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        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> Non-Dance Clusters?
        
(Message started by: dydsi on Jun 4^th, 2002, 12:21pm)

Title: Non-Dance Clusters?
Post by dydsi on Jun 4^th, 2002, 12:21pm

I'm new and curious. I've had clusters but are not familiar with the dance. These were dabilitating HA on left side. Hurt worse than when I riped off my big toe nail and that was a screamer!!! Q: Are my HA clusters, and my pain threshhold just higher? Q2: Could clusters at 10, feel like a say 6-8, if a worst one comes along? And, if so, is that what shadows are?

Title: Re: Non-Dance Clusters?
Post by BobG on Jun 4^th, 2002, 12:33pm

The KIP scale is subjective to each individual. An 8 to one person may be a 6 to another.

Shadows are down in the 2 to 4 range. It's like the music in a horror movie. You hear it building and know something is about to happen but just don't know what, when or how intense. Shadows can build very quickly from 1 right up through the scale to a full blown attack in a matter if minutes or may just hang around at a 2 - 3 level for hours at a time.

A KIP 10 is a trip to the ER. That's as bad as you can stand it. A KIP 10+ is a .38 caliber and so long cruel world.

Title: Re: Non-Dance Clusters?
Post by Bob_P on Jun 4^th, 2002, 12:42pm

Don'y worry about the dance part. That phrase comes from some sufferers desire to be up and moving when one hits.

I never dance. I always sit in a chair, ice bag on head and neck and remain still.

Title: Re: Non-Dance Clusters?
Post by rick on Jun 4^th, 2002, 2:26pm

Me too. Holding still and relaxing (well, trying to anyway) is how I cope.

Title: Re: Non-Dance Clusters?
Post by Svenn on Jun 4^th, 2002, 5:29pm

Don'y worry about the dance part. That phrase comes from some sufferers desire to be up and moving when one hits.

I just hide from the other familymember in a chair with my oxygenmask and imitrex-shots until i get rellief.My wife wont daer to come near me under the battle against "General Cluster"

Svenn

Title: Re: Non-Dance Clusters?
Post by NotH20 on Jun 5^th, 2002, 8:43am

Hey dydsi.....it's great that you are curious - that way you can gain enough knowledge that will allow you to "assist" your docs in helping yourself. I offer the following answers:

#1 - I'm a little confused - you say that you've had clusters before, but then are asking if you have CH.....was this diagnosed by a doc???? Take the cluster quiz on the left hand side and see if you better understand. Everyone has a different threshold of pain and only you can say that you have a higher tolerance. I've been in labor before for 25 hours straight and I'll take that over a ch ANY day of the week!

#2 - I consider the shadows like a "rumble"....in my case they don't last long until I'm in a full blown ch. It's that little tap on your shoulder that says "hello - I'm here and I'm going to kick your butt for a while." The dance is the constant movement that most of us do when in the middle of a ch. We walk around, we pace, we rock, we mumble, we cry and even bang our heads at times.....and then we start it all over again. For some it's a distraction from the pain for a only a few moments - for some it's the only thing that keeps us sane through the attack.

I wish you luck w/ your pain - hopefully you will find the right med combo for some relief.

NotH20

Title: Re: Non-Dance Clusters?
Post by dydsi on Jun 5^th, 2002, 9:10am

noth20:

Doc says they sound like clusters. All I've read sounds familiar, the pain same time every day(around 2pm to about 7pm), one sided, dibilitating, shadows. Doc is also treating me for them. 2yrs with them before any one really had any ideas. Still confused(somewhat), they had me thinking it was all in my head for that time. I guess old habits die hard. I'll keep reading and hope all are PFDAN soon.

Thanks for more clarifacation.

David

Title: Re: Non-Dance Clusters?
Post by NotH20 on Jun 5^th, 2002, 9:45am

Hey David - sounds like maybe you need to see an new doctor....below is a link off the OUCH website of recommended docs in your state (WOW there are 4).....

http://www.clusterheadaches.org/doctors.htm

Maybe one of them will be more helpful from the get-go......

Surely sounds like the beast has tagged you - don't let it get you down - you are much stronger!

NotH20

Title: Re: Non-Dance Clusters?
Post by simpson1974 on Jun 5^th, 2002, 10:56am

My shadows have a personality all their own. One time, I'll have some shadows but not develop into a full-blown headache and I'll think, "Hey, my meds are kicking in!" Then the next time... BAM! Full blown headache very rapidly. Then the next time... it will build slowly... taking several minutes... and I'll think, "Oh, yeah... it's nothing..." and then BAM! Out of nowhere and I haven't used Imitrex yet and I'm suffering needlessly. I'll tell you... the beast is right... it's a living thing.

As for "The dance," I used to sit still with mine... until they got worse. I can if it's a fairly mild one, but I'm usually up pacing, banging my head, rocking back and forth... some kind of movement needed. Either that or I just lie down on top of the air conditioning vent. And then I move on to something else... then back and forth, back and forth to try something else that will work.

I think it's more like a wrestling match instead of a dance. Hardcore, flaming ladders and tables... possibly "arena engulfed in hellish" flames match...