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Supporter's Corner >> Supporter's Corner >> Just need to share these fears
(Message started by: scarlet52698 on Feb 17th, 2008, 10:42am)

Title: Just need to share these fears
Post by scarlet52698 on Feb 17th, 2008, 10:42am
I hope this is ok but I just need to vent these fears somewhere as we are new to the cluster headache thing.

DH has been a migraine sufferer his whole life and dealing with that has been scary but he only gets them a couple times a year and he is practiced at working through them.

MY DH is a strong man and I've only seen him reduced to tears twice in our 7 year marriage.  Once during a migraine that ended up in an ER visit a couple of years ago and this morning when I truly feared that he might hurt himself because of the pain.

The cluster headaches are an entirely different animal and according to my DH make migraines look like a walk in the park.  His whole head was on fire this morning and he said it felt like someone poured liquid metal inside.

I can't fathom dealing with that kind of pain.  They have been occuring since right after christmas and he has lost major sleep because of them.  He is terrified to try to sleep because he wakes up with these monsters.  Right now he is getting 2-3 attacks a day that last anywhere from 30 minutes to an hour.

We are both in a recovery program from addiction with long term good sobriety.  This morning he said that he is in so much pain that relasping seemed like a good idea if it would help the pain.  That statement is the most frightening thing I've heard him say because we both take our recovery from addiction very seriously.  He is keeping in close contact with his recovery support people and I'm researching everything I can to find help for him.

We have a wonderful life with three great kids, our own business, and a nice home.  My DH has worked so hard for the life we have, the thought of losing it is to much!

I'm rambling right now, thanks for listening.  I love my DH so much and would do anything to help him.  I hate that anyone has to go through this kind of pain.........it just freakin' sucks!

 :'( :'( :'(

Title: Re: Just need to share these fears
Post by Jackie on Feb 17th, 2008, 10:58am
Hi Scarlet..
I'm married to a clusterhead too.
Yes, it can be tough watching what they endure and feeling so helpless.

The pain is HORRID.  It also leads to depression and even harmful thoughts sometimes.

I'm sure your DH understands that relapse is the very worst thing he could do....for the CH, himself personally and the entire family.

Now...let's see what we can do to help him with the CH.

Tell us what he's doing to abort...what his meds. are...and what he's got going on as far as home remedies.

Have you read and studied everything here and on the OUCH board?  Knowledge is power, Sweetie.  He's in a bad spot right now so it's probably up to you to advocate for him....hold him up.

Also...if he's not on the boards, he needs to be...talking to other suffers is GOOD medicine.

You all can manage this...we'll all help you.

Good luck and a big hug too.

Jackie

Title: Re: Just need to share these fears
Post by Angie on Feb 17th, 2008, 11:09am
Hi Scarlet

I am also married to a Clusterhead.

You have come to the right place, like Jackie said it is tough to watch. You will be his best supporter, hang in there with him, go to the doctor together, learn everything you can.

We are all here for you and understand what you both are going through. This site saved our lives it will save yours and your husbands as well.

Bigs hugs [smiley=hug.gif]

Title: Re: Just need to share these fears
Post by scarlet52698 on Feb 17th, 2008, 11:10am
Thanks so much Jackie.  Yes he does realize that isn't a real option, I think he was just trying to convey the desperation he feels right now.  

I literally just found this site this morning.  We went to the ER two weeks ago, not because of the level of pain but because his pupils were different sizes.  The eye on the side that the headaches occur was tiny while the other was normal.  Our paramedic friend said get to the ER ASAP because that could mean a serious problem.  By the time we got back to see the doctor the headache was lessening but she said from his description that she thought it was Cluster Headaches.  She gave him Indocein (sp?) and clozapine.  He didn't take the indocein because of a bad experience with it when he was younger.  He did take the clozapine which didn't seem to help.

While the pain has been bad over these last six weeks it was off the charts this morning.  He basically just paced around holding his head crying.  It lasted about 30 minutes and then started to abate.

I've located a headache clinic in our town (thanks to this site) and plan to call them tomorrow morning.

Thanks for letting me share my thoughts here.  It's a huge help to know we aren't alone in this.

We are interested in the O2 therapy and plan to ask the doctor about that.  He would prefer to treat this without meds if possible.

Title: Re: Just need to share these fears
Post by scarlet52698 on Feb 17th, 2008, 11:12am
Thanks so much Angie!   :)

Title: Re: Just need to share these fears
Post by Jackie on Feb 17th, 2008, 11:43am
Hi Again....

The 02 is VERY important.  I see your hubby has had other medical problems so 02 therapy should be the best abortive for him.  Of course your doctor will make that decision...I'm really hoping for the 02 though... :)

Stick with us, Sweetie.....drag hubby to the site too....when he feels up to it.

Ask questions, vent, cuss, etc......

We're here to help all we can.  Just remember...there is and can be a good life even with clusters.  It takes some work to get there but it can be accomplished.

Hugs to you both...
Jackie

Title: Re: Just need to share these fears
Post by scarlet52698 on Feb 17th, 2008, 11:47am
That means a lot Jackie.  I'm hoping he'll hop on here in the next couple of days.  He's not an internet guy, just learned how to email people this year.......lol


You guys are awesome and thanks for being here!

Heather

Title: Re: Just need to share these fears
Post by barry_sword on Feb 17th, 2008, 12:03pm
Hi Heather. I too am fairly new to the computer world but have learned a lot. I am a two finger typer and never look up from the keyboard while typing. Drives Angie crazy to watch me! ;;D ;;D ;;

We will be here when your husband is ready to join us, the sooner the better!! ;)

Nice to meet you.

              Barry :)

Title: Re: Just need to share these fears
Post by Jackie on Feb 17th, 2008, 12:20pm
Heather....
I hear what you are saying about hubby and computers.  I still can't get Blake on here.....but I've read him a zillion posts.  It really did save us...this site is wonderful.  Tell ya what...try reading to him or having him read certain posts....when he's up to it.  This board and the people here will give him & you hope, courage & strength.....I promise.

Keep reminding him and yourself too that....cluster headaches are terrible but they are NOT fatal!

Now...you must take care of yourself too, Sweetie.....a worn out supporter isn't much good.... ;)

Hugs...
Jackie

Title: Re: Just need to share these fears
Post by Grandma_Sweet_Boy on Feb 17th, 2008, 12:37pm
Heather - I can't imagine having to walk in the shoes of a supporter.  You guys are tough as nails and I don't know how you get through some days.

From the sufferer's point of view - we know it hurts, but we all pretty much understand it won't kill us - it will end - and we'll live to fight yet another day.

Hang in there Heather - two of our very best supporters are already here helping you.  Jackie has done this for a very long time and is a wonderful lady, and Angie is an awesome supporter to Barry as well as to several of us in this wild and wacky CH community.


Sending you hugs.
Carol

Title: Re: Just need to share these fears
Post by scarlet52698 on Feb 17th, 2008, 2:25pm
Thanks Carol, Barry :D

I will Jackie thanks:D

Title: Re: Just need to share these fears
Post by George_J on Feb 17th, 2008, 5:10pm

on 02/17/08 at 10:42:33, scarlet52698 wrote:
IThis morning he said that he is in so much pain that relasping seemed like a good idea if it would help the pain.  


Tell him it won't help, Heather.  He'll still have the pain--CH eats pain-killing substances for lunch.  

Analgesics, opiates, and sythetic painkillers are usually of little use in treating CH.  The effective treatments that exist work to prevent or to terminate an attack.  That's where his efforts should be--finding out what works for him to stop an attack.

I've had CH for a long time, but I haven't forgotten what it's like to be new to it.  

Your husband is welcome to PM me anytime he likes, if there's anything I can do to help.

All the best,

George  

Title: Re: Just need to share these fears
Post by Mosaicwench on Feb 17th, 2008, 9:48pm
Welcome Heather!

I'm sorry for the reason you found us but am glad you are here.  I, like so many others before me, am married to a sufferer.

I can't say anything better than they have already so I'll just let you know that we are here beside you all the way.  

We live with this beast, as you do, and know how it is.  Feel free to rant and rave and cry and smile with us.  We really are family.  

We've all been there out on the porch crying because we can't take the pain away.  We've all taken the children somewhere when we really didn't want to so hubby could battle alone.  We know a lot about coping with this monster and we're happy to help - just ask anytime!

God bless you as you stand by your man.

Title: Re: Just need to share these fears
Post by Guiseppi on Feb 17th, 2008, 9:52pm
Heather you're a saint. I'm a CH sufferer, my wife found this board for me and saved my sanity. I have no advice for you. just a heart felt thanks. You supporters are what keeps us sane when we're in so much pain we wanna do domething stupid. Thank you.

Guiseppi



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