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tsayswhys_sister
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how do i help her?
« on: Aug 31st, 2003, 6:15pm »
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hi there everyone...  
so here i am now in clusterheadache mission from hell..
my sister who also is a visitor to this site has been suffering for a number of years... misdiagnosed with migraines for years... researched on her own and found this site (i think when she felt she had no-one to turn to) so here is where i feel like such a failure. although i have always been supportive and tried to help her during her cycles.. i am now ready to try anything to ease her pain.. i work in an emerg. dept. and am trying to find any doctor, or nurse who suffers from this and find out ways to treat it .. i am having no luck at all..
we have learned more from this site than from the f.d. who is so reluctant to listen to her . i asked her the other day after reading all the messages in your board (what do u want us to do for u when your having a h/a?) she is not really sure i think she does need us to sit beside her not say a word but just be there.. i also feel that because she has been suffering for 4 years that she feels guilty for asking us to do this.. any suggestions on how to help her cope through them??
she is going to a neurologist soon (we hope) for suggestions but we are going to try to get our family dr. to order o2 in the home and try the injections ...thanks for listening... t if you rread this i love you so much
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Re: how do i help her?
« Reply #1 on: Aug 31st, 2003, 6:50pm »
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you are helping already!  it's really difficult for a person to explain how they are feeling when no one seems to "get it".......stay close by, help her to get proper diagnosis and on track for treatment.  Most often we don't need a lot of dialogue but just a hand to hold in understanding and support....yur doing great - stay the course and well wishes!
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Cooked Brain
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Re: how do i help her?
« Reply #2 on: Aug 31st, 2003, 7:02pm »
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hi there SIS Smiley
 
being there for her is the best thing you can do. If she likes you to be in the room and you can stand that, then of course do so... personally I want to be left completely alone when i get hit, cant stand a loved one to see me like that  and feel so helpless about it. Still if she takes comfort in you being there, try go hold her hand or head... get her some frozen peas in a towell for in the neck. For a simple, quick and cheap try-out read on the medications boardabout vicks inhalor.
 
your support is just great as it is, thank you for being there for her!
 
hope the visit to the neuro brings god things for you, be well and keep posting.
 
pfdan
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135447360 135447360   mondocharlie   mondocharlie
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Re: how do i help her?
« Reply #3 on: Aug 31st, 2003, 10:22pm »
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Welcome to the board.
 
The best thing to do is to ask her when she's not having one. For many of us, myself included, being absolutely alone and by ones self is common. For me, I wanted to see no one, be in my dark kitchen and cool. I also wanted dead silence.  
 
Everyone will have his own thing. It's great that you are trying to help. It means a lot to her and others here.
 
Stick around and let us know how it goes.
 
Charlie
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Ree
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Re: how do i help her?
« Reply #4 on: Sep 1st, 2003, 9:16am »
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You are a wonderful sister... As I am typing this I am realizing I have been so deep in the way you are feeling. supporting my husband and dealing with my own stuff that...  I haven't been able to support others lately...
Keep on trying to find a doctor that will listen... Look in the directories for a headache clinic near you or call one in another state and ask for help... there is a wonderful article in the Oprah magazine this month about a cluster sufferer and what she is doing to care for herself.... Your sister is lucky to have you... good luck Ree
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Re: how do i help her?
« Reply #5 on: Sep 1st, 2003, 4:39pm »
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Message to Ree - and other supporters run off their feet:
 
If you support your clusterhead, and try to run the household you have a 48 hour job in 24 hours.  and now you want to spuuport others as well?
If you take no time for yourself, you might squeeze in a few hours of support for others...
 
Where does that leave you?
 
A supporter is a precious person and should not waste themselves.
 
End of message
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Re: how do i help her?
« Reply #6 on: Sep 2nd, 2003, 6:05am »
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Yeah really Ree when you get some free time (if ever)  Use it for YOU!!!!
 
And tsaywhys SIS you are wonderful just for looking into trying to help you sister.  That is much more than anyone in my family does and probably many othe rppl's families too.  I think the biggest help for me would be just if my hubby held my hand just part of the time during an attack, cause i just feel so awfully alone when I get hit.
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godsjoy
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Re: how do i help her?
« Reply #7 on: Sep 2nd, 2003, 7:23am »
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Wonderful she has you for support.....No doubt she feels guilty.....we always feel guilty when these terrible CHs mess up our lives and those around us.....My husband just reminds me that its OK and we can and will get through this one.....and it doesn't last forever.....and we CAN DO this......
 
Its important for him to do his routine.....We used to go to the gym together....I can't really work out during my cycle (triggers a big bad Cluster)....but I encourage him to continue his routine and I will go when I can....
 
Bless you....Help her find a good Dr.....and encourage her to keep trying till she gets the right combination of O2 and meds......
 
Bless you,
Karen
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Re: how do i help her?
« Reply #8 on: Sep 2nd, 2003, 12:11pm »
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  good 4 u sis,alot of us wish 4 support like yours,,,,,stik with her,uuuuu try n stay on top of drs 4 her if u can,alot of us loose focus after a while,as far as drs n meds,that itself would b a great help,sometimes ull hafta prod n poke,but thats what itll take,,hang in there,were thinkin of u guys,were here.....litlgriz
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