After suffering a kip 10 on Saturday and going to the hospital, I finally took my neuro up on the offer to try an occipital nerve block (greater and lesser.)  We are trying a faster acting version of the verapamil while I hopefully get some relief from the block.  I had been terrified of the pain from this procedure, but I'm here to tell you - it was really not a big deal.  I'll let you all know how it works out.   I'm looking forward to at least a few days of no clusters.   I'm getting an O2 refill and hoping the fast acting verap will take effect by the time the block wears off.

Man I hope that works as planned for you Joshua!

Not surprised that the procedure wasn't that bad (what could be that bad compared to a K10???!!)

I'll be watching with real interest for your reports on how it goes.

Wishing you all the best and hoping that you will find some relief.

It can't be easy to take that step.

Then again it is not that hard to understand why you did!

Be well  :)

In your corner for you, hope this helps.

As my luck (which is bad by the way) would have it, I got a headache 4 hours after the nerve block, while lying in an MRI machine and couldn't move for 10 minutes, and another in the middle of the night.  I'm HOPING the nerve block lessens the hits, or takes time to take effect.  I have a call in to the neuro. 

This is kind of like a tragi-comedy.  :D

Oh no - that just plain sux AND bloze.  :(

So much for stoopid occipital nerve blocks.  >:(

I hope this MRI of an actual cluster headache in progress is valued by researchers, assuming it's rare for them to capture one.

Really feelin' for ya with this one - nobody should have to go through this crap.  :'(

Hang in there - maybe try'n focus on better days ahead, better days ahead.

I don't think MRI will show anything, that is not physical change, since MRI only is scan, functional MRI on the other hand or MRA or PET scan would show a lot.

My neuro just proposed a nerve block and I declined. How are you doing?
BTW, what is fast acting verap? Never heard of it.

Hi Kika,

I don't have good news to report.  I should say first, that I'm chronic, not episodic, and this, apparently, makes a difference.  The first nerve block did nothing.  I got a headache the same day and two the following.  I got RE  blocked, and in more places two days later - and still got a headache, but did get about 1 day of relief, but no more.  So I would say all in all, for me, it was a bust. 

Fast acting verap, I was told, releases faster and you take it more frequently.  Might have misunderstood... i'll have to get back to you.  I'm kind of at the end of my rope and waiting to go back to my neuro on Monday next.  Right now I'm BACK on topamax (sever shortness of breah as a side effect) AND neurontin) to just keep the 5 to 6 daily hits away. 

Let me know how you make out please.

Joshua

Sheesh sorry to hear how poorly it's been going for you Joshua.

When I asked my new Neuro about occipital nerve block she said the opposite - that it's more for chronic CH. She is not a headache specialist though, and of course MDs are routinely misinformed.

I suppose you are well acquainted with Neurontin from past use, but in case not, I 've found that it takes a couple weeks to really kick in, but then it can work well.

Hey..thanks for the reply :)  The reason I got off the Neurontin before was the dopeyness and some weight gain.  I took one this morning and I'm a zombie all day.  I will probably switch to night dosing to try to alleviate that and taper off the topamax.  The symtpom I'm suffering from on it is called Dyspnea, and it's CRAZY shortness of breath, I can't tell you how weird and severe it is.  I know I said it before, but so few ppl I get it, I feel I get to complain  :P .... anyway.  More to come...