Skyhawk5 wrote on Dec 7th, 2008 at 12:12am:Wendy,
I am not a typical case, and only gave my case as an example. Here is my story. In the beginning I was chronic for 28 months and was put on verapamil and this seemed to break me into Episodic. Several years later I went into a cycle that lasted over 9 months so we added Lithium and this seemed to break this cycle. So I have been taking these meds since then. 15+ years.
My Neuro and I see no reason to change this as the risk is high. Would you agree? Like I said I'm an unusual case but an example of the oposite of what is generally thought.
Best, Don
Hi Don
I can't agree or disagree, I don't know! Wish I did.
I was asking because your story is a bit different to many/most and I wasn't sure I had understood correctly.
Going straight to chronic is so awful, I can't contemplate how you coped because you had no pain free time right from the off.
CH is a wily beast and morphs, and we are all different and react differently to what we are treated with.
Also different doctors do different things to treat, that's why it is so important to share info and why often we seem awfully "nosy".
Certainly the expert advice here has been that medication "holidays" are usually suggested after a number of years of continuous use, but I think this is often when people's tolerance to Verapamil has resulted in the doses becoming what Goadsby calls "heroic" i.e. really huge and side effects are happening.
One of the things they do here with intractable chronic CH is take people off the Verap and do in-patient DHE intravenous treatment to try and "break" things or at least buy the person some painfree time but this involves hospital stays and is by no means guaranteed to stop the attacks for any length of time.
Some people then go back onto the prevents afterwards, but some choose not to return to permanent use of prevents at all and seek other avenues such as aborting only, using "alternatives", short course steroids or in some cases the ONSI operation.
You have to be guided by your neuro, who hopefully knows
all the options (you need to fill him/her in if they don't!!!), then make your own decisions based on what you have learned and they suggest.
No-one can tell you what is best because they aren't you,they can only tell you what they know or what has worked for them or what options there could be.
Best wishes to you and wishing you as much pain free time as you can get by whatever means you choose
Love
Wendy