Hi Loopy and welcome to ch.com.....sorry that you find a need to be here but when it comes to CH it's the best place to be.  There is a ton of understanding and support here.

The best thing you can do for starters is read, read and read.  Knowledge is power when helping your sufferer.  By reading here and on the OUCH site (button on the left) you may fine some things to bring him relief.

Talk about what he wants you to do.  There really isn't much but you can get what he needs during and after an attack.  Have a plan...does he want you there or does he want to be alone (some want to be totally left alone...some don't),  make sure that what he needs it available (02, ice, triptans),  keep a positive attitude and try to keep his spirits up,  show him love and understanding.

If he's not here have him join.  Clusterheads find comfort in knowing that they are not alone.  Talking to others helps.

Hang in there.  It's tough but you can do it and always remember that as terrible as it is, it's not terminal.

Ask questions...talk to us.  There is always someone around to help.

Jackie
(wife of sufferer)

Hi Loopy, hang in there, we feel ya, for sure!

My husband has had cluster headaches for going on 16 years now, and we've been together for 12. I remember, so vividly, the lost feeling before we knew anything more than a name for these. Doctors had no more options, so that meant there was nothing more we could do- or so we thought. And then we came here. And the realization that there is not one or 2 more things that might work but a multitude of things that DO work was almost enough to bring me to my knees. There was hope!

Now- I can only speak from personal experience, god knows I can' tell you what would work for you. But me- I would be DAMNED if I was going to lose a fight with these headaches when the prize was my husband! And so I studied like a mad woman. I learned, and I applied what I learned. I would hand him his Melatonin pills and remind him to take them. I got us an O2 set up and cajoled him to get on O2 at the first inkling of a headache- not wait to see if it actually was one. (which makes O2 less effective, by the way) I'd keep an eye on our Imitrex stockpile- but remind him to try O2 first but not beat him up if he was just to exhausted and just wanted the nasal spray so he could go back to sleep fast. I'd remind him to drink his red bull. And I would sit with him through his headaches. If he woke in the night then I would try to be up with him.  He needed me- so I was there.

And it was at another level too. What he wouldn't do for himself (hope these treatments would work and keep at them correctly) he WOULD do for me. We'd spent years trying new things doctors prescribed and not having them work (the oxygen concentrator with the rebreathing mask comes to mind...) Hope can be crushing when it is dashed over and over again- I get that. And so it was easier to not get his hope up in the first place. And he was exhausted and all his energy went into surviving the hits (I call them attacks- the term headache is WOEFULLY insufficient), he had no energy for anything else- even hope, for a time. But I did.

Here is what I would say- knowledge is power and action wins over depression everytime. Take an active hand in his treatment. Go to doctors appointments. Take notes. Hand him his medicine. Ask him what he needs from you. My husband likes me with him during a hit- but others like to feel like their headaches are not affecting the family and want to take care of their headache in private and then come back as if nothing happened. To each his own. TALK to your sufferer- see what he'd like you to do.

Many of us have dragged a sufferer, kicking and maoning, to relief. I promise you can too. While it hasn't taken all of the pain out of this for him, or blocked all of Lucas's hits; it has completely rid us of FEAR. That was invaluable. I wouldn't trade that feeling for anything!

i don't have any advice because i'm in the same boat right now..but feel free to send me a message if you ever just want to vent/talk/etc.

Hello new supporters, my name is Christy and I am married to Guiseppi who posted earlier. As he (Joe) said, you're over a major hurdle in that you're here. Getting the diagnosis finally was huge for us, but back then the docs were just throwing narcotics at him. I was scared to death of him driving under the influence of his prescriptions, taking care of the kids, etc. And then i called his doctor and asked for a meeting. I guess the doctor realized the problem required more than drugs and sent us to a neuro. So between that, and then over time finding this site, we have found our way with things like O2, preventatives, energy drinks etc.

So when Joe's on cycle he likes privacy with his hits. But when I "feel" his absense, or hear the o2 tank clank as he sets himself up, I just quietly take him a redbull (he prefers the sugar free) and an ice pack. I make sure he's ok, and then I leave the room (or garage where he often hides) but stay within hearing range.

Once he aborts he just likes to rest, so I leave him be.

We keep redbull in the car and his tank when we go places while he's in cycle. And Imitrex too, just in case. You never know.

We used to have CH ruin our family time, but now we're more in control. I like what Lauren said, - I too can fight CH when I know the prize is my BFF.

hang in there and let us know how we can help you. Do check out Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or too when you can.

So sorry 37-41 that your husband doesn't really understand CH. I pray he will someday. In the meantime we are happy to be your family.  I see you're in the UK, hope you have met some of your "family" there. We were on holiday there last summer and met AndrewJB - very pleasant day with them.

Please let us know when you need an ear!

As a sufferer I like to be left alone, my wife doesnt see most of my hits as there night ones but she asks me nearly every morning how im feeling, even during PF days/months. How my wife really helps is by being there to talk to after a bad Hit/night/week and she makes sure ive got everything before we leave the house.

I love all you suporters out there, you deserve a whole chest of medals and honours because with out you by our sides the name suicidal headache would be more prominent.

Mark (>>>>>> sending you all HUGS)

High Five, Dereksgirl!

I read your post and thought "THAT a girl!"

I echo those words Gaz (Batty)

I can't imagine how supporters feel when they see their loved ones going through an attack.
I imagine helpless, scared, frustrated, sad and many many more emotions.

The posts above are full of compassion and love, your sufferers are so lucky to have you, I'm glad your willing to share your experiences on here.
 

thanks for the kind words. Honestly, we're just paying it forward. I don't know what I would have done without Linda, Pat, Jackie and others. Not to mention all the sufferers who coached Joe. We thought we had CH under control by the time we found this, but oh my, life got so much better wtih the sharing from here.

Folks on CH have become our family. We see the annual gatherings (OUCH or otherwise) as our opportunity to vacation with friends. Hope you'll join us some time so your loved ones can meet other sufferers in person, and so can you.  We'll be in Nashville in July. Check out the info on Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or