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b.g.

new here, and have a few questions

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first of all, thanks for having this site, and 2 thanks goes out to anyone who takes the time to read this :)

let me "dump" on you all for a second here:

had my first cluster back in jan. this year.  to make a long and often told story short, i went through 59 days of hell on earth and 5 doctors (and numerous bullshyt meds) before finally being diagnosed and prescribed verapamil, depakote, imitrex shots, and o2.  the clusters also kicked a horners in me so i have a severe sensitivity to light..... and my marriage has gotten about as dark as my surroundings.  not to mention losing my job over this disease too.

my first attack came just a few months after i got married, and this is taking a HUGE effect on not only myself, but my new marriage as well.

it is pretty safe to say i am "chronic".  i had 1-6 clusters a day in the beginning, but since being diagnosed/treated i have managed to go a day or 2 here and there cluster free but thats about it.  99% of the time i can abort with o2, sans the occasional one that grabs me in my sleep, i wake up too late, and take the shot.

after being diagnosed i felt scared, relieved, hurt, lost, and just about every other emotion know to humans combined.  this is a pretty crappy hand to be dealt in life.

anyways, i have a GREAT doctor, best in the world IMO. he is at the cleveland clinic and i cant say enough about him.  he has worked with me numerous times on tweeking meds to try and bust the cycle, but it just isnt happening. 

i have accustomed to life dragging o2 with me everywhere, but all the pills are really starting to affect me and my marriage.  zero sex drive, tired all the time, real short fuse .... ect.  i KNOW i am hard to live with and i love my wife to death, but the docs only option is to keep raising pill levels and at this point i dont think i can take it anymore.

i am currently on 1500mg depakote and 600mg verapamil daily.  i know this is probably lower than some of you, but i dont think i can go much higher and maintain a healthy marriage (not to mention kidneys and liver). 

ok, time to cut to the chase :)

i have decided to grow mushrooms, and i need advice on dosing.  i know we are all different, as well as our necessary dosages, but i guess im just looking for a little support/info from a few of you that may be "in my shoes" as far as length of times ect.

i have heard anything from a couple .5g doses to a whopper dose to knock it out for the first time around, and then maintenance dosages after.

9 months straight, maybe a total of 15-20 cluster free days in that time, no more than 2 in a row.

im scared stupid to be posting about this, but i really am pretty "iffy" about it and need some help.

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b.g., so sorry for what you are going through, and so glad you've come here.

if you decide to treat your headaches with psychedelics, you can do that faster (faster than waiting for your mushrooms to grow) by using seeds, most typically rivea corymbosa (RC) seeds.  you can buy the seeds (legally) today, and have them (legally) in your home, and take them (unlawfully) whenever you are ready, after (the hard part) having stopped taking the meds you're now taking for five days.  they work just as well as mushrooms.  you can order them from many places on the internet, including www.iamshaman.com and www.psychoactiveherbs.com

you'd probably want to get 150 or 200 seeds (they're pretty inexpensive).  for more information about how they are used, see this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

of course, if you decide to do this, let us know if you want additional advice.  and if you're readier than i think to try psilocybin, others will answer your questions about that.

if i were you, i'd start on the vitamin D3 regimen, too -- right away.  it's helped a lot of people, and "detoxing" from your current meds is not required.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

good news for you is that a very effective treatment for CH, called BOL-148, is on the horizon, and could be available as a pharmaceutical medicine within a year or two.  you might want to sign up on the patient registry here: http://www.entheogencorp.com/community/

would you mind (if you do mind, it's okay) mentioning the name of your doctor at cleveland clinic?  there's a "sister organization" of clusterbusters that publishes a list of knowledgeable CH doctors, and i'd like to add that to the list.

things will be a lot better for you soon.

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b.g., so sorry for what you are going through, and so glad you've come here.

if you decide to treat your headaches with psychedelics, you can do that faster (faster than waiting for your mushrooms to grow) by using seeds, most typically rivea corymbosa (RC) seeds.  you can buy the seeds (legally) today, and have them (legally) in your home, and take them (unlawfully) whenever you are ready, after (the hard part) having stopped taking the meds you're now taking for five days.  they work just as well as mushrooms.  you can order them from many places on the internet, including www.iamshaman.com and www.psychoactiveherbs.com

you'd probably want to get 150 or 200 seeds (they're pretty inexpensive).  for more information about how they are used, see this file: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

of course, if you decide to do this, let us know if you want additional advice.  and if you're readier than i think to try psilocybin, others will answer your questions about that.

if i were you, i'd start on the vitamin D3 regimen, too -- right away.  it's helped a lot of people, and "detoxing" from your current meds is not required.  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

good news for you is that a very effective treatment for CH, called BOL-148, is on the horizon, and could be available as a pharmaceutical medicine within a year or two.  you might want to sign up on the patient registry here: http://www.entheogencorp.com/community/

would you mind (if you do mind, it's okay) mentioning the name of your doctor at cleveland clinic?  there's a "sister organization" of clusterbusters that publishes a list of knowledgeable CH doctors, and i'd like to add that to the list.

things will be a lot better for you soon.

wow, thanks, thanks, THANKS, and double thanks  :)

funny, i was just reading another thread about seeds.... probably as you were typing your response to me.

that may be the way to go.  and i have heard/read a bit about the BOL-148 but didnt know about the list.  i do now  ;)

i think im going to order some seeds right this second.... i will have more questions about all that though so stick around :)

Dr. Stewart Tepper in the headache and facial pain offices at the Cleveland Clinic. 

i wasnt sure if i was supposed to post info like that on here, but since you asked :)

i went through a family doctor, a chiropractor, 2 neurologists, and a neurosurgeon during the 59 days of hell that i will never ever forget. 

i finally decided to go "play with the big boys" and made the 4.5 hour drive to cleveland clinic.  mind you, at this time i had no idea what was happening to me...... beyond the fact that i was dying slowly and painfully each and every day.

made it to cleveland, and within 5 minutes Dr. Tepper was hot on the diagnosis trail.  he knew all the right questions, and really seriously has some education on this crazy thing we have.

after HIM asking ME (rather than me telling the other 5 doctors) about symptoms, he started asking me questions like:

--does your nose run?

--is it only one side of your head/face?

--do you pace or feel agitated?

i sincerely thought i was speaking with god.  who was this man and how did he know everything thats been going on in my life for the past couple months?

he smiled, told me i have cluster headaches, gave me some friendly crap about him being an indians fan (i wore a tigers shirt to the visit) and then drug an o2 tank and a imitrex shot kit into the room and starting showing me my new life.  well, after ordering the necessary xrays and mri's to be 100% positive.

anyways, yes, Dr. Tepper.  Cleveland Clinic. 

216- six three six-5549

he IS a cluster Dr.

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sorry, add on, because if you have the need to do so, you NEED TO go see this guy.

i think i have seen him 4-5 times now and its really the cats meow.  the office/waiting room is dark.  they already know :)

i have never waited more than 10 minutes after arriving to see him.  the visits are about as long as you need them to be.  there is no "wham bam thank you maam" crap.  he is genuine and will sit with you for 60-90 minutes if needed.  i honestly think he only schedules 4-5 appts per day.

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don't neglect the D3, either, b.g. (as you saw from that other thread you were reading, it can sometimes be (or at least seem to be) pretty miraculous).

i see tepper's already on the list of recommended CH docs--glad you found him!  it does feel like meeting god, to find a doctor who understands after all the rest.  (i hope at some point you might get back to those other ones and let them know what you have, so they might understand CH better and perhaps save some others from needless torment.)

did tepper recommend a 15 lpm regulator and a standard non-rebreather mask?  is your setup working well for you?  many people here get even better results with the O2ptimask and a higher-flow regulator.  the O2ptimask in particular is very highly regarded.  you can find info about ordering those things in section 11 here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1299901790

looking forward to hearing more from you.

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yup, you got it...... well my o2 script  from dr. tepper actually says 7-17lpm on the oxygen, but i use apria and they only have regs up to 15lpm.  yes, more o2 would be nice and i have been eyeing those optimasks for awhile :)

ill have to read up on the D3.......

and yes, it has been a month long project, but i have already began construction on a letter to those "past" dr.'s.  i need to carefully word that and finally mail it out.

thanks again..... really.  thank you.

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Welcome b.g.

A familiar story, you are lucky to have found a doc educated on CH... as you have found it isn't easy... glad you persisted till you found him. Also glad you found us. Read, read, read... lots of good info and people here. Stay in touch.

P.S. I know what you mean about the drugs, Depakote made me an irritable slug, and verapamil never worked for me... but I am so glad to have O2! Makes detox possible so you can get to what really works.

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im still reading as fast as i can :)

but am i to understand that i must start the detox process now?  i didnt know a detox was necessary.

gald im here.

i should stop taking all meds today for 3-4 days? before trying an alternative method?

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Hey b.g.,

That's one FECKED up case of CH you've been hit with!  :( >:( :'( (the *fecked* thing is some popular lingo amongst your new family here  :D).

As I think you've already surmised, CH father is a tremendous resource for anyone landing here, with all his condensed advice tailored to get you from point A misery to point B relief as quickly and efficiently as possible.

I salute your decision to order the seeds today, and yep the hard part can be the detox (5 days). It could be really helpful during detox to have that optimask or a demand valve system!

Definitely keep growing those mushrooms for a back up. It's always good to have that back up because sometimes one busting agent won't quite work but another one will.

A good thing to keep in mind about the D3 regimen is that it appears to be just plain good for you regardless, so if I were you I think I'd be starting in full on with it yesterday.  8-)

PS - the jury may still be out a bit on just how much verapamil interferes with busting. I believe our formerly chronic forum member Brew related that he busted with some success (mushrooms) while still on the verap, then complete success when off the verap.

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haha, thanks for the reply.

yeah, the more i read, the more i know how much this is different for all of us.

i have TOTALLY gotten used to having oxygen within a 5min walk from me at most.  im lucky enough to 99% abort after just a few shadows..... but for those first couple months i had to bear the brunt and ill never forget that.

so im lucky, but not so lucky in the fact that they just havent gone away.  period. 

so just the oxygen for 5 days and no meds before the seeds?  i think i can handle that!!

i havent actually started the mushroom grow.... im geared up for it, but if the seeds work, ill hold off for obvious reasons.

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Hi

Welcome here to your family :)

Your life will take a positive turn now. Very happy youf ound this place. I`m a CCH, where nothing helped. Nothing. Before i found seeds, shrooms and energy drinks. Now i am in control and have rarely attacks and most shadows. But mostly nothing really, that also depends on how i eat and sleep, better i do that better i do in between a bust.

Good luck and ask when you have a question :)

My best wishes

Tingeling

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thanks!!

yeah im drinking more than  $200/mo. in rockstar..... somethings gotta change.

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so just the oxygen for 5 days and no meds before the seeds?i think i can handle that!! 

full disclosure, though: your headaches might become a little worse before they become better.  the phenomenon is known here as "post-dose hits."  not everyone experiences them, and they generally occur for only a day or two after a dose.  considered a good sign that the dose has shaken things up, it can still be unsettling to get higher-kip headaches, or headaches at different times, after a dose.  if you're like most people, you'll feel good results shortly after that, though you'll probably need to dose again a couple of times after additional five-day waits.

also: there are quite a few meds (beyond just CH meds) that are believed to interfere with busting.  if you're taking anything else -- an antidepressant, for example -- you should look over this list: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731

finally, to be sure you're maximizing your current oxygen system -- did doc tepper, or someone, show you to block up any holes in your mask that do not have valves in them? if there's just an open hole in one side, you should block it off by holding a thumb over it when you breathe in (so you're getting pure O2 and no room air). or, you can just tape up the hole.

the D3 is also likely to make detoxing easier.

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I have actually taken the mask off my set up and am sucking straight from the hose...... still not quite quick enough.

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Hi b.g.,

Just one suggestion: If you are, as you say, 'geared up' for starting your mushroom grow, don't wait to see if the seeds work before starting. It'll be a couple of months - at least - till you see enough shrooms for a dose. Psilocybin is a far better busting agent than seeds and once your little farm starts producing, you'll soon have enough to share with others. Welcome aboard.

Ron

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well . . . 

if you're around here long enough, b.g., you will recognize ron as one of the handful or two of the wisest, kindest, and most knowledgeable folks here.  he and his son michael are in the daily prayers and counted blessings of many, many people here.  there's even an award here named for him.  and you will also see that, since we're all figuring out a lot of it as we go along, not everything is nailed-down certain.  one example is how much some compounds, like verapamil, actually interfere with busting.  another is the relative effectiveness of the various busting agents.  so my two cents, in contrast to ron's three or four, is that i don't think there's much evidence, or much reason, to think that "psilocybin is a far better busting agent than seeds." i have heard from two sources that know more than most of the rest of us that seeds are actually preferable to psilo, aside from the fact that the LSA content of seeds is a lot more variable (admittedly, that's a potentially big aside).  and i feel very, very confident that seeds will work fine for you.  no major reason for you not to follow ron's growing advice, and people do find that switching up (or combining) their busting agents over time seems to have a positive effect. but seeds are plenty good for dealing right now with what you're dealing with.

here's a poster from a medical conference, created by another CH hero, dr. richard sewell, showing the effectiveness of a different kind of seed with the same active ingredient (lsa) (pay no attention to the preparation method--a lot has been learned about that since then). what you notice is that it worked for almost everyone (with the added benefit of no psychoactive effects except for those who took very large doses), except for those whose seeds were, basically, "duds."  you are not likely to get duds, and even if you do, you can take enough of them to counteract that possibility (still without likely psychoactive effects).  http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf

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Welcome, b.g.!

I know your head has you down in the dumps right now, but things really can get better.  It's those same feelings of  desperation that brought many of us here.  HOPE, friendship and true pain relief are part of what keeps us here. 

I have to agree with the opinion of others - go for the seeds while waiting on your farm.  The thought of detox can be frightening, but if the meds you're on aren't working anyway, what have you got to lose?

The fact that you decided to go this alternative route after having CH a relatively short period of time is a great thing.  Many of us Stubborn Heads who need to dose heavy are long time chronics who feel as though years of taking multiple medications contributed to our difficult cases.  I sooooo regret not trying psychedelics sooner. 

Sometimes an energy drink will help me with a low level CH.  Unfortunately, the opposite will prove true if I drink too many - they will aggravate my head. 

Glad you're here!

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Hi b.g.  :)

I don't really have anything to add to the info that you've already been given.

I'm a supporter to my hubby and as a supporter make sure you get your wife involved.  Encourage her to sign up here or on ch.com and talk with myself and other supporters.  We can help her work through all the frustrations and helplessness.  I remember (as I'm sure some others do as well) how much of a mess I was when I found ch.com.  It really does help to talk with others that understand.

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I spent from about 1:00A-3:00A this morning composing a reply to Jerry's (CHfather's) post. It was humbly apologetic and mostly in full agreement with Jerry's statement. And then my puter crashed and I lost what I'd written. Too late to rewrite it, I went to bed. I'm kinda glad that happened because I feel differently today than I did last night.

In case any of you haven't noticed, Jerry's a really, really smart guy. And he's probably right. I'm just not as sure about his rightness today as I was last night. RC seeds are often written off as poor substitutes for the stronger psychedelics like LSD and Psilocybin. It seems that people want LSD but can't find it so they start a mushroom garden or hit the streets looking for shrooms. They try the seeds while waiting to find the "good" stuff. Often they're pleasantly surprised and the seeds are all they need. More often, I think, they're not. Maybe it's poor preparation. Maybe a bad batch. Maybe they didn't give the seeds enough of a shot before finding their shrooms. Whatever.

Our experience - and that of many others (maybe mostly chronics) - is that the seeds are tried in good faith with the expectation that they have a good chance of working. The number of seeds builds up to nauseating levels and the perceived successes of the lower levels comes to be seen as wishful thinking - imaginary. Finally, a source is found for shrooms or the garden comes in or perhaps even a couple of tabs of LSD. Complete busting success!

Expectation plays a big part in that success. If seeds aren't considered serious busting agents, they probably won't work. The opposite is also true. What's becoming increasingly clear is that the combination of RC seeds and the D3 regimen, along with a proper oxygen set-up and detox flat-out works. I just don't think it works as well, for the most people, as the "far better busting agents" LSD and Psilocybin. What's you guys' experience?

Ron

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I can't speak to LSD or Psilocybin, but I can speak for RC seeds.  They worked wonders for me, possibly because I am episodic and not a chronic sufferer.  But they WORKED!

I busted one cycle with two doses spread 5 days apart, using O2 to abort hits.  Gone until the next cycle began.  One dose and O2 - the cycle was gone again.

I've been totally pain free going on five years.

I keep my seeds handy, having some of the old ones, but fresh ones too, plus I still have my dusty O2 tank filled and ready to go, just in case.  I'll NEVER say "never".

Sandy

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im scared stupid to be posting about this, but i really am pretty "iffy" about it and need some help.

Welcome to the board, glad you did post here.  ;)

As you can see you are not alone here. Busting does get the greatest results for the most of us.

My last cycle I bust with 6 times shrooms and still PF till now.

Wish you good luck and PF time.

Greets Oscar

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wow, thanks all so much for the input, stories, encouragement, and just plain love  :)

for the cost and legality of the seeds it seems like a no-brainer to me.  I have to at least give it a shot!!  but yes, im still going to be on the ball about getting a small garden going.  the sooner the better.... no matter what my particular busting method may end up being.

I dropped my verapamil by 100mg and depakote by 250mg and really don't feel any different either way.  at this rate I should be completely off the meds in 5-6 days.  as long as everything seems well, ill drop another 100 and 250 tomorrow and so on....

I will be sure to keep everyone posted!!  thanks again!!

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Don't want to hijack this thread.  So I'm going to delete the very long response that I just wrote to Ron's post and simply quote Bob Wold from a May 11 post at this board: >>Some people will have better luck with the seeds. They are a little closer to LSD than psilocybin.  The big thing is that its often a more reliable dose strength with mushrooms if you know what you have or can adjust a little. The strength of seeds is what has always been in question from batch to batch. I think that is the only reason that mushrooms may appear to be more effective. If we had pure LSA vs pure psilocybin, I doubt there would be much difference and maybe even a slight edge to the LSA.<<

Since I think that the variabilities in dosing can be addressed 98% of the time by just making sure one takes enough seeds, I'm sticking with my position about LSA.

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Don't want to hijack this thread.  So I'm going to delete the very long response that I just wrote to Ron's post and simply quote Bob Wold from a May 11 post at this board: >>Some people will have better luck with the seeds. They are a little closer to LSD than psilocybin.  The big thing is that its often a more reliable dose strength with mushrooms if you know what you have or can adjust a little. The strength of seeds is what has always been in question from batch to batch. I think that is the only reason that mushrooms may appear to be more effective. If we had pure LSA vs pure psilocybin, I doubt there would be much difference and maybe even a slight edge to the LSA.<<

Since I think that the variabilities in dosing can be addressed 98% of the time by just making sure one takes enough seeds, I'm sticking with my position about LSA.

once again, thanks for the input!!  and feel free to hijack away  :)  im open to any and all suggestions/info from everyone so feel free to keep throwing it out there!!   :)

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i did notice in sewell's poster that the effectiveness threshold of LSA for people who are chronic seems to be higher than for people who are episodic.  (that is, you gotta get more of it to avoid it being ineffective if you're chronic than if you're episodic: .5 mg. of alkaloid was the dividing line for people who are episodic; 1 mg. for people who are chronic).    however, (1) this is based on a small, erratic sample, and could be just a statistical blip; (2) it doesn't mean a lot is better, just that the amount that's too little seems to be different; and (3) i have no idea (this was bob wold's point, of course) how to assure yourself that you get above the threshold, but i think the numbers we usually throw around as a recommended dose (50/60 seeds) are more than sufficient with decent seeds, still without creating any significant psychoactive effects.  (one person here busted successfully with two doses, one of 10 RC seeds and one of 12, and my daughter definitely shook things up with an initial dose of 20.)

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