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   Looking for support myself!
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   Author  Topic: Looking for support myself!  (Read 1468 times)
Carolyne
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Looking for support myself!
« on: Nov 19th, 2007, 8:56am »
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Hi to all,
 
I first got in touch with site some 5 years ago which was really helpful - but at the time my daughter was subsequently diagnosed with Ophthalmoplegic Migraine. Since then the episodes have become more consistent with CH - she has had 4 attacks over the last 2 years - always in March and October.
 
Due to the intense pain she suffers we have been using morphine during the acute stage but following a recent admission to hospital her neurologist has put her on a different NSAID - this seems to be effective but obviously takes 20mins to have affect if a "fresh" headache suddenly comes on.
 
At the onset of her latest attack she was suicidal and I was terrified for her safety, we saw a different neurologist who said that everything was consistent with CH and they believe that she has CH on top of the ophthalmoplegic migraine.
 
She came home from hospital 4 weeks ago but had not yet managed to attend school full time and again this morning I received a call to say could I collect her.
 
I feel as though we have got medication and support for her reasonably under control - but I am at the end of my tether with the worry and concern as to how this will impact on her life long term as she is now also suffering with depression.
 
I'm trying really hard to do all the right things to care for her, but I am also having to deal with my two other childrens anxiety from having witnessing her when she reached rock bottom.  
 
I would really like to to talk to another mum who is supporting a child who not only understands the complete feeling of hopelessness that you cannot take this pain away from your child,  but also the effect it has on the whole family.  
 
Carolyne
 
 
 
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LeLimey
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Re: Looking for support myself!
« Reply #1 on: Nov 19th, 2007, 10:12am »
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on Nov 19th, 2007, 8:56am, Carolyne wrote:
Hi to all,
I would really like to to talk to another mum who is supporting a child who not only understands the complete feeling of hopelessness that you cannot take this pain away from your child,  but also the effect it has on the whole family.  
 
Carolyne
 

 
That would be me Carolyne.. I'm Helen and I have a son who has CH, he's 6 now and was diagnosed at the age of 3. If you check your pm's (top right) I'm sending you my phone number - feel free to call anytime. Sometimes thats a whole lot easier than trying to sit and type it out on here isn't it?  
 
I'll help in any way I can I promise
 
(((HUGS)))
 
Helen
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cash5542
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Re: Looking for support myself!
« Reply #2 on: Nov 19th, 2007, 8:28pm »
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I am a mom of a 22 yr old daughter who has CH. I'm not sure how old your daughter is but Lisa (my daughter ) and I would love to help if we could. I am also a teacher and can empathize the school issues as well. Lisa has been hospitalized several times last year and it sounds like we have had similar circumstances. PM me or write back. I hope I can help!
 
Charlotte
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Re: Looking for support myself!
« Reply #3 on: Jan 22nd, 2008, 3:43am »
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i know this is an old post but i feel i need to post a reply. i have been a episodic sufferer since i was 10. since back then we didn't have the internet let alone this board we were desperate and clueless. my mother has always held a good pokerface when my head is on fire. my wife doesn' do so well but she tries.  i don't believe that those heavy painkillers are the answer. that is alot of drugs for a young person. i have been doing well with o2 and a few herbs and change of diet.  feel free to send me a message if there is anything i can do to help, or if your having a rough time coping.
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