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        Cluster Headache Help and Support >> Cluster Headache Specific >> Intimacy Question
        
(Message started by: Kitty1973 on Mar 27^th, 2008, 1:25pm)

Title: Intimacy Question
Post by Kitty1973 on Mar 27^th, 2008, 1:25pm

I have a question for anyone who can answer.

I have been married for 16yrs. I began having cluster headaches in November of 2007. The demon hasn't let up on me yet. I think I had 1 or 2 days without an attack since November.

I also haven't been intimate with my husband in months. I just don't feel like it. I am either in the clutches of the demon, or worn out from the last attack.

He is not at all happy about this. He knows I have been suffering, but he still keeps asking for it.

What should I do? I really don't want to right now, I feel so tired when I am not in pain. I have 5 to 8 attacks per day. How do I get him to understand this, without hurting his feelings or making him think that I don't love him, and how can I make him understand without him getting angry like he usually does when I tell him I don't want too because I either have the demon in my head, or I am just exhausted?

Title: Re: Intimacy Question
Post by KaiB on Mar 27^th, 2008, 2:42pm

Nope, it ain't you. I'm a guy, but I can't help but imagine you want nothing to do with sex. I damn sure don't blame you.

Tell your hubby I said to forget about it! I'm not P.C. enough to suggest support groups for spouses, and feelings and all the rest of that.

The guy needs to back off and stop being so selfish. Others will chime in with nicer words...but if he was my friend, I'd have tough words for him.

Title: Re: Intimacy Question
Post by kevmd on Mar 27^th, 2008, 2:47pm

I will try to contain myself here but what is his problem?????? Seriously....you are suffering immensely and he needs to chill out. Tell him to take care of himself!!!!!!!!!!!

Title: Re: Intimacy Question
Post by DragonSlayer on Mar 27^th, 2008, 3:13pm

Kitty1973, So sorry the beast is beating you up like this! :'(

5-8 hits a day for months will get anybody down!
I would get in touch with your Doc. there are prevent meds that should work better that what you are experiencing.

What are you taking now???

Abort meds 0₂?, Imitrex?

I see my gf about 2 or 3 days a week and we seem to be able to "get together" at least one of those days (I'm the one suffering CH). I have a high sex drive and after a couple MONTHS I would get a bit testie and upset also (but that's just me). It depends how bad the hits are and some days I just don't feel like it either, but I've never gone months without a pf window that allowed me to respond to gf's intimate advances.

You need to take care of yourself. I won't give relationship advice but open communication with hubby is usually recommended (maybe a supporter can give better advise). When you get things sorted out you can get back to your loving self. Like I said talk with your Doc. about what can be done for better/longer pf time.

Title: Re: Intimacy Question
Post by brewcrew on Mar 27^th, 2008, 3:40pm

I would ask what meds you are taking. Many meds list a loss of libido as a side effect. For me it was verapamil, but I'm a guy. It's a real bone killer, if you get my drift. Also, vasoconstrictors don't discriminate in which blood vessels get constricted, and that will lead to an overall feeling of "don't touch me because I can't feel anything."

Title: Re: Intimacy Question
Post by Kitty1973 on Mar 27^th, 2008, 4:18pm

Thank you all.

I just read to him what you said. He said "well, then I guess our marriage is over". he also told me that I am being "selfish"

I kinda expected that response from him.

Title: Re: Intimacy Question
Post by kevmd on Mar 27^th, 2008, 4:25pm

Very sorry. And I do not mean to be out of line but it struck a cord with me I guess. Marriage is not all about sex. My wife and I haven't gotten together in a couple months because I am too friggin tired, on medication that gives me very little drive. I've had to turn my wife down several times. IT just isn't going to happen til I am better. plus she is more than 8 months pregnant and tired herslef all the time. But I will try to make up for lost time in the future. Good luck with everything. Hope you get better soon

Title: Re: Intimacy Question
Post by brewcrew on Mar 27^th, 2008, 4:44pm

on 03/27/08 at 16:18:32, Kitty1973 wrote:

I just read to him what you said. He said "well, then I guess our marriage is over". he also told me that I am being "selfish"

My goodness. This leaves me totally speechless. The only thing I can recommend is a marriage counsellor.

Title: Re: Intimacy Question
Post by Racer1_NC on Mar 27^th, 2008, 4:52pm

on 03/27/08 at 16:44:07, brewcrew wrote:

This leaves me totally speechless.

You aren't the only one.

Title: Re: Intimacy Question
Post by LeLimey on Mar 27^th, 2008, 5:40pm

speechless and heartbroken for you here Kitty.

I just don't know what to say to that (well I know what I WANT to say but it would NOT be helpful)

Has he been like this before at any time? Could it be his way of coping (and I mean not coping) with seeing you in pain? Does he understand about what you're going through or does he think it's "just a headache"?

Hopefully we can help him understand it's not you not caring and it's not about you not wanting him, it's about pain and misery and depression caused by it, the fear.. everything.

I hope we can help sort things out but know this, we'll be here to support you no matter what okay?

Helen

Title: Re: Intimacy Question
Post by Guiseppi on Mar 27^th, 2008, 5:40pm

Try to get him to register on the board and hang out for a bit in the supporters section. We like to completely avoid a topic we don't understand, it might help him to talk with other supporters. It's possible he thinks you're exxagerating a headache. Perhaps hearing from other supporters, about how bad these headaches are, will help him understand. Hoping some peace comes your way soon. :-/

Guiseppi

Title: Re: Intimacy Question
Post by Redd on Mar 27^th, 2008, 5:48pm

I'll third that.

>:( >:( >:(

Title: Re: Intimacy Question
Post by Kitty1973 on Mar 27^th, 2008, 6:14pm

I got him to talk to me a little about it after my last post, and before he went to work. He seems to think that it can't be "all that bad". I explained to him how it felt the best I could. I think that helped some. He was under the impression that CH's weren't much worse than a mild migrane. This is even after he saw me screaming in pain for almost 5 hours last week. I think some of what I said and what you all said got through, because he told me he was sorry. He did get upset with me for posting the question, but like I told him I needed help to deal with the problem, and he wasn't helping. He said I made him sound like an ass. I told him that that was exactly what he was being, and after a while I think he realized it himself. He has agreed to "take care of himself" and try to be more understanding.

Thank you all for your advice.

A dose of the truth isn't always pretty, and it isn't easy to take either

Title: Re: Intimacy Question
Post by mudplugga on Mar 27^th, 2008, 6:25pm

A dose of the truth isn't always pretty, and it isn't easy to take either

Ain't that the truth!

I hope he begins to figure out that you have been truthful to him, and he needs to respect that.

Title: Re: Intimacy Question
Post by brewcrew on Mar 27^th, 2008, 6:37pm

Click on this link, print it, and hand it to him:

http://www.ouch-us.org/chgeneral/colleagueletter.htm

Title: Re: Intimacy Question
Post by Lebowski on Mar 27^th, 2008, 7:45pm

on 03/27/08 at 18:14:13, Kitty1973 wrote:

He seems to think that it can't be "all that bad". [/i]

I wish I had a dollar for every time I heard this or tried to explain to somebody what a CH was like. I have about given up on the explanations. The collegue letter is fantastic to give to somebody to read. Hopefully he will get a real good understanding of what you are going through.

Sending some PF vibes your way!!!

Title: Re: Intimacy Question
Post by Linda_Howell on Mar 27^th, 2008, 9:50pm

If you aren't mad then can I be mad for you?

I know that won't help one little bit..but I think if you could drag him to this site, see what the men here have posted and let him read a bit around here,in regards to what this kind of pain really is.. he might be more inclined to understand.

If it was me though, what he said would be a real "deal-breaker" I pray he never gets sick and needs YOU to understand. :-[

At the very least let him read this, by a very respected Dr. who also has CH:

http://www.nbneuro.com/cluster.shtml

Linda

edited to add link.

Title: Re: Intimacy Question
Post by CostaRicaKris on Mar 27^th, 2008, 10:05pm

My god, I'm exhusted right now and I've only been in cycle a couple of weeks. Of course you're not in the mood. I'm so sorry, he obviously doesn't have a clue what you're going through. As a married lady myself, I really hope you two can work it out.

Title: Re: Intimacy Question
Post by MJ on Mar 27^th, 2008, 10:36pm

Kitty its not you but it may be something in you.

Serotonin plays a massive part in clusterheadaches and also in sexual desire and sexuality.

I may be out of line but 5 months without desire is a long time with or without pain and like Brew said earlier its certainly worth looking at your meds or adding melatonin or something. Talk to your doctor.

Read these links to get an idea of where I'm coming from:

http://www.biopsychiatry.com/ssrisex.html

This sites selling stuff but interesting factoids.
http://www.raysahelian.com/serotonin.html

Title: Re: Intimacy Question
Post by MJ on Mar 27^th, 2008, 10:46pm

By the way I do understand where your coming from. As do most here.

Pain is a big deterrent by itself.

Title: Re: Intimacy Question
Post by E-Double on Mar 27^th, 2008, 10:55pm

on 03/27/08 at 16:18:32, Kitty1973 wrote:

Thank you all.

I just read to him what you said. He said "well, then I guess our marriage is over". he also told me that I am being "selfish"

I kinda expected that response from him.

That is a damn shame >:(
To be honest for other reasons we have had intimacy issues in our marriage and I would NEVER...........

I am so sorry

Title: Re: Intimacy Question
Post by Kitty1973 on Mar 28^th, 2008, 1:53am

I don't think I answered the question about my meds. Well the Dr. prescribed Epidrin (generic for Midrin) which is commonly used for migraine and tension headaches. It helps sometimes, but not always.

I had to fight my Dr. to get on O2. I finally got my O2 today!!

My husband and I have not gone 5 months without sex. I think the last time was in early February. I remember because it was his birthday. I doped myself up with pain meds to be able to spend a couple hours with him.

I am angry with him over his attitude. I make no effort to hide that. I think he was more embarrased that I posted this topic than anything. He is one of those people who do no wrong, and the things said here, although not nice, were things I think he needed to here from someone other than me. So many of you said pretty much the same thing that he appoligized to me tonight after work. He told me he would try to quit acting like a baby about it and try to be there for me more.

I hope he really meant that, but only time will tell. I think that it also helped that he had to go to work about 20 minutes after I had read to him what was said here, and also told him how I felt. He had no-one to argue with at work, and had time to think about it and let (at least some of it) it soak into his brain.

:) :) :)
Kitty

Title: Re: Intimacy Question
Post by BMoneeTheMoneeMan on Mar 28^th, 2008, 2:52am

Well, I differ from the opinion of the others here. At first, I was going to say to try to overcome the fatigue once in a while and give him what he wants. Obviously you cant while in the middle of an attack, but there are times when all you are is worn out, tired, and feel like you are going to wind up in a loony bin - its those times that you might want to try for some intimacy.
However, after he said that to you, I reccommend you pull your pants down and have him take a look at your ass. I would then tell him to kiss it, because it's going to be a long god damn time til he sees it again.

Course, that's just me.
Brian

Title: Re: Intimacy Question
Post by MJ on Mar 28^th, 2008, 3:01am

on 03/28/08 at 01:53:04, Kitty1973 wrote:

Hi again Kitty.

Acetominophin (tylenol et al) this drugs primary ingredient is not a reccomended treatment for cluster headache. epidrin, midrin, tylenol etc.. may indeed work for tension type headaches, a complete different beast. And like you say may occasionally take the edge off a mild cluster hit.

Unfortunately for many CH people it can make things worse, prolong a cycle, cause rebounds, among other things.

Isometheptene May help a bit in constricting blood flows but I dont know much about it and this is probably why doc proscribed it

Dichloralphenazone the other ingredient causes relaxation another no no in cluster therapies, this can potentially increase levels of pain and frequency for many clusterheads.

There are far better drugs for CH and someone will post a link I hope that you can provide to your doc.

http://www.drugs.com/mtm/acetaminophen-dichloralphenazone-and-isometheptene.html

edit to add: I'm posting in the wrong thread you didnt ask about meds, I should study up on emotion instead :)

Title: Re: Intimacy Question
Post by Kitty1973 on Mar 28^th, 2008, 3:37am

The info you just told me was in the back of my mind. I am going to print it out along with anything else to the same affect that I can find and take it to my Dr.

I was wondering why I was having sooo many hits, and why they were lasting so long. I wondered if I was on the right meds, because I saw no one else here saying anything about the epidrin.

I am so happy that you posted this. I think it will help tremedously with getting me on something that will help.

Thanks MJ

:) :) :) :) :) :) :) :) :) :) :)

Kitty

Title: Re: Intimacy Question
Post by Ray on Mar 28^th, 2008, 7:30am

Kitty:

I really feel for you. Go and fight with the medical providers to find effective relief. Try to find a headache specialist who treats cluster headaches.

Good Luck,

Ray

Title: Re: Intimacy Question
Post by KatzPurr on Mar 28^th, 2008, 8:43pm

Kitty, I wouldn't wish ch on my worst enemy, but your situation makes me think of a movie that I saw years ago. It was called "Powder" and it was about a young man who was struck by lightening, which made him very pale and gave him the power to allow others to feel suffering and pain. Everyone made fun of him and he was humiliated by his peers. One day some his enemies had hit a deer on the road and Powder (what they called him) grabbed one of the guy's hands, which instantly transfered the fear and pain of the deer to him. He was terrified as he literally felt and experienced the deer dying, but definitely understood the message loud and clear.

So I guess my point is this... if you could just transfer the horrendous agony that you feel during a ch attack to your husband, for even just one minute, he would never bother you again guaranteed. Unfortunately, that is not possible and so I'm very sorry to hear that he has lacked empathy for what you are going through. Just know that you have many supporters here who will listen anytime and who have a wealth of knowledge about this disorder.

Wishes for PFDAN Soon!

Title: Re: Intimacy Question
Post by Kitty1973 on Mar 28^th, 2008, 9:01pm

So I guess my point is this... if you could just transfer the horrendous agony that you feel during a ch attack to your husband, for even just one minute, he would never bother you again guaranteed.

I think that reading the posts from this site, not all from this post, have done as close to that as possible. He didn't act the same way to me today, he acted like he is beginning to understand some of what I go through. Hope it is gonna last!! Only time will tell. :) :) :)

Title: Re: Intimacy Question
Post by richcurtin on Mar 29^th, 2008, 1:42am

Sorry you have this so intense. Find a good doc. I have 3-4 a day for a year now, every single day. O2 is helping me, lots of coffee, and ibuprofen (never on an empty stomach)

Your husband has to understand this is not " not tonight I have a headache." I tell people it feels like someone tried to put a screwdriver in my eye and just missed and left it in my forehead for 2 hours. Not going to be in the mood with a screwdriver in your scull.

The pain and exhaustion is only part of the problem. CH also causes the hypothalamus to fail to maintain luteinzing hormone. Your sex hormones will be low. I went to an endocrinologist, my testosterone was low. I am now getting shots for six months, My last test my levels were still low and they are increasing my dose. If your hormones are off you will also lose interest in sex. The good news is that the shots help with the headaches, they are less intense.

Some others have reported sex aborting an attack, no such luck here. I found it made things no better nor worse. But don't touch me in the middle of an attack!

Title: Re: Intimacy Question
Post by Kitty1973 on Mar 29^th, 2008, 10:26am

I have had the same experience with sex richcurtin. I tried once because I heard that for some it was a quick headache cure. Well, not for me. I will never try that again.

Also in response to hormones, mine have been screwed up since 1997 when I had my youngest child. She is a little angel in heaven now. She passed on July 1st, 2002 in a lake accident when she was 4 and a half years old. Her name was Adrianna.

I had alot of complications with the pregnancy, and even more with the birth. She was born healthier than my other two, but it almost killed me. My platelet count was so low that the Dr.'s wouldn't even give me a spinal tap when they did the C-section. I had to have a transfussion after her birth.

My hormones went haywire after her birth. I was sent into a kind of early menopause. I have hot flashes every now and then too. The Dr. told me that I was not yet in menopause, but would probably experience the symptoms in a mild dose until I actually hit menopause. I tell you what though, if the hot-flashes I have already had are mild then I am really in for it, lol.

My point will the above is that maybe it is my hormones cause part of the problem, but I just know that until my CH's let up on me for a few days at least ( which hasn't happened yet since they started) my husband is SOL cause I am not gonna go through pain just to shut him up.

I must add that things are better in my house since I started this post. He is beginning to get a better understanding of these CH's. The harsh words that were expressed here about they way he was acting helped more than anything I could have said. I at least have peace about one thing for now.

Thanks alll!!
Kitty

Title: Re: Intimacy Question
Post by Batch on Mar 29^th, 2008, 3:57pm

They're not hot flashes... I'm no expert, but I have it on good authority that lady CH'ers have Power Surges...

Title: Re: Intimacy Question
Post by mezza on Mar 29^th, 2008, 8:20pm

Batch- what are power surges and how are they related to females with CH? Thanks - I am curious as a doctor mentioned estrogen related issues to me too -

Title: Re: Intimacy Question
Post by KatzPurr on Mar 29^th, 2008, 10:12pm

Kitty, I just had to check back and see how things have been going for you. First, I am so sorry to hear of the loss of your daughter. I cannot even imagine what you have gone through. Also, I can identify with the difficult birth you mentioned. Though I was spared a transfusion, I did have a very rough time delivering my son (now 13), which ultimately had to be a c-section, as well. I had HELLP Syndrome, which is a variation of pre-eclampsia/eclampsia, also known as PIH, pregnancy induced hypertension. I was very ill, but recovered and thankfully it didn't affect my sex drive or impact my hormone levels adversely.

However, I am very happy to hear that things have been better with your husband and I pray for you to have some relief very soon! Take care!

Title: Re: Intimacy Question
Post by Kitty1973 on Mar 30^th, 2008, 1:22am

That is exactly what I had KatzPurr, HELP syndrome. It was pretty tough.

Things are going better for me. My husband is doing much better about being patient. He aslo started asking me questions about CH. I haven't gotten him to come to this site yet, but most of the info I give him comes from here. He asks me things like what causes them, are they looking for a cure. He also has become more compassinate towards me. He has stopped acting like these CH attacks are "all in my head" and nothing more than a little headache. He is starting to see them for the horrible monster they are.

Batch, I would also like any info you can give on power surges.

Title: Re: Intimacy Question
Post by sandie99 on Mar 30^th, 2008, 5:15am

Kitty,

I'm glad that things are better with your husband. Asking questions is great sign! :)

Hoping for the best,
Sanna

Title: Re: Intimacy Question
Post by Sean_C on Mar 30^th, 2008, 10:18am

Kitty the most upsetting thing I read in this thread was about your daughter, I am so sorry :'( :'( :'(

As for the headaches, I think a different nuero might help. Thier are a variety of meds and combinations that might help, its just finding what works for you "this" time. Always remember, just because a med or meds didn't work "that" time, doesn't mean they won't work "this" time. The beast has a way of playing games like that. I'm also glad your on the "100%" o2, make sure you get on it at the first sign, and make sure your rebreather bag is never less than half full at all times. Most of us tape the outside air holes, but if you do that you HAVE to take the elastic strap off, you can't use it, you'll have to hold it on with your hand, just in case the o2 runs out, you wouldn't be able to breath.

I'll light a candle for your daughter, again I'm very sorry. :'(

Sean.........................................................

http://www.minibite.com/serious/images%20and%20music/flame.gif

Title: Re: Intimacy Question
Post by LivingBarometer on Mar 30^th, 2008, 10:27am

I'm happy to hear your husband is showing some compassion now.
I know it's hard to understand what CH is all about even if you are in intense pain or exhaustion it's still hard to see what's going on inside of you from the outside.
He seemed a little bit cold but you can't blame him 100% çause CH is a menace for you as well as your partner.
At least that my opinion.

I hope he won't hurt your feelings in the future by leaving you,you don't need this kind of stress the CH alone is bad enough to cope with!

The best to you ;)

Title: Re: Intimacy Question
Post by vietvet2tours on Mar 30^th, 2008, 10:32am

on 03/30/08 at 01:22:49, Kitty1973 wrote:

Batch, I would also like any info you can give on power surges.

That's called a euphemism

Potter

Title: Re: Intimacy Question
Post by puppylove41 on Mar 30^th, 2008, 3:10pm

Here is an idea give your hubby some of the meds. so he won't want it either. Then he will leave you alone for awhile. ;;D

Title: Re: Intimacy Question
Post by Kitty1973 on Mar 30^th, 2008, 7:51pm

LOL funny puppy.

I don't think I will have to resort to that just yet, but will keep in mind. ;;D

Kitty

Title: Re: Intimacy Question
Post by superhawk2300 on Mar 30^th, 2008, 8:33pm

Glad you found "here"!

Not taking sides and not giving rlationship advice. I don't think anyone mentioned that your husband (and it sounds like you as well) may need more education about this very tricky and misunderstood condition.

If I read correctly you just started having Chs in November: or around 5 months ago. As a sufferer myself it took years to understand what I do understand and it is clear there is a lot more to understand that I do and that I will never fully understand these crazy things. And to make the situation worse, the only hard and fast rule about Chs is that they suck. Otherwise everything is relative to the person having them.

Telling your husband to go blow himself is a little pre-mature IMO. All of a sudden 5 months ago you discovered you have a condition that sounds like crazy talk to the "everyday" world, and this has caused a huge rift in your relationship.

If it was me I would think my wife was making it up because she wanted a divorce or something. Unfortunatly it is your responsibility as a sufferer to get your husband to understand your condition (and you as well). You didn't ask for your condition but neither did your husband and he will have a hard time understanding for a while. I have friends and family members that do not understand CH's and think they are "headaches" and it is an issue for our family as well; and I've been a sufferer for a long time and have done lots of research and have tried hard to educate those around me.

Getting outside people to understand CH is so tough there is a special letter on this very site to help people try to explain thier condition to others. This is an issue that an awful lot of us go through. I am a little shocked that people who do not know anything about you and your relationship, who also suffer Ch and know how tricky they are to get a grip on themselves, as sufferers, would advise you to act haphazard with your relationships with others who are not sufferers and have had this sudden, mysterious change of which they know nothing about, thrust on them only a few months ago. I think the main reason for this site, that is stated, is so that CH sufferers can find people who can related to them, as people who do not have CH simply cannot. This is not thier fault anymore than it is yours or mine that we do get CH in the first place.

I hope things work out for you for the best and this long cycle of yours comes to a quick end! Either way you will find support here.

Welcome aboard the Crazy Train!

Jamey

Title: Re: Intimacy Question
Post by brewcrew on Mar 30^th, 2008, 8:39pm

Jamey - Check out post #14 on this thread.

Title: Re: Intimacy Question
Post by Kitty1973 on Mar 30^th, 2008, 8:41pm

OK,

First off I never said I understood these CH's. I only know what they do to me.

Secondly, I understand where my husband was coming from, but when you have been with someone for 16yrs, through many good times and many bad times, you need to be able to have a certain degree of trust in that person.

I didn't expect my husband to say ok, that is awful, I totally understand everything. I only expected a little patience and understanding from him. I also hoped he would try to find out some information about them, maybe ask some questions.

I know that that is the first thing I do when someone close to me has been diagnosed with something I know nothing about, I ask what is it, how do they treat it, what can I do to help. Even if I think the person is full of it, I try to find out more about the ailment before I turn away,

Title: Re: Intimacy Question
Post by Kitty1973 on Mar 30^th, 2008, 8:41pm

Title: Re: Intimacy Question
Post by superhawk2300 on Mar 30^th, 2008, 9:37pm

Bill - Awesome as usual.
Is that the only letter like it or is there a different one somewhere?
I printed a letter off to give to my boss years ago but I don't remember it being that one.

Kitty - Sorry if you took offense to my reply to your question, none was intended. My intention was to give you a perspective you may not have had in order to help you the best way possible.

I understand where you are coming from, but I also can see where your husband may be coming from. I didn't mean to imply you should know everything about CH - my point was that no one does and no one ever will - that is a big part of your problem.

Again, it is not my place to give relationship advice and I wasn't taking sides. You asked a question about intimacy and I just wanted you to be aware of what I saw as a potential situation.

To put it simply I can see ONE side of this no one has mentioned and that side looks like this:

You haven't had sex with your husband in a long time - looks like months. You tell him it is because you either have had a "headache" or are tired from having a "headache". Isn't having a headache the classic lie when someone doesn't want to have sex, similarly to a girl telling a guy she can't go on a date because she is washing her hair when the truth is she just doesn't ant to go out with him?

I can see where he might think you are either 1) BS'ing him or 2) are being truthful but assumes you don't care about him enough to ignore a simple headache to get intimate with him. I am sure the bottom line to him is that you are chosing not to be intimate with him, for whatever reason, and after 16 years of marrige I am sure he is confused.

I am not judging or blaming you (or him for that matter). There is no "right" or "wrong". I think it would be a shame to throw it all away over stupid CH's.

That being said I think if he doesn't understand what you are going through you will never get the understanding you seek. You'll never get there though if 1) he thinks you are lying about it (remember you are giving him the classic line about not wanting to have sex) or 2) he can't understand anything about CH.

I am sure that blaming him won't help you at all though. It never helps except if all you want out of the situation is to make yourself feel better.

Maybe my point is dead wrong and this guy is just a dick and you should file divorce papers ASAP. But if he was, you wouldn't have stayed married to him for 16 years, right?

So this is something almost every clusterhead has to deal with on some level and it is up to you to find a way to deal with it. Sorry, I wish I had better news. I bet your husband is no more a dick than my boss, some of my friends, and some of my family members, all who like/love me. Sounds like this could be leading to serious marrige trouble for you. As much fun as it would be to rip your hubby on here in a new and creative way, I respect your request for an answer enough to give you what I see as a different side, and a straight shot at it, with the best hopes to help you through your tough time.

If I told everyone in my life you didn't understand my Ch to piss off, I'd be a lot lonelier when I am not in cycle. If you really feel this impass is worth ending 16 year of marrige, by all means, go for it. Please do not make any dramtic life changing choices if you are exhausted from fighting the demon though. Wait until your head clears first. To me, the more I alter my life the more the demon wins.......

Again good luck to you and I am praying your Pain Free time returns quickly!!!!!!!

Title: Re: Intimacy Question
Post by brewcrew on Mar 30^th, 2008, 9:40pm

There might be other letters, but that's the only one I know of and the only one I've ever used.

Title: Re: Intimacy Question
Post by Kitty1973 on Mar 30^th, 2008, 11:54pm

Ok,

I see your point, but how can anyone who has been married to someone for 16 years watch them literally screaming, banging there head into walls, and crying for 5 hours and then say "wanna go to @#%#"?

My husband and I have been together long enough to know when the other one is full of it. I didn't just have the occasional attack, I was having them many times a day for months. I was told by a member here on this site that the medication my Dr. had prescribed to help me with the pain of these attacks might actually be prolonging them. I stopped taking the pills, and started O2 instead. That has helped me so much. I truly believe that the pills were putting me in more pain, more often than without them.

I still have the attacks, but they can usually be knocked out by the O2. They are not nearly as painful either.

I just posted this topic to get advice on how to talk to my husband about something that I don't know much about I could only tell him that the CH's hurt like a $%&#@ and that it made my whole side of my face hurt. I was tired all the time.

Here was my average day when I posted this topic:

6:30am-- Get up and make sure the kids get off to school and hubby is off to work.

7:30am-- Kids are off to school, and hubby is at work. Now I can sit and rock back and forth, talk a walk, etc to make the pain go away.

8:30am-- Still in pain, nothing seems to help, gotta ride it out again.

10:30am-- Pain finally going away. Time to go get the mail, and run any errands I have.

11:30am-- The pain is starting again. Not too bad this time, walking in cold helps after about an hour.

1:00pm-- Time to eat something while I can. Sit down on couch or at computer and relax

2:30pm-- Another hit, hope it is gone before the kids get home.

3:30pm-- Kids are home, pain is getting very bad. Want to scream but I can't, don't want kids to see that.

4:00pm-- Pain going going gone.

5:00pm-- Hubby will be home soon, gotta get supper going.

6:00pm-- Supper on table. Can't eat right now cause even my jaw is hurting now.

7:00pm-- Kids are asking for help with homework. Hubby doesn't know the answers, so they come to mom. Jaw doesn't hurt anymore, but pain is lingering in temple.

8:00pm-- Kids are getting ready for bed now, homework completed. Pain is gone once again for now. Time to go relax with hubby in living room.

9:00pm-- Kids in bed, no pain yet.

11:00pm-- Time for bed. Fall right asleep.

1:00am-- Woke up with a doozy. Go outside to garage and scream so I don't wake anybody up. Sit in corner and rock back and forth. Get very cold and go back inside. Sit on couch and cry, rocking back and forth. Can't sit anymore, so I pace around room.

3:30am-- Pain gone. Totally exhausted I go back to bed

6:00am-- Alarm wakes me up. Still tired, and pain is there, but not too bad yet. Time to get up and doo it all again.

The above I copied out of a diary I was asked to keep by my Doctor to document when the attacks happened, and what I did/was doing.

That was the way I went for months. I was just too tired to think about anything, let alone tell someone else anything other than I am soo tired, and I hurt all the time.

My behavior was noticed by my husband. He said I looked like someone hit my in the eyes. Dark circles under them all the time. He knew there was something wrong, he even asked if it could be a tumor. When the CT scan came out normal and the doctor told me I had clusterheadaches, he listened to her say that they were extremely painful, and that there was no cure for them.

So how could he have possible thought it was "just an excuse"? We don't have the greatest marriage of all, but we have always been there for each other, until this. Maybe I was just hurt and shocked by his attitude toward the whole thing, and came here for support. But then again that is why we are all here right? For support and whatever answers we can find here.

Title: Re: Intimacy Question
Post by Kitty1973 on Mar 31^st, 2008, 12:02am

I forgot to add that I took no offense to what was said. I just don't want you to think that I am just "using the CH to avoid intimacy". I think there is more to that than sex, there is the holding each other while watching a movie, going somewhere without the kids, etc. My husband and I are working through this now. Like I said before, I just needed a little help in talking to him about the whole thing. I am getting control of these CH's now. O2 has helped me so much. I am not as tired anymore, and although I have yet to have a totally pain free day, I am pain-free more than I am in pain now.

I don't know how the other post got on there twice, but it was only supposed to be there once. Sorry bout the duplicate.

Kitty

Title: Re: Intimacy Question
Post by Annette on Mar 31^st, 2008, 2:23am

Hi Kitty

Firstly I would like to send you a great big hug. I am a supporter for my husband who has CH and I am so sorry to hear you are going through a hard cycle and having extra problems to deal with too. I would like to offer you my support, please feel free to email or PM me anytime.

Secondly I would like to say I am amazed at how functional you remain despite getting hit hard daily for months. You sure are one strong lady. My hat off to you.

But then I couldnt help but thinking your determination to keep the household going may have caused your husband to misunderstand you. I can see from your diary that since he was away during most of the day, he wouldnt see how often you were hit and how bad they were during the day. Then at night you went out to the garage so again he had no idea you didnt get enough sleep.

As you managed to keep house and home going, including helping the kids with homework, your husband may think that the headaches " cant be that bad ". His reasoning might have been " if she can do all that, why cant she be intimate ? ".

Us women tend to be like that, we sacrifice ourselves and put everything else before us, even when it comes to health. A woman tends to grit her teeth and push through housework and caring for the children even when she really cant cope with it all.

I believe understanding and good communication is key here. You need to let your husband know how HARD it has been for you, that it takes literally ALL of your energy to keep up with daily living, and you are truly too exhausted for anything else for now.

Good luck and painfree wishes to you.

Title: Re: Intimacy Question
Post by sandie99 on Mar 31^st, 2008, 2:35am

Kitty,

did you show your ch diary to your husband? At least the same day schedule you showed us? If not yet, do so, because it shows very clearly what you're going through.

Wishing you PF time,
Sanna

Title: Re: Intimacy Question
Post by DragonSlayer on Mar 31^st, 2008, 2:42am

It is good to hear the O₂ is helping you!!

Just a reminder; I hope you discussed stopping the pills wth your Dr.

When you get your treatment plan sorted out you should be able
to get back to your "normal" self. These things can be a real drain on
anybody. The pain, lack of sleep, side effects from meds, and the
depression we all slip into during the battle with this beast.

Please remember to live between the attacks, enjoy every pf moment,
glad you are starting to feel better.

Title: Re: Intimacy Question
Post by KatzPurr on Mar 31^st, 2008, 3:13pm

My goodness Kitty, I concur with Annette. I cannot even imagine keeping the house together the way you have during a ch cycle. I was literally in bed for days when my ch peaked and I have only just been able to start getting back into life again after my bout, which lasted about 2 months. I had to stop playing tennis and pretty much was a recluse in my home for weeks. I do understand you not wanting those you love to see you in pain, but I find it is ultimately inevitable when the hits are coming fast and hard. Of course, I have been dealing with this beast for 32 years, so my husband knows what to expect and I'm thankful that I don't have to try to be supermom, superwife, superfriend etc. because frankly, I wouldn't be able to cope.

I'm so happy to hear that you are doing better though and I hope that your family and friends will give you the support you need. Please feel free to contact me anytime if you just need to vent or are having a rough time. We have all been there and we care!

Title: Re: Intimacy Question
Post by Ungweliante on Mar 31^st, 2008, 6:31pm

No offense to any of the guys on the board, but men can sometimes be slow at understanding emotional things. I say emotional things here because your problem isn't just cluster headache - it's also how they are affecting you.

We've also had the sex talk with my bf. It took him months to really start to understand this, but I think the first couple of months he also needed to come to terms with this. It's really not easy to see one's gf/wife in a lot of pain.

Also, to get back to the emotional stuff, for a lot of guys sex is a very physical thing. Then again for us, it's an emotional thing. My bf couldn't understand for the longest time how my emotional state can affect the desire for sex - for him, it's basically always "go!".

A couple of nights ago I explained to him that on top of me being in a lot of pain, I'm also very exhausted after the constant attacks. Plus also I'm worried about the next attack coming, so I can't enjoy the painfree time between them. When they hurt so much, it's very difficult not to worry about them. And when I'm worried about being in pain soon, I don't feel very sexual. Sexuality comes from feeling safe, comfortable, that your bf/husband understands you, the feeling that you're meant to be together. He seemed to be able to understand that, at least in some way.

I hope you'll be able to have good discussions with your husband. After all, you have kids and are married. Just don't forget that even if you're in pain, he is probably in pain as well, just differently. And guys often have a very difficult time showing or expressing their feelings or thoughts concerning their feelings.

I wish you all the best. Hopefully things will sort out.

Best wishes,
Rosa