Hi all, I've been away from this site for a while as my son has been diagnosed with Asperger's and I've been dealing with that.
My CH was being kinda kept under control with Epilim.  I was getting kip 5 or so pretty much every day but a sumatrip0tan tablet usually took care of it.  However, I read somewhere that alot of women who had a Mirena coil fitted were suffering really bad headaches that resembled CH.  I've had migraine for most of my life and CH for at least 10 yrs, probably more but I became aware of it being different to migraine afew yrs ago.  I had the mirena coil for the last 10 yrs and wondered if there was a speck of hope that my Ch was in fact caused by the coil.  I decided to have the coil removed and in doing so had to stop the Epilim to see what the effects were.  I stopped in January and then 2 weeks ago I got floored!  It was like before I found this site and got the correct meds.....4 days locked in my room, banging my head off the walls, pacing, rocking, extreme agony.  Hit after hit, 8 imigran jabs and 2 cannisters of 02 later and the doc finally came out.  She looked at me sincerely and asked if I'd tried papracedtamol as everything else didn't seem to be working.  If I hadn't been so sore and weak I'd have laughed in her face!
Anyways, I have come to the conclusion that the coil is not my problem and I have to faced up to the fact I'm stuck with the beast. But I wonder how many women are on this coil and having problems.  Thought I'd share my experience and hope it may find it's way into helping somebody somewhere x

I do believe that keeping our hormones regulated results in milder, and possibly less frequent, attacks, but it is not a cause.  I only wish it was that easy!

Sorry to hear of the beasts reign of terror over you.  I hope you are doing better now!  Also sorry about your son. :(

~mel

(btw, I am not on any form of birth control myself.  Haven't been in years)

what an interesting thread.  I also have the merena coil which is due to be removed this year.  Since having the coil , I have had two cycles . I am episodic and can go 4 years between cycles.   First year I got the Merena got a cycle after 4 years pain free.  Last March got another ( 4 years to the date)  However,  pretty sure I would have gotten a cycle this year but so far keeping it at bay. So much for the 4 year theory...

Not sure of a link .... but interesting indeed.  We'll see what happens when I get it removed next month.  

Kelly

Well, probably in a month or two, I'll have to find out if mine is related to my Nuvaring.

My headache specialist wants to rule out any medication that can cause headaches, if at all possible.

Unfortunately I don't do well off of BC. Constant migraines, bleeding 2-4 times per month (5 days bleeding, 5 days not, etc.) passint a crapload of clots due to a uterine fibroid.

I honestly don't think it's connected to my clusters. If nothing else, this will prove it, one way or the other.

Thanks for your answers.
I don't personally think it's causing CH but when I researched the Mirena's side effects on forums it was unreal how many women who never even had a migraine before were reporting that they were being slain by week long bad headaches.  So I thought I'd read up on the manufacturers contra indications and it says it shouldn't be given to women who suffer with any headache syndromes.  Which pissed me off as I've been on record with these darn things since I was 14.  
I wonder how many women out there think they have bad migraines etc but it could actually be related to the coil.  And if us Ch sufferers are being given any IUD's are they contributing in any way?
x