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        Cluster Headache Help and Support >> Cluster Headache Specific >> To Dance or Not To Dance
        
(Message started by: TomTerrific on Feb 20^th, 2007, 3:06am)

Title: To Dance or Not To Dance
Post by TomTerrific on Feb 20^th, 2007, 3:06am

I've been at this CH thing for about 30 years, have episodes about every year that can last weeks or months. Was finally diagnosed about 10 years ago and I've had success with verapamil which seems to break the cycle for another year, sometimes more. I really feel for you chronics out there. Anyway, to the point. I don't dance. When the pain starts I crawl in bed, curl up in the fetal position with my palm on my eye and focus on trying to slip around the pain. Sort of mental hide and seek with the beast. Does this work with anyone else or am I just out there? Just wondering.

P.S. sorry if this is rambling, it's 2 am and the worst ones always hit at 3am sharp. Only got a couple of hours sleep last night and I really don't know if I want to try again tonight. oh well, maybe I'll get lucky and skip a night. Wish me luck!

Title: Re: To Dance or Not To Dance
Post by LeLimey on Feb 20^th, 2007, 4:05am

Tom not everyone reacts in the same way. Some are more physical than others some more restrained - the pain remains the same though.

I do know of one sufferer here in the UK who "freezes" with CH. He's the only person I know who does that but that doesn't make him "wrong"

You mentioned verap - do you have any abortives?
Helen

Title: Re: To Dance or Not To Dance
Post by duckie on Feb 20^th, 2007, 4:34am

Hi Tom, just wanted to say hello and I hope the Beast missed you tonight. I sometimes do the same but then change to sitting & rocking and it doesn't seem to matter which way I try. Lii

Title: Re: To Dance or Not To Dance
Post by georgej on Feb 20^th, 2007, 10:04am

Hi Tom,

Whenever possible, I force myself not to dance. Dancing means I've lost control, and it seems to make the whole experience worse somehow.

I can't lie down. I sit bolt upright on the couch, silent, sweating, leaking tears and such, and stare slack-jawed into the middle distance--turning my head rhythmically to "click" over the "cluster lump" that forms at the base of my neck.

I'm sure it's not a pretty sight. I know the cats all run away and hide.

If it's worse than an 8 or so, I find myself up pacing and moaning, though. Can't help it.

Best,

George

Title: Re: To Dance or Not To Dance
Post by Guiseppi on Feb 20^th, 2007, 10:27am

I'm a fetal positioner too when I'm really getting creamed. Smash my palm against my eye and curl up. If it approaches ten I pump my legs like a bicycle!!

Same question, do you have any abortives??? I use oxygen with an oral cafergot...(oxygen will stop the HA in minutes but without the cafergot backup it comes right back in 10 minutes)......I also use imitrex injectables when I get caught without my 02.

Hoping you get some rest sounds like you could use it.

Guiseppi

Title: Re: To Dance or Not To Dance
Post by TomTerrific on Feb 20^th, 2007, 3:54pm

Caffeine works well for me IF I get it at the first tingles. I take a 200mg tab with a soda. Of course this doesn't work well in the middle of the night. I avoid caffeine at all other times to avoid building a tolerance.

BTW staying up late just postponed the 3am CH to 5am, but it wasn't as bad, about a 5. Have had shadows all day, but no fullblown CH. fingers crossed. Thanks for the well wishes!

Title: Re: To Dance or Not To Dance
Post by Barry_T_Coles on Feb 20^th, 2007, 5:34pm

Hi Tom & Welcome
I’m chronic and before I found out about o2 when getting the bad hit Id hide myself away in the spare room, roll on the bed, floor, crawl, squeeze the head whatever to try & stop the pain but certainly not able to lay still unless I passed out.
I haven’t had a bad hit now for 141days but still shadow at varying levels and had been having trouble sleeping occasionally; on one occasion during the day with a heavy shadow I was using a gel cold pack to reduce the intensity & fell asleep which led me to think that maybe it could help me sleep better at night, I’ve been doing this over the last six or so weeks & having really good nights sleep ever since, I’m not saying this is going to help with big hits but may be worth a try.

Hope you get some PF time shortly
Cheers
Barry

Title: Re: To Dance or Not To Dance
Post by JeffB on Feb 20^th, 2007, 6:21pm

I pace and cuss till kip 8-10, then I'm on the floor kicking and rolling, screaming, palm pressing eye.............

Title: Re: To Dance or Not To Dance
Post by Mare on Feb 20^th, 2007, 6:57pm

Hi Everyone. I've been lurking for a few weeks now and have been so pleased with the site and all the hard work and caring that has gone into it.

Just wanted to say that I don't dance with the beast either. Seems to me that any movement whatsoever just aggravates the things so I stay still. Laying down is not an option so I sit up with no bright lights and hopefully peace and quiet. I find that my HA go away faster this way than when I was younger, I would cry and carry on and while many times that can't be helped, it just makes my pain worse.

Pain-free days and nights to all.

Title: Re: To Dance or Not To Dance
Post by BB on Feb 20^th, 2007, 7:17pm

When Daniels hits get to a KIP 8 or above, forget it, he dances. Literally impossible for him to sit still then, nor for him to keep quiet. If he wasnt writhing on the floor then he would be rocking in a chair and moaning, crying through gritted teeth. This is even after all the relaxation techniques that he learnt from the pain clinic.

He said that when it gets past a Kip8, he becomes totally consumed by the pain and not able to think of anything else.

Annette

Title: Re: To Dance or Not To Dance
Post by the_watcher on Feb 20^th, 2007, 9:16pm

My husband very rarely dances. It just makes it so much worse for him if he looses control. He just assumes the indian seated position and rubs his head and stretches his neck. Bastard damn headaches......

Title: Re: To Dance or Not To Dance
Post by Phil L on Feb 20^th, 2007, 9:27pm

"Consumed by pain" pretty much sums it up.

Title: Re: To Dance or Not To Dance
Post by darth_malted on Feb 24^th, 2007, 11:18pm

on 02/20/07 at 03:06:53, TomTerrific wrote:

I don't dance. When the pain starts I crawl in bed, curl up in the fetal position with my palm on my eye and focus on trying to slip around the pain. Sort of mental hide and seek with the beast. Does this work with anyone else or am I just out there? Just wondering.

I do the same thing. This sounds silly, but I focus on a bubble that encapsulates the whole pain region of my head. When I do this sometimes I can get the pain to go away almost completely, but only for about 3-7 seconds before the beast comes crashing through my defenses. After that it's OUCH, OUCH, OUCH, until I can calm down enough to focus and try again. My record might be a whopping 10 seconds. It's almost like trying to cup your hands and hold on to water. There is really no benefit other than the feeling that at least I'm doing something to fight back.

As an abortive I use raw ginger and/or red bull, and sometimes strenuous exercise like push-ups or skipping rope.

--ted- - --

Title: Re: To Dance or Not To Dance
Post by froggy on Feb 25^th, 2007, 12:35am

Lots of humming here.

Title: Re: To Dance or Not To Dance
Post by firecracker7481 on Mar 4^th, 2007, 3:07am

I definitely don't "dance" I find that if i move around the h/a gets worse...I have to lie still with a stiff support under my neck and a cold pack over my eyes...

For me I just lay there and pray for it to pass and hope it does...Staying as still and calm as possible is the only things that gets me through...

Title: Re: To Dance or Not To Dance
Post by Sandy_C on Mar 4^th, 2007, 6:18pm

Well, as you all can see, how we all cope with the pain of CH varies widely - dance, rock, fetal position on the floor - it's still an ungodly pain.

Personally, I don't dance much either. When I first began getting CH hits I was undiagnosed, and boy, did I ever dance! For me, the dancing I think was as much out of fear that I was going to die as it was from the pain I was experiencing.

Now I know, I will not die from this, which mentally, at least, helps me to remain calmer through a hit - I try not to panic. I try to remain as still and quiet as possible - it conserves my strength.

So, I became a rocker. Sat upright, jamming ice packs to my head while pressing on my right eye and moaning and groaning.

Now, I am triumphant! With my 02, and rc seeds, I busted my cycle, for the first time since this whole thing began. Cycles typically lasted from 8 (minimum) to 16 weeks. I stopped this cycle in a little over 2 weeks, and haven't had so much as a shadow in over a month.

Life is good.

Sandy

Title: Re: To Dance or Not To Dance
Post by Lobster on Mar 5^th, 2007, 1:21am

My last truly fierce hate-to-think-about-it one? No dancing.

Bite on a towel... wondering how many more seconds before my injection takes hold.

Look at the clock... wonder when 1:26 will turn into 1:27. Repeat about 300 times.

Lose patience cuz the f'in clock is stuck on 1:26. Grab the 'emergency syringe' I keep loaded next to me when in cycle... jamb the bitch into my thigh... way to deep. Mash it down with my thumb.

First injection ends it about a minute later. Notice that my leg really hurts like a sonofabitch, and that I bit the shit out of my lip.

Which is why God put shrooms and RC seeds on the Earth... so that we do not need to deal with that shit anymore.

Though I would probably dance or something if I had nothing for it.

Title: Re: To Dance or Not To Dance
Post by Sandy_C on Mar 5^th, 2007, 1:17pm

Which hurt the worst? The leg or the lip? ;;D

The only dancing I plan on doing from this time forward is on a dance floor!

Lobster, may I ask you to dance should we meet?

Sandy

Title: Re: To Dance or Not To Dance
Post by Lobster on Mar 5^th, 2007, 5:36pm

on 03/05/07 at 13:17:19, Sandy_C wrote:

Lobster, may I ask you to dance should we meet?

You betcha! Would not miss it!

Title: Re: To Dance or Not To Dance
Post by Skyhawk5 on Mar 5^th, 2007, 8:27pm

Danced in the begining and tried to knock my own brains out. Didn't work so now I sit Indian style and don't move. Sometimes I rock at kip-10.

After the attack, more often than not my face is inches from the floor.