Welcome, Guest. Please Login or Register
Clusterheadaches.com
 
Search box updated Dec 3, 2011... Search ch.com with Google!
  HomeHelpSearchLoginRegisterEvent CalendarBirthday List  
 





Page Index Toggle Pages: 1
Send Topic Print
Disagree with the need to move a lot. (Read 3516 times)
jonas3333
CH.com Newbie
*
Offline




Posts: 10
USA, MI.
Gender: male
Disagree with the need to move a lot.
Jul 14th, 2012 at 9:24pm
 
Hi. I've suffered from clusters since I was a teen (now 42) and thankfully I've got it easy compared to some of you. I'd say I'm definitely episodic and relatively minor in comparison to others. Just got over a very minor one.
That being said, I have a problem with the one of the frequent symptoms being restlessness/the need to walk. I see this associated with clusters everywhere and while that may be common, I don't think it's defining. When they occur for me there will be no walking around.  There may be thrashing and there's certainly going to be rubbing and various positioning in a desperate attempt to make it go away, but walking is never going to happen during the peak time. Also, while I never come close to vomiting, there are tinges of nausea during an episode and well, eating is just unthinkable anyway.

I know it's probably likely that the majority of sufferers DO experience the need to move about more, but I just want to state that it's not true with me.
Back to top
  
 
IP Logged
 
Guiseppi
CH.com Moderator
CH.com Alumnus
*****
Offline


San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
Gender: male
Re: Disagree with the need to move a lot.
Reply #1 - Jul 14th, 2012 at 10:09pm
 
I'm the same way. I've never been a pacer. I curl up on the bed or the floor and do the "bicycle kick" with my feet. It's a very common trait to be restless and pace around, but not an absolute.

Joe
Back to top
  

"Somebody had to say it" is usually a piss poor excuse to be mean.
 
IP Logged
 
Bob P
CH.com Hall of Famer
*****
Offline


Shut up Bob!


Posts: 4573
Clio,California
Gender: male
Re: Disagree with the need to move a lot.
Reply #2 - Jul 15th, 2012 at 7:51am
 
I was a rocker.  Sat in a chair and rocked back and forth.
Back to top
  

Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.  "SHUT UP HUB!"
WWW  
IP Logged
 
metoo
CH.com Junior
**
Offline




Posts: 56
ann arbor mi usa
Gender: male
Re: Disagree with the need to move a lot.
Reply #3 - Jul 15th, 2012 at 8:10am
 
I live in the northern climes and find pacing helpful...if it's freezing and I go outside.  Mostly I've come to believe that the pacing I did when the beast was a new visitor was simply because I didn't know what else to do.  Trying to think about what to do and it profoundly impossible to have a logical thought.  That was when I had no dx, no tx, no friggin' idea what was happening.  Heck, maybe I just didn't want to die lying down.  I will walk a bit now, but mostly I kneel when it gets to that algorithmic and magical last digit of Kip's scale.  Once I pass 9, I change the scale...just so I never reach a ten.  I don't think I could bear the thought of reaching a ten and then wondering if they could actually be worse. 

Rambling.  Three episodes last night.  No wonder sleep deprivation is such a good torture.

TJ
Back to top
  

#4 - Avoid annoying people who don't deserve it.
 
IP Logged
 
Mike NZ
CH.com Hall of Famer
*****
Offline


Oxygen rocks! D3 too!


Posts: 3785
Auckland, New Zealand
Gender: male
Re: Disagree with the need to move a lot.
Reply #4 - Jul 15th, 2012 at 3:27pm
 
It seems that everyone has their own version of the "dance", possibly with a few personal variations according to the Kipp number. For me it can be laying face down on a bed or the floor, just constantly moving around or possibly half sitting, half crouching on the floor, just rocking.
Back to top
  
 
IP Logged
 
jonas3333
CH.com Newbie
*
Offline




Posts: 10
USA, MI.
Gender: male
Re: Disagree with the need to move a lot.
Reply #5 - Jul 15th, 2012 at 6:05pm
 
Relieved to hear there are others who don't walk as well.

My feet are always restless but especially during an episode. Paid special attention to that today when the visit came. I will, however do ANYthing that occurs to me to make it better and I'll often find myself hanging my head upside-down off the bed and contorting my position in unusual ways. As I mentioned, I'm luckily having mild ones right now and it's been well over a year since they've been back.  My worst ones did bring screams/whimpers, headbangs and a general wish for death relief during the worst moments.  But thankfully, I haven't seen that caliber in years.
Back to top
  
 
IP Logged
 
Skyhawk5
CH.com Alumnus
***
Offline


I love YaBB 1G - SP1!


Posts: 1320
Ypsilanti, Mi. USA
Gender: male
Re: Disagree with the need to move a lot.
Reply #6 - Jul 15th, 2012 at 6:38pm
 
Another Michigander here. Many years ago I would pace, scream, hit myself etc. In fact in 1989 I went out the front door screaming, after I came back in the house the Sheriff showed up.

Now I go to my CH room and drop to the floor & sit Indian style until the hit is over. Trying not to move.

Don
Back to top
« Last Edit: Jul 16th, 2012 at 7:05pm by Skyhawk5 »  

Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
Skyhawk5655  
IP Logged
 
Billie
CH.com Junior
**
Offline


I Love CH.com!


Posts: 62
Maryland
Gender: female
Re: Disagree with the need to move a lot.
Reply #7 - Jul 15th, 2012 at 8:17pm
 
I was curious as to what other people did during a hit and watched some videos on YouTube.  It was like watching a horror movie and darn near had a panic attack because I know that feeling all to well.

I usually begin by lying still, usually with my eye planted in the corner of the pillow, but that lasts maybe 5 minutes.  I rock back and forth, smash my eyeball and put pressure on various parts of my head.  Sometimes I find walking around helps a little.
Back to top
  
http://www.facebook.com/smithbilliejoe?ref=tn_tnmn  
IP Logged
 
AppleNutClusters
CH.com Old Timer
****
Offline


2012, Year of the Honey
Badger


Posts: 261
Richmond, Virgina, USA
Gender: male
Re: Disagree with the need to move a lot.
Reply #8 - Jul 15th, 2012 at 9:30pm
 
As so many of my hits have occurred at work, I've developed a pretty low-key ritual. Don't wanna scare the "normies"  Cheesy

I hide in the corner near the bathroom, one of few spots left to stand in our crowded workspace.  My left hand will be clamped to my leaking left eye, and I may be facing the wall as if to ram my head through it.  If it's bad enough, there may be tiny surprised gasps...quiet expressions of shock, I guess.  All of this in a space about 1 foot square.

So no, I don't need to move a lot.  But given the space and privacy, I'd run a marathon to get away from this pain in my head.
Back to top
  
jgroulx@mac.com  
IP Logged
 
SethG
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 7
NYC
Gender: male
Re: Disagree with the need to move a lot.
Reply #9 - Jul 16th, 2012 at 4:14pm
 
I rock back and forth and rub my head and neck during an attack.
Back to top
  
 
IP Logged
 
Linda_Howell
CH.com Moderator
CH.com Alumnus
*****
Offline


Do not feed the Moderators


Posts: 11927
Santa Maria, Ca.
Gender: female
Re: Disagree with the need to move a lot.
Reply #10 - Jul 16th, 2012 at 5:52pm
 
Personally, I don't see the difference.  You say you don't feel the need to walk...but you also state you thrash around and need to re-position yourself.  Others need to rock or bicycle kick. Still others, do something else. (we are not called head-bangers for no good reason)  That is my my mode of dealing with it along with pacing and rocking.
It doesn't seem to matter...we are all having the need to move in SOME way.  Dr. Peter Goadsby, who has spoken at many of our conventions told us this..."when a cluster headache presents itself, there is absolutely NO WAY you can NOT move around"

(For those who don't know, Dr. Goadsby is one of the  pre-eminent neurologists in the country who has advocated for us.)

Those who say they sit absolutely still, or lay down quietly would be torture to the majority of us. This kind of headache is NOT migraine where they HAVE to lay still.   
Back to top
« Last Edit: Jul 16th, 2012 at 5:53pm by Linda_Howell »  

Hurt people.....hurt people.   Think about it.
WWW calientev8 N/A N/A  
IP Logged
 
BlueDevil
CH.com Junior
**
Offline


I Love CH.com!


Posts: 52
Australia
Gender: male
Re: Disagree with the need to move a lot.
Reply #11 - Jul 16th, 2012 at 6:48pm
 
Glancing through the replies above it does seem that most people exhibit some kind of 'movement behaviour' during an attack. What form that takes seems to vary from one person to another, but pacing seems quite common, and rocking and banging etc also fairly common. Staying completely still seems uncommon, but would be interested to hear from more people on that one.

Personally I pace, and the stronger the pain the faster I go. However in some circumstances I can adopt some other form of movement, or even suppress it if need be. For example, when I am using oxygen I just sit in a chair, but tend to be somewhat agitated, possibly standing up then sitting again, then standing, then sitting etc (as opposed to just sitting quietly). I got a reasonably severe HA (around K-7) while in a conference surrounded by 4000 people. I quietly slipped a Maxalt wafer into my mouth and stayed relatively still for the 30 min it took to go away. I doubt the people sitting beside me would have realised something was wrong. It wasn't easy though!

Back to top
  
 
IP Logged
 
Skyhawk5
CH.com Alumnus
***
Offline


I love YaBB 1G - SP1!


Posts: 1320
Ypsilanti, Mi. USA
Gender: male
Re: Disagree with the need to move a lot.
Reply #12 - Jul 16th, 2012 at 7:36pm
 
Fighting the anxiety and agitation from a full blown CH attack has caused me to do all of the above and more. Some of this I'll call knee jerk reactions. It was impossible to avoid.

Over time I realized some of my reactions made the pain worse and extended the attack. Such as raising my blood pressure. I still pace during heavy shadows and pre-attack. This makes my wife very nervous and is one more reason I try to avoid these reactions.

The statement in the movie Platoon, "take the pain!", comes to mind. So I learned to rock as little as possible during hard attacks as each movement makes the pain spike for ME.

This is MY way, I can't ask or expect anyone else to just "take the pain".

Don
Back to top
  

Though I walk through the valley of the shadow of the Beast , I  have O2 so I fear him not.
Skyhawk5655  
IP Logged
 
SethG
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 7
NYC
Gender: male
Re: Disagree with the need to move a lot.
Reply #13 - Jul 16th, 2012 at 8:55pm
 
Besides what I said above I do....I also move from room to room the whole time, i'll stay in one room for probably a few minutes and then I go to another room.
Back to top
  
 
IP Logged
 
Beth E
CH.com Junior
**
Offline


Thanks for understanding
CH.com!


Posts: 88
Union City (Erie)  PA
Gender: female
Re: Disagree with the need to move a lot.
Reply #14 - Jul 17th, 2012 at 2:15pm
 
I believe this was why my husband was not diagnosed sooner.  He would punch and squeeze himself in the head, cry and yell on the way to the ER...but once there, he tried to keep himself all together.  As he would be sitting UPRIGHT fully or actually leaning forward a bit, (no laying back at all) his eyes closed, his head leaning into his right hand in the temple eye area, usually fingers of that hand were poking into his head wherever they were positioned.  They would give him pain meds....and if he spoke, usually was very short.  He really gets agitated which is one of the beginning signs for me if we are in public.The nurses would come in and ask how he was doing.  I would tell them he was still having pain...how did I know?  His feet!!! They never stopped moving!! It may even seem like he is asleep from all the meds, but his feet still were going!  If he had to move, he would grip on things so tightly, cause his eyes are usually shut.  Light sensitive, slight nausea, and NO eating during a hit for sure.  Sometimes not until quite a while afterward. He does NOT prefer total quiet though.  The TV or music that he likes on.  I think it helps him to try and focus on something other than the pain.
Back to top
  

No longer Helpless now!
 
IP Logged
 
jonathan67
CH.com Newbie
*
Offline


I Love CH.com!


Posts: 12
Re: Disagree with the need to move a lot.
Reply #15 - Jul 17th, 2012 at 5:19pm
 
Personaly for me I try to act normal, until it gets bad then I go away from people and do my normal odd stuff. I just dislike that people assume that Im mad at them or don't like them cuz I took off.
Back to top
  
 
IP Logged
 
AppleNutClusters
CH.com Old Timer
****
Offline


2012, Year of the Honey
Badger


Posts: 261
Richmond, Virgina, USA
Gender: male
Re: Disagree with the need to move a lot.
Reply #16 - Jul 17th, 2012 at 10:29pm
 
I think someone on the boards mentioned a Japanese study a while back, seemed to mention that they are much more reserved during attacks on the whole. I believe there is definitely a tendency to want to move in some way during an attack. But I also believe it is possible for a person to learn to control even the worst of worst pain... if that weren't so, we would not have stories of Civil War soldiers undergoing surgery with zero anaesthetics.  Yes, it CAN be learned.  No, it is NOT easy nor even desired, in a modern world with access to modern medicine.
Back to top
  
jgroulx@mac.com  
IP Logged
 
wimsey1
CH.com Alumnus
***
Offline


I Love CH.com!


Posts: 2457
MA
Gender: male
Re: Disagree with the need to move a lot.
Reply #17 - Jul 19th, 2012 at 7:43am
 
AppleNutClusters wrote on Jul 17th, 2012 at 10:29pm:
But I also believe it is possible for a person to learn to control even the worst of worst pain... if that weren't so, we would not have stories of Civil War soldiers undergoing surgery with zero anaesthetics.


Amputations were accompanied by opium derivatives, like laudinum. Limbs were removed without the use of anesthesia only when none was available, and many died as a result of what they called "limb removal shock." Heck, my mother-in-law grew up during WWII Germany, and had to endure tonsil removal without anesthetic. Contemplate that for awhile!

While I suspect we can endure a great deal more than we want, I also believe Don is correct: it isn't just the pain causing the the need to move, but the growing panic and anxiety accompanying the attack. The other day, while I was aborting a hit with O2 and rockin' back and forth, I had the thought perhaps I was trying to run away from the hurt. Same idea as Don mentioned. Blessings. lance
Back to top
  
 
IP Logged
 
George
CH.com Moderator
CH.com Alumnus
*****
Offline


Black-Billed Magpie


Posts: 8126
Boise, Idaho USA
Gender: male
Re: Disagree with the need to move a lot.
Reply #18 - Jul 22nd, 2012 at 2:03am
 
It depends.  Sometimes I can simply sit and rock and make pathetic little noises.  At other times, I've been known to go walkabout.

During my last cycle, I had one of the hits in an unfamiliar space, and wandered around banging into things.  Broke the middle toe on my right foot.  Didn't even feel it at the time.  It would probably not be a good thing to get hit when I'm out in the boonies somewhere, because I don't pay any particular attention to where I'm going.  I can't say that's ever happened, for whatever reason.  Probably a good thing.

Best,

George

Back to top
  

"Whoever loveth me, loveth my hound."  (Thomas More, author of "Utopia", and Chancellor of England.  1477-1535)
WWW George jacox6820 7165032563  
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print

DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!