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Title: This Site is the Best! Post by MaureenG on Mar 31st, 2002, 7:41pm I met my boyfriend, Steve, about 1 1/2 yrs ago, about 4 yrs after he was diagnosed with migraines. Although I have other family members who get migraines, I wanted to research as much as possible, since I am now so much closer to the condition than before. It was during my migraine research that I found out about cluster headaches. I was shocked - he's practically a text-book case - always on the right side of his head, striking between 10pm and midnight, runny nose, sweating. It's really sad that so many doctors attribute all recurring headaches to migraines. No wonder so many suffer for years without proper diagnosis and medications. I found this sight about a year ago, and we both read all the information, but never read the message boards. Right now he is in his worst cycle ever - 4 trips to the ER in two weeks - so I came back to the site that I had neglected for months and finally registered for the message board. I started telling him about some of the stories I had read, and the next day he was scanning the message boards. He was amazed to read "his" life told by so many other people. Usually he feels so alone because no one understands. It's wonderful to know that others can relate to the horror and frustration, and the supporter site is a great addition. No one else can comprehend how heart-breaking it is to watch someone you love suffer so much, knowing there's nothing you can do. So I just hold his hand, offer to get his meds or a hot towel, and sit quietly in between. I spent Easter dinner alone with my family since Steve was afraid to leave the house because he has had so many episodes lately. As I sit here, he is sleeping and has been since before I got home three hours ago (not much sleep at night lately). It's a Catch-22 - irregular sleeping patterns don't help the clusters, but what else can you do when they keep you up all night?! Sorry to ramble so long, but it sure felt good to get all this off my chest. Thanks to all for being here! |
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Title: Re: This Site is the Best! Post by Donna on Mar 31st, 2002, 10:00pm Hello Maureen.......... This is really a one of a kind board, isn't it? My adult son was having a cycle and I was just looking for information when I ran across this message board. It certainly changed things for him and me. Being a supporter is a tough place to be in at times, especially near the end of the cycle when our loved one is exhausted from the pain and the lack of sleep, and depressed. Especially if you are trying to help, are worried and in another kind of pain from seeing them going thru the torture..........and they get short tempered with YOU. I've learned to step back and just wait for a signal from them as to what can be done to help. They (most of them, anyway) just want to be left alone......certainly no conversation as it is stressfull and eventually impossible for them to focus on anything other than the pain. Check out the OUCH site and click on the Family Services button if you want one- on- one help as the supporters there will e-mail you back. Just leave a message at clusterbuds@hotmail.com |
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Title: Re: This Site is the Best! Post by Ted on Apr 1st, 2002, 5:03am Maureen, I came to this board feeling sorry for myself, which is a rare occurance for me (Alright, sometimes not, in full disclosure to Margi). I'm basically an intractable chronic, although sometimes O2 works for me as an abortive (so the fact that it helps sometimes I don't know if I'm officially classified as "intractable."). I've been to so many doctors -- when I had insurance --and tried so many meds. Anyway, I came here remembering Donna's claim that if you have crap at home you can come here and get support. Being cynical and figuring "that's a bunch of shit." I came here to test that all out. I read your post and your concern and realized how pathetic it would be for me to do that. Reading your and Jayne's posts humbles me. I'm sorry you have to be in the position you are in. |
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Title: Re: This Site is the Best! Post by MaureenG on Apr 2nd, 2002, 7:59pm Ted: As Donna mentioned, it's sometimes tough being a supporter, but I can't even begin to imagine what a difficult position you sufferers are in. Although I can see the pain on Steve's face, and can judge which headaches are worse than others, we can never fully comprehend the extent of your pain. Everytime I get a "normal" headache, I almost feel guilty taking a Motrin and feeling better within half an hour. I wish it were that simple for him. You don't need to feel sorry for us supporters, we're just trying to be half as strong as you. Keep fighting the fight! Maybe the collaboration of clusterheads on this site will lead to a cure. ;D |
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