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        New Message Board Archives >> 2006 General Board Posts >> Meet the new boss, same as the old boss.
        
(Message started by: Neekwa on Mar 31st, 2006, 2:33pm)
Title: Meet the new boss, same as the old boss.
Post by Neekwa on Mar 31st, 2006, 2:33pm
Early this morning as I sat here in my familiar easy chair the inevitable started to occur. A slight tingling sensation in my lower right jawline. Before too long the sign of unmistakable confirmation, a simple sneeze.

Knowing what may in fact lie before me in the next ten minutes or so, I clung on to the wishful thinking that maybe this is as bad as it's going to get. Turns out I'm as keen at picking up on wishful thinking as I am of detecting it's presence.

Within the span of under ten minutes it began to take hold. Spreading out like dozens of little rivers of pain across my jawline up to and over my right eye socket. Time to take action, without hesitation I left the comfort of my chair for the mattress and the trusty old pillow to position myself for the building climax of it.

I assume my own defensive position on instinct. On the bed (with my shoes on) down on all fours with the area over my right eye strategically placed into a balled up portion of the pillow itself. Before too long it has arrived, a seemingly dull yet slicing pain that consumes the entire right hemisphere of my head. I continue to force my head into the pillow with as much pressure as I can sustain which turns out to never be enough to cope with the onslaught.

So I reposition slightly, placing the edge of my right hand to the mastoid bone behind my right ear attempting to apply pressure directly to the bunching of nerves themselves. The pain however is overwhelming at this point so I reconfigure myself to yet another tried and true method. Lying on my right side while I hold the pillow in between the right side of my head and arm.

With my left hand I proceed to apply pressure to my head while at the same time offer fixed resistance while flexing my right bicep. It's at this point that my breathing becomes shallow due to holding my breath to cope with the tremendous strain, making myself feel nauseous in the process.

Subconsciously I'm estimating how much time has passed thus far. Twelve minutes, fifteen maybe? Regardless the pain persists, my right eye starts to pool up and my right sinus seems as if it has bogged down entirely. The zenith of the attack is upon me now, I frantically shake one of my legs to counter the pain with some type of movement. But before too long my defenses totally break down, and in an instant I'm of the bed in a blind dash for the comfort of the bathroom faucet.

Once there I hurriedly spin the cold water knob on, and position the right side of my face beneath the flowing pressure of the tap. For a brief instant it seems my body is dumfounded as to what sensation to promote. The stinging chill of ice cold water or the persistent gripping pain within my own head.

No doubt the latter always wins out, and before too long after a haphazard attempt at drying the right side of my face with a quick dab of tissue. Im retreating back to the mattress and pillow to once again take up a defensive stance that will sustain me long enough for the downward spiral which seems to be beginning.

At this point I'm hoping I'm as keen at picking up on it's retreat as I am of it's arrival. I don't have to be reminded that I have fooled myself before. Slowly however, seeming painfully more slow than its inception. I can begin to feel it slowly subsiding away, and let me tell you only a few things come anywhere near to feeling as wonderful as those few minutes when relief finally engulfs you.

And then mercifully its gone, replaced by a slight pang that remains as testimony to its commanding power. All in all a brief visit this time, maybe just to remind me yet again who indeed is in fact boss here. This thought seems entirely logical to me as I trace the familiar pillow indentations embedded across my forehead in the mirror. Back to the easy chair, followed by a strong drag of tobacco to unwind from it all.
Title: Re: Meet the new boss, same as the old boss.
Post by jon019 on Mar 31st, 2006, 3:31pm
Hi Neekwa,

You write well my friend! And the insights to your actions during a hit are spot on. Been there, but nowhere near able to describe as you have. Brought tears to my eyes.

Thanks for the message.

Regards and PF wishes,

Jon
Title: Re: Meet the new boss, same as the old boss.
Post by Melissa on Mar 31st, 2006, 3:49pm
mmmmmmm, tobacco...I miss that.  Sorta. :-/

Anyway, you ever try putting an ice pack between you and the pillow?  I always keep 3 to 4 in the freezer, so one is ice cold at all times.

Oh, and are you a writer? :)

Sorry bout the hits. :(
Title: Re: Meet the new boss, same as the old boss.
Post by echo on Mar 31st, 2006, 4:10pm

on 03/31/06 at 15:49:46, Melissa wrote:
 I always keep 3 to 4 in the freezer, so one is ice cold at all times.


. :(


That's good Mel.  It's very helpful for ice to be cold - otherwise it's just WATER!!
Title: Re: Meet the new boss, same as the old boss.
Post by vietvet2tours on Mar 31st, 2006, 4:15pm
Ya didn't mention O2.
Title: Re: Meet the new boss, same as the old boss.
Post by Melissa on Mar 31st, 2006, 4:21pm

on 03/31/06 at 16:10:46, echo wrote:
That's good Mel.  It's very helpful for ice to be cold - otherwise it's just WATER!!

Oh shaddup echo! :P
Title: Re: Meet the new boss, same as the old boss.
Post by Jonny on Mar 31st, 2006, 4:42pm

on 03/31/06 at 16:10:46, echo wrote:
That's good Mel.  It's very helpful for ice to be cold - otherwise it's just WATER!


ZING!!!!

He got you, Mel ;;D
Title: Re: Meet the new boss, same as the old boss.
Post by thebbz on Mar 31st, 2006, 5:25pm
Nefarious individuals do not write with such prolific verbage. Man I wish I had talent like that.
Profound and familiar.
all the best ....where's your abort man? Your going to need one sooner or later. If your my friend I dont want you going through that with nothing.http://bestsmileys.com/exploding/1.gif
jb
Title: Re: Meet the new boss, same as the old boss.
Post by Opus on Mar 31st, 2006, 6:53pm
You have to stop laying down. Trigger for most.

Opus/Paul
Title: Re: Meet the new boss, same as the old boss.
Post by BlueMeanie on Mar 31st, 2006, 7:41pm
LMAO, not at you, with you. Very well written, couldn't have said it better. Yep, that cig afterward helps to unwind after that battle.  :o

PF VIBES....
Title: Re: Meet the new boss, same as the old boss.
Post by Charlie on Mar 31st, 2006, 7:42pm
Good bad and ugly.

Nice job writing. Made me tear up reading of your pain.

Never used cold ice though unless it was attached to a cold one.

Charlie
Title: Re: Meet the new boss, same as the old boss.
Post by medic1852 on Mar 31st, 2006, 7:50pm

on 03/31/06 at 19:41:38, BlueMeanie wrote:
LMAO, not at you, with you. Very well written, couldn't have said it better. Yep, that cig afterward helps to unwind after that battle.  :o

PF VIBES....

Gotta agree with meanie on this one....love that smoke afterwards [smiley=smokin.gif]...But how can you sit still...Man I am up pacing and rocking and pacing...It was well written though...Sorry you have to experience it though.
Rodger
Title: Re: Meet the new boss, same as the old boss.
Post by BMoneeTheMoneeMan on Mar 31st, 2006, 11:17pm
Man, that was well written.  Its amazing how many of us do the same things.
Like Paul said, I dont know about trigger, but certainly not comfy for me to be lying down.
A great woman named Cat advised me once to put crushed ice in your eye in the same way you do with your pillow.  It is very intense, just like you describe with your head under the cold faucet, but it helps at least take the mind off it.

And get an abortive!!!  Oxygen works for a lot.  Imitrex injections is also popular.  Talk to your doc and get something!!!!
There is nothing better than the feeling of being proactive in the elimination of the pain from the beast.
PF wishes
BMonee
Title: Re: Meet the new boss, same as the old boss.
Post by thebbz on Apr 1st, 2006, 12:29am
Rereading that ....How long are your hits, seems you described a short one..if there is such a thing. May try some Indomethacin.... [smiley=twocents.gif]
Still good reading the second time.
jb
Get to a neuro if you haven't already. A plan and abortive would make life easier. I like the 02 flamethrower thing.
all the best
Title: Re: Meet the new boss, same as the old boss.
Post by Carl_D on Apr 1st, 2006, 1:34am
Dude, first off, are you on any preventive/ abortive meds?

Do you have any o2 to suck on to abort an attack? Imitrex? Zomig? Frova? Anything?

I spent years without an effective treatment, just riding out the attacks day in and day out. It was hell. I don't think I need to tell you that.

What have you tried? How long has it been? If it is something that works with most, but has been uneffective in the past - TRY IT AGAIN!!!
I can't tell you how lost I would be right now had I not told my Doc I wanted to give Verapamil a try again - which had worked for me in the past - but not since going chronic in 1998.

You need a combative strategy against the CH. Ice is sometimes good for some, but to me it is like a band aid for a shotgun blast. I've done ice on the back of the mullet, but for me it seems to make things worse (that is just me, I have a couple of headache disorders). If you don't have it already, get the prophylactics and abortives. If nothing works and you are forced to ride them out then think of this:

You are in a battle. A battle that could cost you everything! Even your soul! If you are riding it out - do not freak out, throw a fit or anything to get your BP elevated - it just makes it worse. The blood goes shooting faster and faster. Instead, try to focus on something - breathing is a very good thing. Focus on taking a deep breath, then focus on letting it out. When you breath in, visualize light coming into you. When you exhale, visualize black things exiting you. Breath deep. Focus on the beast leaving you. It will happen in time. I know how hard it is, but man, if nothing else works, you have to make it through it. THERE ARE BETTER DAYS AHEAD!!! Trust me, I know.

Peace and vibes,
Carl D
Title: Re: Meet the new boss, same as the old boss.
Post by cardogman on Apr 1st, 2006, 6:13am
You won't get fooled again


You won't get fooled again


Roger Daltry         Pete Townsend


Oh Yeah


Burtdog
Title: Re: Meet the new boss, same as the old boss.
Post by Neekwa on Apr 1st, 2006, 6:54am

Quote:
But how can you sit still...Man I am up pacing and rocking and pacing...


For me once the attack dwindles I can pretty much just pick up on whatever it was I was doing beforehand.


Quote:
A great woman named Cat advised me once to put crushed ice in your eye in the same way you do with your pillow.  It is very intense


I have never tried ice directly, but I'm sure the sting of having the cold applied directly to an area of the forehead would be unbearable within minutes. With the water it seems to be just enough chill to bear, plus the pressure from the faucet seems to cover a larger diameter of my face.


Quote:
Rereading that ....How long are your hits, seems you described a short one..if there is such a thing.


Normally 30 minutes to an hour. Yet at times I can  receive such a mild attack that I can just deal with it while avoiding these extreme measures. Those can last anywhere from ten to fifteen minutes and are rare as opposed to the normal drug out intense attacks.


Quote:
Dude, first off, are you on any preventive/ abortive meds?

Do you have any o2 to suck on to abort an attack? Imitrex? Zomig? Frova? Anything?



I have no abortive really other than a pillow and the cold tap. I have never inhaled pure oxygen in my life, so you can imagine how excited I am to give it a shot one day. Currently I have a prescription 'CalanSR' tablets. Which doing a little research I discovered are normally for high blood pressure conditions.

I have never had a problem with high blood pressure, and the pills do nothing to benefit me that I can see.


Quote:
What have you tried? How long has it been?


Other than this current prescription and verapamil that accomplished the same results (nothing). I have tried Imitrex nasal poppers which again achieved no results for me. Not to leave out an OTC remedy labeled 'head on'. Which looks like a big glue stick that you apply directly to your forehead.  ::)

I have been coping like this for around four years now.


Quote:
I've done ice on the back of the mullet, but for me it seems to make things worse


That's what I would think as well. Pretty much like giving yourself a moderate 'ice cream' headache on top of the slamming one. The breathing exercises make a lot of sense, and I have tried this in various ways. But the truth is (for me anyway) the pain mounts to such a degree that I  find myself holding my breath in just on instinct to deal with it.


Quote:
Oh, and are you a writer?


lol, no. But I have read my share of Stephen King novels over the years.  ;;D
Title: Re: Meet the new boss, same as the old boss.
Post by thebbz on Apr 1st, 2006, 7:59am
;)
Good to see your still with us. I think the 02 would be a good thing for you..Much less pain.
You can tell when its coming. They are not 2 to3 hour hits. And you need to stick with the BP meds they are effective for some, and are not as deleterious as some of the other drug therapies. Cafergot would be the next if you haven't tried it yet. The imitrex works best by injection for CH. Try some 02 first. The verapamil may be revisited and the dosage increased. I dont know what you were on.I used to battle it out with these when I was younger..there is no need for that.
You take care and there is plenty of help with dealing with the doctors here.
Just some suggestions..
all the best
jb
Title: Re: Meet the new boss, same as the old boss.
Post by sandie99 on Apr 1st, 2006, 9:12am
I wish you lots of PF days... [smiley=hug.gif]

Sanna
who just got rid of another hit with ice cold red bull
Title: Re: Meet the new boss, same as the old boss.
Post by nani on Apr 1st, 2006, 10:18am
Wow.
I used to like to scrunch a pillow into my eye. Until I found a cool "ice" pack. Now I shove that in. It's made from dry corn (available in the Spanish section of your supermarket) It doesn't hurt the skin because there's hardly any moisture in it. It's covered in fabric.
Bending your head over into the pillow may actually make things worse. It does for me, anyway.
Try an ice pack... try it sitting up or pacing....
Oh, Calan is verapamil, a standard CH prevent. It takes a few weeks to reach therapeutic levels.
pf wishes, nani
Title: Re: Meet the new boss, same as the old boss.
Post by Neekwa on Apr 1st, 2006, 10:47am

Quote:
Sanna
who just got rid of another hit with ice cold red bull  


So high content caffeine drinks can actually stifle an attack for you? That's simple enough to at least try out for me anyway.

Maybe I'm ordering the wrong thing when I head out to the local bar (which has been ages ago it seems.) I pretty much expected at least one to occur before even walking into the place anyway. The whole point in going is to just enjoy yourself for a bit, so once that one headache was past me after 45 minutes or so I could finally enjoy myself thank god.

I'm aware what a major trigger alcohol is, and I rarely drink. For example I don't buy beer at the supermarket or have any stocked in my fridge. I have to be out and about within a social circle before I tend to order a drink. Having said that im not going to give up ordering beers at the local pub because of these damn things. (I'm getting them at home without any alcohol consumption at all anyway)

I'm sure a few of you would be curious as to how I deal with an attack in a noisy pub for example. Well I just do, sure I know I could just go home and by the time I arrived there the attack would be diminishing anyway. Obviously then I would have given up a night out of course. So I just deal with it there.

I'm familiar with a lot of the patrons, and they are familiar with my 'problem' believe it or not. They might not totally understand it, but they are aware I suffer from these little 45 minute headache fits. So if I have to head off to the sink there I do it (which I hate because at the same time I'm also concentrating of just coming in contact with the water, not the sink).

I will lower my head into my arms at the bar also if that's what it takes, or even step out to the car to 'grapple' with it there. After regular occurrences for four years now I would estimate that I have dealt with over 1,200 headaches maybe, with absolutely no abortive whatsoever. After that many 'hits' you get real familiar with every little detail regarding the headache itself, and of course every minute detail in your physical and mental attempts at just coping with it.

For example, how hard you squint your eyes, or the position of your tongue in your mouth, or your breathing repititions etc. It sounds odd I know, but being as familiar as you can with what is just about to play out in your own head is a benefit in it's own way.

It's obvious that I'm rambling on again by now, but another point that should be raised about why 'Cluster headaches' are a big headache in more ways than one is...

I would bet 90 to 95 percent of the population have no idea as what cluster headaches in fact are, or ever heard that term spoken out loud before. I know I sure didn't, and that makes them even more of a challenge to deal with for everyone involved. Maybe what this infliction needs is a celebrity spokesperson to draw more attention to it.

Seems like (maybe this is just my warped perspective on it) - that nothing is really taken serious in this country, or any stride really taken to address it unless the majority of us became aware of it via some celebrity campaigning for a resolution to it.

Can you imagine if 'Bono' appeared on CNN tomorrow to enlighten us all in regard to his daily battles with cluster headaches? Is it just me, or at that point couldn't we expect to see various charities and research laps springing up all over the place because 'Bono'has declared 'war' on cluster headaches?

Maybe then my insurance provider would realize that I'm in just as dire need for an oxygen tank as the average Joe with some type of heart condition.
Title: Re: Meet the new boss, same as the old boss.
Post by nani on Apr 1st, 2006, 11:18am

on 04/01/06 at 10:47:49, Neekwa wrote:
Maybe then my insurance provider would realize that I'm in just as dire need for an oxygen tank as the average Joe with some type of heart condition.


http://www.chhelp.org/mhni.html
Print the above link, take it to your dr, and have him write the insurance company for you.
Title: Re: Meet the new boss, same as the old boss.
Post by jon019 on Apr 1st, 2006, 6:13pm

on 04/01/06 at 06:54:34, Neekwa wrote:
I have no abortive really other than a pillow and the cold tap. I have never inhaled pure oxygen in my life, so you can imagine how excited I am to give it a shot one day. Currently I have a prescription 'CalanSR' tablets. Which doing a little research I discovered are normally for high blood pressure conditions.

I have never had a problem with high blood pressure, and the pills do nothing to benefit me that I can see.


 ;;D



Hi Neekwa,

Don't get hung up on the specific uses drugs are intended for. there is nothing specific for CH so we take what we can get. I don't have high blood pressure either but verapamil has worked well (so far). Ask your doc for regular verapamil, Calan SR is "sustained release" and does not work as well.

by all means get the O2. many here will attest to the benefits.

regards

Jon
Title: Re: Meet the new boss, same as the old boss.
Post by Cerberus on Apr 1st, 2006, 6:34pm
Neekwa,

 Can I ride your Magic Bus? !  [smiley=huh.gif]
 
 Hang in...
 'Bus
Title: Re: Meet the new boss, same as the old boss.
Post by Jonny on Apr 1st, 2006, 9:20pm

on 04/01/06 at 18:13:32, jon019 wrote:
Hi Neekwa,

Don't get hung up on the specific uses drugs are intended for. there is nothing specific for CH so we take what we can get. I don't have high blood pressure either but verapamil has worked well (so far). Ask your doc for regular verapamil, Calan SR is "sustained release" and does not work as well.

by all means get the O2. many here will attest to the benefits.



[smiley=thumb.gif]


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