this is my first post since recently joining website so apologies if I ramble on.
i have suffered CH for over 12 years but only been correctly diagnosed the past 5 years.
im in the middle of a bout and seems to be lasting a lot longer than normal (currently 12 weeks). To make it worse I seem to be running at a cluster everŷ 6 hours (which is not normal for myself).
on a onset of a bout I take a very high dose of steroids which seem to keep the beast away......until I taper down and bang it returns.
i also take verapamil but only 160mg and seems to have no effect. Today I have gone to 240mg but very nervous on side affects.
Also have home oxygen but for me only seems to delay an attack and evenentully end up jumping for the injection. Again very nervous as I am taking above recommended dose at moment.
Should I be taking verapamil for the rest of my life and what dose should I be aiming for
is there anything else to prevent attacks or am I just not taking a high enough dose.
do steroids work for anyone else or do you feel it returns with avengence when taper down.
anyone else expected the bouts to last longer as you get older (I'm currently 34)
doctor also prescribed Valium yesterday but think that was cause he hd no other idea what to do......it's hard to understand that in this day and age there is no cure for this horrible condition.
sorry if this post sounds like all newbies and many of have you answered in previous posts.
all th best James
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