Bejeeber

It's so good to hear of your success Nikkk. Now I wouldn't be at all surprised if a larger dose could act as a longer term preventative for you.

Thanks for that hedzup on the dalt legality question Ricardo.

Hi Matthew, Just wondering if it could be worth trying mm as a preventative inside capsules and also in between attacks (so hopefully there wouldn't be the pain causing you to not be able to keep them down). I have no idea how 5-MEO-Dalt, which has been popular among the Facebook CH crowd for awhile now, might compare to 5MEO DMT, but last I checked it is legal and order-able online. Others more knowledgeable will hopefully be able to chime in.

I'm not sure about any of the above questions, but I can say that I don't recall a single incidence of someone generating a recurrence when dosing at the end of a cycle.

Hi Jannim, You really made a good move by joining in here, and my prediction is that through what you and your CH'er boyfriend learn, his CH experience will be revolutionized and become dramatically more manageable, as it has for countless others. A big reason for my prediction is you just connected with and got the attention of the ultra-smart CHfather who is incredibly knowledgeable about the most practical realities of how to quash CH ASAP, after spending years on end, pretty much every single day, poring over reports from CH'ers and interacting. Lots of other good folk are here too, such as the voonderbar Tucker with his offer to do the O2 walk through. Now let's stop calling the imitrex injector an epi-pen ha ha. Our pal Hipshot was featured in a National Geographic segment on CH that is extremely pertinent. Viewing it has provided a shock to the system and put CH'ers the world over on the fast path back to pain-free status (with an especially high rate of success for episodic CH'ers, like your boyfriend).

I would imagine the prednisone would be the most likely thing to credit for your first day pain free, Suzz. Since you've been on it before, it's probably not news to you that the CH can return with a vengeance after the taper, so that's something that should be braced for. I guess I'm mentioning that here more for others who may not have experience with prednisone.

Wow you DO have the best Doctor Suzz - so glad you finally got such a lucky break!

Man that'll be nice if MM is found to improve short term memory. My short term has been crummy for a longggg time now, BUT, as I have posted in the past, the supplement phosphatidyl serine is known to improve the condition for some people and it does so significantly for me. I've been on and off it several times over the past years and every time I go off I find a reversion to a definite, marked decrease in short term capabilities. In fact I tried going off for months over the past holidays and only went back on recently - I think it may be starting to kick back in now, but I'll try to blame having been off of it for some of the more pronounced lapses in my posts here over the past couple months. I don't believe it will work for everyone, as always it's a case of YMMV, but after finishing one bottle at 1 pill, 3x day, I think it should be possible for most people to tell if it's supplying a boost for them in the memory dept.

Glad to hear about that step in the right direction that I bet could be a lifesaver for many Finnish headbangers. I'm also really admiring your CH/O2 advocacy work there !! "Saint Tony Only" has a nice ring to it.

Adamlee you just got advised by one of the very best in cluster history. It looks like your CH experience could be seriously revolutionized indeed. High flow 100% O2 (not the weak and ineffective low flow rebreather O2 that was the only known game in town 20 years ago) should make a nice non-toxic replacement for the trex, but until you actually get your cluster paws on that O2, this imitrex tip explains how to stretch your doses, doubling or even tripling your supply (!), and lessening side effect risk. The terror is completely understood.

Hi Suzz, sorry you're a CH'er, but glad to see the good advice you're getting from everyone here. The HIGH FLOW 100% O2 does tend to be the main thing that will enable you to detox from imitrex while still being able to abort attacks, and then voilà ! you'll be ready to bust with mushrooms or other busting agent in a jiffy. The neurologist will likely prescribe the O2 not pure or strong enough, but fortunately there is a long tradition now of headbangers stepping up and advising others how to administer the O2 effectively.

Whoa a shaggy blast from the past! NICE that you are putting on this shindig - wish I was going to be in your neck of the country on Jan 30!

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).