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Mrsgrneyedldy

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Hey, Im a 36yr old female,who began suffering migranes at 13,at 24 they turned to CH (episodic) I belive they've become chronic.I've tried and been on every drug Known to treat them and due to ins. reasons I can only do Imtrex 100mg tablets 9 a month, the oxygen works , atleast helps but everything else has stopped working. I'm woke twice a nite w/ the ugly beast in my head and twice a day. And when Im not suffering a CH attack I seem to have this anoying residule headache! Today was a Real bad day! I'm truly wanting to give up and end my pain forever! Thanks for Listening :'(

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Hi,

I was in your same position just 3 months ago. Last November I was in the process of putting a date in my calendar when I was going to end it all, if things didn't get any better.

I've had clusters for 5 years, and they've been badly chronic for over a year now. Like you, I've tried nearly everything, and it either didn't work, wasn't tolerated by my body, or eventually stopped working. I'd known about this board for a long time, but always considered it a last resort. And in November, I realised I was at that point.

I started by joining this forum, and reading all the files in the ClusterBuster Files section, over and over. Also, started reading the Share Your Busting Stories threads. They started to give me hope. I then ordered a bunch of RC Seeds, and someone in the forum I had made friends with, sent me a couple doses of mushrooms.

I had to come off the Topiramate I was on at the time, and that was a rough journey. But once off it in December, I started 'busting'. Since then I've taken mushrooms 2 times, and seeds 7 times. There is also a Vitamin D3 regimen that is helping A LOT of people, but I'm not on it at the moment. Long story.

So all I'm doing are seeds and shrooms, about a week apart. And the change has been dramatic!

That shadow you get sometimes, the presence of the demon floating around in your mind, just waiting to pounce, went away with the first dose I took. Gone, dead. Also, I noticed right away that when I do get attacked, I don't have that post traumatic stress attack afterwards, that would leave me curled up in a ball and crying for a half hour. I haven't done that since December.

I've also had an 11 day Cluster Free Gap last month that was amazing! I normally get hit every day to every other day, with 3 days being considered a long gap. Also now when I do get hit, the hits aren't nearly as strong as they used to be. It sometimes feels like one is starting up, then runs out of fuel before it can really get going, and just fades away.

I won't lie to you, chronic clusters are harder to bust than episodic, but not impossible. You've come to the right place.

Hang in there,

Renée

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Please let us help you, Mrsgrneyedldy. There are many here, including my son, who are suffering just like you. Please stick around. Read and ask questions. I promise that you'll find things here that will help. Just give us a few weeks. You'll be so glad you did. I promise.

Ron

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Thank you all very much,I've been thinking of way to end it for good lately myself! I saw all the busting post and figured I'd try to get in touch w/ a few people I knew here in St.louis to find some shrooms to no avail. I'm getting hit w/ the beast at 2am,when I wake at 6 and again during the day every 3 to 4 hours! I'm miserable! Thanks for the support! :-/

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You can order the RC seeds from various sources on the internet.  Someone will probably be able to tell you which source has the highest quality and for the best price.

The RC seeds are legal to own and possess, so its not a big deal to order them.  They are illegal when consumed; however, it would be very difficult to get caught, as you consume the evidence.  ;)

Read the Files, and hang in there.  We have all come to this board because we have been right where you are.  Busting has saved our lives, and I know it will save yours.

Don't give up! You can fight back now that you know the tools to use!!!!

Tuck

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You can order the RC seeds from various sources on the internet.Someone will probably be able to tell you which source has the highest quality and for the best price.
I'd say that www.iamshaman.com is the most-recommended site. www.psychoactiveherbs.com is one that I trust.  I think seeds bought from almost any site are likely to work, and the "floater" test (put them in a glass of water and discard the ones that float) probably insures sufficient quality.

Mrsg, seeds are in general just as effective as psilo.  This varies for some people, but if you were willing to try mushrooms, you ought to try seeds.  Some experts here have even said that seeds are probably overall more effective in more cases than mushrooms.  You would want to order rivea corymbosa seeds, which are referred to here as RC.   Here is a poster created by a medical school professor showing some results of busting with another kind of seed that also produces the ingredient you'd be looking for, LSA. (Those seeds are harder to work with than RC, which is why RC is recommended.)  http://www.maps.org/research/sewell_2008_aha_lsa_poster.pdf

Here is the first file you should read. It will give you some background and tell you about the very simple way that seeds are prepared.  The author recommends a smaller number of seeds for a first dose than most here would recommend -- but if you decide to proceed, the very good folks here will help you along the way. http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290128974

Since you are using imitrex, it will be strongly recommended that you should "detox" from it for five days, since it interferes with busting (and the tablets, as you say, sadly probably are not helping you much anyway).  I would urge you to seriously consider starting right away the anti-inflammatory vitamin D3 regimen that has helped lots and lots of people--even ended a lot of cycles.  If it helps you, it will make it much easier for you to detox.  You can read about it here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

I would suggest that you at least glance at/scroll through the thread at ch.com where the "D3" approach is discussed. There's a link to it in the file I just listed above.  It's way too much info for what is basically a simple plan, but you'll see a lot of encouraging successes.

As you have seen, the great people here will help you and support you.  It's what they do.  They've been where you are.  Stick with them.

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You need help NOW so lets not dance around here.

1. Oral triptans are generally useless anyway and you don't want to be on them to do any of this stuff, they are not helping you stop taking them.

2. Use the O2 to abort, open your sinuses as fast as possible; use cayenne (instructions in the licorice root protocol cuts abort time in half), use cold air, use ice. Stand outside (no coat) breathing as deeply as you can at a slow even rate until you are literally shivering severely; it forces your metabolism into a 180, you will feel better.

3. Program yourself to get up and attack the inflammation as quickly and vigorously as possible with as many tools as you have.

4. Even if you wish to eventually bust, while you wait for the mailman get yourself licorice root tincture (read the protocol, be off the triptans first!) and use it ASAP. It is the most efficient herbal anti inflammatory agent there is,  it can cut your incidence by 80% in days and the viciousness of your attacks in 20 minutes. There is virtually no downside, no side effects. The very least it will do is improve your mood. This is not second hand information. I have had clusters, episodic and chronic, for over 40 years. This is the best cluster killer I have ever found, including LSD and the psylocibes.

5. I am not at all sold on the D3 thing. As an anti inflammatory regimen, it doesn't impress me but this is not the place for this. This is better and FAR faster resultwise: Take a good B complex supplement (they might say 'stress formula') and then ADD Pantothenic acid (B5) at 20X the rate of the other "B's"; example if there is 10mg of B6, say, you want to take 200mg of pantothenic acid. Why? well, pantothenic acid is required by the body to manufacture cortisone. Chronic stress depletes pantothenic acid levels to the point where you become simply incapable of manufacturing cortisone, which is the body's first line anti inflammatory agent. You simply cannot effectively respond to cluster without it, and it is a sure bet that MOST cluster people have deficiencies here. Licorice root, by-the-by, very efficiently prolongs the action of cortisol (metabolite cortisone) in the body by preventing its uptake in the liver.

6. Many of us have felt as you do at one time or another; death seems a release and a viable option. I know I have been there, more than once. It does give you a certain perspective. No doubt it takes courage to live with the uncertainty and unspeakable pain of this syndrome, as is certainly true of many other chronic conditions as well. You are far from helpless. You are certainly not powerless. Remember this: This syndrome is not who you are. There are many options here; once you feel better and can breath, you will find something that works for you, or a variety of somethings, and trust me on this, life will get so much better.

I hope some of this is useful to you, and I truly hope you feel better soon.

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Mrsg posted this message at another thread.  In order to try to keep everything in the same place, I have copied it and my reply over to here.

[Hello, im in a horrible cycle thats been going on for a year this march,can someone tell me how many RC seeds I should use,exactlly how to use,and what to expect! Thank You! CryPAIN OH GLORIOUS PAIN!]

Mrsg, you'll be a lot better off if you stick with the thread you started at "Share your busting stories."  That thread is here: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1328846357

You have pretty-lengthy replies there from several people.  If you read the file I linked you to there, you'll have information about preparing seeds.  You'll also see information about where to get seeds.  I think most people would recommend starting with about 30 seeds.  What you can expect is probably no psychedelic effects and very possibly a good night's sleep.  You might have to expect what we call "post-dose hits," or "slapbacks," the next day or two.  These might be more severe than what you are used to, or come at different times, but they are interpreted as a way to know that the LSA is working. They rarely last more than a day or two -- and they don't always happen.

By the way, Mrsg, Les Genser is a very, very smart person with a deep commitment to understanding CH and helping people who have it.  However, I just can't agree with Les about the vitamin D3 regimen -- not because I have the scientific knowledge to take a different position, but because we have seen too many people, here and at the ch.com thread, get startling results from it.  Not everyone -- and in a very small number of cases, there are reports of CH attacks worsening for a while, until the person stopped taking the D3 protocol -- but enough people to make me believe it should be recommended as something to consider.  Also, you do not have to be off triptans to try it and possibly get results from it, which means it is something you can try right away. You do have to pay attention to when you are taking it if you are taking verapamil: that's all in the file I linked you to.

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And when Im not suffering a CH attack I seem to have this anoying residule headache!
That is called the shadow. It also appears just before the real pain.

I agree with Les. Best way to get medicine is grow it yourself...you dont get your imitrex off the street. Dont get discouraged and when those thoughts enter your head......dont be alone call someone.

all the best

the bb

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Hi Mrsgrneyedldy (how do you pronounce that??!!  :D),

Well you certainly sound like you're in the chronic high cycle from HELL right now.  :( I dunno, I tried capitalizing "hell" there, but it still isn't strong enough - how about "1 TRILLION TIMES WORSE THAN HELL" ? :'(

I hope you'll regard the links CHfather provided with holy scripture type reverence, because they are golden indeed, and I hope you can get those RC seeds ordered today and will consider trying the D3 regimen on for size starting today (if you haven't done this already).

Chronic CH is tuffer to bust than episodic, no 3 doubts about it, but as you've seen, many chronics here have been finding significant relief, e.g., Brew and Dan who have been enjoying extended remissions, and Kaboom, Tingeling, Pixie-Elf et all, who've seen dramatic improvement thanks to busting.  :)

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Thank you! I have signed the petition!So have a few of my family members for me or on my behalf! I was hit w/ the beast upon waking this morning and again a few hours later! Not to mention the middle of the nite attacks! I was taking the vitaman D3 regimine,along w/ the melatoin, I still take the melationin, not the D3 I swear it gave me more headaches! I'm going to try in get some RC seeds as soon as I can. Thanks for the support! :-/

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Mrsg,

I hope you have a high flow O2 set up. At least 25LPM. Also, the non-rebreather mask. That should get you an adequate flow for aborting.

What is your set-up? Less than 15LPM won't work!

spiny

the grump

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Im looking into busting very soon

YAY. Glad to hear it! (but not at all glad to hear how bad you're still being hit right at the moment  :'()

Fingers vigorously crossed for some very successful busting results in your near future.

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I took a dose of approx 20 RC on Wed, and felt incredible that night and into the next day.

Last night, however, was a very different experience.  To my horror, I was hit with an early evening attack (kip 4-ish), followed by 5 cluster attacks throughout the night and into early am.

Is this typical of the "slapback" headaches mentioned by CHFather?  Also, today I was completely drained with a steady shadow all day.  What's odd is that the shadow was on my left side, which is the opposite of my cluster side.

I am hoping all of this sounds right to you guys that know.  I guess I'll know one way or the other!

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Is this typical of the "slapback" headaches mentioned by CHFather?Also, today I was completely drained with a steady shadow all day.What's odd is that the shadow was on my left side, which is the opposite of my cluster side.

Hi and welcome sam.

Yes, this all sounds very typical, but I'll let more experienced players confirm. You should start a thread, sam, and tell us a bit about your CH history.

You should experience PF days soon; it might take 3 or 4 busts. Seeds worked for me, but 20 seems a low dose to me.

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20 seems a low dose to me
  Since you're getting what look like slapbacks, I'd say 20 was a fine dose.  Not long ago, 20 (or even fewer) was the recommended first dose, and some people here have busted successfully with 10.  If you had no undesirable reactions from 20, you could up the number next time if you want to, just to be on the safe side.

I can't really comment on the other effects, but others probably will.  A new thread, as Purp suggests, is a good idea.  Ginger tea helps many people with shadows, as do "energy drinks" such as RedBull and Monster.

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Hello everybody, I was finnally able to order my seeds and yesterday was day one of detox, I'm still suffering 4 to 6 in 24, I'm assuming that may increase as detox continues,I'm geared up w/ O2 and Monsters for now! My date is the 23rd to bust if all goes right! I'll keep ya posted thanks for the support! :-/

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Hello everybody, I was finnally able to order my seeds and yesterday was day one of detox, I'm still suffering 4 to 6 in 24, I'm assuming that may increase as detox continues,I'm geared up w/ O2 and Monsters for now! My date is the 23rd to bust if all goes right! I'll keep ya posted thanks for the support! :-/

Hang in there mrsgrn, and I sure hope your seeds will come in. I remember when the mailwoman rang the door bell... that was a cool bell sound.

You're not through yet, but it's not far away. Meanwhile, have you tried ice? It's always a good relief for me. Good thing you have o2

keep posting

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hello greeneyedladdy, hang in there, I was were you were a few months ago, read and listen to the good folks here, i'm a green eye lad with the same chronic ch, it's a daily fight, stay strong, it will get better. I take a regular dose of seeds now, seems to help. I changed my attitude about what your thinking, when someone here said, "are you going to tell your loved ones and friends what you are planning to do." stay here and help us to help other like us... peace

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