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soni
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Scared..
« on: May 30th, 2006, 7:27pm »
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Hello everyone, I am a 22 year old pharmacy student in Philadelphia who has just been diagnosed with having CHs.  Yesterday my headache made me unable to function efficiently causing me to go to the ER with a referral to the headache center.  I've had them for 6 days in a row now and most of the time it is managable, I have never taken any meds.  I'm afraid of how long these cycles will last and how often they will return. I don't even know what I'm asking from anyone on this board right now, sure I have questions but right now I think i just need some support.  My CH begin at 930AM everyday and end by 6, climax of pain is around 1100.  I have an Rx for Imitrex tabs shortterm until I get reevaluated.  Someone please respond, i've been reading your stories all day, i'm just looking for some good news.
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Redd
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Re: Scared..
« Reply #1 on: May 30th, 2006, 7:41pm »
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Good news is that your pain does not sound like CH to me, but I'm not a doctor.  Just a very experienced sufferer.  6 days and all 8 1/2 hour CH?  I certainly hope not.
 
There is a quiz over on the left.  Pease take that and then let us know what happens.
 
Also check out the comparison table to see what best fits your symptoms right here.
http://www.ouch-us.org/chgeneral/hacomptable.htm
 
We'll point you in the right directon.
 
 
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soni
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Re: Scared..
« Reply #2 on: May 30th, 2006, 7:51pm »
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ok I took the quiz and there are a lot of things such as being around people and light that doesn't bother me.  It also seems the headaches go away after dinner and for the first few hours of the morning.  When the headache was the worst yesterday i did have a runny nose and lacrimation.  Tuesday is my appointment with the headache center, the doctor told me if it was something more serious I wouldn't have relief at the same hours everyday no matter if I'm laying in bed or jogging.
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Re: Scared..
« Reply #3 on: May 30th, 2006, 8:03pm »
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CH attacks last from 15 minutes to 3 hours.  Not 8.5 hours.  Many doctors are ill informed of what CH really is.  The duration you speak of indicates to me something other than CH.  The meds most of use can be quite dangerous to be used for conditions other than CH, and most other conditions are more easily treated.  
 
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the doctor told me if it was something more serious I wouldn't have relief at the same hours everyday no matter if I'm laying in bed or jogging.

 
This tells me your Doctor knows very little about CH.  CH is THE most painful of the primary headache disorders.  It is VERY serious, though not life threatening.
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Re: Scared..
« Reply #4 on: May 31st, 2006, 11:09am »
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If you being seen at the headache clinic at Jefferson you are at one of the better places in the U.S.
 
Patience! It takes a time to get a good workup, try different Rx, adjust doses, etc.  
 
I would ask the doc about Imitrex injection (assuming he is holding to the Dx of cluster) because it works so much faster than the pill.
 
You might print this article out and use it to discuss your options with the doc.
 
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
   
http://www.brightok.net/~mnjday/chtherapy.pdf  
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Bob Johnson
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Re: Scared..
« Reply #5 on: May 31st, 2006, 1:40pm »
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I agree ... from what you've described, it doesn't sound like cluster headaches to me either.
 
Goodluck with your pain
 
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Mattrf
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Re: Scared..
« Reply #6 on: May 31st, 2006, 3:22pm »
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Soni
Well let me start by saying I was misdiagnosed two and a half years ago with CH and again back in December, I got so frustrated with nothing working that I went to a new doctor who specialized in headaches and he said what I had was not Clusters but something called SUNCT. Now SUNCT is more rare then CH but has a lot of the same characteristics, it comes in cycles and repeats on the same schedule just like CH’s do and is also localized to one side of the face typically around the eye just like CH but the difference is with SUNCT you have a constant bad headache nothing like a full hit of a CH but probably about a 5 or 6 on the kip scale and you get hit with spikes of ice pick like stabbing or burning in the eye that lasts seconds to maybe a couple minutes where a CH hit will last like 45 minutes or more.
SUNCT does not respond to any of the medications used for CH so if the Imitrex does not seem to work or Verapamil or any of the others then this may be what you have. I was put on Lamictal, I think that is how it is spelled, any way it is some bad stuff, if you have a bad reaction you have to beat feet to the ER they have had people die on this stuff, nice! Well the good news is it seems to be helping, I have been in this cycle since December and this past Sunday I actually felt good enough to work in my yard and clean out my garage, it dam near made me feel normal again, my pain was at a 1 or a 2 most of the day and that is by far the best I have felt in months. Well I hope I have helped in one way or the other, good luck to you and PF wishes.
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Matt
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There is no stronger a person then one who can deal with brain pain and still function.
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