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        Supporter's Corner >> Supporter's Corner >> Help me understand,,,?
        
(Message started by: PJandTrip on Jan 21^st, 2004, 12:02am)

Title: Help me understand,,,?
Post by PJandTrip on Jan 21^st, 2004, 12:02am

Help me understand. I have recently met the most wonderful man I have probably ever have the privaledge of knowing. However, he has suffered from Cluster Headaches for many years as he has expressed to me. And even tho, I have been a nurse for many, many years, I find myself, "inept", in this area, and quite usure as to how to support or help him. I know, many medical things, but it all seems so unimportant, when you are unable to help and take care of the one that means the most to you. Basically, I need an "education" from you that have all the knowledge. It feels like my years of education, have no value or use as this is a subject that is "unknown" to me. Being a nurse, I understand the "I dont want or know how to deal with this" dilemna, from Doctors for many years. Just looking for a "real" education from those who really understand and know about this, so that I can be the support and help that a real life partner should be. I look forward to hearing from anyone who can spend the time to educate me on this subject.
I want to know, want to learn, and definetely want to understand, so that I can help him be the best that he can be.
I look forward to hearing from those who can help me, help him. He is not suffering now, but, may in the future, and that scares me, not knowing, what I can do to help him when he needs it. I can treat cardiac arrest blindfolded, but, feel quite insecure, knowing what to do when he needs me.
Just want to learn, and be aware, and will appreciate anything those of you, that have "been there done that", can share with me. Nobody should have to suffer through this, and anything that I can do, to make his life ok, is worth the world to me.
PJ

Title: Re: Help me understand,,,?
Post by TxBasslady on Jan 21^st, 2004, 12:21am

Hi PJ,
Welcome to the board.

Probably the best thing you can do now, is read the other posts here in the Supporter's Corner. Those posts will give you invaluable information. You can and will see how other supporter's handle the situation with their sufferer.

Read all the links to the left. They will give you an insight as to what meds are commonly used. Keep in mind, that not all meds work for all.

I am a sufferer/supporter. I have been pf for 134 days now, due to a Prednisone taper.

You didn't mention what meds he takes, when he is in cycle. You mention that he is not currently in pain, so is he episodic?

Another good idea is to get him to come here and read the info and even interract with the board. This board has been a Godsend for many here. You will find no place that has the support that this board has.

Please stay with us, and let us know how he is doing. And by all means.....read....read....read.

Best wishes to you......and in my personal opinion....the support that you give to him while he's suffering, will come from your heart. It's not really something you have to practice up on. If he is someone you love...then the support will come naturally.

PF vibes,

Jean

Title: Re: Help me understand,,,?
Post by Ree on Jan 21^st, 2004, 8:09am

Can i say what I think is the most important issue and way to support your loved on in all this... It is merely to believe their pain and know that there is nothing that quite compares to it... No matter who you tell, they may not be able to relate to you and your sufferer because they don't know how horrendous this is or will compare it to head pain that maybe they have. You will tell friends about this and they will say "Oh ya I get those" or "tell him to take excedrine" it is just maddening... \

read read read. learn learn learn, and educate everyone you know... It is not a condition that is used for attention. The pain that is felt cannot be faked or exaggerated in any way, it is genuine. My best friend is also a nurse and also had trouble absorbing this condition when she learned about my hubbys case. Even the docs at the convention said that there are only about 5 hours of training on the subject of cluster headache. I find this mind rattling............good luck and visit often we could use another supporter around here and also your expertise..........love to you Ree

Title: Re: Help me understand,,,?
Post by Margi on Jan 21^st, 2004, 10:16am

Hi PJ, welcome. You're getting some excellent advice here - your best defense is to educate yourself and leave no cluster stone unturned.

I have to ask....your user name is PJ and Trip. Is that Trip that used to post here (on the old message board format)? If so, you've found a jewel, PJ. Take good care of him.

All the best to you both.

Title: Re: Help me understand,,,?
Post by Jackie on Jan 21^st, 2004, 11:27am

Hi PJ,
I'm married to a clusterhead...many years chronic.
You have displayed the desire to help your clusterhead....that's and excellent start. Understanding as much as you can is key. Also communication with him is all important.....
You'll be fine...just fine. We'll be here to help you too.

Hugs,
Jacks 8)

Title: Re: Help me understand,,,?
Post by Woobie on Jan 21^st, 2004, 8:24pm

HI Pj and Welcome ...

That's cool that you want to support him.. dont be afraid...

ASK him what you should do. He might want you to do NOTHING. My husband = when he's getting hit - goes into seclusion = doesn't want me around. ... Doesn't want me to do anything.

I, myself, am OK with this. ;;D I just make sure he has coffee and a smoke when he's done.

Dont expect sex either, when he's in cycle. ;;D....(just a warning for ya! And don't take it personal.) ;;D

Tina :-*

Title: Re: Help me understand,,,?
Post by ClstrHeadSupport on Jan 22^nd, 2004, 5:01pm

I to had no idea, nor had I ever even heard of Cluster Headaches. When I met and fell in love with someone that suffers from them I made it my mission to understand. He wasn't very open about the pain, because of his relationship before me he was made to feel like his pain wasn't adequet to be complained about or cried over. I could often tell he was holding back from showing just how much pain he was in. I researched everywhere online possible. I looked into doctors and websites, and was lucky enough to find this one. And it's the only one I've been to that has all the information you could need. I personally think that a good start is finding out the physical aspect of it before trying to figure out the medical aspect of it. You can do this by reading the message boards that the actual sufferers post to. The next step would be probably looking into why doctors think this happens, medications and doctors. And all the while I'd visit here, the supporters corner. It's a place you can both vent, and cry to others that actually understand. I wish you the best of luck.

Title: Re: Help me understand,,,?
Post by PJandTrip on Jan 23^rd, 2004, 10:12pm

Hi Everyone.
Thank you so much for all of your support and words of wisdom. I will read, read, read and try to learn everything I can. And of course continue to seek your counsel on here when neccesary. Yes, he is the "Trip" from times past on this message board. And yes, he is a "jewel" as far as I am concerned. I have never in my life, cared so much about someone else's welfare and felt so defenseless to be able to support him when he needs it. So, I suppose I needed to establish some "pre-support" that is available when I do need it. Not so much for me, but to attempt to care for him, the way he deserves. I do not want to be one of the ghosts of the past, who discard, or make no attempt to understand or support him with something so life-impacting. Whether he never has another one, or he has them forever, it does not matter, it is part of him, and I want to be a part of that, for him. I will continue to learn, and ask and seek your support. It is wonderful to know, that people like all of you are there, to provide some of the answers. He is a "gift" to me, no matter what, and I want to be able to treat him as such, in every aspect. Hope to keep in touch, and thank you for all of your words.
Sincerely,
PJ :)

Title: Re: Help me understand,,,?
Post by Margi on Jan 25^th, 2004, 7:23pm

Well, PJ, it sounds that our buddy Trip is in very good hands. Kudos to you for trying to educate yourself before Armageddon hits. You'd be surprised how many supporters are out there that don't ever go that extra mile.

If you ever need anything, feel free to ask here. You're amongst friend and fellow warriors, ok? We've always got room to take one more under our wings here.

Say hi to Trip for us and tell him that we're glad he's still in remission.

Keep up the great work, PJ!!

Title: Re: Help me understand,,,?
Post by PJandTrip on Jan 25^th, 2004, 8:55pm

Thanks for the response Margi. I know Trip thinks a lot of you, and I have heard your name several times in conversation, so it was nice that you resonded. I do appreciate it.
He also seems to think, that my writings are a bit, "soap opera-ish", whatever that means, so, maybe I should not write on here so much about my feelings and such. Not sure, just wanted to reach out, and be better educated for the future.
Maybe it was not my place to be here,,, or maybe I just wrote the wrong kinda things. It was new to me, just trying to figure things out.
But, it is good to know that you are around,,,
and, I thank you.
Take care,
PJ

Title: Re: Help me understand,,,?
Post by mediccpc on Feb 3^rd, 2004, 4:27pm

I was in the same boat. My then girlfriend was a nurse, and when she could not help me she felt uncomfortable with my cluster season. The best advice I could give you is be as supportive as you can. There is not much anyone can do. Once the beast rears his ugly head, without Imtrex or something he is there for the ride. My then girlfriend did learn to cope and be supportive, so I made her my wife. Hang in there.

Title: Re: Help me understand,,,?
Post by Margi on Feb 3^rd, 2004, 4:41pm

Hi PJ,

I'm sorry - I didn't see your post until today!!

Of COURSE you're welcome to write about your feelings here!! That's why DJ gave us our own forum. You tell Trip I owe him a kick in the butt for his "soap-operaish" comment! MEN!! ::) LOL We may not understand clusterheads' pain, but ... guess what - they don't understand ours either!

You talk all you want here, honey - or if you'd feel more comfortable to talk off the board,my email is moxie_miss@hotmail.com. I also chair the Family Services Team here - we're here for the supporters.