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        Supporter's Corner >> Supporter's Corner >> Trying to support my ex
        
(Message started by: outside on Jul 17^th, 2002, 12:42pm)

Title: Trying to support my ex
Post by outside on Jul 17^th, 2002, 12:42pm

My ex-husband has been a CH for years. I actually believe that it was the cause of him leaving me. We were married for 10 years and I tried so hard to convince him to seek help to cope with his headaches. He refused to let me into his personal hell and insisted on suffering alone. The pain eventually wore him down and he just couldn't cope with anything anymore. He was making really bad choices in his life and getting depressed. That is when he finally made the decision to file for divorce. He just wouldn't let me help him and his family refused to even acknowledge that he had an illness. We have been divorced for three years and have a daughter who is now 3 1/2 years old (yes, you can do the math on that one and realize he left me when I was pregnant). We see each other everyday and are really good friends. The problem is that it is so hard to see him suffer. He always has that tired worn out look on his face, and I can tell just by looking at him when he his having an attack. And now that he lives alone I worry about him all the time. This morning he was an hour late to pick up our daughter and I can't even describe the fear that came over me. And of course when he finally appeared he admitted that he had been up since 2 am with a headache.

I have moved on with my life and do not wish to reconcile our marriage (neither does he). However, I still care deeply for him as a friend and as my daughter's father. He acknowledges his diagnosis of clusters, but refuses to accept that they alter his way of life. I just want him to get help in coping better and to improve the quality of his life. I would be forever grateful for any advise on how to help him.

Title: Re: Trying to support my ex
Post by Margi on Jul 17^th, 2002, 1:28pm

Wow, Outside - your post touched me. Like you would NOT believe...

Being a 'live-in' supporter is hard enough. I can't imagine the pain you go through, not being able to be there yet still knowing he is getting hit. Well, actually I can to some extent. Over the years here, I've gotten to know some of the cluster peeps here quite well and I worry constantly for the ones that are alone or have no support at home. At least if we're there with the sufferer we can feel somewhat useful by bringing them what they need - or just giving them their space - when they're under attack. Not being able to do that makes our job even MORE heart wrenching. :'(

I AM sure of one thing though. I'm sure your ex-husband really DOES appreciate that you are 'out there' and he knows you intimately understand what he goes through. As to your question of how you can help him, I think just your knowledge and compassion for his affliction probably helps him more than you realize. The fact that you just automatically understand if he's late and that he knows you do worry about him, probably means the world to him. He knows he can still call you if the walls start closing in on him, and THAT is priceless too.

Keep up the GREAT work you're doing, Outside, and PLEASE feel free to email me anytime at moxie_miss@hotmail.com if you need a shoulder. I'm a supporter too. And, again, I do understand what it's like to support 'long distance' like you do.

Hang in there, new friend.

Hugs

p.s. one of the biggests gifts you can give him is the address for this website. If he doesn't have computer access, you could print out some posts and blurbs on the different treatments we've all tried. It might really help him to know he's not the only clusterhead in the world. I think all our sufferers have been at that point in their lives and that's got to be soooooo scary.

Title: Re: Trying to support my ex
Post by Darleen on Jul 18^th, 2002, 6:57am

Hi Outside,

Oh my God!!! As Margi said so well (as she always does), I can't even imagine what you are going through and have gone through. I also support my husband who suffers from these damn things. If he doesn't have access to a computer maybe you could print off some of the information found on this wonderful site and give it to him. This has been a lifeline for me since I have found it because now I know that there are others like me and John who suffer and support as we do. There is so much information in regards to treatments, medications, and so on that it can actually be overwhelming.

I'll keep you both in my thoughts and prayers.

Lots of love to you both,
D :)

Title: Re: Trying to support my ex
Post by Donna on Jul 18^th, 2002, 9:58am

Dear Outside:

Yours is one of the most difficult positions.........being on the outside. And there's nothing you can do unless he allows it...........except (and this is a biggie) get information to him regarding the various meds. He will probably find one (or two) that will help and allow him to resume a "more normal" life. He may not now admit to the fact that ch 's are altering his life, but if he found some concrete help, maybe he'd wake up and realize just how much ch IS altering his life and he might be able to change it.

You must be a very understanding and caring person. He is so luck to still have you as a caring friend.

Please let us know how things are progressing because we do care and want to help if we can.

Good luck to you both.

Title: Re: Trying to support my ex
Post by outside on Jul 18^th, 2002, 10:16am

I am absolutely touched by all your responses. I will definetly be visiting here often. I finally have people who understand...and that means the world to me. My biggest hurdle right now is just getting my x to admit he has a bigger problem than just a "plain" headache. He has been brain washed by others who make him feel like it should be no big deal...it's just a headache...we all get them...why should you be any different. I think he feels like he is some kind of failure because he can't "be a man and deal with the pain". So he's still in denile and insists on suffering alone. This site is a big help and your support and advice will be put to great use in trying to get inside the walls he built up around him.

I am a christian and believe strongly in prayer. So please remember him in yours.

Title: Re: Trying to support my ex
Post by Donna on Jul 18^th, 2002, 10:22am

Please find comfort in the fact that there are many Christians here reading your request and you , he, and the children will undoubtedly be mentioned in our prayers.

Love and prayers,
Donna

Title: Re: Trying to support my ex
Post by Margi on Jul 18^th, 2002, 10:42am

Well said, Donna ;)

And, Outside - YOU will be in our prayers too, rest assured of that. Don't lose sight of the fact that your ex IS going to want to help himself too though, ok? We supporters can turn ourselves inside out trying to help someone, but he's got to take part in his treatment too. Is he on any meds or trying ANYTHING to help?

Keep talking, girl - you're among friends here. :)

Title: Re: Trying to support my ex
Post by outside on Jul 18^th, 2002, 1:07pm

Margi,

Yes he is on meds. When we were married he had a doctor that had no idea what he was doing and just kept switching his meds on him. And since he had no idea what he was dealing with he just went along with it....totally messed him up...and since he wouldn't let me get involved it was hard for me to know what was going on either. He now has a different doctor and the last I knew he was taking Imitrex. However, he is still pretty closed off about it so I have to walk on eggshells when discussing it with him. Does Imitrex work? Are there side effects?

Thanks for the insight....you guys are sooooo GREAT!

Title: Re: Trying to support my ex
Post by Darleen on Jul 18^th, 2002, 1:10pm

Hey Outside,

Please do keep in touch with us. I'm very lucky in that John is not chronic and he surely knows and acknowledges the headaches but even when he is not suffering I check in with the site every day because after a while this place becomes home and it doesn't take long - believe me. Everyone here is extremely supportive and helpful and sometimes I just come here to vent and people always try to make me laugh.

You and he are both in my thoughts and prayers.

Kepp talking - we're here to listen.

Lots of love,
D :)

Title: Re: Trying to support my ex
Post by Margi on Jul 18^th, 2002, 1:15pm

Hi again :)

Yes, Imitrex CAN work for lots of folks (both clusterheads and migrainoids). It's an abortive, meaning that it's supposed to stop an attack from happening.

Yes, there CAN be side effects - scary ones. Biggest one is increased risk of heart attack and I do know a couple of sufferers who have actually had a heart attack the first time they took it. It doesn't work for everyone and even if it does work for a sufferer, it may not work every time.

Verapamil has a pretty high success rate, and so does Lithium. Prednisone (steroid) can break a cycle, but once the course of it is stopped, the pain can return. I, personally, believe though that a lot of these meds prolong cycles and increase the number of attacks even though they may mask the pain a little. That's just me, though. There are some alternative preventative treatments out there that are getting a good success rate.

You said he had been up one night since 2 am with a headache though, Outside. How long do his attacks normally last? That's really a long time for a cluster attack. HAS he been diagnosed by a cluster-knowledgable neurologist? Reason I ask is that if he is private about his pain, he may not be telling his doctor everything. If the doctor misdiagnoses him, he may not be taking the right meds.

Title: Re: Trying to support my ex
Post by outside on Jul 18^th, 2002, 1:46pm

Margi,

When he says he's been up since 2 am, that means he woke up at 2 am, suffered until he gave in and took some meds, stayed up because he was afraid to go back to bed, and then finally fell asleep just when it was time for him to get up. So to him it feels like he's been up all night.

As far as his diagnosis, I am not sure what expertise his doctor has. However, he would have answered "yes" to all the cluster symptoms in the cluster quiz, and after reading what everyone has to say on the subject in here he definetly fits the profile.

Is there a medical field that specializes in the illness? It seems to me that finding the right medical help is a huge step for sufferers.

Hey...did I mention that you guys are absolutely the best....there is so much information in here it is unbelievable!

Title: Re: Trying to support my ex
Post by Margi on Jul 18^th, 2002, 1:52pm

OK, that's exactly the answer I was looking for. Fear of sleep is a huge common thread here. I know I'm not the only supporter out here who has spent many a sleepless night, waiting for the next attack to hit. REM sleep is a trigger 9 times out of 10.

Another thing he can try, then, is Dramamine. Yes, it's a motion sickness drug, but it produces sleep as a side effect but it doesn't let him get into REM sleep. It's available without a prescription, often in generic 'Travel Tab' form. Benadryl has also been known to cause the same relief. Sometimes just getting one night of solid sleep can make him stronger to fight through the next day. Might be worth a shot for him? It doesn't work for everyone, but ya just never know until ya try, right?

As to specialists for clusters - neurology IS the field that addresses it. If you go to the OUCH Website button on the left - there is a list of recommended doctors in the pulldown menus. These are doctors who our sufferers have visited and we vouch for their familiarity with clusters. Also, Outside, visit us at the Family Services Team - we can help you and your daughter cope with life in Clusteropolis. :)

Hugs,

Title: Re: Trying to support my ex
Post by outside on Jul 19^th, 2002, 11:58am

Everyone has been a great source of info. I appreciate the weight you have lifted.

I am going on vacation for a week, but will check back in when I get back.

Thanks for all the new friendships and mostly for listening. Talk to you in a week.

Title: Re: Trying to support my ex
Post by Svenn on Jul 25^th, 2002, 2:49am

I`m just reading your story with tears in my eyes.so this has to be a short answer.Lissen to Margi ,you hear.
She is a true friend for all of us

I just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway

Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily

This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway

Take care my friend

Svenn

Title: Re: Trying to support my ex
Post by Ree on Aug 7^th, 2002, 10:39pm

How did i miss this one... Outside you are a great supporter I dont know if I continue to support if I was on the outside trying to start a new life... Kudo's to you kid... and
Great advice fellow supporters you make me proud to be part of this great group... I love you all

~~just ree