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Topic: good place to start (Read 272 times) |
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Jack_of_Diamonds
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good place to start
« on: May 30th, 2006, 4:59am » |
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Hi, my name is Kyle
i've been going through headaches for over 3 years now. they've been varying in size and level but always there. in that time period i've visited the Children's Hospital of Milwaukee (the nerologists know me by name still) since it started when i was 14, got pulled out of school for the longest period of time known of (7 weeks streight, don't ask how my grades were influenced), gone to a real hospitol (recieved multiple spinal taps...i don't recomend it), and finaly went to the Mayo facilities in Minasota (love my parents, they piss away so much money for me).
after all of that (that was only a year), i was left with no help and a diagnosis that means nothing...."constant and percistant migrane type headaches of unknown origins"
those words still haunt me, and i've memorised and stated them so often and it still hurts.
i'm just trying to find people who can understand, and maybe some i can talk to when my insomnia hits
thanks for listening,
-Kyle
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LeLimey
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Re: good place to start
« Reply #1 on: May 30th, 2006, 6:18am » |
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Hi Kyle,
Its nice to meet you although I wish it was because someone as young as you wasn't in such horrible pain.
Have Clusters been suggested to you or are you doing your own research?
Can you describe your pain for us? where it is, how long it lasts, what its like.. how often it returns etc?
We'll do our best to help you.
What meds have you tried and what works would be good too.. I can't promise anything, I hope it isnt CH but I hope at the very least we can give you some pointers and support.
One last thing, I'm a parent. I have a son with CH as well as having it myself and your parents don't see it as "pissing money away" trying to get you treated.. they love the ground you walk on and would do anything to help you. You're their son. There is nothing more important to them than your health and happiness.
We'll do our best to help you AND them okay? 
Helen
BTW for everyone else reading this.. this kid has already jumped into the topiramate thread on the meds board to try and help. He's come looking for help and he's prepared to offer it too.. he's worth all the effort we can give!
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| « Last Edit: May 30th, 2006, 6:21am by LeLimey » |
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nani
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Re: good place to start
« Reply #2 on: May 30th, 2006, 9:35am » |
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Hi Kyle. Welcome. Please do tell us more about your symptoms. It's not unusual for us to be misdiagnosed for a long time, and we can help you. I wanted to jump in and mention 2 things to you. First, when you have to leave school for a period of time, there should be a way for you to keep up. If it's a short time, your parents can arrange for you to do much of your work at home. If it's for a long time, your school district can provide homebound schooling.
Second, if it turns out you do suffer from CH, we are having a convention in Milwaukee in July. I don't know how far you are from Milwaukee, but it would be worth your while (and your parent's) to come. There is more info on it on the Milwaukee 2006 board.
pain free wishes to you, nani
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Redd
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Re: good place to start
« Reply #3 on: May 30th, 2006, 10:22am » |
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Port Washington is VERY close to Milwaukee, Nani. It's very near West Bend/Cedarburg area.
Please take the quiz over there to the left and get back to us. I'd be more than happy to talk with you and/or your parents RE: the convention and other matters concerning your situation and help just as much as I can.
Let me know, and I'll be happy to to PM you my contact information to share with your parents.
Pegg
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I saw an act of faith today. A man was on his knees, not in a pew in a Church, but in a garden planting seeds. ~~Unknown
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Jack_of_Diamonds
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Ignorance is bliss
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Re: good place to start
« Reply #4 on: May 30th, 2006, 8:14pm » |
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alright, the nitty gritty
my pain hits at random intervals, ranging from 3 to 6 (by your board) and i have taken the cluster quiz with the only items i wans't with the classic CH charicteristics is in how i recieve them and deal with them...trying to open the link in a new window but it isn't working too well. the symptoms are a little off of what you are useto. they are concentrated in my temple region and can have varying feelings of being struck by rubber mallets to a rusty nail getting driven in, but i have noticed that i get it the worst when the weather fronts are about to hit (2-4 days away from a front pushing through)
CH was actualy given to me as an option by a second opinion from a doctor that was rebuttling a previous diagnosis (psudo tumor)
I was actualy planning on going to the get together in Milwaukee, but was wonderin if it was alright if i just commuted since it is about a half hour drive from where i live, or an hour if the Marquete is still shredded up as much as it is currently
"and that's all I've got to say about that"
thanks for listening,
-Kyle
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nani
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Re: good place to start
« Reply #5 on: May 31st, 2006, 12:20am » |
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on May 30th, 2006, 8:14pm, Jack_of_Diamonds wrote:| was wonderin if it was alright if i just commuted since it is about a half hour drive from where i live, |
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That would be just fine, Kyle. My CH was not typical in the early years. My very first episode (at age 16) was classic, but it was another 20-something years until they were finally diagnosed. One thing that we're learning is that everyone is different. I'm looking forward to meeting you. pain free wishes, nani
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LeLimey
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Re: good place to start
« Reply #6 on: May 31st, 2006, 4:07am » |
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I'm looking forward to meeting you and your parents too
Helen
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Sandy_C
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Re: good place to start
« Reply #7 on: May 31st, 2006, 1:19pm » |
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Hi Kyle, and welcome. I wholeheartedly hope you don't have CH, but, you've come to a great place to get information. The folks on these boards have a combined knowledge and experience of CH, and other headache types that can't be found anywhere.
I'm looking forward to meeting you and your parents in Milwaukee. This will be my first CH convention too, so we can all learn together.
Sandy
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Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
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