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   My neice may have clusters.. like me
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   Author  Topic: My neice may have clusters.. like me  (Read 1157 times)
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My neice may have clusters.. like me
« on: Feb 13th, 2007, 7:44pm »
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I've been a cluster headache sufferer for over 8 years now -- I'm 37. It's been a very misunderstood and frustrating time, as nobody seems to understand it and labels you at whim a "faker," or "dramatic." So at most, when I have hospital visits or long attacks, I try my hardest to hide it -- as its possible.
Now, with over 2 years of my older sister's child having unexplainable pain and "not feeling good" -- missing weeks of school on end -- and just not being able to tell anyone what's wrong with her -- I'm beginning to think she may have what I have. And I guess I'm here wondering if this is even feasible? Does anyone know of a child as young as 7 having clusters since she was five years old?
She can't always localize, but it's becoming more and more apparent that it's her head. My sister is about to give up, as she's explored many different angles, diseases, psychologists, and seems to continue to doctors who tell her "there's nothing wrong with her; she's faking it." A mother just can't hear that or accept it when her daughter is daily, weekly, monthly in pain.  
She has some good days, but many bad days as well. There is no actual "cycle" that is dependable at this time.
I just want to know if this runs in the family and if so, is it possible for a child this young to be experiencing this?
Any advice on doctors in the Birmingham, AL area? Medications?
Thank you!!
Ami Manning -- --
MY sister's email is kelli Bath --
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Re: My neice may have clusters.. like me
« Reply #1 on: Feb 13th, 2007, 7:54pm »
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My own son has had CH since three and is now going through his 3rd cycle aged just five. Thankfully its rare in kids so please don't worry yet. First of all you need to keep a headache diary of all her headaches and what seems to help or aggravate.
You need a referral to a headache specialist neuro. I know she is little but unless there is a paediatric headache specialist near you then you are better off with an "adult" one. Headache Specialist is the key here as there are over 600 headache types and giving the wrong medication to someone based on an inaccurate diagnosis - kills.
For a list of doctors in your area and further help I would strongly recommend you contact the Family Services Team at OUCH US. Their services are available to the whole family, you, your sister, whoever is in need of support, education or a shoulder to cry on. It'll be the best thing you can ever do I promise.
Email them on and they can arrange to talk to you or talk by email or chat if that's what you prefer. They accomodate YOU and YOUR needs.
I hope this is of help, I too will call happily at any time (I know I'm in England but I have free international calls) if that would help too.
We will ALL help you in any way I promise
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