I am a 39 year old chronic cluster headache male. I have had cch's for 22 years. With 3-7 one hour, mind bending, soul deflating, people laughing, doctor smirking, brain busters a day. If I was lucky, they would go into remission for 3 days (ahhhhh a break). I would grit my teeth, pull my hair, pound my head, cuss under my breath to no avail! I would also drink harder, work harder, and run faster to forget about them in between......to no avail.

Please believe me when I say, "I found a place, I believe, others suffer just like me." And that truly IS comforting.

After 15 years of "fighting" my headaches and the doubts of what I thought other people were thinking of me, I finally gave up. When I gave up I mean I quit trying to force these headaches out of my life. When I start pulling my hair and cussing under my breath it added frustration to the mix. Which elevates my cluster headaches from a 7 to a 10 (kips ch scale)almost simultaneously. I really hate going there!

This may sound defeating to most, but there is a possibility you may have these headaches for the rest of your life. 

So now that I have personally accepted that I may get these until I die. And that there are people that will never understand our turmoil, have they gotten any better? YES AND NO! "Yes", I moved to step 10 much, much less. And for 2 years not one migraine. "And No" about 2 weeks ago they started coming back.

Disheartening for sure. But these days I prefer not to crumble to the frustrations, helplessness, self pity and agony, which lead me deeper into the abyss.

During my bouts I prefer to use an ice pack, occasionally some over the counter pills, some hot coffee to loosen up my sinus, extremely dim lighting, cool rooms, ask everyone to put their scents on outside. Occasionally asking my wife to lightly run her fingertips over my back, for me sometimes goose bumps work. Corny but true!

Please respond if you are on the same page as me. And I will be praying for you all. godspeed

G'day Haunted, and welcome to the nut-hut. Sorry you had to come looking for us but here we are - large as life and just as smelly.

Importantly, there's no need to explain because we know just too well what you're going through but, just as important, have been truly diagnosed as a ClusterHead? The reason I ask is that there's other, more serious, conditions that can mimic this one and may be going untreated if you're on the wrong track.

Otherwise feel free to roam the boards here as there's tons of terrific info on how best to cope with this nightmare.  There's been big improvements recently in oxygen use which is assisting many, along with Red Bull type energy drinks at the first sign of a hit.

Only better days ahead, mate, so here's cheers to ya.

B.

Hey Haunted,

Yep, sounds like you're doing it rough and we all know how that goes.  I notice that you say you are using over the counter meds - generally these will have little effect, except perhaps the side effects.  Have you seen a headache specialist??  Have you ever tried a preventative med eg. verapamil?  I swear by oxygen - high flow rate - finding I can abort a hit in under 10 mins.... melatonin for the night time hits...  Lots of different ways of attacking this beasty - suggest you read other newbies posts for lots of great advice.

I am sorry to hear how much you are hurting, but you have come to the right place!!  Stick around, ask plenty of questions, I'm confident there is some relief to be found.

Wishin you all the very best,

Kate

I love it when my bride gives me goose bumps.

Not when I'm getting hit, mind you.

I'm all for accepting the fact that CH is here to stay....and will always be a part of my life. You and I agree on that. That's where the agreement ends! ;) Lovingly.

Don't just grin and bear it. 32 years of CH and I used to just use ice packs, coffee, long runs, and enough OTC's to kill a dozen livers....to treat my CH. Then my wife got sick of seeing me suffer and lovingly suggested...(almost at gunpoint).....that I see what modern day medicine has to offer.....damn.....they may not know everything but they sure gave me my life back.

For preventative meds...those you take daily to reduce the number and intensity of your hits: Verapamil, Lithium and Topomax. I use Lithium, blocks 60-70% of my hits.

For abortives: Oxygen. Imagine feeling an attack starting...and 8  minutes later, it's gone and you are completely pain free. That's oxygens story. PLEASE.....read the oxygen info tab on the left....gave me my life back, it's that effective. Imitrex injectables are expensive but incredibly effective. Energy drinks, those containing caffeine and taurine, I like sugar free Red Bull, will abort or reduce many attacks for me.

I admire your attitude, your a fighter and a realist......but damnit there are too many effective tools to fight the beast with and it hurts me to see another hurting with these things. The memories of untreated KIP 10's are still too real for me.

Welcome home, yeah, we understand.

Joe

The shaggy concurs with Joe 'ol Haunted one :)  I too used to suffer needlessly.  I agree that we will have these for the rest of our lives (unless we grow out of them in our 80's or 90's) but many of us lead quite normal, not-that-painful lives.  Complete opposite compared to what I used to go through. 

Psilocybes and caffeine have been the wonder treatments for me.  Check out more stuff here and at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Good luck daddy-o! ;)

--Shaggy >:(

Haunted, please do pay attention to the advice you have been given. It's wise and right on. You said:


Quote:

So now that I have personally accepted that I may get these until I die. And that there are people that will never understand our turmoil, have they gotten any better? YES AND NO! "Yes", I moved to step 10 much, much less. And for 2 years not one migraine. "And No" about 2 weeks ago they started coming back.

If you mean you are finally past the denial stage then all I can say is, "good for you!" Denial can only keep you from finding a good preventative and abortive. But if you are saying zen-like acceptance will help ease the pain, I will have to disagree. Acceptance can do lots of things positive, but stopping an attack isn't one of them. For me, anyway, when it comes to ch's, I am a fierce fighter for a pain free life. God bless! lance

wimsey1 wrote on Aug 2^nd, 2010 at 7:21am:

If you mean you are finally past the denial stage then all I can say is, "good for you!" Denial can only keep you from finding a good preventative and abortive. But if you are saying zen-like acceptance will help ease the pain, I will have to disagree. Acceptance can do lots of things positive, but stopping an attack isn't one of them. For me, anyway, when it comes to ch's, I am a fierce fighter for a pain free life. God bless! lance

I'm with Lance!
:)

hey Haunted,

I am doing the same thing you are. Just gutting it out. I've been at this for 38 years and taken every freaking drug they have to dole out.
The last two cylces I refused any meds just hit the O2 and took cyclobenzaprene for my effed up neck.

This time I'm doing not much of anything. Oh ice packs and coffee, melatonin at night at only 2mgs.
The thing is, I'm handling it ok. So far anyway.

I know ya'll think I'm crazy but for me, this time its working. I'm coping well and not having to fight all the meds in my body.

Welcome 1Haunted1 !

I'm no masochist but I did enjoy reading your post, you have a way with words.  I agree getting upset during a hit only aids the beast in using you as his play thing or as I usually call it 'making me his bitch'. 

I hope you find solace in speaking with fellow beast-masters and in the added support we bring. 

Make sure to check out the O2 page if you are not already on it and bring your wife over too, she may learn ways to help you that neither of you thought of before.

Wishing you PF beast slaying days and nights!

Have you tried the clusterbuster methods?

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Quote:

Please respond if you are on the same page as me.

Ya think?  This site and all the info here has been carefully gathered over the last 12 yrs.    Most of us have had CH for decades.  A Lot chronically, so welcome to this place.

   I'm with Joe on this..You have not mentioned anything you have tried.   Please read all the links to the left of here.  Pure oxygen is one of our main abortives.  Have you tried that?????   or any of the prevents???

I'm agreeing here with the "why suffer needlessly?" type replies here.

O2 and some ClusterBuster methods have been offering impressive results.

I was diagnosed with migraines in 1988, but know one else with migraines seemed to get them like I did, I knew something was'nt right. I dont think I was diagnosed with cluster headaches(suicidal headaches seems more fitting),but the term became a part of my vocabulary about 10 years ago.

I've used imitrex, cafergot, ergotomine, blood pressure and seizure medications. Imitrex worked great in aborting a headache(occasionally not so great). Only 2 a day!? That just aint enough. So I did and still do use them sparingly, for special occasions.

I've been to the chiropractor(and still go frequently), the dentist, the eye doctor, all in the name of cluster headaches. I've used magnets, bees wax, back stretchers, shoved pencils up my nose (dont ask!). LOL im sure you can all relate.

I dont want to needlessly suffer, but I have, and possibly will.

When I began looking around this site, I noticed people desperatly slamming red bull (i think that could kill you before the headaches). Talk of psychedelics breaking  episodes. Please dont get me wrong, I understand that "anything is better than getting another headache". And I've done my fair share of desperate searches to conquer these headaches and also my fair share of drugs and alcohol, to get past these headaches.

I was disappointed to stumble across more reckless abandon than down to earth, lets get to business, type attitudes. I know there is alot more I have to read here to find the things im looking for........but thats where I entered the picture. And thats why I was hoping to talk to people on a similar journey as me.

CAKELADY I feel I've known you a hundred years already. Couldn't have said it better myself.

I am truly excited to try the oxygen (my cuppa tea).

Thank you all(and I mean EVERYONE). For your stories and trials.

p.s. brew i hope they are toe curlers and not actually monkey bumps!

Haunted1,

First, please read the imitrex tip: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

This will explain how to dramatically stretch your imitrex doses. I and many many others on here can vouch that this is very effective.

Second, I can understand how those touting Red Bull, pschedelics, etc. may come off as desperate kooks  :D but this is actually far from the case.

We've seen numerous cases where Psilocybin has been a more effective preventative than any drug, including one chronic case so severe it was beyond anything I, and I believe you, could even imagine. This is why none other than Harvard medical is launching trials, research is also underway in Europe, and we are hopeful that BOL - a non hallucinogenc form of LSD  - will be approved and prescribed at one point.

I imagine you probably missed the specific coverage (very favorable) about this in Newsweek, National Geographic, etc., as I would've, had I not heard about it here.

Here's a video talk by one of our fellow CHers on the subject to get you up to speed:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I'd also like to share with you the number of full blown, full length attacks I personally experienced during my last 2.5 month episode:

Zero.

This is in large part due to the fact that I listened to, and followed advice from the same folks who have been offering it on this thread. And I learned that Red Bull is kind of yummy  :) (OK  that part is strictly personal opinion).

Thank you bejeeber, I do not mean to sound harsh, it just comes out that way.

I have recently, for the first time in my life went more then 3 days without 1 single headache.....guess how long? 2 years!

I too am excited for the new technologies and medications. And excited to try some things mentioned to me already on here.

But I still believe state of mind is 90 percent of the cure, ok 80 percent, maybe 50.

And state of mind is what I practice in between the new drugs and new technologies. And have you ever felt like your body was just overloaded with toxins during your fight? Me to.

God didn't make us totally defensless, seems like it, but he didn't.

What if your left out in the the middle of the woods? Do you have the tools to cope without your meds? have they been honed? Can you get by with just yourself? Can you do it comfortably?

Sometimes i take an ice pack  wrapped with a thin cotten dish towel, sometimes a damp rag (clean towel, but no strong scents). then lightly touch it to my lips,cheekbone,eyebrow, forehead, temple and neck whereever it relieves the pain for a second or moment. While trying to keep any thoughts from entering or distracting me from staying calm.

1haunted1   ,-( wrote on Aug 3^rd, 2010 at 10:57am:

When I began looking around this site, I noticed people desperatly slamming red bull (i think that could kill you before the headaches). Talk of psychedelics breaking  episodes. Please dont get me wrong, I understand that "anything is better than getting another headache". And I've done my fair share of desperate searches to conquer these headaches and also my fair share of drugs and alcohol, to get past these headaches. I was disappointed to stumble across more reckless abandon than down to earth, lets get to business, type attitudes. I know there is alot more I have to read here to find the things im looking for........but thats where I entered the picture. And thats why I was hoping to talk to people on a similar journey as me.

1haunted1,
I am glad you've found a level of peace in dealing with your CH and what it does to you.  For myself, I will never stop trying, never stop fighting, never stop struggling to take my life back during episodes.

Before I came to this site, I knew quite a bit about medications for CH - what was recommended, what was not, what the studies said, what has been disproven. 

What I DIDN'T know and what I've since learned so much about is non-book treatments for CH - high flow o2, red bull, ginger, higher dose melatonin, blood pH manipulation, etc.  No, these treatments often haven't been formally studied but the effects from trying them is minimal, the monetary cost is low compared to medication, and they may just work!  Hurrah!

Also, I must say, when I came to this site a few months ago, I was on my last legs - desparate.  Two children under 4 with one one the way, trying to hold down a job where people depend on me, and support my family - hadn't slept more than 2-3 hours total a night for more than a month.  Unable to take some of the standard treatments for CH because of the pregnancy.  Scared for my baby.  Scared for myself.  Every time I closed my eyes, there the beast was.  I am suprised I was able to put 2 words together I was so brain blasted.

This site helped me - tremendously.  After my hazing initiation ( ;)), I found a group of people who were willing to keep supporting me though my fight.  There with all sorts of encouragement and advice - whether alternative medicine or otherwise.  And it has WORKED.  I get one shadow (sometimes none) per day about 10:00pm - and that is all!  I am on verapamil, folic acid, magnesium, and just a tiny dose of lamictal.  I haven't had to take any narcotics in over a month.  My baby is growing well and is fat and happy - haha and so am I... 

Please, listen to these people.  They have nothing but your best interests in mind - including myself...

:)

Now this is becoming a fun thread! :D  I agree with you Haunted about the impression you got from us and it made me smile.  As usual I will second what the Bejeeber has said and add a bit.

A couple of the natural substances that were mentioned are actual medicines used by people in certain parts of the world.  They have taken on a different conotation in our culture but are still useful:

Caffeine is a powerful stimulant and creates reactions in our bodies that definitely work on the head pain (vaso dialator?/constrictor? something, I'm not a chemist).  Works wonders for me and people use the redbull for the added taurine that they claim works better for them than straight caffeine.

Psychoactive plants and fungus have been used in healing and vision rituals throughout the world since humans first learned about them.  So it is not a stretch that they would have some healing properties that are effective on a certain amount of conditions.  In most cases you can use them with little to no halucinegenic effects and still bust your cluster cycle.  I believe these have been more powerful medicine with less side effects than any other medicine on this site.

As an aside, and not related to CH, the willow (Salix species) tree provided salicilic acid otherwise known as aspirin.  A million other examples of plants and humans mutually benefiting from each other, why not mushrooms.  Promising news coming out about other fungus medicines for people too. 

I say all this just to put more info on the table.  If people are interested there is plenty of reading and people to talk to about their experiences.  3 years ago I would have thought I was nuts.  After 2 good years of busting, a total of 2 attacks, I know this is a very effective CH treatment. ;)

Good luck everyone!! :)

--Shaggy

Haunted1, I should've added that I think you make a good point about state of mind, and it's another thing I think a lot of us  could benefit from having in our arsenal in case the beast escapes all the well laid traps we've been ensnaring him with (it's just not a first line of defense for most of us).



1haunted1   ,-( wrote on Aug 3^rd, 2010 at 1:06pm:

What if your left out in the the middle of the woods?...

Good point - we should know how to identify psilocybin mushrooms in the wild in such a case -  that's what the indigenous peoples knew to do.  8-)

Lettucehead and Shaggy.

I love you guys........uhhhh man... :)

Yeah I know, it is great! Sooooooo happy to be here. With all these new people just like me!

With even more great ideas to add to my arsenal I will never give up the fight now or ever.

But peace with my headaches (im not a "hippie") and serenity with my thoughts(especially during headaches) is what ALWAYS gets me through. And it seems to get put on the back burner round here. And I wanna make light of it.

You ever wonder why these young kids are dying of heart attacks? And these young entertainers are dying from... whatever? I do.

Maybe its all these super duper fast high energy make you into a superman drinks... maybe not.

Maybe its all the coping medications lil johnny's on because he dont like when daddy says no! ....maybe not.

Maybe we'll get some red bull marketer on this site posing as a beast fighter and that he uses TWO red bulls for his headaches and shoves TWO more up his rear as a suppository just in case he gets a headache on the way to work!

Listen... I most likely will try red bull for my HA and many more natural ways suggested here. But as a fighter, I refuse to let the pharmaceutical companies and medical red tape tell us they are our only hope. And that our methods are ridiculous.

Cant restraint be taught a little(or alot) more. To much of anything can be a bad thing.

Im desperatly searching for simpler ways. With peace of mind.

Ya know, even though you shroud your skepticism and criticism in diplomacy, I still read between the lines: "None of the drugs or treatments you people use are really responsible for killing your pain. I have found the key - mind over matter."

Stick around - I like the way you argue. While mindset is a very important tool in this struggle, some of us have added a few more tools to our toolbox.

Rest assured...I am neither a paid employee...nor even a Shill for Red Bull......but will not be caught without it while on cycle.

Joe

Think you missed a couple of lines brew, I do use imitrex(with restraint).Will try red bull(with restraint) and oxygen(freely). I dont consider anyone on this site "you people". Consider it more of an us. I get the feeling you think im arrogant. Im not, Im trying to shed some light on something I believe to be very important and cast down upon here.

1haunted1   ,-( wrote on Aug 3^rd, 2010 at 4:03pm:

Think you missed a couple of lines brew, I do use imitrex(with restraint).Will try red bull(with restraint) and oxygen(freely). I dont consider anyone on this site "you people". Consider it more of an us. I get the feeling you think im arrogant. Im not, Im trying to shed some light on something I believe to be very important and cast down upon here.

Right. Mind over matter. I acknowledged that. Very important tool.

But it's pretty obvious to me that you think contemptuously about those who use methods other than your own. I got a very definite "you people" vibe from your writing style.

And I'm getting a very strong signal that you won't even acknowledge the judicious use of hallucinogens as a real preventative. I've been dealing with this thing for almost 25 years now, and they work. Believe me, they work.

Like I said, stick around. I think we have lots to learn from each other.

Brew

Mind over matter was never a part of what I was saying. I think that implies I could control them mentally. Only wish I could.

Maybe you and some other people do get that vibe. I apologize. Your signals and vibes could be crossed. I have used many different kinds of street drugs(i've stated), so for me to treat people ANYwhere contemptuosly is absurd in my mind. So good for all those people breaking ground with hallucinogens you have my gratitude not contempt.

desperate people take desperate measures. So brew please be careful how you extend your advice. lets face it nothings been provin yet. Till then chin up I guess

I'd never had any energy type drink in my life until a couple of months ago when I read about the Red Bull "trick" here. I've found that it makes a huge difference when I do get a CH in that it drops the duration down from what was typically 45-70 minutes to 5 - 15 minutes. I've also noticed that the intensity has dropped too.

Whilst the exact mechanism is not known, it is suspected that the caffeine / taurine is acting as a vasoconstrictor.

As to all the kids using it, well they are just falling for all the marketing.

1Haunted1 you are fitting in here quite nicely and I am glad you have found some useful information here!  8-)

__________________________

On another note;
Advice here is freely given, however; it is up to the receiver whether or not to use the advice or round file it.   :P

As to how certain advice is offered, when discussing certain options caution is a rule to follow and the PM's work great!   ;)

... well if I was stuck out in the forest with no meds etc and got hit, thanks to this place I'd know exactly what to do....  run on the spot!  Vigorous exercise works   ;)

Quote:

lets face it nothings been provin yet.

Surely you jest.

Quote:

desperate people take desperate measures. So brew please be careful how you extend your advice.

Exactly. And it was out of desperation after 22 years that I looked for, and found, this site. Here I found a fellowship of sufferers who had found a way to remain on this side of desperation. And a willingness to share what works for them. That is a key ingredient in any site such as this one: we share what works (lay stress upon the next phrase) for us. Another phrase you'll hear around here is "everyone is diferent." If Brew, and others, did not share with me I would still be in desperation. So...stick around, be humble in the face of the pain others feel, and contribute meaningfully to the hope we so "desperately" need. Blessings! lance

Very eloquently put Lance! [smiley=thumb.gif]

Joe

I am a big mind over matter person myself.  I know that if I remain calm during a hit (it's really a lot harder than it sounds) the chances of it ramping up to suicidal type pain are lower than if I let my B.P. go through the roof.  It took YEARS for me to realize and try this.  But it does help.  I call it "embracing the pain" ( I stole that line from Robert Jordan).  It is a state of mind that I get into and just think "It's pain, that's all it is and it wont stop until it's done, so I might as well just wait for it to be done".  Do I still use abortives?  Yes I do, but not nearly as many as I did in my early years.  Does CH affect different people differently?  Most certainly.  But I understand where the original poster is coming from and agree with him on quite a bit.  I've been a pacer, crawler, head-banger, screamer, whiner, pounder, prayer, you name it.  But since I've learned to "calm down" and behave myself, the hits are more manageable and the cycles are shorter (I think the latter is due to using fewer triptans - just my opinion, I'm no doctor). 

So with all that stuff out of the way, welcome to the community and I hope you find relief where and when you can.

Agostino Leyre wrote on Aug 5^th, 2010 at 4:50pm:

I know that if I remain calm during a hit (it's really a lot harder than it sounds) the chances of it ramping up to suicidal type pain are lower than if I let my B.P. go through the roof.  It took YEARS for me to realize and try this.  But it does help.  I call it "embracing the pain" ....  But since I've learned to "calm down" and behave myself, the hits are more manageable and the cycles are shorter.

100% same for me.  Keeping calm during a hit makes all the difference to my pain levels and ability to manage the cycle!!!

Kate

Agostino Leyre wrote on Aug 5^th, 2010 at 4:50pm:

I am a big mind over matter person myself.  I know that if I remain calm during a hit (it's really a lot harder than it sounds) the chances of it ramping up to suicidal type pain are lower than if I let my B.P. go through the roof.  It took YEARS for me to realize and try this.  But it does help.  I call it "embracing the pain" ( I stole that line from Robert Jordan).  It is a state of mind that I get into and just think "It's pain, that's all it is and it wont stop until it's done, so I might as well just wait for it to be done".  Do I still use abortives?  Yes I do, but not nearly as many as I did in my early years.  Does CH affect different people differently?  Most certainly.  But I understand where the original poster is coming from and agree with him on quite a bit.  I've been a pacer, crawler, head-banger, screamer, whiner, pounder, prayer, you name it.  But since I've learned to "calm down" and behave myself, the hits are more manageable and the cycles are shorter (I think the latter is due to using fewer triptans - just my opinion, I'm no doctor).  So with all that stuff out of the way, welcome to the community and I hope you find relief where and when you can.

Dang near word for word agreement here. It was a near epihany when I FINALLY figured out my own reaction was only making things worse....

Oh...that and verapamil, zomig ns, and oxygen (my buddy!)

Best,

Jon

Agostino Leyre wrote on Aug 5^th, 2010 at 4:50pm:

I am a big mind over matter person myself.  I know that if I remain calm during a hit (it's really a lot harder than it sounds) the chances of it ramping up to suicidal type pain are lower than if I let my B.P. go through the roof.  It took YEARS for me to realize and try this.  But it does help.  I call it "embracing the pain" ( I stole that line from Robert Jordan).  It is a state of mind that I get into and just think "It's pain, that's all it is and it wont stop until it's done, so I might as well just wait for it to be done".  Do I still use abortives?  Yes I do, but not nearly as many as I did in my early years.  Does CH affect different people differently?  Most certainly.  But I understand where the original poster is coming from and agree with him on quite a bit.  I've been a pacer, crawler, head-banger, screamer, whiner, pounder, prayer, you name it.  But since I've learned to "calm down" and behave myself, the hits are more manageable and the cycles are shorter (I think the latter is due to using fewer triptans - just my opinion, I'm no doctor).  So with all that stuff out of the way, welcome to the community and I hope you find relief where and when you can.

I agree, I also get fewer headaches and shorter cycles, "embracing the pain"(as strange as it sounds). I believe also that its due to the triptans causing rebound headaches.

But for me I have to refer to it as state of mind, not mind over matter (personal head game) because I have tried forcing them away with absolutely no success.

Agostino have you tried oxygen, red bull,  and is it called maritol? If so how did they work for you?

I tried Red bull for headaches recently without success. I only tried a few times. Is there anything else I should be doing with it to make it more successful?

1haunted1   ,-( wrote on Aug 9^th, 2010 at 1:43am:

I tried Red bull for headaches recently without success. I only tried a few times. Is there anything else I should be doing with it to make it more successful?

What works for me is that as soon as I feel a CH about to start I drink a can as quickly as I can. I've cans around the house, car, work, etc, so it's easy to grab one.

That's all I do and it seems to work for me.

This is a great thread because it causes those of us who have been around for a while (many much longer than me) to reaffirm our personalized treatment plans and learn about more coping tools. My experience:
1. Red Bull helps with shadows and enhances my O2 when taken before O2 treatment. It has never aborted a real HA
2. High flow O2 is the only real abortive for an HA I have experienced. Don't leave home without it when in cycle.
3. Relaxation techniques, breathing, jaw, neck and head stress relieving exercises reduce my stress level.
4. Having a plan and confidence in it reduces my stress level.
5. Mind over matter (confidence/faith) is a real thing and reduces my stress, but has never been enough to abort an HA for me.
6. Reducing stress can only help and should be part of our arsenal.
7. I think most of us agree that there are very few drugs that we can count on and even fewer with no side affects.
7. Busting with your "tool" of choice is the real deal for many of us and no known side affects.
8. Red Bull has a massive market and there are not enough of us in the world to impact their sales.
9. The kids and celebs are getting screwed up on prescription meds in this country, and cocaine and additives. The busting tools reference here are not addictive and very natural.

Just my 2 cents and thanks for the great post

And danged well put Jay...interesting how many of your "commandments" refer to your attitude towards CH. :)

Joe

Haunted1, count me in as another one who has aborted shadows with Red Bull, never a real CH hit.

In fact I had a strong shadow the other day (or was it a low level hit?) that had gone on for a good while before I chugged the Red Bull, and that's the first one I remember the Red Bull not working on. I ended up going to the car and doing the deep breathing thru the nose on the blasting/freezing air conditoner vent, and that killed it outright.

Jay, I'm in  agreement with much of your ten commandments, and I'm a vocal proponent of busting, but last time I checked, there can be side effects associated with busting during the relatively short time one is under the influence.  ;)

bejeeber wrote on Aug 9^th, 2010 at 12:00pm:

...but last time I checked, there can be side effects associated with busting during the relatively short time one is under the influence.  ;)

There can also be increased headache activity for a few days following a busting session.

Which is anti- ;D, or  :'(

Hello All,

I am new here and was doing as the site asked and reading before posting. I was getting ready to post my own little personal tidbits and horror story, when I stumbled upon this post.

Just a little background I have been struggling with the Beast for 12 years now! I am just learning about a lot of this stuff now. As many of you I am sure, I went misdiagnosed for a long time. Well when I think back to those times before the verpamil, and triptans, Hoping the O2 soon (as insurance would not pay for from last visit) I am not sure what has REALLY worked? I remember the Beast coming knocking and taking Advil or Tylenol or whatever other HA medicine was lying around, sitting there with a cold rag and gently rubbing the area around my eye and to my nose (which I still do to this day)!!! Honestly I am not sure anything else has worked any better. Although I am eager to try (especially the O2)! Anyway, most of us have said the Beast is a strange animal and who really knows if the time you took a red bull if it did anything, or was it just a CH that was never gonna go above a 3 on the kip? I am in no way trying to be a naysayer (especially since I am new here) Whatever works - works, and if it be a red bull or just plain will power then nuthin for nuthin I am trying it!!!!

I have another MRI tonight (just to piss me off - lol) and a Neurology appt on friday.

Hopefully I will get my own little Bio up before the day is out - so keep an eye out.

Hope everyone can be Pain Free, and lets Kick this Beasts A$$!!!

Lets go Phillies,
E  - aka Erik

Welocme to the board Erik, sorry you're a Phillies fan ;) but much sorrier you're friends with the beast! Yeah, oxygen really can be that good. 32 years and it's still my first line abortive. Pain free in 6-10 minutes, compared to 90-120 left untreated.

Joe   (go Padres!)

Welcome to the Board Erik !

I hope your MRI/Neuro visit goes well and you get the help you need.

;)  As for my eye...well I already want to pull it out of my head on occasion so I'll keep it in for now, but I will watch for your bio/posting. 

PF Wishes to you!
Ging...

hello haunted

Energy Drinks have helped me with shadows I've been getting them several times a day every day since my last and first cycle ended back in December , when they get too annoying I drink a can and then wish I'd had it earlier cos usually within 5 minutes my head is clear and that feels grate.

That said I've not tried it on a full on attack as of yet .

as for meds I'll try just about anything if people here have had success with it although if it makes me feel crap it's off the list (verapamil) tried that one won't be going there again. next on my list is gabapentin .

I do believe that a positive mental attitude towards CH is essential but I don't think that I could gut it out when I have such a powerful abortive as imigran to hand , and I came here because I don't want to gut it out ever again if I don't have to ( I have enough other pain to deal with already ) .

Any way ch has brought me to this board where I have found all these people who want to help other people in dealing with every aspect of ch ,and I hope that a few years down the line when I have some experience with ch , I'll be able to return the favor .

I don't believe in coincidences , it wasn't by chance that I found this site , God puts people where they need to be  whether they know it or not , and I thank Him for that every day.

Hope you get your O2 soon , that's one I can't wait to try my self .

God bless

Nigel

1haunted1   ,-( wrote on Aug 5^th, 2010 at 10:54pm:

[quote author=2D3F2F39393E4A0 link=1280701821/31#31 date=1281041432] Agostino have you tried oxygen, red bull,  and is it called maritol? If so how did they work for you?

Yes I have tried O2 and red bull along with many,many other things as I approach my 20th year aniversary with these things.....

O2 works great if you use it at a very high flow rate 25 lpm and up.  Red bull or other energy drinks help some times, a little, especially if you drink it early on.  Never tried maritol, sounds like a narcotic and I refuse to go down that road.  CH has not defeated me and nor will I allow it to.  So I am not going to risk my quality of life by using potentially addictive narcotics. 

Guiseppi wrote on Aug 9^th, 2010 at 3:46pm:

Welocme to the board Erik, sorry you're a Phillies fan ;) but much sorrier you're friends with the beast! Yeah, oxygen really can be that good. 32 years and it's still my first line abortive. Pain free in 6-10 minutes, compared to 90-120 left untreated. Joe   (go Padres!)

That is ok, I will forgive you even though you are a Padres fan! lol  Thanks for the welcome! I have posted my own - Check it out if you get a chance.

E

JustNotRight wrote on Aug 9^th, 2010 at 6:58pm:

Welcome to the Board Erik ! I hope your MRI/Neuro visit goes well and you get the help you need. ;)  As for my eye...well I already want to pull it out of my head on occasion so I'll keep it in for now, but I will watch for your bio/posting.  PF Wishes to you! Ging...

Thanks so much for the reply! I love the eye line!!!

Same wishes to you,
E

Hey man welcome. Sorry you had to find such a good group of people in such a crappy way. I long ago accepted the fact that I will probably suffer from CH for a good while longer if not the rest of my life. That realization still does not make it any easier when Tony Iommi and company crank up the amplifiers and start playing war pigs behind my right eyeball [smiley=headbanger.gif].Have you looked into getting oxygen prescribed by your doctor?? it is highly recommended by alot of senior posters here. Here's wishing you pain free days and nights. :)

Joe

Agostino Leyre wrote on Aug 10^th, 2010 at 11:16am:

1haunted1   ,-( wrote on Aug 5th, 2010 at 10:54pm: [quote author=2D3F2F39393E4A0 link=1280701821/31#31 date=1281041432] Agostino have you tried oxygen, red bull,  and is it called maritol? If so how did they work for you? Never tried maritol, sounds like a narcotic and I refuse to go down that road.  CH has not defeated me and nor will I allow it to.  So I am not going to risk my quality of life by using potentially addictive narcotics.

Yes, Marinol (if that's the med you're referring to) can produce dependency - but it's not a narcotic.  It is a derivative of the active ingredient in marijuana and is considered a cannabinoid.  I don't know of any studies showing effectiveness for CH

Agostino Leyre wrote on Aug 10^th, 2010 at 11:16am:

1haunted1   ,-( wrote on Aug 5th, 2010 at 10:54pm: [quote author=2D3F2F39393E4A0 link=1280701821/31#31 date=1281041432] Agostino have you tried oxygen, red bull,  and is it called maritol? If so how did they work for you? Yes I have tried O2 and red bull along with many,many other things as I approach my 20th year aniversary with these things..... O2 works great if you use it at a very high flow rate 25 lpm and up.  Red bull or other energy drinks help some times, a little, especially if you drink it early on.  Never tried maritol, sounds like a narcotic and I refuse to go down that road.  CH has not defeated me and nor will I allow it to.  So I am not going to risk my quality of life by using potentially addictive narcotics.

My bad Agostino, I meant melatonin (DOH !!). I agree with your "narcotics risking the quality of your life" philosophy 100%. As painful as life can be, I dont want to stray down them dark paths again.

I did stumble across a post by Mrs.Deej that said(qualification - it takes 3 pounds of pressure to get a key to work on a keyboard.  6 pounds pressure is what I use in the accupressure.) I can not believe something so simple has escaped me all these years. When I was young I aggressivly tried accupressure with no success. But finding this lil nugget has helped me tremendously over the past month and a half or so. So THANK YOU Mrs.Deej for your helpful tidbits.

I have used melatonin over the last 6 or 8 years, (can't remember exactly when I first started using it).  And I will say it is the best preventive I have used.  It doesn't work all the time, and I have to change brands and dosages to keep ahead of the nightmare, but it has worked much better than any other preventive that I have tried.

Lettucehead wrote on Aug 10^th, 2010 at 8:14pm:

Yes, Marinol (if that's the med you're referring to) can produce dependency - but it's not a narcotic.  It is a derivative of the active ingredient in marijuana and is considered a cannabinoid.  I don't know of any studies showing effectiveness for CH

Well, I tried to use regular ol' MJ as an abortive once.  I will never use it again.  It brings a new element to the beast.  Not a scene I care to view again, as long as I live.

Well for any one interested I have been "gutting them out". In the past I have used hundreds of imitrex shots and thousands of pills to help my headaches, only to get another headache an hour later, just to take another shot, to get another bad one later, that I had to "gut out" anyway. I get rebound headaches and they would usually end up being a 9 to 10 on kip scale.

Now I just grab my ice pack, a cup of coffee, tune out the world and my thoughts and just fight my way to peace of mind. In my mind, these things have to run their course. So my body and mind learn to fight them off, with no rebound headaches, or late night trips to the emergency room, or frustrations towards the people around me, no costly medications. Just me against my headaches. And Im content here. And the fight has helped. I get less headaches. I get less 9 and 10s on the kip scale. I believe my headaches have even dulled.

I am not looking to argue, or am I bashing anybody else for the way they handle their headache. Whatever helps, do it.

I am offering up ideas to people who are tired of fighting a fight they have to fight anyway. That cannot afford to dish out money for prescriptions, doctors and especially doctors who think they are on to your drug addiction.

Is there anybody here who has all the medications they need, and NOT have to fight this fight?

Anybody here tired of fighting that fight?

My fight with the beast is less, because for me, less is more.

1haunted1   ,-( wrote on Aug 31^st, 2010 at 4:19pm:

Is there anybody here who has all the medications they need, and NOT have to fight this fight?

Yes. I didn't have to fight through a single full length, full blown attack during my last episode, thanks in large part to approaches, strategies, tactics and backup plans I found out about here.

I much preferred that over fighting through a hundred unabated attacks. I guess I'll just have to leave that to the warriors turned gurus (?).

Quote:

Is there anybody here who has all the medications they need, and NOT have to fight this fight?

Yessir. And the last time I had to take it was May 28, 2010. Nothing but the occasional shadow since (easily dispatched with an energy drink).

Keep in mind, I was chronic.

Amazing what the right treatment plan can do, right bro?   ;)

Yup!
I agree with Bejeeber and Brew.

On Verapamil and Magnesium currently - have even been able to stop the Lamictal. 
Shadow in the eve perhaps once a week now, if that.  Easily tx'ed with Red Bull or a few minutes on O2.

I don't have to keep fighting a fight that I will have to fight anyway because right now there is no fight...

Hello everyone,
My cluster headaches have seemed to disappear. (around the beginning of september) This is only the 2nd time in 23 years of hell that I have went a month without a soul deflator.(actually its been a month and a half !)
And I would like to thank everyone here for "holding my hand" through my time of darkness(literally, I stayed in the dark).
I understand that my hopes are up,and they will stay up. Because I BELIEVE!

I hope everyone is also feeling better today. Best wishes.

Aaaaaaaany way, Im certainly not saying any goodbyes, only thank you'.s for being here.

talk at yall later

sincerely, craig   ^^^

Don't be a total stranger, we like hearing from people in and out of cycle. Glad you found some pain freee time, it's  a beautiful thing isn't it? Hoping he loses your address for a while! ;)

Joe

Great to hear that you're getting some serious relief!!  Hope it lasts a good long while  :)

Take care,

Kate