Get to the neuro and demand 02.
all the best, hang tough.
tell John houdy from Montany
the bb

As a supporter who has lurked in the shadows here for almost a year I was compelled to reply to your post!

Firstly, I want to say (((((((((((((HUGS)))))))))))) You seemed like you could use one.

Secondly, my boyfriend told me the other night (after a k7 kicked him in the head) that just knowing that I still love him regardless is the best gift he's ever had. I would bet that is the same in your case.

I know it's hard, scary, and frustrating, and even a year into loving a man with this beast doesn't end the "Can I do this?" "Am I strong enough?" questions. We are always stronger then we think when we look around and realize that we are not alone. I find whenever the helplessness gets me down that coming here and reading all the wonderfully supportive posts helps me to stand up to that beast for another day.

Our love for those who suffer will always be stronger then the beast that rides them. Try not to beat yourself up. You are only human and it's okay to be down from time to time. When it's too much for you alone, come here to the heart and arms of all these wonderful people who are more then willing to help us hold each other up. Feel free to PM, IM, or email if you ever need a shoulder. I'm tiny but I hear I have a comfy shoulder for tears.

Minxy 

midgetnminx@yahoo.com (same for IM as well)

(Sometimes even us supporters need support)

and another ((((((HUG)))))) just on case the first wasn't big enough!

If his brother won't advocate for him, and he's not sure he can do it himself I would say absolutely that you should go! Sometimes it's all we can do just to stand up for them. (It also helps me with the helpless feeling to know I'm doing SOMETHING positive)

You go with him.
the bb
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What would he do without chya

There is nothing selfish or wrong about that. My BF and I have learned that when he's in cycle he's the worst person to rely on for accurate info on timing, k scale, and what not. (As once he's done with a hit he's "fuzzy" after a bit on the details)

I've taken to walking in with a written list of questions and writing down the docs answers so I can keep it all together. I also keep tabs on the when, how bad, how long, and symptoms of BF's headaches like a diary, again I feel I've accomplished something helpful and the docs get a better understanding of what his cycles are like from someone outside the pain and (Usually) more clear headed. All tiny little tricks to fight that "Helpless" monster that tears at all of us that choose to support our CH'ers.

OK, update here:
We managed to get him into the after hrs clinic last night right after work to see (yet another) general practitioner. All this time I was asking them for injectables (knowing the pills were virtually useless) and O2 they wouldn't Rx anything until they could see him again and then the holidays, etc. So he got the nasal spray from this guy; and prednisone (on top of the verapamil). He didn't have an attack last night, but now he's jittery and can't concentrate. I don't which is worse, the disease or the cure.
Then, the Doc even said it would more believable if he'd had ER trips on his record. The jerk. J's ER copay is no bueno. We've purposely been avoiding it like the plague b/c of the cost, so, he suffers through it. Its like we were pill-heads looking for drugs.
We did, finally, get a solid referral for the headache clinic so no driving out of town today and missing work, etc. Our bosses are getting fed up with us. I have half a mid to start referring to it in medical terms so we stop getting pushback about, "oh, it's just a headache..." blah blah.
Round two-- headache clinic;
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Sounds like maybe they have their heads on straight over there, mentioning clusters right off the bat. Why these moronic gen practitioner docs didn't send us there in Nov when his cycle began is beyond me...
I'll post with updates on this new avenue; hopefully it will be fruitful.


/abby

whoa, that drives the point home.
Thanks, Linda for all your feedback by the way; very much appreciated.
I'm just sifting through all additional info I can get my hands on in this site and others, like the headache clinic. At least the docs there have extensive experience, exposure and clinical trials under their belts
I wonder if there are any other SF'ers on the board who have been there...   

Welcome Abby! Sounds to me like you're doing everything right!! As everyone here will tell you - do take the time to read all this board has to offer on medications. I know - it's a lot of reading, but the effort could very well save John from stumbling into some very serious pitfalls. Find out all you can about everything that's prescribed - possible side effects, predictable reactions etc.

As Linda said - because CH is so rare, you're aveage GP has'n't heard of Cluster Headache since med school. I hope you'll find one who is, at the very least, sympathetic. I used to cry for hours every time Brian was thown out of a clinic, accused of being a junkie and just abandoned to his pain.

Professor Goadsby proved to be a turning point for us! I had the radio on one evening while I was sewing. I'd just stopped the machine and caught the tail end of a broadcast I wish I'd heard from the beginning. The words "Cluster Headache" were mentioned, and from what I could gather the program had comprised an interview with Professor Goadsby and a Clusterhead. First thing next morning I sent away for a transcript. When it arrived in the mail, Brian's reaction was at first, to me, a bit of a kick in the teeth. I found him sitting on the front step - transcript in hand - sobbing "I'm not alone! I'm not alone!". What he meant, of course, was that this was the first time he'd ever read the words of another sufferer.

It was some years after that when we discovered this site and we've never looked back. It doesn't make seeing someone close to you in such dire agony any less devastating. It doesn't chase away your own feelings of helplessness and frustration. The comfort and encouragement come from the the fact that indeed  - we are not alone!

Having rabbited on so thoroughly - I sincerely trust that John and yourself will get some tangible relief very soon.

Love & Blessings to you both, and here's to a PAIN FREE 2009 for all of us!

Den (SHOODABINANUN)

Sorry you had to find us, but sounds like you're on the right track now!  As Linda points out, there is no better than Goadsby, period. 

Hoping ALL goes well with the treatment and your DH finds his way into a pain free world and that you no longer have to suffer the hurt and helplessness.

Laurie