can have a pretty much 100% success rate for many of us, but of course it's a drug with potential serious side effects, repercussions and backfirings, hence the move by many of us over to O2 instead.

Awesome indeed. [smiley=thumbup.gif] [smiley=thumbup.gif]

That would be great if you have indeed found him and his practice is close enough to you. And you'll even have a back up - a super highly recommended headache specialist, Brian E McGeeney, MD, who many here swear by, and who regularly gives talks at CB conferences is in.......wait for it...........BOSTON. Which appears to be closer to you than Burlington.Â

Hi Leslie, I just ordered some from Iamshaman on June 17 with no issues - they were in stock - if you haven't tried them yet. And AlexItalian, I too think staying at your same regular dose is still reasonable when maintenance busting, not in cluster.

He may have to catch a plane to Canada for the 4th! Oh wait a minute, scratch that, flights are a trigger too.  > :-/

Yep I'd classify naps as almost a universal guaranteed trigger - to be avoided at all costs when in cycle.

Well you just pushed all my *heartbreak* buttons, and pushed 'em twice! :'( I'm sure you're helping remind a lot of us to appreciate our pets to the max while we still got 'em. Here's a toast to Buster, pretty much the best pal anyone ever had, and to you for being the best pal he ever had. I'd say maybe you should do a presentation on Buster at a ClusterBuster conference, but if I was there I'd have to leave the room because I hate crying in public!

Yeah me too, like Pxie-Elf's Stadol. That was one epic fail for me in the pharmaceutical abortives dept.

Dam, DampDD, yer gettin' slammed over there! Here's hoping your new domicile, acreage and sanity all weather it intact. When you're stuck indoors due to weather I sure hope you produce an autobiography or memoirs or some such.....between the fraction of the DD life I know of that includes Nam, touring with the acid rock band Orange Sunshine, mind blowing out of body spiritual/supernatural experiences, CH, etc., that could be a seriously riveting read!