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        Supporter's Corner >> Supporter's Corner >> Hello! new here and need advice please
        
(Message started by: bicounette on Nov 17^th, 2004, 6:58am)

Title: Hello! new here and need advice please
Post by bicounette on Nov 17^th, 2004, 6:58am

First I would like to say hello to everyone. I am searchng the net to learn about clsters because my boyfriend has been diagnosed as having them. I never knew that the pain would be so severe but I have witnessed my bf going through several attacks. Basically I would like to know what I can do to thelp because I feel so helpless watching him suffer. I wish I could do something to help him. He doesn't want me to masage his neck. He takes an ce pack and ties it around his head to tightly that it loks like he is going to crush his skull. He bangs his head wth his fist.He cant sit still, he talks about suicide if they come back the way they were a year ago. He says that these now are just the beginning. He has one every couple of days but he says that they are going to come more often and more painful. The talk about suicide scares the hell out of me. He takes prednisone when the pain starts. Sorry if so jumbled but I dont know what to do, what are some things that can help? what can I do> do I just sit back and watch him suffer? thanks in advance for any advice.

Title: Re: Hello! new here and need advice please
Post by MOMO3 on Nov 17^th, 2004, 10:22pm

Hi I am sorry to hear about your boyfriend. My brother has these headaches and has been chronic for 10 years. The only thing I can tell you is from what I've read everyone is different, my brother doesn't really like to be touched during a "bad" headache, but he likes to know you are there with him and he isn't "alone." I would ask your boyfriend how you can best help him during an attack. Is there something you can get him? His meds? ice? My brother needs Pepsi and kleenex during an attack and as long as he has those he can make it through. Has your boyfriend tried any abortive meds, oxygen, etc? Its good you are there for him, I know its very scary, but you need to tell him there is hope.

From another caring supporter - Michelle :)

Title: Re: Hello! new here and need advice please
Post by firebrix on Nov 18^th, 2004, 4:12pm

Welcome bicounette.
Sorry to hear you and your bf are having to deal with this, but you CAN help! There is heaps you can do, but getting informed and doing some reading here is a good place to start. The more we know, the better we can help.
Just imagine what it's like for your bf. He doesn't WANT you to see him agonised. He'd rather maintain his dignity and save you from having to see what he suffers. Not all CHers are the same and we must remember that we are all different, and so are our needs. Ask him what his are.

Why don't you ask him what he'd like you to do? Form a plan together for when he's getting hit? Maybe, as MOM03 suggests he would like you to get the ice pack, tissues,make a coffee - whatever. Just do as he asks; don't question him and do not panic! Supporters have to be really strong, and stay calm as our anguish just makes most Chers feel worse. If he wants you to leave him alone, well, it isn't much to ask and we should comply. After all, in less than an hour, he will be back to his usual self and life goes ON! I am sure if you are calm and discuss your "how to help plan" with him at a peaceful time you will be able to work out the best ways to help.
Sometimes we have to advocate for our CHers. Sometimes doctors give bad treatments, bad attitudes and make things worse. If we're informed about meds, alternative therapies and how to cope, we can help a lot. Empower yourself with knowledge and seek advice from other CHers and their supporters. I'm happy to help any time - just IM me.
Oxygen therapy is effective for many sufferers. There's a button to the left of your screen that will tell you all about it. It's cheap, mostly effective and will do no harm if used correctly. Has he seen a neuro? Maybe you could ask if he needs an appointment, and then make it for him? Neuros can prescribe Imitrex injections (sometimes called Imigran) and when the pain is just too bad, one shot will kill the ha. in about 6-15 mins. This med should not be over-used however as some suspect it can cause rebounds.
Try to stay positive and strong. Don't let it take you both to that sad place. Be ready to laugh when he wants to and have fun between the hits. Be his inspiration and strength and you'll be helping him more than you know.

Read all you can on this site. Use the search facility to find answers. Make friends with other supporters. Give helping him your best shot! I'm here for you, any time!
Wishing you happier days
firebrix