I don't post here often.  As I used to be pretty predictable in my CH cycles.  every 1.5 yrs. until about 3 yrs ago.  Then they went all wacky on me. 
*history time* in december 2009 I got a shot (for endometriosis) I made the decision to take the injection and try it at least for 3 months.  about 1.5 months in the Ch cycle came on.  This was the worst one ever.  4 O2 tanks in a month and 4 portables.  There was no rhyme or reason this time. *
My Neuro put me on Verp at first 80 mg 3 times a day, then went up to 80 mg 2 times a day and 160 at night.  It worked really well until 2 wks ago I started to swell horribly in my feet and legs.  Dr told me to taper it down to just the 3 times daily at 80 mg for a while and see how that went.  All was fine once again until last Thurs.  I swelled again.  This time worse.  10 lbs of fluid over night. Dr said this time taper down 2 times days for 3 days and then 1 time for 3 days.  and to stop taking it totally.  I did that over the weekend.  and am already starting to feel the beast coming back again.  I can no longer take the Verp due to the concern of swelling again.  and as my father is a heart patient and can only take 2.5 mg of the stuff and he swells even worse than I do. 
I had been getting nerve blocks for a while until about April but know the risks involved in that too.  They only last about 6 wks now.  and know they cannot cont. to give me that as treatment due to the risks involved.  I am not sure what else they can do. 
I already take Depakote 500MG ER 2x daily and that only helps with my migraines.  Yeppers I got both of them at the same time w/out meds.
since the injection my CH cycle has been ongoing.  I am still not out of it and not sure if I ever will be again. 
I am at a total loss now as to what I can do. 

You tried lithium?

That is one medication I haven't tried yet.  I do have other medical problems and that may be why they have never brought that up. I have a call in to the neuro right now to see what he wants to do. 

See the PDF file, below.

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Not a medical person here, so I only can relate my personal experiences. Lithium, at 1200 mg a day, has been a life saver prevent for me forever. I'm 50, male, episodic. The dose varies from person to person as I've been told it's related less to body size, more to how your body processes the lithium. So it takes a few blood draws when you first go on it to establish an effective dose.

At 1200 mg a day my wife cannot even tell I'm on it, so forget the hollywood stereo type of a drooling zombie! ;) You pee a lot the first few weeks as it is a salt, pay attention when they tell you to increase fluid intake. There is a slight lethargy with it but nothing a cup of coffee won't shake. Takes about 10-14 days to become effective for me, I use a prednsone taper during that time to give me relief.

Absent any medical conditions that would prohibit it, it's sure worth a shot.

Hang in there...one of our duel diagnosis people...cluster AND migrain...damn. :'(

Joe

Thanks for the info Bob.  I will discuss it with my dr tomorrow. 
Joe- my dr did bring up lithium today on the phone.  and taking blood tomorrow to test my depakote levels as well. 
Worst part of this is- I got my hopes that they would be gone once the shot I took in Dec got out of my system last month.  didn't happen I guess.
And right now is a stressful time for me.  I am moving this weekend and only have a week to unpack before I head out for vacation.  So I know that is def. not helping matters at all.

Oh never give up hope! ;D

I've hoped this stupid cycle has been over twice so far...each time I start weening off the lithium, he rudely let's me know his stay is not yet over. And still I hope...........................

But I hear ya..the old chin up crap gets old when you're just ready to be done. :-/

Joe

Guiseppi wrote on Jun 15^th, 2010 at 5:38pm:

Oh never give up hope!

What Joe said! In spades!!
We all know despair (hope's evil counterpart) is a killer of spirit and body. But it's grounded in real time behaviors. I've gone through a dozen prevents but kept looking for more. Maybe the next one...?! And abortives that keep me somewhat in control. These are the substance of things we hope for. These, and grace for the day. God bless!

I had to stop taking verap for the same reason.  Never give up!!  Hopefully you will find something that works for you soon!  Good Luck!

Saw the Neuro today.  Got my lovely nerve blocks again.  And the Dr had labs done to test the levels of depakote in my system. If it's not right with what my dosages are he mentioned upping the dose again.  If that doesn't work I guess Lithium is next.
Most days the only thing that helps is my husband.  Well once I get into that well of despair.  he grounds me back to reality.  That it will get better or we just keep trying  different thing.  I think this time it's so hard for me is that I have never had a cycle this long.  Most are max of 8 wks and I am good for at least another year. This has been since Jan 21st and no end in sight.  Granted the blocks are lasting longer each time I get them. Last one was right at 2 months. so hope is this one will last even longer.  But I know the day they stop working.
But last night was a PF night.  so I got the blocks hopefully just in time.  Will see what the next few days bring.
The great thing is my Neuro knows that what works for one person might not work for another with CH. So he does what he can to treat me and stop the pain.  He is trying to get my more injections if I need them. my insurance covers 4 a month.  but now that its generic he thinks they might allow more and he offered me the new no-needle type if I want to try it.  I may just call his office and see if I can get some of those to try.  But he tries hard to make me better and doesn't just pass me off when I say they are coming back. 

Boy a doc who will communicate with you and genuinely cares....worth their weight in gold.

I'll caution you on the needless injectors...they are WAY expensive! My doc prescribed them my insurance flat said no! I went back to the generic injectables. Your mileage may vary! ;)

Joe