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Topic: Clusters in the neighborhood (Read 404 times) |
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kimh
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Clusters in the neighborhood
« on: Jan 1st, 2005, 2:26pm » |
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A while back i posted about a friend of my daughter's (Emily) who was pulled out of school for home schooling due to "severe headaches". She sufferred a bout of headaches that lasted for about 3 months. She has recently been re-admitted to school, but not without some red tape from school adminisrators and significant stress and pressure placed on the family.
We got to know Emily because my daughter Chelsea and her became friends at school, plus they both joined a tennis program once a week and i would always see Emily's mom there while the kids were playing tennis. We were always polite but not particularly close. When i heard about Emily's troubles, i spoke to her mom and it was THEN that we really talked and got to know one another.
Emily's mom is a graduate of Harvard and very brite and Emily is an athlete and the type of kid I WAS. She is very competitive and excells at school and is 14. Second bout with headaches -
I went to their house to pik up Chelsea one nite and talked to the mom for over an hour. Let me tell you Brian was working so i had the other kids with me, but we talked around the kiddos chaos and the mom was MESMERIZED by what i shared with her and so happy to speak with someone who did not make her feel like an alien from outer space. It started to rain outside and i wanted to get the kids in the car and so i shook her hand and told her if she ever needed to talk to not be shy about calling me and i'd help her however i could. This reserved lady smiled so hard and was so at ease with me that she was making jokes and she did not let me go without grabbing me and giving me a big fat hug  She was simply a mom who found a level of understanding and a measure of direction that is still a challenge for patients new with this disorder***
See how easy it is?
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Kirk
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Re: Clusters in the neighborhood
« Reply #1 on: Jan 1st, 2005, 2:47pm » |
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Kewl. 
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Charlie
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Re: Clusters in the neighborhood
« Reply #2 on: Jan 1st, 2005, 3:38pm » |
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Way cool Kim.
I knew you had it in you. It's a hell of good feeling too.
Charlie
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nani
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Re: Clusters in the neighborhood
« Reply #3 on: Jan 1st, 2005, 3:52pm » |
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Allright kim!!! You are an awesome woman, girlfriend...don't ever, ever doubt that for a moment! Your reaching out was probably the nicest thing anyone ever did for that mom. go, girl.
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kimh
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Re: Clusters in the neighborhood
« Reply #4 on: Jan 1st, 2005, 4:20pm » |
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It is always a great feeling to be able to connect with folks and help out. And i don't want this subject to turn into me patting myself on the head. It's nice to be appreciated, but the REAL point i wanted to bring to attention is how Clusters affect first the sufferer, then the supporter(s) and then the outside world......and how CRITICAL it is for early detection and intervention.
Emily went through hell with the acutal pain. Her mom went through the immediate filter of that pain in that she became the buffer between her daughter and "the system" her daughter was currently expected to function within. In the end the ENTIRE family came very close to falling into an abyss of a post traumatic stress disorder in that the system only contributed to the dysfunction rather that offer any type of positive direction for Emily OR her immediate family. Everyone got weaker.
When a young girl today STILL does not receive a fast and accurate diagnosis she is put through detriment that with long term ramifications. If that same young girl does not have a strong and resilient support system, where does this lead???Lots of unnecessary insult to injury 
Emily is under the care of a noted neurologist who gave the family the information that Clusters only affect men in their early 20-s. I cannot tell you how angry i got when i heard this. It is simply FALSE!!!!! WHY WHY WHY!!!!
Something wrong there
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nani
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Re: Clusters in the neighborhood
« Reply #5 on: Jan 1st, 2005, 4:30pm » |
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Yep...there is. Can you imagine how much longer this kid might have to go through this is you weren't there to help point them in the right direction?
Quote:| And i don't want this subject to turn into me patting myself on the head. |
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OK. Fair enough. I'll do it. *pat pat*
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Jeepgun
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Re: Clusters in the neighborhood
« Reply #6 on: Jan 1st, 2005, 5:27pm » |
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Fantastic. Good job on taking the steps to get involved, help out, and for being a comfort to the mother and daughter.
I've never met a good neurologist. It must be par for the course. How a neurologist who is a headache specialist and can be so very educated, and still be such a sh*thead is just beyond me... *sigh* (shaking my head in disappointment and disgust)
-Frank
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| « Last Edit: Jan 1st, 2005, 5:27pm by Jeepgun » |
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kimh
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Re: Clusters in the neighborhood
« Reply #7 on: Jan 1st, 2005, 5:56pm » |
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I think of how long it took. How many "headache speacialists". I think of the teeny words of comfort in the mayo clinic book that i clung to. You'd think it would be better now, but IT IS NOT Kids with headahces that FIT are being given the same SHIT and being told the SAME shit that I was told 35 years ago. UNACCEPTABLE.
I'm going to say this: when a KID gets clusters they roll better than an adult. All a kid wants to do is be a kid. Bad headaches wait until they can't take it any more. THEN they tell their parents about it. Their parent s take them to the doctor and the doctor runs a bunch of tests that all come out normal and the kid ultimately bears the burden until he/she is adult enough to NOT accept that. (I know that clusters begin earlier than what is documented and understood by books and docs)
I think we've been barking up the wrong tree for way too long and have to look back over our shoulders to find out where we should be BEGINNING.
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| « Last Edit: Jan 1st, 2005, 5:57pm by kimh » |
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BarbaraD
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Re: Clusters in the neighborhood
« Reply #8 on: Jan 1st, 2005, 10:37pm » |
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Jeep you need to come to Texas. After years of searching, about 10 years ago I found a great neurologist. He has migrains and says he's glad to have them instead of Clusters. He keeps up on the latest in headache studies, knows where ch.com is and is open to anything new. I had refused to see another "specialist" when my doc put me in the hospital and snuck Dr. Hamer in on me. I'm forever thankful for that. But I agree with you on MOST neurologist. Hamer is the ONLY one I've found who's worth a damn and I've been to most of them.
kimh I don't know where we start to educate docs. I've talked to parents also about their kids headaches. Some were migraines - a couple were clusters. We did get them help. But I live in a small area and everyone knows everything about everyone else, so it's easier to get help one on one.
We could start by writing articles (or interviews with a reporter) about them and getting those in the newspapers. A few more big names get hit and we might get something done, but I wouldn't count on that -- they don't respond to us very well.
Keep on thinking and we may come up with a way to get the word out that men are NOT the only ones who get CH.
Hugs BD
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Sean_C
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Re: Clusters in the neighborhood
« Reply #9 on: Jan 1st, 2005, 11:08pm » |
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Bump.........I need some help here 
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Jonny
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Re: Clusters in the neighborhood
« Reply #10 on: Jan 1st, 2005, 11:12pm » |
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on Jan 1st, 2005, 11:08pm, Sean_C wrote:
Labotomy?
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