what i mean is attempt to fight off the pain without any abortive to see how long you can last? sure,i have an e-tank right next to me and 2 weeks into my cycle i am probably not gonna go past a 7 and as my head is killing me I hold out to see when I give in.

ps dogs barking make me surrender sooner than i want :(

I've managed without medications for more than 10 years now. I simply found them to cause more trouble than CH did but to each their own.

I can also tell you I've drunk the bastage into submission on more than one occasion but, again, I make no reccommendation to others.

yeah,even tho beer triggers a h/a i couldnt resist tonight,which brings up this topic. so far Im getting my ass kicked tho! lol

note: when i am in a 10 mode I'd never play with the beast,but,tonight he's all mine! lol :D

Patrick S. wrote on Sep 11^th, 2009 at 7:36pm:

what i mean is attempt to fight off the pain without any abortive to see how long you can last?

Before High flow O2 - Yes, out of necessity - I had no choice.

Now, no.

Marc

I endured a KIP 8 on the way home tonight driving in bumper to bumper commuter traffic. Not by choice though.

I used up all my mobile abortives at work.

 
Quote:

attempt to fight off the pain without any abortive to see how long you can last?

When you have 02 right at your side?  To me this just begs the question.  Why?

Linda_Howell wrote on Sep 11^th, 2009 at 9:02pm:

Quote: attempt to fight off the pain without any abortive to see how long you can last? When you have 02 right at your side?  To me this just begs the question.  Why?

well,why not? hmmmmmmm?

i do suffer at times,not all the time,but when i get a chance to fight back,why not?

evr watch the youtubes of CH? its me :(

its gone! hahahahaaha

I WIN!!!!!!!!! hahhaahaa ;D

Patrick S. wrote on Sep 11^th, 2009 at 9:09pm:

[quote author=1530373D380611362E3C3535590 link=1252712164/5#5 date=1252717361] evr watch the youtubes of CH? its me :(

Link?

its not me,ME! but the headache is me! the carrying on and clenched muscles in the legs and arms,rockin and rollin!
its me! :'(
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[quote author=0130222024303D34510 link=1252712164/9#9 date=1252719194]its not me,ME! but the headache is me! the carrying on and clenched muscles in the legs and arms,rockin and rollin!
its me! :'(
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We know it's not you, because Tony is a well known/loved/respected member here.

And yes, it's a pretty good representation of MY hits too.

That's why I don't "play" with them.

Marc

Marc wrote on Sep 11^th, 2009 at 8:42pm:

Before High flow O2 - Yes, out of necessity - I had no choice. Now, no. Marc

same here 8-)

I've had to.

You choose to?

WTF?

After so many years of having to be beaten by the beast without meds I relish the opportunity to kill it early.

If I could physically extract the beast from my head I would choke it to death with my bare hands, take it out into the yard, put it on the burn pile and set it on fire. After it was rendered to ashes, I'd then piss on it

Steve G

Quote:

what i mean is attempt to fight off the pain without any abortive to see how long you can last?

Why don't ya stick on a gimp suit and go the whole hog.. :P
No Thanks...! I did it for 20 years and I have no intention of going back to those dark old days.. ;)


Lefty..!

Well sure we can endure pain somehow, but it makes us feel miserable, it is almost as if lets see if we can endure heart attack and not use defibrilator.

i know how you guys feel here about what i posted but i get controlled a few months out of the year by CH and while in cycle life sucks,as you know. once in a while during a cycle i will drink alcohol which is a guaranteed headache but not gonna let CH rule my life,it feels so good to know i beat it sometimes without O2,i feel like im still in control.

Quote:

once in a while during a cycle i will drink alcohol which is a guaranteed headache but not gonna let CH rule my life,it feels so good to know i beat it sometimes without O2,i feel like im still in control.

Intentionally triggering a CH and then unneccesarily enduring the pain isn't what I would call being in control.

Pain Management i.e avoiding triggers and treating properly is what I would call being in control.

yeah,ummmmm,im feeling some heads nodding at me,guess Im not choice CH member guy.You guys take care and be PF,Im gonna move on.

Thas messed up.

Patrick S. wrote on Sep 12^th, 2009 at 4:01pm:

yeah,ummmmm,im feeling some heads nodding at me,guess Im not choice CH member guy.You guys take care and be PF,Im gonna move on.

we're all different Patrick.....
I once had to see how strong I was against the beast years ago before I got medical help with preventatives and abortives.....now that I have these i wont play with the beast because i dont have to feel the pain....

don't do it to yourself man. don't go thru the pain if you dont have to......

i can understand u wanting to see how much you can take so when u DO get in a situation you'll be able to handle it from experiencing it.....
but for the most part, don't do that to yourself, its not worth it.

Never played with the beast by choice, have been FORCED to do so MANY times.  Don't want to go there ever again.  If I can kick his A$$ with an abortive he's mine!

Which reminds me...we need a picture of the beast with his tail tucked between his legs and on the run!   :D

just not feeling the love here,im a silly pain ridden man,i dont have migraines or tension headaches,i have nthe classic cluster syndrome.I dont know what to say here cuz everybody seems so negative,and i do understand to a point.
just im not 12 nor a troll,get used to me :)

I don't think that anyone was trying to drive you away.

Keep in mind that soooo many of us have spent sooo many years trying to find effective ways to stop getting hit, we tend to have a really hard time understanding why anyone would invite it.

Anyone with CH's quickly learns that this place has more combined knowledge and support than a whole team of doctors.

Marc

i understand marc,thanks :)

maybe id be better in offtopic area,altho im a CH guy too i gotta try to make light of it even to its hard as hell,but need my sanity

Patrick S. wrote on Sep 12^th, 2009 at 6:50pm:

...................... its hard as hell,but need my sanity

THAT is something most of us battle for ALL the time  ;)

Patrick:

We are not trying to chase you away or anything like it.

As Marc Said earlier
Quote:

Keep in mind that soooo many of us have spent sooo many years trying to find effective ways to stop getting hit

There are also many here who are chronic sufferers and don't get any time off with an end of a cycle and a few days, weeks, months or years with out hits.
Marc's statement couldn't be more true whether we are chronic or not many of us myself included have suffered for years and if we can avoid a hit, we will do it.  A few of us I'm sure can't understand why anyone would want to suffer through a CH hit.

Each person has their own way of dealing with things and yours seems to be a pretty good sense of humor and testing the beast a bit, More power to you and I applaud it.

My sense of humor is also what helps me get through especially with some of the other symptoms CH gives me, like loss of speaking ability, or even coherent thought before during and after a hit.  I use my sense of humor a lot at work to deal with these two side affects quite often.  Such as this little speech I have memorized and sometimes do have trouble spitting out  :-X  "pardon me but I've recently fired my mouth do to lack of cooperation, can we go over this a little later, maybe then my mouth will have learned who's really the boss around here."   :-X   

I've also gone through a few nasty hits at work that the abortive didn't do the full trick on and walked around in a daze for over 5 hours  :o  that is one time when my sense of humor goes right out the window, until I'm feeling more alert that is, then I usually have something Smart A$$ to say.  Luckily most of the people who know me well understand this and try to leave me alone until my fog clears. 

Ok, so I rambled a bit.   :-X  I just wanted to give you a little more of an idea what some of us, think, feel and go through.  But most of all to let you know we are not all grumpy curmudgeons, well at least not all the time  ;D ;D ;D ;D

Patrick S. wrote on Sep 12^th, 2009 at 6:38pm:

just not feeling the love here,im a silly pain ridden man,i dont have migraines or tension headaches,i have nthe classic cluster syndrome.I dont know what to say here cuz everybody seems so negative,and i do understand to a point. just im not 12 nor a troll,get used to me :)

  If you're looking for butt kissin you came to the wrong place son.  What we will give you is lots of support and great advice.  Get over yourself and get on with life.

        Potter

[smiley=bow.gif] [smiley=thumb.gif] vietvet2tours

Patrick S. wrote on Sep 12^th, 2009 at 6:50pm:

i understand marc,thanks :) maybe id be better in offtopic area,altho im a CH guy too i gotta try to make light of it even to its hard as hell,but need my sanity

If you feel you are being handcuffed by the headaches and feeling freedom of it not controlling your life, then your choice I guess, we are all different.

I would say, then that cluster busting which is hallucinogen therapy could be for you, if you dislike meds. And do stay here, you know, sharing views is always good on boards.

no buttkissing on my thread potter! lol

i never really took into consideration those who are chronic,i apologise for that.

as I stated in OP I dont mess around when I'm in a 9 or 10,that would be impossible.I guess im fortunate for being episodic and have only a dozen or so 10's a year.Doesnt mean i dont feel for those that get whacked very often,tonys youtube brought me near tears watching it,its what my boys have seen many times,very ugly site!

Ill keep my non-helpful posts in appropriate forums from now on.

im new here,got a lot of learning to do
:-[

As you have probably guessed by now many of us are quite blunt when it comes to saying what's on our mind.  Don't take it personally and don't take it the wrong way.

You, speak your mind as well "GOOD" glad to see it.

You made an interesting comment in your initial posts and got a lot of interesting replies.  Nothing like starting with a Bang hu?  :D

Fresh opinions and eyes are always good to have.

Again Welcome to the board Patrick and don't sweat the small stuff.

thanks ginger,only took me 2 days to figure out i posted in wrong area,lol,i know life can be trying in time of CH's and I did make it sound like i was downplaying the intesity of all levels of pain.Obviously was not feeling anything more than a 6 or 7 when i posted that because anything above i dont come on the pc,im huffing O2,icing my head or scalding my cranium in the shower with 120F degree water!

btw,i have always been the person who frequents here during cycles and overlooks the site in PF times,Im gonna try to be more supportive even during PF days/weeks/months.

;)

this site introduced me to O2 several years ago and helped me accept the fact Im a clusterhead.
and Im thankful for that,very thankful.

Posting in the wrong area can be fixed even if it's a bit of a pain in the arse for mods and admins ;D

It took me awhile to come to grips with CH.  I initially came here a little over 9 years ago after being diagnosed and doing some research online, found this place.  I am guilty of leaving shortly after because to be honest I didn't know how to deal with this and didn't want to deal with it at all, so I just shut down for a few years on the topic of CH.   

After a few years I finally accepted that this seems to be my lot in life to deal with the beast and remembered the initial support and understanding I'd found here and had turned away from, so here I am to stay CH and all.

It takes me a week or three to come to grips each time I enter a new cycle, like right now. Lots of denial, a pinch or two of anger, some bargaining sessions, and finally acceptance. It's during this "grieving" process that I can be the most difficult to be around as I tend to be a bit of an asshat.

Once I'm into the cycle and over the grieving, dealing with each hit as it comes and trying to live my life in between, I tend to be able to see the light at the end of the tunnel a little more clearly. By then I like to think that I have become more of the human being I pride myself on being - more caring and compassionate, instead of self-centered.

i have no choice but to fight them...im usaf and would be disqualified from my job (which i love) if i go to the doctor.  all i have been doing each time my cycle starts is pounding red bulls and water.  and also hoping that they only come at night (which of course they NEVER do)!

no O2, no abortives...just pain  >:(

Damn Buck I'm sorry to hear that.

To bad you can't make of with some oxygen tanks and accessories from the pilots area... or at least a smaller O2 tank and you could pick up your own accessories.

Hmm do those ever break?  Chalk one up to breakage?

Welcome to the board btw and I have a few other ideas for you.

Have you tried the Kudzu herb it may help you.  Here is the link to a reliable site that I order mine from: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  This is an aid that several of us use to help diminish the attacks we get, it also seems to lower the intensity of the CH hit sometimes (for me at least).

Here are two other aids to help get you through the night with out a hit use Melatonin or if that doesn't work I use Zyrtec or the generic for it is cetirizine an allergy pill, it gets me a good nights sleep with no side affects and no hits.  All of the above are over the counter herbs, supplements and allergy medication.

Hope this helps some.
Pain free days and nights to you!!

(Edit) P.S. Buck DJ is a member here and also USAF I've asked someone to put him in contact with you.

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seaworthy wrote on Sep 12^th, 2009 at 2:41pm:

Quote: once in a while during a cycle i will drink alcohol which is a guaranteed headache but not gonna let CH rule my life,it feels so good to know i beat it sometimes without O2,i feel like im still in control. Intentionally triggering a CH and then unneccesarily enduring the pain isn't what I would call being in control. Pain Management i.e avoiding triggers and treating properly is what I would call being in control.

I agree wholeheartedly on that - whenever in cycle I will not come close to beer within a hundred mile range. It is just not worth the punishment the Beast will give you. I stopped defying it a long time ago, which doesn't mean I appeased the Beast. I'm just saying my wellbeing is more important than his satanic escapades on me.

As far as enduring it: I sometimes have to. When my cycles climax, I will get really painful really long hits, untouched by even the injectable. Two and a half hours to three hours are no exception anymore whenever I climax. Only thing that keeps me both sane and alive, is knowing after 17 years to end is near.

Quote:

whenever in cycle I will not come close to beer within a hundred mile range.

Can one go anywhere in the Netherlands and not be within a hundred mile range of a beer? ;D

1.  It takes all kinds.  You are welcome here but do realize that people here will tell you like it is.

2.  I do avoid abortives at times because I want to stare down the beast. I am stubborn and stupid but sometimes I do it.

3.  I don't see any reason to partake of a trigger when in cycle.  Getting hit don't get you anything and going through it because you asked for it, aint bright.

4.  You wanna take control.... learn your triggers and avoid them and anything that doesn't make it worse that you enjoy, don't let the beast take that away.

Just my opinion.

Marc wrote on Sep 12^th, 2009 at 6:45pm:

Keep in mind that soooo many of us have spent sooo many years trying to find effective ways to stop getting hit, we tend to have a really hard time understanding why anyone would invite it.

I think this sums up most of our thoughts on this Marc.  Good post!

Brew wrote on Sep 28^th, 2009 at 4:50pm:

Can one go anywhere in the Netherlands and not be within a hundred mile range of a beer? ;D

Brew I was going to ask the same thing, LOL!!!

I often play with him aswell. I often wonder if I am injecting prematurely so I may sit there for a bit to see if it will be a short or mild one.  I have been using 2 to 3 vials a day of imitrex for almost 4 months now so I am getting a little nervous. I have found that if I can fight through one for 45 min  or so with no meds, I get a longer period of PF time although i have mild shadows throughout the PF time. If I take the trex right away I know I have 4 hours of total PF time to get my shit done. I prefer the toal PF time.

I just started Verap today because I am getting pretty desperate (Hate Pills).  So hopefully I can break this damn cycle.

Chris

I also find that if I am going to drink, it has to be all or nothing.  If I have one or two beers I need to get ready for a good hit. If I have 10 or 12 I am usually pretty good. :D

Nope. It was hard enough during those early days when I had no idea what was wrong and during a period between meds in 2004 when one doc didn't want to give me anything because she wasn't a neurologist.

My current med of choice is energy drink, so I go get some as soon as I feel something coming. My pain tolerance is high, but I don't see any point in suffering if I can do something to stop it or prevent it. I've already lost enough of days, weeks, hours and months during those times when I was looking for that one thing which would make a real difference.

Sanna

ClusterChris wrote on Sep 29^th, 2009 at 9:03am:

................... I have been using 2 to 3 vials a day of imitrex for almost 4 months now so I am getting a little nervous. ..........

Chris,

Some of us have discovered that while Imitrex works great at killing an attack, it actually brings on more attacks than without using it. A self feeding cycle.

For some, this is still considered a "maybe", but for others including me - it's a very real problem. A few years ago, there was no way anyone could convince me to try and do without Imitrex. Now, I won't use it again.

Since I stopped using Imitrex at all, I have far fewer hits. I've repeated this test several times over the years and always get the same results.

Just a thought.

Marc

Marc,

I agree with you on the possibility of imitrex causing more headaches.  Call me crazy but the thing I like about it is that I get hit every 4 hours on the dot(give or take 10 minutes) this way I can actually plan my day. Once I get a hit and chase it away with the trex, I know I have 4 solid hours to do what I need to do and then have the trex ready. Thus having no fear of going out. It is basically my security blanket.  Yes I may get a few more hits a day but I think its worth it.

Call me crazy but it allows me to live a somewhat normal life.

Chris

Marc wrote on Sep 30^th, 2009 at 8:11am:

[quote author=67485157504156674C564D57240 link=1252712164/43#43 date=1254229397]................... I have been using 2 to 3 vials a day of imitrex for almost 4 months now so I am getting a little nervous. ..........

I dont know much about imitrex but I thought 2 to 3 vials a day was dangerous for your health.

Again, trex rarely worked for me so I rarely use it.

FramCire wrote on Sep 30^th, 2009 at 4:58pm:

Marc wrote on Sep 30th, 2009 at 8:11am: [quote author=67485157504156674C564D57240 link=1252712164/43#43 date=1254229397]................... I have been using 2 to 3 vials a day of imitrex for almost 4 months now so I am getting a little nervous. .......... I dont know much about imitrex but I thought 2 to 3 vials a day was dangerous for your health. Again, trex rarely worked for me so I rarely use it.

There is a safety limit of 2 within a 24 hour period on Imitrex.  I'm sure the Dr. advised you not to use more than that Marc.  Please be cautious with your medications.  If they are not working you need to discuss it with your Dr.

JustNotRight wrote on Sep 30^th, 2009 at 5:01pm:

FramCire wrote on Sep 30th, 2009 at 4:58pm: Marc wrote on Sep 30th, 2009 at 8:11am: [quote author=67485157504156674C564D57240 link=1252712164/43#43 date=1254229397]................... I have been using 2 to 3 vials a day of imitrex for almost 4 months now so I am getting a little nervous. .......... I dont know much about imitrex but I thought 2 to 3 vials a day was dangerous for your health. Again, trex rarely worked for me so I rarely use it. There is a safety limit of 2 within a 24 hour period on Imitrex.  I'm sure the Dr. advised you not to use more than that Marc.  Please be cautious with your medications.  If they are not working you need to discuss it with your Dr.

I misquoted, it wasnt Marc but the point is still the same!

Please read the trex tip on the left side of the screen if you use a lot of trex.

Thanks for the  concern, It has been this way for the last 5 years or so.  Hopefully I don't develop any long term side effects but I have been fine thus far.

Chris

ClusterChris wrote on Sep 30^th, 2009 at 8:04pm:

Thanks for the  concern, It has been this way for the last 5 years or so.  Hopefully I don't develop any long term side effects but I have been fine thus far. Chris

Do you use the trex tip?

I get my trex in the vials, so ya i kinda use the trex tip. I try to get by with using a third of a shot but find i get shadows that lingre for too long after the hit, half takes it right away and I am good for 4 solid hours.

Chris

Patrick S. wrote on Sep 12^th, 2009 at 12:25pm:

i know how you guys feel here about what i posted but i get controlled a few months out of the year by CH and while in cycle life sucks,as you know. once in a while during a cycle i will drink alcohol which is a guaranteed headache but not gonna let CH rule my life,it feels so good to know i beat it sometimes without O2,i feel like im still in control.

I know exactly what you mean...Don't let anyone tell you what's right or wrong...Sometimes you just need to see you are tough enough to take it and not just that headache but tough enough to take the condition. As far as drinking, its hard not to live a normal life and have this pain. I didn't drink for the longest and I still got it at the same time. That could also be cause I'm chronic. Everyday, no matter what. Sometimes I think chronic is easier. I know what I'm in for...I think you get a little more used to the pain and I am lesss worried about triggers

I will play with the beast everytime.. sometimes, although the level of pain is high I will win the fight, and I do this so that I am not draggin tired which happens if I use the Imitrex injection.  Also, induring the sever pain, I believe builds up a tollerence to pain itself and although hard to do, for me there is someting that feels damn good when I beat the mf and dontl let it get a hold of me..  But, there are days of this and sometimes its just easier to take the damn needle and q tip a small amount of juice into the arm.. For me, about a third or half dose of an injection vile is all that is required..  The juice is expensive and I hold off as long as I can, using the juice as the last resort. But yeah, putting up a good fight helps me with my conditioning for the real nasty attacks later in the cycle.. thats when I will need all the juice, o2, the works...

I guess "play" is what I did when CH started for me in the mid 80's until I found Imitrex in 96. In that interim 10+ years I tried enderal, lithium, amytriptaline, noritriptaline, depakote, cafergot, and whatever the anti seizure med is that they prescribe for tic de la ru (tri geminal neuralgia), all to no avail.  The only thing that I had that worked in that time period was extremely hot, constant comment, orange spice tea which I would hold to my lips and blow on which sent steam into my eyesocket area.  This would usually knock out a hit that didn't get above a K6 in 10-15 minutes, anything over that and I was relegated to dancing with the beast for 30 - 45 minutes.

In 1999 I got my first O2 script but it was only for 7 lpm so naturally that didn't work.  Then I found this place in 2005 I think and got a new script for 15lpm with non rebreather which works well for me.

I'm now in week 10 of a cycle after almost 4 years in remission and up to 4 - 6 hits a nite and 1 - 3  during the day. Thus far I have aborted all but 4 with O2 and knocked out those 4 with Trex injections that expired in 2006 but still work fine.

My wife is a nurse so we experimented with the "Making the most of  Imitrex Tip by emptying a stat dose syringe into a sterile container and then drawing it up into Diabetic syringes in 2, 3 ,and 4 ml doses but the reduced amount didn't seem to work as well for me.

I am now waiting on RC seeds so I can try that therapy which so many on here seem to have great success with and come spring time, you'll find me trekking the cow pastures of East Texas and S E Oklahoma in search of "Teonacatl", to pick, dry and store for next time.

I guess my biggest fear today is that after having CH for so many years that they will become chronic but I try not to dwell on that thought.

OK, I've rambled enough.  Wishing PFDAN's to all

Dallas Denny