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Title: New and scared... Post by QLR on Oct 27th, 2004, 1:12pm I am pretty new to this and very scared. I am very glad to have found this site. It is comforting to know that I am not the only one who feels this way. I have been with my boyfriend for a few years and have only gone thru one cycle. It looks like it is going to be starting again soon. I am scared. I feel so selfish saying that because what I go thru is nothing compared to what he goes thru. I witnessed a cycle for the first time last year. I had no idea what to do. Randy(my beau) asked me to just be there. All he wants me to do is just hold onto him and not move. So that is what I do, as soon as they start he phones me and I go home. I feel so helpless, I keep thinking one of these times he is just not going to make it. I can't help myself from crying just thinking about this all starting again. I almost completely fell apart last year and I was hoping for some tips on how other supporters keep it together. Last year I did alot of crying when he was sleeping. I tried talking to my friends and family but nobody really understands. I myself get migraines and I know how that feels...I can't begin to even try to understand what he goes thru. I don't mean to, and I hope this post doesn't sound selfish. I know that he is the one doing all the suffering and I know what I deal with in comparison is a picnic. From what I have read on this site I hope you all understand that this was just my rant. I needed to get this out and to tell someone who just might understand. Sorry for making this so long and thank you for this site. Karen |
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Title: Re: New and scared... Post by Margi on Oct 27th, 2004, 2:17pm Hi Karen - first of all - BIG hugs from a fellow supporter (also a migrainer, lots of us supporters are migrainers, actually). I've been with my husband 18 years now and he is episodic, with 2 year remissions between 6 month cycles. Yes, you do adapt to this lifestyle as time goes on but nothing...repeat: nothing...makes the pain you BOTH feel go away. The feeling of watching someone you love go through this horrific pain and realizing that you are powerless to stop it is gut wrenching for the supporter. Know that neither one of you are alone with this though, ok? We also have a Canadian message board and website for we Canadian sufferers and supporters. Please do stop by - we've got a couple of clusterheads in SK, even! One in Toon Town, one in Davidson. (Grant and Ross, respectively). The best thing you can do for Randy is arm yourself with knowledge. You're his best defense right now to get him into a good neurologist and get him going on a treatment plan. Oxygen is probably the best (and safest) abortive and there are lots of medicinal and natural alternative treatments out there now. Hope to see you over at OUCH Canada, Karen - we've got a great group over there! We're at http://www.clusterheadaches.ca. Feel free to email me directly at margis@clusterheadaches.ca if you'd like to talk "off the board". Hang in there, gal - we're here to help. And tell Randy to visit the websites too - it will really help him to know that HE's not alone either. more hugs, Margi and, p.s. - you're NOT selfish, what you're feeling is completely normal for a supporter. And, you're absolutely right - folks who've never had to live with cluster headaches simply canNOT understand or support someone who does. We're a group unto ourselves, I'm afraid. The good news there is, though, that we DO understand what both of you go through, because we live it ourselves. |
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Title: Re: New and scared... Post by QLR on Oct 27th, 2004, 4:26pm First off - thank you so much for the reply. And thanks for making me feel like it is ok to feel this way...I was starting to feel guilty for how I felt. Not that I can control what I feel, but it is nice to know I am not alone. I started to get really down on myself...here Randy is laying on the living room floor with his head under a foot stool, crying and I am thinking I don't know how much more of this I can take. And then I realize if I can't take it much longer how is he still alive? There were many days I hated myself for being so selfish. I read the "another kind of pain" thread and wow did it hit home! It is a comfort to know other people know what it feels like but on the other hand it absolutely breaks my heart. I am new to this but Randy is not. He has been dealing with this for almost 20 years. He has tried all the drugs. In the last couple of years we have found that Maxalt works best for him. When that doesn't help he usually ends up in emergency. This cycle he is hopefully going to get some oxygen at home. Last year we made it without going to the emergency which is great and the cycle "only" lasted about 4 weeks. The cycles were starting to get further apart. Normally it was one year almost to the day, and then the last two remissions were 15 then 18 months. Very exciting for us. But now very disappointing that we think they might be starting again (only a year). He is starting to get cronic headaches and "twinges" (his word), which is usually how they start. Randy's demons like to taunt and tease him before they really start to torture. I find myself watching him again. I constantly watch him, he rubs his head and I get nervous, he takes an advil and I question him why. I watch to make sure he is sleeping. I made myself laugh today about one thing. I have been complaining to him about his snoring, that it is driving me nuts. Then I remembered last years cycle...his snoring was the most wonderful sound to me, because I knew if he was snoring he wasn't in pain. Sorry again for the long post. I guess i am just so excited to have someone to talk to about this that I just can't stop typing. Randy is the one person I usually talk to when I am having trouble coping with something. This is not something I want to burden him with, the pain is enough for him to deal with. Thanks again. You have no idea how much better I feel just being able to talk to someone who understands...I just read my last sentence and I guess you do know. ;) Thanks again and I will be sure to continue my research. |
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Title: Re: New and scared... Post by E-Double on Oct 27th, 2004, 5:52pm Hi Karen, As bad as this affliction is, there is nothing worse to me than seeing my bride to be helpless over me(I am the Clusterhead). That is excruciating and what you guys feel is beyond the physical pain that we do. Tremendous strength!!!! She is stronger than I could imagine and like all supporters a true angel! Now get Randy to come talk to us :) Thank you to all of angels out there who stand by our side. Respect, love and admiration!!! Eric :whose supporter still wants to marry him ;)23 days to go then I'm hitched lol |
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Title: Re: New and scared... Post by Jackie on Oct 27th, 2004, 6:20pm Hi Karen, Welcome to the site. I'm married to a chronic clusterhead. It's a tough go sometimes but well worth the effort. Enjoy every pain free day to the very fullest! You are showing desire, sympathy and determination......you'll do just fine. There's a bunch of good folks here. Keep in touch and let us help when we can. Jacks 8) |
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Title: Re: New and scared... Post by QLR on Oct 27th, 2004, 6:44pm Thanks for all the support. This is a great site!! It really is comforting to not be alone. I know Randy has been on this site a few times, that is how I heard about it. I am not sure if he has ever registered. I think he mostly just comes to read other peoples stories. Maybe that's enough support for him. Eric you said there is nothing worse than seeing your bride be helpless. That is why I don't want Randy to know how hard this is on me. I realize that he knows that it is wearing on me too, but I hope he doesn't know to what extent. I make sure he doesn't see me cry and when I fall apart I do it by myself. I have spent alot of time in my car crying. He has enough pain to deal with. And I know him...he is an amazing guy, if he knew how much it hurt me to watch him, he would lie and tell me he wanted to be alone when he was suffering...and I know that is not the truth. He has said many times that just being there and hanging on to him helps. And if that is all I can do, that in itself makes me feel a little better. Eric, congrats on the wedding. And to everyone who suffers I wish for nothing more that pain free days and for those who support, thank you and I hope I can be of help to other as much as you have helped me. Thanks Karen |
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Title: Re: New and scared... Post by E-Double on Oct 27th, 2004, 10:37pm My dear Karen, I think you must have misunderstood me.... yes to me there is nothing worse but it is important for me to know what she is going through as much as it is important for her to try to understand what it is I need. You should share with him your feelings and your pain and go through this together because it appears that this is what you do anyway. He is so blessed to have you. Sometimes the best thing is to have a good hard heartfelt cry fest together. It can rejuvinate the both of you. And make sure he tries to get out sometime and try to live as much as possible. YOU TOO!!!! If you need to talk or if he needs to talk drop me a line. Hugs and be well. Eric P.S. Thank you :) |
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Title: Re: New and scared... Post by QLR on Oct 28th, 2004, 10:35am Thanks Eric, That's good advice. Randy is pain free right now and hopefully will stay that way for awhile. He seems to be getting some warning signs that a cycle may be coming. He keeps telling me that its nothing, but I see the worry on his face. We were hoping this remission would be closer to 2 years as the last 2 cycles have been getting further and further apart. Here's hoping he just has the flu or something. Eric...thank you. next time I need to fall apart I will definitely be on this site but I will also be sure to talk to Randy too. I know I have said this before, but thank you so much for this site and the people on it. It has made me feel alot stronger and more confident that I can be a strong supporter. Karen |
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Title: Re: New and scared... Post by Patrick_A on Nov 3rd, 2004, 8:26am To me, The supporter is the most selfless person in the mix. When i suffer, It is all about me. My supporter is doing everything in her power to ease MY pain. I am forever grateful to her. But during the cycle, I am only looking for that light at the end of the tunnel. For me, When i feel that 1st twinge come on, That is when i want my wife to help me. I need massages, Ice, medicine. I need her to help me keep all of my medicines up to date, In my truck, at work, by my bed, etc..., But once the attack is full blown, I just want to be left alone. I don't want her to see me suffer. I don't want to have to worry about her, which i will if i let her see me suffer. When that "10" subsides back to a 5, then i want her again. Yes, It is selfish of me. But, Its the only way for me to deal with it Patrick |
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Title: Re: New and scared... Post by Margi on Nov 3rd, 2004, 9:46am It's not selfish of you, Patrick - you're in survival mode at that point and so is your supporter. It's all about team work when a cluster cycle hits. You each do what you have to do to get through it. Sounds like you two have a good battle plan. What you describe is exactly what Mike and I do when he's in cycle. Man the battle stations, make sure the weapons are at the ready and hunker down for the duration. It works for us. Mike likes to be alone during an attack too and I respect that. Stay within earshot but give him the room he needs. |
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Title: Re: New and scared... Post by Redd715 on Nov 6th, 2004, 11:55am Margi, All I can say is you are one awsome lady. If each of us Clusterheads had a supporter in our corner just HALF as compassionate as you we'd all be so very blessed. Kudos to you...... [smiley=hug.gif] |
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Title: Re: New and scared... Post by Ree on Nov 7th, 2004, 6:16pm on 11/06/04 at 11:55:58, Redd715 wrote:
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