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Donnie S

How Many Ya'll Are Chronic

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At first onset, you think the worst.  Major cranial trauma and certain death come to mind.  You feel pain like never experienced and wonder how that can be survived.  Then frightened confusion, search for medical answers and visits to your doctor.  You are fortunate to have discovered the problem rather soon.  I sincerely hope your doctor is understanding and will provide you with Oxygen.  This is paramount!

Every single person in this group has been in your place.  We know what you are going through and are willing to help.

If you are lucky, after a correct diagnosis, you get connections to neurologists and the learning process begins.  You are now here, with ClusterBusters .... the Gold Mine of information, support and knowledge about treatments.  Believe me, this group has tried everything known to mankind to eliminate/minimize Cluster Headaches.  What is recommended works for many people, including myself.

I've been Chronic for 4 years and only since last Fall have I gotten regular relief from the "Busting" methods promoted in this forum.  I just works.  These people have saved my life, my sanity, my marriage and my job. 

How do we do it?  Survival and just plain toughness.  This crappy affliction will not beat us and as a group we are stronger.

I'm sure many of the "Big Guns" of this group will be answering you shortly.  They are wise, courteous and very helpful.  Listen to them and you will be better off.

Hang in there Donnie S, help is on the way.................

weatherman

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i need to learn about busting.waiting to see neuro. longest break ive had in 14 months is less then 2 weeks. the meds given to me not workin and expensive too. thanks for your help

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Welcome to the site Donnie!!

Well, I guess I will start by echoing everything the weatherman said.

2 years and 2 months of high chronic here.  I was lucky /persistent enough that I got diagnosed after just 2 months.  I haven't gone more than a 7-9 days pain free since day one..... no matter what busting methods I have used.

CHFather will be along shortly with his patented post that will have a ton of great links for you to read (if you haven't already)  on seeds, D3, and some other goodies.

It's been said before, and I will say it now.  We are some tough mother f*ckers.  Believe it or not .... over time your threshold for pain will become superhuman.  You will find great information and great people on this message board.  We are literally the only people in the world who know what this thing is and what it can do.

Get the oxygen.  Get the o2ptimask. Get a demand valve or at least a 25lpm regulator.  Get the Imitrex for a "last ditch" effort. 

Stay in close contact with your doctor.  There is a list around here of "clusterbusters.com certified doctors" and if your doctor isn't on that list, there's a good chance you will be able to either teach your doctor a few things ..... or add him to the list.

We are a goofy bunch.  I think that's an inherent characteristic of a clusterhead. 

Welcome aboard!

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Busting general (also read the other numbered files at the top of the "ClusterBuster Files" section, including "Warnings,"  Playing Well Together," and "LSA"; then ask questions): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865

Oxygen (which should be your #1 priority): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1356823258

D3: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

Energy drinks such as Red Bull or Monster (there are dozens of brands) seem effective for many. Down them quickly at the first sign of attack. These drinks typically contain caffeine and taurine, with a number of other additives, including B vitamins and ginseng and other fashionable herbs.

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Busting general (also read the other numbered files at the top of the "ClusterBuster Files" section, including "Warnings,"  Playing Well Together," and "LSA"; then ask questions): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290127865

Oxygen (which should be your #1 priority): http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1356823258

D3: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804

Energy drinks such as Red Bull or Monster (there are dozens of brands) seem effective for many. Down them quickly at the first sign of attack. These drinks typically contain caffeine and taurine, with a number of other additives, including B vitamins and ginseng and other fashionable herbs.

right on cue  [smiley=vrolijk_26.gif]

[smiley=tekst-toppie.gif]

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will be 8 years chronic July 25.

I dont bust. Had 4 brain surgeries.

I have a strong faith in God, loving wife and amazing son

That keeps my 2 feet on the ground.

What works for some might not for others.

I dont comdemn nor condone use of drugs.

Personal choice. Your body, your journey

Many are educated here for excellent knowledge if intrested in the path of busting. To each their own.

Best wishes

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TEN YEARS SUPER EXTREME CHRONIC HERE  >:(

You just have to learn to roll with the punches. It ain't easy buddy, I'm not saying it is.

Get a prescription for oxygen and an optimask FIRST. Oxygen will help abort your attacks. It works for 95% of us I would bet.

You can grow mushrooms inside. There is a YouTube called "let's grow mushrooms" . It is a three part video and is very helpful.

My heart goes out to you man. You have found the site that saved my life and my sanity. You are on the road to figuring out how to live a decent life....a good life.

Have faith that you will find what works for you. We are all different.

Imitrex injections will take a bad hit away. The problem is: a lot of us get rebound attacks from imitrex, so use it only when you absolutely can't stand the pain. We call that a 10 :o

Hallucinogens are illegal, but I / we don't give a shit. The people that make and enforce the stupid drug laws don't have head attacks.

We are all here for ya!

Dan

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Hi Donnie,

My clusters started just over 6 years ago, and I've been chronic ever since.

My first year was the worst. I had a 7 month long headache (no joke and no exaggeration), frequent BAD migraines, and at least 1 cluster a week, sometimes as many as 4-5 a week. I call 2007 my 'year of hell'.

After that, things started to settle into a pattern, I'd have 2-3, occasionally 4 weeks cluster free. Then I'd get a small one, and they would build to a crescendo over about 2 weeks. Then another 2-3 week chance to breathe.

The year before I started busting, it had gotten much worse again. 1-5 clusters every 2-3 days for an entire year. And I had exceeded the recommended dosage on the strongest stuff my neuro could give me. Everything had simply stopped working and I was putting a date in my calendar to exit planet Earth if I didn't find a solution before said date.

And that's when I turned to busting. I've busted with seeds and mushrooms, and they have very simply saved my life (along with the amazing people on this board).

I'm still technically chronic, but I can achieve cluster free gaps of up to 23 days and the clusters are much more mild. But the biggest, and most immediate, effect I discovered was the post traumatic stress attacks I used to get stopped. They just completely went away, along with about 80% of the anxiety I got about having an attack.

Most of the time, about 90% of my attacks, just hit then go away. I may pause what I'm doing, I may go into my room and curl up on the bed for a really bad one. But then it stops, and I just get up and return to what I was doing. They aren't the devastating event they used to be that ruined my whole day and messed up my head for hours.

Granted, the other day I did have 4 attacks, and the last one was the worst I've had in a very long time. I ended up with my head in the lap of my best friend crying in pain, and had a headache for a few hours after. The next morning, my eyeball still felt like someone had beat it up.

But I have hope. This site and the methods explained here have given me hope.

Sorry, have prattled on a bit. I've come to believe life is what we do between attacks. This demon in my head is part of me. Yes, I hope to one day put it to sleep and never have it wake up again, but I don't worry about that. I focus on today. Right now, this moment, I am pain free. And I am going to make the absolute most out of this moment that I can. When I get an attack, I do my best to brush it off and go back to living.

Also, I'm a VERY busy person. I own my own business as an IT consultant, which keeps me quite busy. On top of that I have an active social life and lots of friends. My best friend and I are also in training to be massage therapists, and I'm elbow deep in studying the human body. Also, I'm a writer, and on the verge of publishing my first novel. If that wasn't enough, my 9 year old daughter has recently come back into my life after a 5 year gap of no visitation.

I don't stop. People around me often comment on how I never stop. I'm always doing something. That's because I found doing something is also a preventative. Relaxing, chilling, doing nothing, is a trigger for me.

My advice, find your triggers and avoid them.

Hang in there

MG

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Donnie, it's generally better to keep your questions in one thread, or start a new one.  That's why I'm copying this post of yours from today at another thread to here: >>i  think i can buy the seeds in canada. any info on how many seeds per dosage and stuff like that. also looks like this company will ship to the u.s<<

yes. in addition to www.urbanshaman.net in vancouver (where i don't think you can order online(??), many people here buy from www.tranceplants.net, which is also in canada and probably closer to you.  if, after reading the warnings and other information, you decide to bust, you should have enough seeds for at least four doses.  as i remember it, tranceplants sells a pack of 100 and a pack of 250, and they're not very expensive, so if you buy from there, i'd recommend getting the 250.  in the past, they have offered a 20% discount to members of ClusterBusters, but i never was sure how to ask for that when ordering,  you could give it a try.

MoxieGirl created a file about how to extract LSA, and you night want to follow that if you decide to bust:  http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1357378289

how many?  i'm pretty sure most people here would say you could start with 30 or so, without having any psychedelic effects but still getting benefit.  for most people, they increase the number as they become more comfortable taking the seeds.

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just looked at one site for rc seeds that suggested 6to 8 seeds for 4 to 5 hour trip. DAMN
Pulling this one in here from another thread, also.

Maybe that was HBWR seeds, donnie?

Most people here don't "trip" at all from 50 or more RC seeds.  Maybe a "two-beer buzz" for some people.  You can start with a relatively small number (let's say 20) and see what happens -- but the problem is that if you take too small of a dose, you're not sure whether you got enough LSA to start fighting your CH, but you still have to wait 4 or 5 days before your next dose.

Donnie -- Do you have oxygen????  Have you tried injectable imitrex????  Energy drinks????

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Sorry to hear you've been getting slammed so bad Donnie, but glad to see you're getting good advice here.

Busting is not even remotely in the "grasping for straws" category IMO, it's more like hitting the motherlode of preventatives, as it is more effective than any prescription out there.

30 seeds as CHf mentioned is something I also would consider very reasonable. I know a lot of us are in no mood for pussy footing around though - I went for 40 something seeds first dose (right before bed) and felt no side effects except for 1 minute of nausea and a better than usual night's sleep.

Since then it's been 65 or more seeds before bed, no tripping, just sleeping.

What if the seeds don't work?!  :o

Perish that thought, but you'd still have other very powerful busting preventatives to hit it with, like psilocybin, and it could be a good idea to start growing some mushrooms right now so you'll have them for your back up plan.

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Havent tried oxygen yet but workin on gettin set up.zolmitriptan,gabapentin,indomethacin,and ya energy drinks.Plus sleeping pills and lorazepam to keep me sane. NOTHING is workin.Rough night last night.Wow this shit cant continue.

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You can get seeds quicker and easier. They are legal to order online. Also order spores from sporeworks or ralphsters for the long term.

Watch " let's grow mushrooms" on YouTube. It is a three part video and is very useful for a first time mushroom grower.

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What Dan (Hipshot) said.  Read back over the posts in this thread.  You can get seeds from tranceplants in a couple of days, and you can prepare them and take them right away (if you're detoxed).  But oxygen should be priority #1.  Up above you say "waiting to see a neuro."  That might or might not be good enough to get you oxygen.  It should be -- all doctors should know about and prescribe O2 to people with CH, but often they don't.  Go back to whatever doc is prescribing all these meds with the article about O2 for cluster headaches that's in the oxygen file for which there's a link in a previous post.  Educate him/her.  Demand. 

A whole lot of hearts and minds have been opened to you here Donnie.  The "big shining star" you asked about has been provided: oxygen, and, if you choose it, busting.  Time for you to act.

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i understand the oxygen is more of an abortive and busting more of a preventitive. Is that right? i have to see my family doc tues im gonna work him for the o2 and order seeds this week. Then i gotta get off the pills for 5 days before trying to bust ? you guys are a great help my head just not clicking right these days.

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i understand the oxygen is more of an abortive and busting more of a preventitive. Is that right? i have to see my family doc tues im gonna work him for the o2 and order seeds this week. Then i gotta get off the pills for 5 days before trying to bust ? you guys are a great help my head just not clicking right these days.

Yes, I do not know the exact percentage ... but I would say that high flow oxygen works for 85-95% of us.  It will become your best friend.  If you read the link I posted for you below about o2 you will learn how to use it properly and it will kill an attack within minutes.  The ONLY time oxygen doesn't work for me is if I get woke up out of a deep sleep.  Sometimes by then I am already into the attack too deep and o2 doesn't do anything for me.  In those episodes I have to resort to an Imitrex shot ..... but that is pretty rare.  For the most part, I rely solely on oxygen.  As most of us do. 

MAKE SURE you read the info posted below in the links ... and if you need to, print it off and take it to your Dr. with you.  You need pure medical oxygen.  Not a "condenser".  You need a HIGH FLOW regulator.  At least 15 liters per minute.  Most of us use a regulator that goes up to 25lpm, but you might have to purchase that on your own ($30 on ebay) as some medical supply facilities only carry the ones that go up to 15lpm.

To answer your second question, YES, you will need to be 100% free of anything except oxygen for 5 days before the seeds will work.  The 5 day waiting period allows your body to completely clean out and it will allow the seeds to work without being affected by anything else you might have in your system.

oxygen link:http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1319283840

5 day waiting period link: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1290130731

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