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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Weird

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Weird (Read 1428 times)

Miranda

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Weird
Oct 25^th, 2009 at 5:48pm

I have had two cycles this year-(usually I only have one every two years). Every single episode I have had in the last 12 years has had most of the typical ch symptoms: behind my right eye, burning sensation, nose dripping, the most excruciating pain I have ever had in my life, every day 6-8 weeks then remission, etc. The only difference for me is that I prefer to stay still and light and noise does bother me.

The first cycle I had this year was different though-seemed more traditional in that I could not lay down because it hurt way more in that position. They also woke me up from my sleep every hour on the hour and did not occur except when tried to sleep.

I then (unexpectedly) had another cycle-which returned to the way I always had them...slightly more migraineish. These only occur during the day and do not wake me up in the middle of the night.

Has anyone else had changes in their clusters? I know usually you can't lay down, but does anyone else have clusters where they do lay down?

« Last Edit: Oct 25^th, 2009 at 5:49pm by Miranda »

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bejeeber

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Re: Weird
Reply #1 - Oct 25^th, 2009 at 8:39pm

I've layed down to ride out a CH before. I think it may have something to do with a person's nature, whether they are apt to be dancing or more reserved (??), and the Kip level can determine whether someone feels compelled to move about I guess.

Unlikely anyone is going to be laying still with a K10! Shocked

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Joni

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Re: Weird
Reply #2 - Oct 26^th, 2009 at 12:10am

I have never been able to lie down and if I am so tired I can't stay on my feet and have to sit, I rock back and forth. But...they can make weird changes and even though they have certain characteristics, everyone is a little different in how their headaches behave and how they react to them. I have a niece that goes back and forth between clusters and migraines. I also have a niece that use to have migraines and now has clusters. Personally, my clusters did not have a good pattern until I had had them for many years, although I didn't know it at the time. Hindsight is 20/20.

Joni

Experience: That most brutal of teachers. But you learn, my God do you learn. -C. S. Lewis

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Bob Johnson CH.com Alumnus Offline "Only the educated are free." -Epictetus Posts: 5965 Kennett Square, PA (USA) Gender:	Re: Weird Reply #3 - Oct 26^th, 2009 at 8:47am It's entirely common to have changes in pain location, degree, etc. which may continue for several years before settling down to a fairly stable pattern. Appears to have no clinical meaning/significance.
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Eddie Bitches CH.com Newbie Offline I Love CH.com! Posts: 4 Wolverhampton UK	Re: Weird Reply #4 - Oct 26^th, 2009 at 11:51am Hello, Miranda. I have had CHs for a number of years but only diagnosed in the last two or so. This present cluster, which seems to be petering out, has been different to others. I have had most hits in a day (6) but have also had the most pain-free days I can remember in a cluster so don't worry too much about changing patterns etc.
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Weird Reply #5 - Oct 28^th, 2009 at 1:46pm Hi Miranda, As a child, my HAs were all over the place. After a long remission, they were back with great regularity. Now they are all over the place once again. I never know what each day will bring. I hope you are PF very soon. Jeannie
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Tweeg CH.com Newbie Offline Wiie Posts: 22 Netherlands Gender:	Re: Weird Reply #6 - Oct 28^th, 2009 at 4:17pm I am a weird CH patient since i always prefer to lay down. Its the way i "handle" pain, of any kind.
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Broonor

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Re: Weird
Reply #7 - Oct 29^th, 2009 at 1:15am

Miranda, and all other clusterheads,

I believe from what I have read so far on this site and other academic research, each person will have a different reaction to the pain, this site refers to this as the "dance." I call it my routine, but for me personally, the "shadows" appear, and by the 3 or 4th shadow, I take my meds, lay down, and attempt to crush my hands through my skull. Right eye waters, Nasal passage on right side pressurizes, depressurizes, (like a sinus infection clearing) and the ensuing maddening pain. I usually writhe on the ground, putting as much pressure on the area around and behind my eye, and rotate to where I have located the pressure points. My hands will rotate and move around the skull and press as hard as humanly possible on my skull. I believe this gives me momentary distraction, however small and short in time, but a distraction none the less.

I may be off on my own meds, but I believe that those who, in their dance, hit or hurt themselves may be doing that to momentarily relieve them of the excruciating pain the clusters give us. That brief moment of a new sensation, whether its pressure or a blunt object smashing into our skull, gives us that .. that moment of reprieve, however brief it is, it is still a moment of escape where we feel that pain rather than the maddening cluster. I may be rambling, or reaching for stars here, but that is how I see our dancing... Dancing with the devil.

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