Hello all,

finally I've had a meeting with the new neuro.
Seemed like a nice fellow, let me talk, wasn't sceptical about me looking stuff up on the internet.

We discussed verapmil or isoptine (same substance?) but since there are other side effects involved and before it can even be started I need to go on cardio-examination along with cardio-follow ups during the preventive treatment, we discussed an alternative.

Since O2 is purely an abortive, we will still keep that open as an option but he's not yet ready to give up on a preventive.

Atm I've been taking 50Mg for the last 3 weeks and I feel great. The neuro suspects that the negative effects are not necessarily from the higher dose of topamax during and after a cycle, but just really as a result of everything going on in the brain.
For instance the unstable serotonin levels, they can cause the buzzing feeling in my head according to him.

So the plan is to keep to the low dose of 50Mg. I will not stop taking topamax, and I will not raise the dose when I get a cluster headache.
Instead, I'm supposed to follow a highly intensive cortizone treatment over a short amount of time while sticking to the 50mg topamax dose.

According to the neuro he has had several successes where people with hefty attacks during night or day, have had their cycle reduced from 2-4 weeks to 2-5 days.

Now, I could have missed it since I didn't get any sort of reply including this kind of abortive and I wasn't looking for this in particlar either, but I haven't seen any discussion on cortizone here. (I intend to use the search function though to see what I can find here)
I would like to ask though if anyone here has experience with a cortizone treatment?

I hope he hasn't been telling me crap but he seemed pretty capable and understanding to me.
He would send a letter with instructions to my GP so that she'll know exactly what to do when I get my next cluster headache.

Anyway, this is an update on how I will try to cope with future CH's but it'd be great if you guys could share your thoughts with me.

Cheers and hope you're all having a good time!
Ruben

Oh, I've heard and read about prednisone before but didn't know or realize it was in the same family as cortizone.
Thx for the pointer, I know where to look for more info now!

The neuro didn't tell me the name of the medicine I'd have to take, or how, or how often. All that info went to my GP so I'll have to contact her again in a while.

Well, it's a relief that it's actually something I've seen being mentioned here before. That means there's more people following this kind of treatment. That gives me good hope.

Here is a guide from a European medical journal which your doctor may appreciate. (See PDF file below.)

Pill form is common and it works very quicklyl. The idea is to stop attacks rapidly with the Cort/Pred and--at the same time--start using a longer acting preventive med (which takes a number days to become effective). 

Because of the side effects of the Cort/Pred, it's used for about 10-14 days only. But, not to worry, if you say with this brief use.

Yea for me prednisone only works above 60mgs.  Usually 80, but Dr will only let me do that for two days.  Usually a two week taper on Prednisone until Verapamil is supposed to take over.  I have had cases when after the prednisone was gone the headaches got a lot worse.  My guess is that's just the nature of these and under 80mg prednisone doesn't work for me anyway.  It may reduce the number but it doen't get rid of them.

Sucks he won't give you O2 yet, maybe he needs to go through one of these.  It works wonders for most of us if used correctly.

Good luck and PFDAN soon.