I'm new to this site.  My husband is this term I'm learning from you guys - a Clusterhead.  He has been having them for 10-12 years but was only officially diagnosed about 5 years ago.  I've been reading the posts and also the info at the side (cluster traits, kip scale, etc.) and it seems like everyone experiences a strong need to move around during a CH.  My husband doesn't move at all.  Before oxygen, he would get into the fetal position with an ice pack on his head and stay there until it passed.  Now he simply lays down or sets up with the oxygen mask on.  I'm fairly certain he isn't mis-diagnosed (his symptoms, otherwise, are spot on and he has responded well to the typical CH treatment - verapamil, O2, Imitrex, etc).  Are there any other non-movers out there?

Yes, I'm one.

Symptoms are only approximations of a dissorder--rarely written in stone. You don't have to have every feature to get the Dx.

We have had this discussion over the years and it's clear that some of us find it best to settle in a comfortable posture, often in darkness and silence, and engage in some form of relaxation  exercise. Movement often intensifies the pain for some people. 

Thanks for the reply.  Yes, that is him exactly.  He wants to be in the dark in silence and move as little as possible. 

I've had CH for 21 years and the first 10 I would pace, and do things like hit myself. Then one day I just stopped.

I now sit in my dark room and try not to move. (it does help Me). But during hard hits I cannot resist rocking back and forth, but I still keep movement to a minimum.

Many sufferers find this nearly impossible to do, and I understand that. I once was the same way.

Don

I haven't pushed the upper end of the Kip scale for quite some time, so I don't know what I would do. I used to pace, thrash, etc., but now I get to it before it gets bad, and I just sit in a chair with my eyes closed and visualize the O2 going in, the CO2 going out, and the pain melting away.

Works pretty good for me.

I used to pace big time. Then I gradually transitioned to sitting and rocking. Never could lay down - my instincts were to curl up on my side, but it just got worse so I learned not to even try to do that.

Now I just head for my"cluster chair" and madly suck O2 for a few minutes, then go back to what I was doing. Haven't seen a real K10 since I discovered high flow oxygen therapy.

Life is good.

it depends on the severity of the attack for me. if the attack isn't to bad i'll try to meditate. then  sometimes i just gotta dance around.

-johnny- wrote on Aug 21^st, 2009 at 8:37pm:

it depends on the severity of the attack for me. if the attack isn't to bad i'll try to meditate. then  sometimes i just gotta dance around.

i'm like you.
it depends on the attack for me.
sometimes i have to dance, sometimes im a statue.

I've never been what you would call a "pacer", except for the very first cycle I had and was not diagnosed.  I paced, cried, screamed through what I thought was the most horrible pain I had ever experienced. Tried to lay down in a dark room because that is what I would do with a Migraine.  That helped, but only for low level hits.  I, too, assumed the fetal position and thrashed on the bed or floor with the bigger hits.

When the second cycle started, I realized I just didn't have the energy to thrash and pace, so I tried just sitting - although I did rock back and forth, and bounce my knees up and down.

Then I found O2, and life has been good since.

Sandy

I sit, leaning forward in a comfortable chair with ice on the back of the neck and O2 mask.  I like some light and background noise as long as it's not obnoxious.

Been a clusterhead for 38 years.

Intensity of pain can lead to an unsettled frustration, whatever attempted mental coping seem insufficient.  Being still, rocking, pacing, if the pain is not diminishing in any way, restlessness can be a part of enduring.

In the distant past when all I had was nasal spray trex and awoke late into a hit, I knew how bad it would get over the next half hour or even longer before the immense momentum could be overtaken, but knew it do it.  Whatever it took to tick away those minutes, a difficult, long time in cluster pain.  Simply grasping to endure somehow beyond being able until the increasing pain could be felt peaking in matching battle with the trex before slowly backing it down.

Unsettled, mostly rocking in many positions while holding an ice pack to the worst area of pain was common.  Experience with walking around seemed accident prone.  Afoot, leaning this way and that, whatever which way before moving very short distances up or down, dancing I guess, certainly just happens, but staying safe is a good idea, along with something to drip on.  Never know what position or if balance will be sustainable in the next moment when being overcome.



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he would get into the fetal position with an ice pack on his head and stay there until it passed.

An ice pack has helped but I tend to change postions.  Depends.



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Now he simply lays down or sets up with the oxygen mask on.

Yep, oxygen shortened the abort time and along with an ice pack, gives me something to do, curtailing else.  More effective to sit and breath, a more direct path knowing the time is shorter.