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dlinsenmann
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New and Scared.
« on: Nov 1st, 2007, 4:21pm » |
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Hi My name is Donna Im 18 and Ive been having CH for someodd 10-15 years. when i was in second grade they said it was migraines but now we know better.
Recently they have progressed to the point of Im having body spamism and they are starting to scare me. They arent sezieurs yet ( I think/hope) but does anyone else know anything about this? I go to the Neurologist tuesday so maybe he'll know.
Thanks for any thoughts.
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Brew
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Re: New and Scared.
« Reply #1 on: Nov 1st, 2007, 4:52pm » |
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I would hope the first thing the neuro does is order an MRI to rule out anything more sinister.
I've never heard of seizures accompanying CH. It doesn't mean anything that I haven't heard of it, though.
Please keep us posted. You might want to take the cluster quiz to the left. Good luck.
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dlinsenmann
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Re: New and Scared.
« Reply #2 on: Nov 1st, 2007, 4:57pm » |
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I did take the quiz first time i found the site. Which helped me at the doctors. I dont know if they are seizures but who knows. Ill keep yall updated.
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aloneuk
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Re: New and Scared.
« Reply #3 on: Nov 1st, 2007, 5:00pm » |
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like brew said you need an mri quick !
i have had seizures (not for about 4months now tho) but nothing to do with ch
I really hope the neuro can help you with this
please keep us up to date
good luck
ike
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Guiseppi
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Re: New and Scared.
« Reply #4 on: Nov 1st, 2007, 5:33pm » |
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Welcome to the board, sorry you're scared, that part sucks. Knowledge is your best weapon and your best ally against whatever it is that ails you.
Hopefully the neuro can get a good finger on what your problem is. To help him, keep a headache diary. The more detailed you make the diary, the better the chances of an accurate diagnosis the first time around. The critical stuff for your headache diary. Read the KIP scale on the left and get familiar with it. Then record when your headache starts, how fast it builds, how high is the peak, how long it stays at the peak and then how fast it leaves. Try not to be generic. Some people at first say the headache lasts for 3 days. When pressed for the details they say they get creamed for about 60-90 minutes, 2 times a day, the rest of the day it's just sore. That's a critical distinction for the diagnosis!
The more details you can provide the neuro the better. If it is CH, pull up a chair and make yourself comfy in yur new second home. Good luck either way.
Guiseppi
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Barry_T_Coles
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Re: New and Scared.
« Reply #5 on: Nov 1st, 2007, 5:59pm » |
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Hi Donna
Welcome to the nut hut but sad you need to be here.
As the others have said an MRI & keeping a diary is very important.
Can you describe the body spasms more clearly IE are they whole of body or restricted to a leg or arm, this is also important to the Nuro in defining a diagnosis.
Cheers for now
Barry
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dlinsenmann
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Re: New and Scared.
« Reply #6 on: Nov 1st, 2007, 6:03pm » |
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Its my entire body and its a jerking effect. They also coincide with the spikes of pain
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Barry_T_Coles
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Re: New and Scared.
« Reply #7 on: Nov 1st, 2007, 6:30pm » |
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on Nov 1st, 2007, 6:03pm, dlinsenmann wrote:| Its my entire body and its a jerking effect. They also coincide with the spikes of pain |
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Great, that’s the sort of description the Doc/Nuro is going to need in his/her diagnosis.
It sounds like restless limb syndrome another effect of a wonky hypothalamus, but I’m no doctor, just going on experience.
This link will take you to a document on RLS & gives you a very good description of RLS & how you should be describing the symptoms to the medical people.
http://www.wemove.org/webinar/100307/syllabus_100307.pdf
Cheers
Barry
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dlinsenmann
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Re: New and Scared.
« Reply #8 on: Nov 1st, 2007, 6:38pm » |
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but its not just my legs its my arms and my entire body even my head. I get no relief by the spazisms i jerk with the pain.
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| « Last Edit: Nov 1st, 2007, 6:40pm by dlinsenmann » |
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Barry_T_Coles
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Re: New and Scared.
« Reply #9 on: Nov 1st, 2007, 7:00pm » |
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Yep I understand what you’re saying; that document relates to restless leg syndrome, just one part of the condition.
I had and still have to a minor degree those symptoms where both my leg and arm would jerk relentlessly and not always in unison, this will make your whole body jerk & rattle around like you have the DT’s my Nuro describes the condition as Restless Limb Syndrome and as he states “ there is no such recognised condition in the medical field “ but he has seen it to many times in CH people not to recognise the condition.
Another condition that comes from a wonky hypothalamus is Exploding Head Syndrome & I certainly hope you don’t develop that, it’s not a lot of fun.
Cheers
Barry
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vietvet2tours
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Re: New and Scared.
« Reply #10 on: Nov 1st, 2007, 7:04pm » |
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on Nov 1st, 2007, 7:00pm, Barry_T_Coles wrote: Another condition that comes from a wonky hypothalamus is Exploding Head Syndrome & I certainly hope you don’t develop that, it’s not a lot of fun.
Cheers
Barry
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Rosybabe
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Re: New and Scared.
« Reply #11 on: Nov 1st, 2007, 8:15pm » |
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Hi Donna!
Welcome aboard!! I am sorry you are scared, I think all of us are scared when we know the pain is coming.
What are you taking for the pain? it will be good for you to take this information to your Neuro on your next visit...
http://www.plainboard.com/ch/chtherapy.pdf
If you need someone to talk, I am fairly close to you, I live in south Houston area. I will send you my info by PM ok?
Pain free wishes for you girl 
Rosy.
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Jonny
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Re: New and Scared.
« Reply #12 on: Nov 1st, 2007, 10:10pm » |
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Welcome, dlinsenmann.
Hopefully the Neurologist visit will give you a clue to whats happening.
Good luck, Sweetie!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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