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        Supporter's Corner >> Supporter's Corner >> I am new and trying to understand
        
(Message started by: lcollette on Jan 31^st, 2006, 9:38am)

Title: I am new and trying to understand
Post by lcollette on Jan 31^st, 2006, 9:38am

[smiley=huh.gif]I have met this wonderful man a month ago. And to his credit the first thing he told me is that he had CH. Of course I was one of a million that never heard of them. Since he is worth everything I decided that if a relationship is to be then I was going to do some research on CH. To me there is power in knowledge & understanding. A relationship can survive.

At first he didn't believe that anyone would want to be involved with someone like him. (clusterhead). But I think I proved him wrong. He has answered all my questions that I asked about CH. But right now he is having a really bad cycle this time. If it wasn't for this website I wouldn't know what to do. Now I read it everyday. It has really helped me understand what is going on. Hope in time I can help others too.
Lauana

Title: Re: I am new and trying to understand
Post by Jackie on Jan 31^st, 2006, 9:49am

Hi Lauana....welcome to the site. I'm married to Blake.... he's suffered for many years.

You'll make a good supporter......understanding is very important. Also, education is key.....knowledge is power.

This site will get you all through ....
Make a plan for the tough times and you all will be OK. Remember, there is always someone around her to help you.

Good luck, Sweetie..

Jackie 8)

Title: Re: I am new and trying to understand
Post by lcollette on Jan 31^st, 2006, 10:11am

Thank you Jackie:
I think that some of these sufferers feel that they are not lovable because of CH. But they are. Right now I haven't heard from him, and that makes me nervous. I know that when he can, he will call. But still.............I think that we all want them to be save. I just have to get use to the head banging, screaming, etc. I know in time that I will see it all....and I have to be ready, and I will be.....God love them all.......They are in my prayers and thoughts daily.

Lauana

Title: Re: I am new and trying to understand
Post by miapet on Jan 31^st, 2006, 10:55am

You're wonderful . . . .education is the best . . we canbecome our CH-ers best advocate . . .thier voices when the beast is not letting them be heard . . .

Anyway, D is my other half . . .he has had CH for 20+ years, was chronic for 20 . .. and thanks to this corner of the web we have had a whole new life.

*positive light and energy*
miapet

Title: Re: I am new and trying to understand
Post by Margi on Jan 31^st, 2006, 12:06pm

on 01/31/06 at 10:11:57, lcollette wrote:

I just have to get use to the head banging, screaming, etc.

Lauana

:'(

aw, honey - it doesn't have to be like that!! There are so many more pain relief avenues to pursue now to manage the pain. We don't have a cure yet, but we do have SO many more options than when these guys first were diagnosed or first felt the pain.

What meds is he on? Has he tried oxygen yet? Please tell him about this place and invite him to introduce himself here. That, in itself, is huge in cluster therapy - finding others like himself. There is a wealth of knowledge here and so many weapons in the arsenal now.

Just breaks my heart to hear of a clusterhead screaming and banging his head. :(

Title: Re: I am new and trying to understand
Post by mrs mac on Jan 31^st, 2006, 1:28pm

hi there

i too am a supporter!!! My clusterhead has been suffering now for 2 years, all i can advise you is just be there for them when they need you!!!

it is one of the hardest things to witness, and i still find it so hard to deal with at times!!!

Margi had put some links to some good supporter links, maybe she could post them again, they are very good reads and describes us supporters to a T!!!!!

hope you ClusterHead gets some pain free time soon

tc, and let us know how you get on

sandra xxxx

Title: Re: I am new and trying to understand
Post by E-Double on Jan 31^st, 2006, 1:45pm

Thank you and read these as well as have him do so!!!!

Knowledge will help you help him advocate for himself!

This is a great resource to know like the back of your hand...print it out and give it to the doc

http://www.brightok.net/~mnjday/chtherapy.pdf

It will present the appropriate treatments that you should seek and your doctor should know!!!

If you want an abortive with the least amount of side-effects O2 should not only be requested but demandedfrom your doctor!!!

http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm

I have used Zyprexa as an abortive and have found it to work (for me) as fast as Imitrex and without the "hangover"

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1120904753

If you do have the "typical" wake you up in the middle of the night horrors then.... Melatonin might be very helpful
Many of us (myself included) have found that taking 6-9mg (some take more) about a 1/2 hour to 45minutes prior to bed have Knocked out the night visits and can finally get sleep.

With the exception of 10-12 times.....I have slept through the night since August '04 (went chronic in March 05).....Still get hit during the day but my overall quality of life is better because I am not as exhausted all the time.

Some people report that it seems to make them worse....The fact is that we are all different and respond differently to everything therefore it may or may not...

The one thing I will tell you as far as my experience was that I had to stick with it...The first night I took melatonin, I was awoken with a doozy only I was too groggy to find my O2 .....It got a lot better for me....I then slept through the night but would get slammed about 1/2 hour after waking up....kinda like knocking the beast off schedule.....then again I was peaking and this cycle has been all over the place with no real pattern.
I stayed with melatonin and have had decent sleep overall. (Maybe I should start folowing my own advice again hahahaha!)

It may help and it is natural with not too many sideeffects....also ask your doctor b/c if there are any side effects or contraindications...I think they have to do with mild depression.....

Best wishes, good luck & stay as positive as you can!!!!

Eric

Title: Re: I am new and trying to understand
Post by lcollette on Jan 31^st, 2006, 1:53pm

:) Thank you all. Since this is all new, the drug names haven't stuck in my brain....I know that O2 doesn't work for him and he is on Lithium and of course a few others. Still learning. He has been a CH for over 3 years. Always answers my questions. Never hides anything from me.....So you can say that the communication is good.

I feel really bad because he feels bad that he had to cancel a lunch/dinner with me. Keep telling him that there will be more days/nights to come. What else I am to do....????? He is not a chronic yet but is afraid that it is becoming that way......Hurts to hear him say that he has fears of sleeping....... Anyway thank you again for all the support, will be talking to you all again, I am very sure.
Lauana

Title: Re: I am new and trying to understand
Post by E-Double on Jan 31^st, 2006, 1:58pm

The thing with us CHers is that just because something hasn't worked in the past it doesn't mean that it will not the next round.

Oxygen is probably the safest bet with all of the crap many of us have to take.

Push it on him again and make sure that he has the proper set up.

Many try Oxygen but when educated realize that they were not using it correctly!

I love it!

Hugs and PF wishes to you both!

Eric

Title: Re: I am new and trying to understand
Post by princess922 on Jan 31^st, 2006, 2:04pm

hend banging , rocking, screaming, crying, I have witnessed it all and it is frightening as well as concerning, but I also have learned that, it is a way that they deal with the pain. I have found that there are things that they do to help, for instance, sometimes I have to be next to my guy and just hold my hand on his back, or let him rub my leg, for some reason, comfort or other it seems to relax him a bit, but each time it is different

Title: Re: I am new and trying to understand
Post by lcollette on Jan 31^st, 2006, 2:17pm

Princess922: He has told me never to touch him that it hurts too much. But I never thought that maybe he could touch me....thanks

After a night from hell, he goes and has a TENS treatment and he said that it help with the aftermath.
Lauana

Title: Re: I am new and trying to understand
Post by princess922 on Jan 31^st, 2006, 2:51pm

All this is new, years ago I couldn't be in the same room when he had one, just this cycle we are in now has he asked me to just touch him, I walk on eggshells everytime he gets one, my usual routine is to leave the room, however it is with the light on or off, tv same thing, but I can remember going out to dinner and he had chicken for dinner which triggered one, and we were in the truck and the sound of my jacket if i moved jsut sent him through the roof, but there are so many options to at least try to help them that it gets overwhelming at times!!!!

Title: Re: I am new and trying to understand
Post by Margi on Jan 31^st, 2006, 3:39pm

I have to echo and emphasize what Eric has said here....if O2 hasn't worked for him in the past it could very well be that he didn't have a high enough flow rate or the wrong mask. OR that he wasn't getting on it quick enough. Read the link to the left here on Oxygen and urge him to try it again.

And thanks, Sandra, for the reminder...here are some pages I wrote when I set up the Family Services Team for OUCH U.S. a few years back. Maybe they'll help you to learn and understand a bit more of what he goes through and how you can cope with it all?

http://www.clusterheadaches.ca/DesktopDefault.aspx?tabid=100

p.s. the links at the bottom open up BEHIND the original page, so you can hold down your ALT key and press the tab key to switch to them, or just click on the browser box on your taskbar and switch that way. Sorry, it's a glitch with my website.

Title: Re: I am new and trying to understand
Post by princess922 on Jan 31^st, 2006, 3:49pm

i REALLY APPRECIATE ALL OF THIS i WAS READING THROUGH SOME OF THIS AND ITS FUNNY HOW YOUR HUSBAND CALLED IT A "TWINGE" MY MIKEY CALLS IT THE SAME THING!!! But I have learned in the past 6 years that we have been together that I NEVER leave the house without Imitrex, migrastic, whatever is working at the time, I knwo that he has some and I have some! That is my first question as we leave in the am for work , if he has his meds!!!

Title: Re: I am new and trying to understand
Post by Margi on Jan 31^st, 2006, 4:31pm

LOL well here's another commonality for you Princess - my husband is a Mikey too! (Although he HATES being called that! LOL)

Just FYI - that anniversary party story that I wrote IS fiction. Based on a lifetime with clusters but...it's fiction.

When Mike's in cycle, we always leave the house fully armed as well. But when we're in remission, we get lazy and like to live on the edge. It's very freeing (and perhaps risky stupid) to not have to load up on trex and O2 when we're going out. I do stash a trex in the car though but it's been there for a long time now...just in case.

Title: Re: I am new and trying to understand
Post by princess922 on Jan 31^st, 2006, 4:40pm

oh that is funny!!!!! my Mike doesn't mind too much if I call him Mikey, but no one else has that privledge!! FICTION......I have lived that!!!! i have learned that if we are in a cycle we stay at home as much as possible!!! We used to drive tractor and trailer teams, but he got so bad, enough was enough, and we sold our truck! It was too much because when he got CH, the truck didn't move and neither did I!!!

Title: Re: I am new and trying to understand
Post by Margi on Jan 31^st, 2006, 4:48pm

oh trust me - we've lived stuff like that, too. His cycle started at my last Christmas party (2004) during a curling bonspiel and we had to make some fast explanations and leave. We always take the aisle seat at a movie, on a plane, at a hockey game, anywhere where he could end up getting hit and trapped. His family has never bothered to understand what clusters are and think he's exaggerating how bad it is. We've missed more functions that I can count and basically live like hermits during a cycle. I guess now, after 20 years of this, we get used to it and kind of just take it in stride. Watch a lot of movies, play some video games and we've both gotten to be pretty good cooks because we're home so much. All things that can be put on hold to pay homage to the sudden and unwanted visits by Cluster Beast, right? ::)
Hey - we used to own a trucking company too - but the downturn in the energy industry killed it in the late 90's, so we closed it. Mike's self-employed as a finishing carpenter now - it's much easier that way because he can set his own hours and kind of come and go as he can. You'll find quite a few clusterfolk are self-employed. It's just more tailored to this lifestyle we're in, maybe?

Title: Re: I am new and trying to understand
Post by princess922 on Jan 31^st, 2006, 4:53pm

We are both still in the trucking industry but me working for the VP of The northeast operations and he is a mechanic at the same facility, I initally came back because he was having CH cycles here and not dealing with them very well, he seems to get comfort jsut knowing I am here and for that I am grateful! It is easier for us both if we are together when he gets them, I have gotten to be pretty nimble on my feet when need be!!! He knows he always has backup meds when I am around!!!!!!!

Title: Re: I am new and trying to understand
Post by Margi on Jan 31^st, 2006, 4:59pm

You sound like a great supporter, Princess! :) My hat's off to you!!

I've just been sent an email, confidentially, by someone who wants these two links put in this thread that are very relevant to the subject at hand. Thanks, my friend - nice to know you're still out there! Very thoughtful of you to send these links to me. SO many cluster angels hover around this site, I doubt we'll ever know their numbers!!

Anyway, here are the links:

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=sep2003;action=display;num=1063814075

and

http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=supporters;action=display;num=1110179844

Title: Re: I am new and trying to understand
Post by lcollette on Jan 31^st, 2006, 5:49pm

on 01/31/06 at 15:39:02, Margi wrote:

Thanks Margi for the websites, I read all that I can on this subject. Since he is in his cycle and working nights I have a lot of time to read.
Lauana