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Topic: Help me please (Read 408 times) |
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JamieLE
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Hi, I'm new to the board. My boyfriend who I am very much in love with and care for alot gets cluster headaches. I'd never seen or been around him when it happened until yesterday. We were driving to my highschool's graduation and he had to stop at a readlight and put his emergency lights on. right when it started, he told me that he wa about to have a cluster and told me not to freak out, but when it got to the really bad part i didnt know what to do. I could'nt stand to see him ini so much pain and not be able to do anything about it - I fealt so helpless. The only thing I could do is hold his hand and rub his back while it was happening. Is there anything that i could do to help him when hes going through this? I know theres not much that I can do, but I want to know everything. I will do anything to ease his pain at these times. Sorry this was soooo long, but i kinda needed to vent. Thanks for listening, It bites that there are others that have to go through this, but I'm glad there are others to understand.
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Margi
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Re: Help me please
« Reply #1 on: May 27th, 2003, 12:37pm » |
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Hi Jamie,
Wecome to Clusteropolis. 
Well, first of all - there ARE things both you and your boyfriend can do. HE needs to sit down at this website and understand that he is not alone with this.
As for YOU - read ALL the buttons on the left here, Jamie. Go to the OUCH Website and check out the Family Services Team pages (the link is at the bottom of my post).
It sounds as if you're both young, under 20? Is he under the care of a neurologist, do you know? He needs to be. He also needs to have the proper cluster meds. It's encouraging, however, that at his age he actually DOES know that this is clusters - so many here went 10+ years undiagnosed. Onset is common in late teens/early twenties.
Again, welcome - sorry you have to be here, but you really have found the best resource on the internet for both of you. Best of luck.
Hugs,
Margi
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JamieLE
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Yes, I am under 20, seventeen acutally, but hes 23, he was the one who told me to go to this site just to learn more about it, but I didnt come here untill I actually witnessed it happening to him. I dont think he has a nureoligist, he went to some doctors, but they, like you say all over this website, have no idea what to do with him and dont see it as a very bad problem. I have been reading alot in here today and find it very helpful, but disturbing as well.... this is some scary stuff for me, especially at seventeen, I havent dealt with stuff like this before.... but thanks for your help!
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cathy
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Re: Help me please
« Reply #3 on: May 27th, 2003, 2:05pm » |
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Hi JamieLE... it's a shame that your having to go through the learning process at all, but you couldn't have found a better place for info and support. Find a good neurologist and go armed with as much as the info from this site as you can. O2 and Imigran are good abortives for a lot of people.
As a supporter myself all I can say is you've already started being a good supporter just by being here...knowledge and understanding are your best friends. I know it sucks but there is not much you can do to help him through each hit, except be there when he needs you.
If you need to vent or just want to chat feel free. Keep us posted as to how he gets on.
Welcome.
Cathy
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Jackie
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Re: Help me please
« Reply #4 on: May 27th, 2003, 6:03pm » |
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Hi Jamie,
You're young to be going thru the supporter role but you can be a great help to your boyfriend. First thing you need to do is read this site and OUCH. Educating yourself will make you much more able to help him and that's what it's really all about.
Good Luck and remember there are supporters here who will help you with whatever they can.
Jacks 
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Ree
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Re: Help me please
« Reply #5 on: May 27th, 2003, 6:39pm » |
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Hi Jamie... That is a really hard thing to see for the first time. It is all to vivid in my memory too. We have been going through this for a few decades. You can ask him how he would like you to deal with his CH. Does he want to be alone... Does he want you to touch his back. Some of the guys dont like to be touched or even have anyone in the same room... Just coming here shows me how much you love and care for him. He is very lucky to have you. There is alot of information for you two. He knows the site here because he sent you here. Do we know who he is? Has he ever posted? Are his parents supportive to him and can he get to a Neurologist? Does he take a preventative or an abortive medication??? Does he need help from US... Let us know... I have been here going on three years. Listening, supporting and being supported by a wonderful group of people I consider family now. Please feel free to email me or IM me at Ree16angel@aol.com my AIM is Ree16angel or Reespirit99... if you see me on give a shout... Im still 17 at heart...I know how you feel... love Ree
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JamieLE
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Actually, HE'S pretty well coped with it by now (or at least seems to be). He was diagnosed when he was six years old, so now hes built a higher threshold for pain and an incredible sense of "dealing with it." I seems like most of the people I read about, they dont onset untill their twenties or somewhere around that point, six seems pretty young to me to be having that kind of pain. He hasn't been on this site sence august (thats when he last had one before monday) but plans on visiting again.... Suprisingly, it seems like he's more at ease with it than I am! I mean if it was me, theres NO way I would be able to smile while talking about it, and he does! But he's also alot stronger than I am in more ways than one. Thank all of you guys for caring! Its such a change for me, usually I'm around high school kids who dont care about anyone but themselves, but you folks have real compassion and sympathy that is hard for me to find. By the way, Chris (my boyfriend) didn't have an attack today, so hopefully, moday was just a random one (please God!)..... pray for him! ;D
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Ree
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Re: Help me please
« Reply #7 on: May 28th, 2003, 1:51pm » |
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Honey the reason they call them Clusters is because that is how they come... in clusters. Very rare do they have random hits... sorry to tell you this but he needs to see someone instead of coping. If he was diagnosed that young too I am sure he has a doc that is into his situation and can help more. No one has to "put up" and should do whatever they have to to ease this terrible fate... take care love to you Ree
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Proud Mom to US ARMY Kiowa OH58 PILOT~CWO2 SCOTT Hawaii, & USMC Vet~Now POLICE OFFICER SEAN, Citizen of the Month~ Breezy~ Nana 4 Matt/Mike&Aya, MIL To Shino Wife to Dave HI BILL!http://www.myspace.com/dungareespockethttp://www.prohawaiian.com
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JamieLE
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Well you were right about the not a random attack thing, he had another one today, I guss it was just wishful thinking.... But you misunderstood what I meat by "coping" and "putting up with it" I just ment that it has made him sronger and that he doesn't let it keep hm down or hinder him in any aspect of hs life. Thats what I mean by that, wrong choice of words I guess.... but for that I am very proud of him.
Right now, all I need are tips on how I can make him feel better, water, backscratching, got that.....any other tips? What do all of you do when your love ones have an attack?
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cathy
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Re: Help me please
« Reply #9 on: May 29th, 2003, 1:29pm » |
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on May 28th, 2003, 10:36pm, JamieLE wrote:l I need are tips on how I can make him feel better, water, backscratching, got that.....any other tips?
What do all of you do when your love ones have an attack? |
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Hi again Jamie
You need to ask Chris what he'd like you to do to make him feel better, he is the only one who can answer that question....
When Wes gets hit, he likes to be left completely on his own, so I will be within hearing distance in case he needs me, apart from that I respect his wishes.
Sorry he's suffering.
Cathy
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