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   Author  Topic: Mom of a Clusterhead :(  (Read 2299 times)
Margi
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Mom of a Clusterhead :(
« on: Aug 22nd, 2006, 3:22pm »
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I copied this over from the other board....
 
username:  di.b
 
 
I love My Daughter
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Hi, we are new at this also. I say  we because I'm writing in reference to my daughter. She's just got done with an attack for now she's 17 year's old and has recently within the last few day's been released from a 5 day stay in the hospital where FINALLY has been accuratly been digagnosed unfortunattly with cluster headaches with migraine symptoms. At first the doctor's was expecting an anurism. I have swallowed myself up in research on this what I've seen described from a lot of messages as the devil. She is afraid to to anywhere and the early part of the day because this is when most of her attacks happen.  She is now starting to have panic attacks when she feel's it comming on.  She was having them so bad that the introveinious drugs and the strongest there is wasn't fazing them. I know they say this is a rare disorder and expecially in women my less a 17 year old girl and most doctors and even nurses at the hospital thought I was just an overreacting, overexaggerating, overprotecting mother until they wittnessed the attacks themselves. And of all the frustration, anger, fear, etc. that we felt from  their reaction or I must say non-reaction till it was to late, is that maybe if more medical field people see it, this disorder may become less rare and unbelievable to them and they might start treating it more urgently than they do for all clusterheads. I'm so glad I found this family because now my daughter can get on here and see she's not alone and besides her family and neurologist believes her. I pray for her so much that I've asked God to give it to me because I see how much pain she is in and I have to find it so deep down to stay in control of my own sanity for her own sanity because I know she need's to find some safe place and I know right now she only find's it in mom so please also help me pray for strength for my daughter because I love her more than life itself and seeing the fear in her eye's and to be so young and having to experience that kind of fear makes me feel so helpless that it makes me so sick to anger and so many other emotions that I don't want her to see.  Thanks for listening and you all are also in my prayer's.   Diana
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Re: Mom of a Clusterhead :(
« Reply #1 on: Aug 22nd, 2006, 4:44pm »
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Your Daughter is not alone anyore. None of us are. Get her here and pull up a chair yourself. We love our supporters too.  
Matt
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Re: Mom of a Clusterhead :(
« Reply #2 on: Aug 22nd, 2006, 5:07pm »
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Hello Di
I couldn't be sorrier you've had to come and find us, as both a sufferer myself and the mother of a kid with CH I know exactly where both you and your daughter are.
What meds has your daughter been given to date and at what dosage? Has she been able to try high flow oxygen at all?
We can help, we will help. You're not on your own I promise
thinking of you both
Helen
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di.b
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Re: Mom of a Clusterhead :(
« Reply #3 on: Aug 27th, 2006, 4:35pm »
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Thank you for your concerns and sharing your stories my daughter is on steroids, demerol, depakote,cefuroxime,promethazine,cumbornox. As for the oxeygen their supposed to deliver the tank Monday. The last 2 day's she has been headache free and is doing pretty good hope she'll get to go back to school after her nuerologist appointment tomorrow. This is her senoir year and I hope she does'nt miss much more of it. I'll keep praying for your child because I know it's a terrible thought of them living the rest of their lives this way.  
 
God Bless
Di.[color=Pink][/color]
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Re: Mom of a Clusterhead :(
« Reply #4 on: Aug 27th, 2006, 4:39pm »
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Di if there is anything we can do to help or support you please please please just say okay?  
I'll help you all I can
thinking of YOU!
Helen xxx
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Re: Mom of a Clusterhead :(
« Reply #5 on: Aug 28th, 2006, 4:00am »
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i know it is hard butplease try not to let her panick....
this only seem's to give the beast more strength.
some deep breath's with oxygen .good luck
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Re: Mom of a Clusterhead :(
« Reply #6 on: Aug 28th, 2006, 12:28pm »
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hug
 
Anything you need just ask!
We are here day and night and you may find someone who is literally around the corner so just inquire.
 
I had these since college but I've had debilitating headaches my whole life. I went un/misdiagnosed for over a decade.
At least you guys have an answer now and can seek appropriate treatment.
 
stay positive and pound that into her head.
She must stay positive, strong and know they will pass.
 
It will not interfere with her life!!!!!!!!!!!!! (because I say so Kiss)
 
Many hugs!
 
Eric
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Re: Mom of a Clusterhead :(
« Reply #7 on: Aug 28th, 2006, 7:15pm »
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Hey guy's thank's again.  Could anyone tell me what else to do as far as posting a picture of my daughter? I put the www. address in the box in the profile but it doesn't tell me how to upload.  
 
Di.
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Re: Mom of a Clusterhead :(
« Reply #8 on: Aug 29th, 2006, 12:30am »
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Hey Di... nice to meet you... I am ree and I have a cluster head hubby and my daughter is questionable... she showed signs at a younger age but hasnt had one in about 3 years if that is what it was at that time.  Problem being my hubby's remissions can be 3 years.    I hope you hang around and get the information you need.  Gods love to you and prayers for your precious daughter......Ree
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di.b
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Re: Mom of a Clusterhead :(
« Reply #9 on: Aug 29th, 2006, 7:47pm »
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Hey Ree, it's nice to meet you too. Today my daughter Heather had her appointment with the nuerologist it went well she's now 5-day's headache free and I also have read of people going year's free and I hope that's the case of your child to most of all that none at all ever again thank's again for your prayer's and I'll be praying for your husband and child also.  God Bless.
 
Di.
P:S can anyone tell me how to upload a picture of Heather under the profile I've not had any luck.
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Re: Mom of a Clusterhead :(
« Reply #10 on: Aug 30th, 2006, 4:43pm »
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Hi Di,
the pic needs to have a url so you need to upload it to photobucket or some such similar site. Then just copy and paste the url into the box on your profile where it says you have your own pic to use.
I know I probably haven't explained that very well so if it isn't clear just shout okay?
Helen
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Re: Mom of a Clusterhead :(
« Reply #11 on: Aug 30th, 2006, 4:51pm »
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on Aug 29th, 2006, 7:47pm, di.b wrote:

P:S can anyone tell me how to upload a picture of Heather under the profile I've not had any luck.

 
Try this, just use the slide bars to read it all.
 
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=profiletip;a ction=display;num=1100187570
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Re: Mom of a Clusterhead :(
« Reply #12 on: Aug 31st, 2006, 8:46am »
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Hey Diana im going to leave the medication and most of the advice to the adults here but im 16 and ive had a really rough battle with the clusterheadaches and school and life period. i know exactly what shes been oging through and have been looking for someone my age for a long time now. if she ever needs someone to talk to about it please sit here and i would be glad to help her in  any way i can. were all in this together and together we get through it
 
Barak
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di.b
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Re: Mom of a Clusterhead :(
« Reply #13 on: Sep 4th, 2006, 9:27pm »
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[img][/http://myspace-009.vo.llnwd.net/01099/90/07/1099017009_l.jpgimg]
Thank you for the directions
 
Di
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di.b
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Re: Mom of a Clusterhead :(
« Reply #14 on: Sep 4th, 2006, 11:13pm »
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Thank you for thr advice on posting our picture.
 
Di.
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Re: Mom of a Clusterhead :(
« Reply #15 on: Aug 25th, 2007, 10:49pm »
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Diana,
 
I am hugely sorry to hear that your daughter is going through this.  I started getting these at 14 yrs old, and believe me, I understand how hard it is to get doctors to get it through their thick heads that a teenage girl can have clusters.  I'm 33 now, and from my experience, I would tell you you are already doing the best things any Mom could do--getting her medical help, getting her O2 (just make sure she had the right O2 flow and mask) and just letting her know you love her.  With those 3 things in place, she will be able to have a good life.  Star
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