Hi

I'm a Chronic sufferer, I've been offered a couple of treatments to try & break the cycle. They are:
a.  Lithium
b.  Methysergide
c.  Occipital nerve block
I was told that most of these treatment are not really successful for chronic suffers. Methysergide scares the pants off me as it's got some really nasty side effects, forms scar tissue arounds organs such as the heart, kidneys etc. So the best of a bad bunch appears to be the Occipital nerve block. Has anybody had any experience or known anybody who's had it?

Whilst I was in the waiting room the I saw the Open Door news letter, which was all about cluster headaches. I've scanned it in and uploaded it as a PDF file to here Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
Most of it is available here but there may be a nugget of other info hidden in there somewhere.

Thanks in advance

Regards
Captain Chaos. 

I have had 1 about 3 months ago.  No luck with the pain.  I am a episodic sufferer, but have been in cycle since June.  Search the site, there was quite a thread not too long ago on that topic.  Good luck

Steve

Oh yeah I almost forgot... Make sure your insurance will pay for the block.  Mine did not and it was too late when I found out. Good luck

Captain.Chaos wrote on Sep 28^th, 2010 at 5:27pm:

M'kay. That answers one question. What about the other: Have you visited clusterbusters.com yet? Infinitely better results than methysergide, and no fibrosis because you don't take this treatment every day.

Hi Bill
Humm, After speaking to the Doc his words were "seeing as you've had this bout over a year it's going to be difficult to break it".  So what he offered was a poke and hope job with no guarantee what so ever that the "normal" treatments will have any effect. I've already tried Prednisolone and and a couple of other treatments. I'm going to start on the Lithium, but he's not confident it will work. I know diddly squat about nerve blocks, so I guessed that you guys are the experts and someone here would have had some experience of having one and the likelihood of it being effective.

I've just got the O2 and the Sumatripan injections (which make me feel like shit), I'm drinking the RedBull & margarita mix (san alcohol) not together I might add, I'm going to give the seeds a go and anything else that might break it.

You guy's know way more than I do about this as I've only recently become a sufferer so I'm going to ask some really dumb questions. To answer your question I'd give my left arm (can't give my right arm as that's reserved for my dream woman, she doesn't know that she can have it though) and go to church every Sunday (you can't have the house, the bank owns most of that the same goes for the car) to get rid if the headaches and have a whole nights uninterrupted sleep. There is also a headache free/drug side effect pay off to consider, what's the point of taking drugs that may not do anything but have the very real and distinct possibility of permanently damaging some pretty vital organs. I've got something that makes my life manageable and bearable I'm going to go with that first and ask the stupid questions about the other treatments before I have it done.

I don't know anybody else who has these, I don't trust doctors especially when they say they're going to poke and hope at a treatment, as what I've got they say hasn't got a cure. So I turn to you guys for advice.

Captain Chaos

Brew gave it to you great on the nerve block, they say it may
break cycle.  But, I'm going more with at best short term fix.
1st one I had relief for 2 or 3 days 2nd one 1 or 2 days then 3
one didn't seem to cut it at all.  All with same cycle.  But, if
you are in daily pain it may be worth a try for a day or two of
sleep.  That's what I got from the first one.    

Peace,

Boski

Captian,

That sounds like a beast azz kicking plan!! I came here 3 years ago at the end of my desperate rope, and i learned how to take control of my life without the fear.

Now you know someone who got clusters too.
You dont have to fear the beast, but you respect it cause it is one bad az* MF.

Now that ur here, pick up an ore and start rowing.
Coach Bill

adding my experiences to the list:
ONB gave me first pain free night in current cycle, but then tapered off after a day or two. Not really worth it to me especially when O2 works so well.

Also, I tried Verapamil in a previous cycle and it didn't work. This cycle my neuro ramped me up to 960mg per day - which I am told is a lot - when it finally kicked in and worked. I have had 3 HAs in the past two months while on the 960mg/d...a lot of shadows but few headaches.