Greetings to you all.  Today I am frustrated.  I have been with my partner and best friend for 9 months, and he suffers from cluster headaches.  His are chronic, and he was diagnosed 10 years ago.  Since that time, he has spent most of his days hiding his pain.  No one knows about it, not even his parents, close friends, or other relatives.  When we first met, he tried hard to hide it from me too, which was easy to do since we didn't see each other much.  Then one day the beast came while we talked on the phone.  I heard his voice tremble.  I heard his breathing intensify as the pain began to overtake him.  He quickly got off the phone.  The next time we spoke, he simply said to me: "I get headaches.  They call them clusters."  He said no more, and I could tell he didn't want to talk about it.  I immediately began to do some reading to find out what was going on.  I couldn't believe some of the information I read.  All of these horrific accounts of crippling pain and ongoing attacks--why hadn't I heard about this condition???

In the months that followed, I began to speak with him in short intervals about the information I'd discovered.  Then, one night to my surprise, we had a very long talk about it. I learned his history of battling these headaches, and he was so grateful and so relieved that somebody understood.  He didn't have to hide anymore. 

His headaches are chronic.  He averages 3-4 per day every day of his life.  They range in duration from 1 hour to 3 hours.  All are level 7 and above.  There are no breaks, and there is very little relief.  He takes no medication at all.  I have tried to help him employ some of the tactics I've read about here.  Some have helped for short periods of time, and I am very grateful for all you have shared.  This was one of the first sites I came across when I began my education process about 6 months ago, and it has contributed significantly to my understanding.  I haven't bothered to make a post until now, but I hope I can discover some way to make a contribution to the site.

Today I am frustrated that such a debilitating condition hasn't received more attention--especially from the medical establishment.  I am disappointed by the lack of conclusive research and the seemingly unprepared doctors who are consistently misdiagnosing cluster headaches.  My partner lost faith in doctors long ago, and his journey has been a long and lonely one.  When he heard his doctor say "no cure", he simply resigned himself to a life of never ending pain.  In due time, I hope he'll see the value in giving another  specialist a try.  Right now I have begun the difficult and arduous process of helping him apply for disability benefits.  He's so brave; he leaves work for months at a time and then returns just as soon as he feels he won't pass out on the job.  He's a former Paramedic and is also a Veteran. 

Please wish me luck in this process.  I intend to keep fighting for him and also keep learning everything I can learn about this condition.  He always tells me how happy he is to have me on his side.   It's the least I can give, and I wish I had so much more to offer.  To those who are suffering, I wish you all the best.  And to those who are supporting sufferers, hang in there!  It does make a difference.  The answer is out there somewhere, and we have to find it. 

Hi Brandy.

You sound like a good supporter and advocate....good on you.

You can help him by educating yourself and him.  Read everything here and on the OUCH site (button on the left).  Ask questions...there is always someone here willing to help.

Can you tell us more about his treatment....what is he using as a prevent and abortive?  Does he have oxygen?

It's a rough road but is manageable.  Hang in there, Sweetie...it does get better.

Jackie

Hi Brandy 

I walked in your shoes not that long ago.  I though my hubby had migraines...that's what he told me all the time.  At the time he was an eposodic CH'er so he would go months at a time with out a CH.  Eight years ago the CH started to morph and he became chronic and he couldn't hide from me anymore.  He came clean about what was going on and I was on a mission to get educated.

I landed here and I'm telling you this is the best place for info on CH. 

Like Brew said cure, no.  Effective treatments yes.  Finding an effective treatment takes time and can be ever so frustrating.

Like Jackie said you are doing one of the best things that you can...you are getting educated.  That is one of the best things that we can do to help our sufferers.  Stick around and lean on us and ask questions.  We'll do our best to help you.

Good luck and hang in there 

Hi Brandy
You have found a fab site, loads of information and even more support.

Can I ask if you fella choose not to take medication or has he never been prescribed any?
Does he visit this site? Maybe if he speaks to other sufferers he may find it helpful...
Take care
Sue

Bri I've been trying to respond to your post for the last half an hour.  I've been trying to find the right words because I don't want to hurt your feelings.   

I'm a glass half full kind of gal.  So I really hate that you are feeling that things won't get better.  I know it's frustrating that nothing is helping.  There are so many things out there that can help, but everyone's CH is so different that it really does take time to find the right combo. 

Watching our loved one suffer is a real bitch and not something that I would wish on anyone.  We have to stay positive...I know it's hard.  Dealing with CH has a lot to do with attitude...you can approach it with a bad attitude and just let it keep smacking you down or you can approach it with the attitude that it is what it is and we'll deal with it one hit at a time.  Don't let it consume you or you will drive yourself crazy...I know I've been there.  Sometimes I still mentally smack myself up over it.

Hang in there ok...we've got your back 

Brew, I agree with your words.  We will find a way to better manage his condition.  Thank you for the response!

Brandy

BryanG, I'm happy to hear how well you are supporting your spouse.  Please keep up the good work; I know it is appreciated.  And you're right....sometimes you just have to keep pushing until you have the answer!

I wish you all the best, and I look forward to reading your updates.

Brandy

Awww Brandy 

You're doing a great thing by getting educated.

I still get frustrated and downright pissed at the beast, but not as often as I used to.

Lean on us...ask questions, vent, whatever you need and we'll do our best to help you through.

Thank you, Guiseppi!  I have definitely encouraged him to check out this site as well.  There is a lot of information here!  I am wishing you and your family all the best.

Brandy

Bri13, I definitely understand.  It is so hard to see someone dear to you suffer so much.  It's one of the most helpless feelings!  But, I know your significant other is lucky to have you on the team.  I also know that you will endure, and I am going to as well.  I have found that I have to stay very strong psychologically for myself and for him.  This cluster headache is most definitely a beast.....but somehow I think I'm a bigger one! 

Brandy

Brandy you may have mentioned and I missed it, but what part of the country/world are you in? Is there any chance the two of you can hope in the car, on a plane, train, bus or whatever to join us in Nashville in a couple of weeks. You guys have been battling this horrible condition a long time, can you come sit with "friends" and hear from some very educated speakers on the subject?  Hope your answer is yes! Check out the information on Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

Christy

If you ever get a chance to attend a gathering or meet up with another clusterhead and supporter close to your area do it.

It will change your life in a big way