Hello from Chicago

[bounty]

First time poster, long time lurker, longer time sufferer.

I'm a 31 year old male who lives in a suburb of Chicago.  I am an episodic, 1-2 cycles a year, approx. 6 weeks per cycle, pain switches back and forth between eyes the duration of the cycle with no distinct pattern.  I treat with an O2 concentrator at it's max 12/l (no mask, straight from the tube!), oral triptan, and energy drinks.  Sometimes one, sometimes a combination of all of them. 

Have always suspected weather, temperature, or barometric pressure triggered a cycle until a few years ago I flew to North Carolina on a business trip during summer and started getting them.  My cycles went from February and November to February and August.  I ruled out weather again for the last several years until a bow echo(weather term) hit our area a few days ago with a dramatic shift from hot to cool and I got hit that night.  Now I'm back to the weather theory!

But as you all know - these things are nuts!  So varies by individual and the only predictable thing about them is that they are unpredictable and will shift on you the second you think you're starting to understand them!

Regardless, after suffering for 10 years I'm ready to explore other options.  I feel fortunate that I have treatment options and my case while trying - seems tame compared to some of the other members of this society.  For you, you have my respect and I applaud you and anyone else suffering out there for your bravery and courage.

I have a few questions - RC or fungus?  I'm open to either but have no clue how to get my hands on the latter.  Are RC a good place to start or are fungus more of a sure thing?  Next question - for those with success using the bust technique - how long after the start of a cycle does it take to bust?  Does busting just stop the current cycle or does it keep future cycles away as well? 

Thank you very much for your help.  If there are any Chicago area suffers that want to chat - feel free to message me!

[CHfather]

bounty -- welcome!

Concentrator is a really bad option, for so many reasons: low flow rate, noise, and less than pure O2. If you're not getting a quick and lasting abort from your O2 (or maybe even if you are), you want a tank, at least a 15 lpm regulator, and a good mask, designed for people with CH: www.clusterheadaches.com/khxc

Most people here are skeptical about oral triptans, too: too slow to work.  (If you're taking those triptans now, you'll want to "detox" for five days after your last dose before busting.)

Busting will stop the current cycle; preventive busting will often hold off future cycles; busting at the very beginning of a cycle will generally shut it down pretty fast.

I guess you'll hear various opinions here about RC vs. psilo, but I think there would be general agreement that since you can get RC right away and you don't have access to psilo, RC is where you should start. Success rates are very high with RC.  Some very knowledgeable people think RC is actually more powerful than psilo; the problem is that the potency of seeds varies considerably, so it's harder to calibrate doses than it is with psilo.  Lots and lots and lots of people here have busted successfully with RC.  (It has the additional advantage, for some people, of having virtually no psychedelic effects at the dose levels needed to treat CH.)

You should look at the various files that are available, in particular these three:

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731

http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130612

Some very fine folks here from the Chicago suburbs, including a ClusterBusters founder and hero, Bob Wold.

[MoxieGirl]

Hi bounty, welcome to the group.

I wish, like the rest of us, you didn't have to be here. If you know what I mean.

I live in England, so can't help with where to get them in the States. I was/am chronic, and used to get hit every 2-3 days, up to 5 times a day for over a year. But like you, I felt mine were quite tame compared to most of the wonderful, but unfortunate people here. My clusters tend to be 5-30 minutes, and seldom disrupt my sleep. So I already consider myself lucky.

I busted both with shrooms and seeds. Started with seeds because they were easy to get. Then, a few months ago, I grew my first crop of shrooms, and have 1 dose left from it, which I'm taking tonight. It was a small crop, being my first one, but I've been able to dose weekly now for 5 weeks. The last 3 weeks I've been 100% cluster free. 21 days without a hit! That, I think, is about the longest I've gone for 2 years.

I found seeds worked well too, and I started having cluster free days into the double digits after busting with seeds (started back in Dec). For me though, I think I like the shrooms better. But it is well worth trying them both, if possible, as each person is different and many find the seeds work really well.

Again, welcome to the community.

Renée

[bounty]

Thank you both for the advice, support, and links.

I know that I need to upgrade my current treatment plan.  My current regime is effective, but relief is in 20-30 minutes.  Maybe a better plan could reduce that to minutes! 

I'm the one to blame, though.  This may seem odd, but having relatively short cycles is strange from a psychological aspect.  Because I'm out of a cycle for so long I go back to my normal life and completely forget that I have a severely debilitating disease.  The last thing on my mind out of cycle is "I need to get an O2 tank, better mask, etc." There are periods of time when I'm in denial and think they won't come back and then BAM like a freight train they are back and it is too late to do anything because I am struggling to get out of bed for work.  This may not make sense to you all, but it's a strange phenomenon.

So my resolution going forward is to become more proactive before the onset of my cycle by upgrading my treatment plan and exploring other options to be prepared with.

And lastly -  I notice there are a lot of members here who struggle financially or don't have healthcare coverage or both.  Makes me depressed.  Is there some sort of fund/charity or can we start one up so that we can get these people what they need in the form of treatment equipment such as masks, tanks, etc?  We need to look after our own.  I'd be willing to contribute! 

[diamondmaker]

OK, denial... it is simply the self preservation instinct. I recently had to go through a series of studies when I wasn't in cycle and had the hardest time trying to convince myself that I truly suffered as much as I said???? Ya BullSh@t!

I think that is the biggest challenge episodic's face, facing the fact that the beast is real, and always there. I got T-Boned on the freeway on my motorcycle and the first thing I did after tumbling down the wrong way on the freeway was... jump up and say "I'm all right" just before I collapsed. Go figure.

Please donate to clusterbusters.com... they will eventually cover it all.

[spiny]

bounty,

Yes. As an episodic, I understand your denial. Out of head out of mind.  :

Being prepared to head off a cycle is a great way to insure a quiet fall or winter.

What ever you can get first, as the saying goes, will be the best.

Weather: It affects a lot of us. The barometric pressure drops and we get hit. So yes, weather is an issue. Rising pressure is good , for me, while dropping pressure is bad. Therefore, flying is bad, my mountain is good except when I have to go off it into the flatlands and back up the mountain. Up=falling baro. and bad. For many of us, not just you or me. You are not alone with this one. So, keep the barometer in mind. Some days the rogue hit will remind me to watch the barometer and act accordingly. If a weather front is moving in, be prepared. 8-) IE: Have your O2 ready and energy drinks or coffee. Rogue doesn't mean cycle, but I find it to be a warning.

Glad you logged in so we can show you how great this community is at supporting fellow CHer's

You can bust a current cycle and you can prevent a future cycle with this method. Preventative methods sure beat killing a full blown cycle. Easier and faster. They both beat toxic meds that we think are working only to find out that the dragon was out to lunch for 4-5 months!

All the best!

spiny

[bounty]

Thanks Spiny.  As a fantasy fan - I'm a bit of a dragon slayer at heart.

[spiny]

[bounty]

Best quality U.S. source for RC seeds?  Want quality over quantity - someplace that overnights?

[CHfather]

There's been a lot of discussion about the quality issue here, bounty.  I'd guess that the most common site that people use is www.iamshaman.com.  We have had good success with that site, and also with www.psychoactiveherbs.com.  I suspect they will both overnight.

[bounty]

cHfather - appreciate the quick response - what is the general consensus on HBW vs RC? 

I notice iamshaman only has HBW and the other site won't resume shipping until the 14th.  hmmm...was hoping to try busting sometime early next week.

[CHfather]

You probably missed the "More" button under the "seeds" category at iamsham. I think this link will take you to the page where the RC is:  http://iamshaman.com/eshop/10Browse.asp

RC is strongly preferred over HBWR, if only because it is much, much easier to prepare.  Some people say HBWR is "stronger," but I've never really understood what that means in practice, since you use much less of the HBWR and so, as I understand it at least, you still get roughly the same amount of LSA (and LSA is LSA).  I think there are a couple of people here who have had success with HBWR but not with RC, but the vast majority do fine with RC.

Although in your first message you mentioned "quality not quantity," I'd say you want to order at least 150 seeds (not very expensive in the scheme of things), so that you are sure to have enough for several doses.  (Although it's also true that while it says "100 seeds" or "50 seeds," nobody's sitting there counting them as they package them, so you usually get more than the number they say you're going to get.  And of course, you could order 100 now and then be able to order more at regular shipping rates if you feel it's working well for you.)

[bounty]

I got 500 seeds overnighted to me from IAmShaman.  Happy to support a local business :-)

Thank you for your help.  Hoping to bust Monday night - thinking 50 seeds.

[CHfather]

50 sounds reasonable.  When I first got here, about two years ago, 20 was considered a fairly bold first dose.  Then, as more people reported their experiences, it crept up to about 30ish.  Now we've seen lots of people take 50, 60, or more with no psychedelic effects (and, in almost all cases, no significant stomach upset or other physical symptoms).  I knew someone who took 150 and became kind of dopey for a few hours (drunkish), but that was all.

The key is really to take enough.  The research shows that (as you would expect) people who get too little LSA get no benefit, but in general those who take a large amount don't get more benefit than those who take enough. At least, that's what the research shows so far -- future data might change that understanding.  Since the LSA content of seeds varies, 50 would presumably make it more certain that you are taking enough.  (There was a woman here a while back who reported that her cycle ended after doses of 10 and then 12 RC seeds.  She was also doing the licorice root regimen.)

[Bejeeber]

Hey Bounty,

I'll second everything the good CHf says.  8-)

The RC I ordered from Iamshaman last April was good and potent, so I figure you've likely picked a winner. I've noticed they routinely supply more than was ordered, so don't be surprised.

[bounty]

Hey Bounty,

I'll second everything the good CHf says.  8-)

The RC I ordered from Iamshaman last April was good and potent, so I figure you've likely picked a winner. I've noticed they routinely supply more than was ordered, so don't be surprised.

Thanks for the affirmation and piece of mind.  Any suggestions on quantity for my first dose - you think 50 is a good starting point?

[Bejeeber]

Yep I do. I've dosed in the 70 seeds range.

I think my first dose was 45 or 50 at bedtime - all I felt was a minute of nausea (I didn't strain 'em) and a much better night's sleep than usual. Then starting next day no CH symptoms. 

For someone who's never tried any busting substance, is worried about these things, and wants to test the waters a little at a time, start slow blah blah....25 would probably be good.

But 50 has still still been absolutely NUTHIN' side effects wise compared to the lowest therapeutic dose of fungus in my experience.

I'm generally not in the mood for going slow and super cautious when it comes to counter punching the beast!