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Title: AND ANOTHER KIND OF PAIN..... Post by sandi on Nov 23rd, 2003, 12:37am Hi, I’m Sandi and this is my first post. I’ve been lurking around here for a few weeks trying to decide whether or not to post and now it’s become clear to me that I must. Please don’t get me wrong when you read this but to go on about how supportive I am and how my heart breaks for my loved one would be redundant…OF COURSE I AM AND OF COURSE IT DOES! I just haven’t seen our particular secondary problem on this board and I’m starting to worry…a lot. My boyfriend of 6 months suffers from CHs. He didn’t when I met him but he had told me about them and how he had them for close to 20 years, how many doctors and treatments and meds he went through to try to get rid of them. How he abused a particular med and then when he was left without it during a bad CH he suffered through it for a few days and was then pain free for 6-7 years! Well, they’ve been back since the beginning of October ... getting really unbearable in mid-October. I really have never seen anything like it. Everything he tells me and does I’ve seen mentioned 1000 times right here on this web site. I never knew headaches like these could exist and considering that I’ve been a migraine sufferer since the age of 11 that’s really saying something. I know that I can’t help other than to be supportive and understanding. I even read about the water treatment, and suggested it to him, before he read about it. Here’s the real wierd part though…and I don’t know if anyone can relate to this but it’s making me feel horrible and I have absolutely NO IDEA if it has anything to do with the CHs. We used to have a very healthy sex life. No, a great sex life! We only see each other on weekends and since the beginning of October we have made love like 3 times. SERIOUSLY! At first we didn’t have sex because of headaches. Thank God, and I mean it, he doesn’t get as many in one day as a lot of people on this board nor are most of them quite as severe (average 4-5) Then we didn’t have sex, he said, because the med for the headaches causes loss of ability to “perform” on and off. So, you would think that when he does see me and isn’t having a headache that sex might be on top of the list…before eating, before going out, BEFORE ANYTHING! (This is a man who told me that sex is VERY important to him in a relationship). But what happens instead is, we go out, have a few drinks, he gets a headache and that’s it and it starts all over again till next week. He obviously wants to go out and have a good time more than stay in and have a good time with me or else he’s telling the truth and he really just never can???? He’s all lovey-dovey on the phone all week then every weekend there's something else. I’m too humiliated to even discuss it anymore. I feel unwanted, unloved and most of all very undesirable. Can anyone tell me of any similar experiences? Or even if this sounds “normal” at all? I am so worried about his clusters but I’m also worried about what this is doing to our relationship…He makes practically no attempt at intimacy and not being a CH sufferer I find it hard to understand that CHs could do this much to someone because other than having no physical relationship with me, and I am attractive, he’s still very caring and attentive. Like I said, I’ve been reading here a lot. You people all seem so genuine and kind and maybe you can help a girl who doesn’t know where to turn and who, while feeling heartbroken for her boyfriend, is afraid that she just might blow it all out of lack of knowledge and put her big foot in her mouth out of frustration. Any thoughts? PLEASE HELP! And sorry for the long post! Sandi :-[ |
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Title: Re: AND ANOTHER KIND OF PAIN..... Post by Jackie on Nov 23rd, 2003, 6:48am Hi Sandi, Well, let's see.....where do we start with this. :-/ First of all you mentioned going out and having a few drinks. Alcohol is a BIG trigger for most cluster sufferers. The vast majority of clusterheads NEVER touch alcohol while in cycle. Blake, my hubby, is chronic and NEVER drinks....if he does it's only a short amount of time and he's in a full blown attack. Maybe your boy friend should leave the alcohol alone while in cycle....at least try it and see if the HAs improve. As to the sex part....I have a hard time discussing personal things so I'll just tell you that sex is the one thing that goes on pretty much as normal for us....only when the atttacks were VERY bad and VERY often does it make a difference. You might do some research on the meds he's taking. Medication can impede performance. That could be part of the problem. You all are in a new relationship and the physical part of a relationship can be all important in this stage...maybe he's afraid of failure. Cluster sufferes are sleep deprived and often become very depressed. They also live in a constant state of fear. All these things make normal life almost impossible. My advice to you......wait it out. When the cycle ends things will probably go back to normal. Part of being in a relationship with a cluster sufferer is being able to put your wants and needs on the back burner when they are under attack or in cycle. You have to put what they need and want first....remember they are suffering pain we can never know and it does things to them physically and mentally. Patience and understanding is the key. Good luck, Jacks 8) |
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Title: Re: AND ANOTHER KIND OF PAIN..... Post by HannahFroukje on Nov 23rd, 2003, 7:27am Hi Sandi, I' ll try to answer to your post. As for us, yes we do have a similar problem, exept that my boyfriend knows that when he's having alcohol it triggers attacks immediately. So I don't think it would be asking too much from your side to say please leave the alcohol alone. When my hubby is in a cycle he is very much to himself, even on a day he's having no attacks, he seems changed in character, and sex is really the LAST thing that will spring into his mind, not only because of the headache but more because he's kinda "shutoff" from the outside world. I cannot relate to him anymore. So during his cluster we have more or less a mother-sun relationship (which I HATE), I am trying to be as supportive as I possibly can and he is trying to endure the pain, that's all. If we're lucky we're eating, if we're lucky we're sleeping, but having sex I would consider to be very lucky, and I hardly ever get that lucky during his clusters [smiley=huh.gif]. The need for it seems to have disappeared completely in his head. Not only the act itsself but also the need for intimacy, hugging, having contact, doing stuff together, it all has disappeared. You'll just have to try and sit this one out. But it's only fair to ask him to drop the alcohol for a while, it's not fair towards you to keep on drinking and spoil both your time by having attacks from it. He will perhaps say he enjoys drinking and it makes him forget things, but I would say he SHOULD be thinking about you a bit too, you're suffering too, not the same way as he is, but your life practically comes to a stop living with a CH. So don't stop asking little things for yourself if they are fair enough. If you wanna email, feel free to do so. I know it's hard, I find it hard too especially because now you need someone to talk to and be close to and it's hard to be missing that just NOW you need it MOST! Email: knowitnotall@hotmail.com Good luck! Hannah PS My posts are always too long, don't bother. People can always skip'em can't they? |
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Title: Re: AND ANOTHER KIND OF PAIN..... Post by Margi on Nov 23rd, 2003, 3:01pm Hi Sandi, welcome. Sorry you have a reason to find us, but glad you did. What you talk about has been discussed here before, but not for a long time. Yes, I've heard others having this same problem and let me tell you something.....it's not YOU. This affliction is (we believe) due to an abnormality in the hypothalmus, which controls all kinds of things: sleep patterns, mood regulation, body temperature, sex drive, most things hormonal. At the convention last year in Vancouver, Canada, one our Italian brethren stood up and asked the doctor if it was common for clusterheads to be oversexed. You should have HEARD the cheer go up in the audience! :) Doc Robinson laughed too and confirmed the Italians' suspicions. No, it's NOT just Italians! However, when a cycle hits them - it CAN decrease the sex drive. That old hypothalmus kind of gets stuck in neutral during a cycle for some clusterheads. As well, blood pressure increases during an attack and therefore, there's an inherent fear of intentionally CAUSING the blood pressure to increase. In other words, why play with fire? Would increasing the blood pressure bring ON an attack? That's been a fear in our house during every cycle - Mike and I have been together 17 years, married 14 this year. We've had the unfortunate experience to prove that theory sometimes. :( At the peak of a cycle, it's just not worth the risk. I guess that fear spills over to supporters, in that respect. We often worry that may do something to cause an attack for our sufferer (using nail polish remover, serving food with MSG, lighting candles - all things that are benign to us but when our sufferer is in a cycle, they are SO sensitive to everything!) I, for one, would feel terrible if I caused Mike's blood pressure to rise and it spawned an attack for him. Talk about a mood killer! ::) So, in that respect, we kind of "go into neutral, too" at the peak of a cycle. 'Tis the life we lead, in Clusteropolis.... I will, as well, third the opinion here on the alcohol. It's a very common trigger for clusterheads and your boyfriend needs to recognize it as one. Your best defense in supporting a clusterhead is to absorb everything you can and educate yourself with the wealth of information here. If YOU can understand what's going on with him, it will make it a lot easier for both of you. Please feel free to keep asking questions, Sandi - there are lots of us here who are veterans at battling the beast and we've always got time to help. Again, welcome. :) |
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Title: Re: AND ANOTHER KIND OF PAIN..... Post by Ree on Nov 23rd, 2003, 6:46pm OYYYYYYYYYYYYYYYYYYY... too personal to deal with for me but you can put us in this category and if you tell Dave I said anything I will deny deny deny................ ree |
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Title: Re: AND ANOTHER KIND OF PAIN..... Post by BillyJ. on Nov 23rd, 2003, 9:00pm What meds is he on? They can realy be a probem with sex drive and abbillity to perfom. I see you are in NY too,maybe I could be of some "service" to you! ;) Just kidding! I am happily married.seriously though ,what part of NY are you from if you don't mind me asking,I'm in Corning NY BillyJ ps,welcome aboard! |
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Title: Re: AND ANOTHER KIND OF PAIN..... Post by sandi on Nov 23rd, 2003, 11:52pm Hi BillyJ! Thanks I needed a laugh! That was funny! My boyfriend is on cafergot...seems to be the only thing that helps him. I read and read about it today and didn't see any side effects relating to sex drive. But who knows...lots of meds do different things to different people. He's been trying www for the past 2 days. It's been making him feel kind of crummy..ya' know BLOATED :P, but he's trying to stick with it...he'd love for it to work for him. Of course, not drinking alcohol (on weekends)and quitting smoking would probably help alot ::) I'm from NJ right outside of NYC so I just say NY because it's easier to explain and only 15 minutes from midtown Manhattan right over the George Washington Bridge. My boyfriend is in Manhattan. So who has the CHs in your family? What a horrible affliction. I never knew about these monstrous things until 2 months ago. I had heard of Cluster headaches but I really had NO IDEA of what they really were. Too bad someone I love(and all you nice people)has to have them :-[. I have been on alot of forums/message boards at one time or another, mostly entertainment related. Never in my wildest dreams did I think I'd end up here. This may sound "bad" but it's meant well...for so many people in so much pain in so many different ways(myself included),this is a very friendly and welcoming group. I'm glad I joined BillyJ from Corning(upstate)?..and thanks for the welcome :)! Sandi |
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Title: Re: AND ANOTHER KIND OF PAIN..... Post by thomas on Nov 24th, 2003, 3:26pm Hey Sandi, if it's any help, I loose all interest in sex while in cycle. So don't take it to personal. Wait it out if you can. I know it's hard but we are very tempermental creatures (ch sufferers). Hang in there. I hope he gets better soon. :) |
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Title: Re: AND ANOTHER KIND OF PAIN..... Post by HannahFroukje on Nov 24th, 2003, 4:39pm on 11/23/03 at 15:01:47, Margi wrote:
Oh buggers , I've picked the wrong clusterhead. Should have gotten the Italian one when I had the chance ... Whaahaah :P |
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Title: Re: AND ANOTHER KIND OF PAIN..... Post by Woobie on Nov 25th, 2003, 8:37am Hello Sandi...... Welcome.!! :) Does your man use OXYGEN!??!?? And......... to answer your question - sex is out of the question when my husband's in his cycle. And, I totally understand ... and it's ok with me. We make up for it later. [smiley=bloos.gif] Does your boyfriend come to this site?? Hope you get some soon!! ;;D I still gotta wait a while...... :-[ Without......... Tina :-* |
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Title: Re: AND ANOTHER KIND OF PAIN..... Post by sandi on Nov 25th, 2003, 8:58am Well Hi Tina! Gosh everyone here is so nice!!!! ;;D I don't feel bad like I did when I posted on Saturday night(about myself I mean). Frank does come to this site(mostly to read about meds and treatments...he's not much of a "chatter" but he's really not into typing alot either)!..he found it before me although we both found it seperately. he doesn't do oxygen now..he has in the past but his HAs really aren't as frequent or severe as they used to be..so I'm told(I didn't know him then). Thank God, most of them are much less severe than what I read on here...he says they used to be like that. I'm just hoping it stays this way til it ends.(For his sake). As for the other thing..I can tough it out now that I know it's not me!I was so upset because i just found this man 6 months ago and WHAM...what a strange way to start but I heart him! And oh well, I still have my memories!!!LOL! "Winter must be cold for those with no warm memories" Yeah I'm in a silly mood..quoting from "an affair to remember"? ::)! Gotta' get myself dressed and off to work! Thanks so much for your assurance and your welcome :D hugs, Sandi |
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Title: Re: AND ANOTHER KIND OF PAIN..... Post by Margi on Nov 26th, 2003, 9:49am Aw, Woobie.....BIG hugs, darlin. http://www.deephousepage.com/smilies/hug.gifDamn, but we supporters are patient folks, huh? ;) And, after reading Jackie's post, apparently it's different for chronics. No wonder that woman is so friggin happy all the time!! http://www.deephousepage.com/smilies/banana.gif |
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Title: Re: AND ANOTHER KIND OF PAIN..... Post by sandi on Nov 26th, 2003, 10:22am You're not kidding Margi! I've gotten alot of PM's from guys who I of course will not name who concur with most of the folks who I've been hearing from...definite decrease in interest. Since Jackie's was the first answer i received I got kind of depressed :-[ for me! NOW I'm just so damned happy for her ;;D Maybe we should take a survey? ONLY KIDDING! That's a job better left to Masters and Johnson(but I think they're not doing much of anything these days either)! [smiley=nopity.gif] Happy Thanksgiving Everyone! Love that dancing banana [smiley=crackup.gif] sandi |
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Title: Re: AND ANOTHER KIND OF PAIN..... Post by Jackie on Nov 26th, 2003, 6:07pm Well now....we just might have new subject matter for a survey.... ;;D I'm sure glad my chronic hubby stays 'interested' or I'd be in bad shape around here..... :P See Sandi.....it doesn't matter how bad we feel this bunch will pick you right up. It's amazing how a little advice, shared experiences and a few kind words can make it 'all better'. Hugs, Jacks 8) |
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