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        Cluster Headache Help and Support >> Cluster Headache Specific >> Describe Your CHs
        
(Message started by: serendipity on Aug 5^th, 2006, 12:21pm)

Title: Describe Your CHs
Post by serendipity on Aug 5^th, 2006, 12:21pm

I'm curious to see how similar or different everyone's cluster headaches are. Also, I have often wondered if the pain experienced by chronic suffers is different than the pain experienced by episodics, since they seem to be almost an entirely different "breed" (different triggers, etc.).

My CHs almost always start out as a feeling of tightness in my neck and forehead, directly over and behind my eye, on whichever side I'm having them that cycle (my cycles are typically right-side cycles, but I've had a few left-side cycles over the years).

Within minutes - and sometimes seconds - the tight feeling will be replaced by a hot, searing pain. I think of this as the "burn." During a kip 6 or more, my eye and nose on the affected side will drip. For me, this "burn phase" is the worst part of a CH.

When my medication or O2 starts to kick in (or after an hour or two, if left untreated), I will start to experience extremely acute jabs of pain that literally feel like an icepick is being poked into my brain. Despite the pain, these jabs represent the light at the end of the tunnel for me, because they mark the beginning of the end of a CH. Eventually the burning sensation and excruciating pain will be entirely replaced by intermittent "icepick jabs," and the CH will disappear.

At this point, I'm usually left with a tight, sore feeling in my neck and above and behind my eye on the affected side.

I'm very curious to find out how my headaches compare with others'.

PFD to all, and thanks to everyone for being here. :-*

Title: Re: Describe Your CHs
Post by prcole18 on Aug 5^th, 2006, 12:49pm

Always on the left side, sleep being my worst trigger.

Generally starts with that tight feeling around the back of my neck, & then goes up to the top of my head.

When in full flow the whole of the left side of my head is in pain,. form the top going down through my jaw & in my neck, the top of my head being the worst in pain.

As you I also get the ice pick jabs & also as you these sometimes tell me that the end is in sight.

Also anything above a KIP 6 my left eye streams along with my left nostril, when it gets to this stage though im ready to kill the beast with an Imigran jab.

Paul

Title: Re: Describe Your CHs
Post by The mad viking on Aug 5^th, 2006, 12:58pm

Thats easy

HELL

Svenn

Title: Re: Describe Your CHs
Post by prcole18 on Aug 5^th, 2006, 1:00pm

on 08/05/06 at 12:58:52, The mad viking wrote:

Thats easy

HELL

Svenn

Good point, there is that part of it too!

Title: Re: Describe Your CHs
Post by chewy on Aug 5^th, 2006, 1:48pm

Extremely Painful

Title: Re: Describe Your CHs
Post by Guiseppi on Aug 5^th, 2006, 1:54pm

I'm episodic and you desfcribed mine almost to a T. The only thing I would add is mine start with a sick feeling in the pit of my stomach, an "OH SHIT HERE IT COMES" kind of a thing. Left untreated they follow your description. Oxygen and cafergot usually abort mine.

Guiseppi

Title: Re: Describe Your CHs
Post by starlight on Aug 6^th, 2006, 2:30pm

Starts with a feeling of tightness behind eye and kind of teases me for a while, then starts building up and then feels like someone is yanking on my eye repeatedly then explodes like a crowbar is prying open top of my head (this is a new development past 2 cycles)--I do not like the crowbar feeling.
But when I get them during sleep (which is the usual) the whole beginning of the headache gets incorporated into a dream.

Title: Re: Describe Your CHs
Post by chopmyheadoff on Aug 7^th, 2006, 2:19am

for me it starts with a tight feeling down the side of my neck. this gets worse and in the end i sit there stretching my neck to the left as far as it will go.
this then turns into a mild "cramp" inside my head, really deep. this quickly gets worse and worse andil it feels like my head is going to explode.

im usually moaning on the floor by this point.

if its going to go above a 7 then on top of this pain i also get a huge "lightning bolt" of unbelievable pain every second or so. this pain is so bad it feels like im going to throw my insides up or my head or eye is going to pop. by this time im dribbling, screaming, banging and pacing.

evil >:(

Title: Re: Describe Your CHs
Post by Bond007 on Aug 7^th, 2006, 11:39am

Mine starts out feeilng like someone has just punched me in the eye. I get this tingly feeling like the area around my eye is swelling up. Along with this comes a an extremely congested left nostril. A dull ache for a few minutes, then it rapidly escalates into a searing pain. It almost feels like someone has lasso'd my eyeball, is trying to pull it out of my eye socket and simultaneously lit the lasso on fire. The pain quickly wraps around to my temple and extends downward to my cheek, jaw, neck and when I hit a kip6 or a above, I feel flashes of "white hot" pain searing up from my shoulder to the top of my head. I'll also feel "rebound" pain as far down as my feet. The entire left side of my body feels uncomfortable. This past Saturday, I was actually shaking uncontrollably all over because the pain had just gotten so damned intense.

Title: Re: Describe Your CHs
Post by erickthered on Aug 7^th, 2006, 11:57am

Mine starts with my eye twitching, then I get the feeling of a hot ice pick boaring into my temple, and when its in it digs around in the back of my eye for a while setting the back of my eye on fire. after my eye catches fire the pick moves around the side of my head trying to light the rest of it on fire as well. [smiley=bomb.gif]

Title: Re: Describe Your CHs
Post by NONI on Aug 7^th, 2006, 6:13pm

Is'nt it amazing how it all sounds so familiar ....mine are quite similar with pain from top of head to bottom of jaw...also don't forget the sweating profusely.on the forehead..same side also I am a lefty so far but it seems that now either the meds are working or I am coming out of cycle but I still have shadows everyday ,,has been six or so weeks since start.Get twitching still every day on both sides ,,,weird????

Noni

Title: Re: Describe Your CHs
Post by JeffB on Aug 7^th, 2006, 6:46pm

I quit worrying about how they start but I am similar to you.
I just accept the fact that these fuckers hurt like hell. As a matter of fact I now know what hell is like!

Title: Re: Describe Your CHs
Post by Charlotte on Aug 8^th, 2006, 8:53am

Friday, the neurologist determined I have elements of cluster but do not have cluster, or a few other similar ha, so I'm now outside the box. I'll be trying neurontin during the next 2 months.

So this is not ch but a ha with elements of ch. It starts with one or two rounds of sweating, then a perioid of pf time. Congestion & one sided nasal drip. Pressure/pain, maybe spasm but not really throbbing above r. jaw hinge. Moves up & over & through the right eyebrow, usually twice on the ramp up. I get the irrisistable urge to jump up & run around the block at a fast walk of about 4.8 mph. If I can't jump up, I rock. If I don't get that "Oh, God" feeling that Guiseppe mentioned then I think I can ride it out but if I get that "Oh, God" I know I need 1/4 maxalt or red bull quick and that works over half the time. (they occur about every 2 hours and I ride out most.)

If I don't treat, I am very careful not to look at people who don't know me as I run around the neighborhood, or courthouse, or walk to my car, because the pain makes me look like I want a fight but I personally am defenseless at that time.

I use liquid kudzu about 3 times a day and that seems to work systemically, and lowers the end pain from the top level so I usually don't go above a 7 and occasional 8, but usually 4 to 6 range. I haven't gotten used to the kip scale, so I use the earthquake scale.

Charlotte

Title: Re: Describe Your CHs
Post by Tattoo on Aug 9^th, 2006, 10:06pm

I guess Im lucky because most of the time I get a warning 15 min. before with my eye twitching & almost like Im crying amount of fluid . Then the right side of my nose fills up to the point of not being able to breath or blow it out . then the pain sets in . Stiff neck with pain ,then into my jaw so bad sometimes I feel like pulling my teeth with plyers , then the eyeball pain hits .behind the eye & around the eye , now its time to imitrex and go for a walk . but at a 9-10 I cant walk, hell I cant get off the floor even if I want to at that point .

Title: Re: Describe Your CHs
Post by unsolved1 on Aug 9^th, 2006, 11:57pm

Like a huge crochet needle is poked into my eye, twisting and turning, in & out.... physically rearranging 1 side of my brain. :'(

UNsolved

Title: Re: Describe Your CHs
Post by dino6130 on Aug 14^th, 2006, 5:42pm

I can tell it's coming because I get a dull pain behind my right eye. That's followed with jolts of pain like a hot poker going from my eye to the back of my head. Feels like a brain freeze times 10. My eye waters and I shake my head with my hand. I've put my fist through a wall today. I hate it. I hate it. I hate it. Why is this happening?

Title: Re: Describe Your CHs
Post by dmurp on Aug 14^th, 2006, 9:29pm

Usually always on the right side. Starts in the back of the neck and I feel a swell on the right side in the roof of my mouth. Usually within five minutes stabbing in cheek, jaw, and behind eye. Summed up Hell. Eposodic for nine years.