Ok, I've done something and I don't know if it's bad or not and need some guidance.

My CH has been in his current cluster since April 14th, took a plane to Nashville started the cluster earlier than normal, anyway....last week we went on vacation and I'm not sure how it happened but we forgot (yes, I know STUPID) his verapamil.  He had horrible ha's the last two days of our trip, middle of the day attacks that never happened before. We got home Sunday and immediately went for the Verapamil and then on Monday afternoon I gave him another, totally forgot that he had already dosed and gave him another before bed.  Funny thing is that Tuesday he told me his "haze" was gone.  He says he knows as soon as his feet hit the floor in the mornng if he's going to get a HA that day. Well since that double double (240 mg x2) he's completely came out of this haze.  I don't want to use "remission" b/c I'm afraid.  

I'm rambling I know but I'm hopeful that maybe my mistake could have caused this.  Should I call his neuro, will 480 mg of verapamil hurt him.  I'm selfish I know but I want to keep making the mistake so I can have him back.  He looks normal, no circles under his eye, his smile is back - what should i do?

Most of us for whom verapamil works don't get any results until we hit 480mg or higher.

Calling his neuro is up to you, but the script will only last half as long if you double up the consumption.

Also, you said you want to have him back. Here's what happens to me when I take verapamil - I get utterly uninterested in boudoir activity. So even though I may be pain-free, I am anything but back.

so you've not had a problem with being on a dose that high? I afraid I'm going to hurt him!

Funny thing about the boudoir, I've read that CH's have a very high level of testosterone (sp?), so it's weird that you have no interest?  Am I being totall insensitive? Please tell me the truth.

Oh don't be afraid of "taboo" topics here, sex, bowel movements, we air it all here! Like Brew said, most that get relief from verapamil are at least at 480 mg a day, many go as high as 960. That being said, it's a pretty strong med and it's always best to work with your doctor when adjusting doses!

The high doses of verap will plug you up a bit, definitely wanna increase the fiber. It also tends to drop the old libido to zero, and can render the little guy unable even if you are interested...like giving us headaches wasn't enough now you gotta take THAT away from us!! ;)

And we can't say it enough, thank you for being a supporter, there are times you guys are all that keep us going.

Guiseppi

well then.....i guess we'll find out later today, you see he's placed a "booty call" so you know us "supporters" whatever he needs..... ;)

seriously though, i need to thank you guys for welcoming us and for giving me back up when needed.

Guiseppi - I'm speechless. Sometimes I think you and I are the same person in two different bodies. You speak and write exactly what I was thinking.

blawrence - Verapamil takes 10-14 days to build up to theraputic levels for CH sufferers, so if he just started (or has been at a low dose), you likely won't see the truly beneficial effects (or the disheartening side effects) for a week or so. What I'm trying to say is that your "booty call" may still be on, so to speak.

you know as long as he gets some relief, i'm good. i just want him to have pf days and as many as he can get.  i called his dr to let him know and am hoping he won't flip out.

keep your fingers crossed that these "side effects" don't happen to him b/c that would absolutely kill him  ;D

Sometimes it's just a trade-off, a prioritization, plain and simple. Which do I need more? Relief from intense pain, or an empty prostate?

Edit to add: I meant to tell you, 480mg seems to be my magic number. No relief at any less than that. My doc did try to take me up to 720mg once, and I was getting dizzy and almost falling over. That doesn't mean your DH shouldn't or can't go that high. Everyone's different. I think it has a lot to do with where your unmedicated blood pressure is.

PLEASE! You are dealing with a well trained doctor whose job is to advise and deal with such situations. Call him. You don't have to speak to him directly; leaving a message will, at the very least, give him an opportunity to act, should that be necessary.

We here have the freedom to offer our best guesses without the burden of being responsible.

Talked with the neuro, he says he fine taking 480 and if the rx runs out to call and he'll get us more!! Thanks again to all of you, really you guys are the best, don't care what's wrong in the head  :-*