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

Prednisone is the form of this med most common referred to here. Prednisone and Cortisone are in the same family of drugs.

It's widely used for a few days to stop a cycle quickly. A longer active preventive, such as Verapamil, is started at the same time (because it takes a number of days to become effective).
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
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See the PDF file, below.

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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.

Yeah steroids work one of two ways.....for a fortunate small percentage, it will abort a cycle. For the rest of us, it provides a temporary respite but the beast comes back, with a vengeance!!!, as soon as you go off. As Bob mentioned, it's often used as a transition to give you abreak while your prevent builds up.

If I follow you, he's still resistant to 02?

Joe

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

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Hi Joe and Bob Johnson,

I let him know that even though I might only have a cluster period once or twice a year, and yeah having it for 5 days is better than 2-3 weeks... It would still be wonderful to have an abortive that would kick in very fast without having the side effects of an immitrex.

He assured me we will be getting there (the O2 abortive) but atm it will just remain an option for when the attacks get out of hand. He wants to put his efforts on lowering the time span over which a cluster period manifests itself. If we can do that without other influences, we can add the O2 in afterwards.

I don't know if that really seems a valid reasoning but it does seem plausible to me. In any case it means that I will not have an O2 tank at my disposal just yet, unless I try to find one myself.

I do really hope the cortisone treatment will work. I have no idea if it is prednisone that I'll have to take but unlike most of what I read here, I won't be upping the topamax dose nor will I be taking any extra preventive medication along with it.
So I really don't have a clue how this will work out but I'm hoping for the best. At least I've felt good for quite a while now and I hope it can stay like that at least a little longer.

Joe, you say that for many people who are following a steroid treatment, the beast comes back with a vengeance... :( does that mean that the hits get more frequent, or on a higher pain level?

I also wonder if a cortisone treatment like this is through injection and where would the injection on the body occur, or do we massage an ointment onto our skull?

Damn, I spent quite some time with the neuro but now so many more questions are coming up.. lol
We didn't actually discuss how I should be taking the cortisone. He only said he'd make sure my gp would get all the necessary info.

Anyways, as always, thanks for reading through my posts and for taking the time to reply.
Cheers and wishing you all the best!

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.

Hey RuVa:

When I come off Pred and the rest aren't working that's when
the good spirits really come in handy!  Seems like the beast
kicks back harder and stronger.  I dread coming off and beg
the Doc. for more but she just tells me NO you have had
enough.  Not good to take too much.  Everyone here will
tell you why!  But, it works to get the others going for some
and not for others.   I'm one of the others.  Doc. keeps
asking why we haven't cracked this cycle yet? I remind
her My friend hangs for the long haul not just here today
gone tomorrow type visitor!  Well, I wish you luck with
your combination for PF days ahead!  I'm here if you want
rant a bit or chat whatever.

Peace,

Boski

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.

Thanks for the replies!
It is comforting to know there are others who I can turn to  :)

I had indeed hoped O2 was amongst the things the new neuro would work out for me, but at least I feel I can debate with him even if O2 is not on the list at the moment. He also assured me I can call anytime and leave a message when he's not available so he can call me back. In a way, I do feel more "involved" with this neuro than with the previous one.

Oh and thanks boski for the invite, same thing for you.
Send me a pm if you feel like talking  :)

I wish PFdays for all of you too!