I could present this question this to my neuro., however, I am certain I can get a much more reliable answer here.

I am a 38yo female diagnosed this past spring w/ CH.  After an ER visit and every test short of a lumbar puncture, I saw a neuro.  My symptoms are classic and when I first found this site, I felt as if I were home!

I went on Verapamil and it worked for me.  I decided to stop taking the verap.  this summer (my neuro. said I could try to go off if I thought my cycle had ended).  My HA came back within days.  I went back on and the HA got better again.

For the last couple of months, I have forgotten all about CH. (although I know I have a couple of  shadows per week)  Either it's the verap. or my cycle seemed to be over(I quit coming to this site, I forgot how bad the pain was and even begin to second guess the whole CH thing).......Until now!

I know it's back!  It's starting the same way!  My hits are on the right side again.  My temple, ear, teeth, neck and eye (right side) are all involved.  The pain comes and goes. My nose runs.  It's all so familiar!  Rationally I know that tylenol and Motrin are not going to help, but I find myself constantly in the medicine cabinet trying to prove that it's something else!  (I don't have O2 because the verap. was effective but I am going to call tomorrow and have it delivered)

My question is......Am I chronic or episodic?  If I stopped taking the verap. and my HA came back, was I ever in remmission to begin with?  Or, is this a new episode and the verap. is ineffective?

What ever....I'm back!  :'(

lisam wrote on Sep 28^th, 2008 at 5:39pm:

I could present this question this to my neuro., however, I am certain I can get a much more reliable answer here.

Thats a huge mistake, we are not doctors.....talk to your Neuro!

Welcome!

Listen to jonny on this one. There are so many things that differ betwen CH patients you really need to discuss all your options with your neuro.

Maybe I possed my question incorrectly.....I am very fortunate to have excellent health care insurance, and I use it!  However, given the fact that CH is so often misdiagnosed and is so seldom seen by medical professionals, I would appreciate the insight of those who have personal experience with CH.  :-/

I don't think anyone can provide a sure answer for you.

You have yourself analysed the situation. It might have been the Verapamil, might have not. The CH is different for all of us, too, so based on that it's also difficult to make any kind of logical conclusions.

I remember that many who take Verap still get shadows and hits every now and then. With a large enough dose some get completely symptom free. Rozen writes in his article about CH that some people only need 120mg per day for that, but personally I don't know anyone like that. How much of Verap did you take per day? Of course it's also possible that your last cycle just ended naturally and you just interpreted it as Verap working - how long had the cycle gone on already then? How long did you take Verapamil at what dose until it stopped?

I can say for sure as a chronic that concentrating on if you're a chronic or not isn't going to help. If you're chronic, you'll deal with it. If not, you'll deal with it as well. Worrying about it is only going to make your life more difficult. Being chronic is far from being the end of life as we know it :)

- Best regards and PFDAN,
Rosa

Verapamil has me in the same boat at the moment.  If I stop taking it the headaches return.  If I stay on it they "mostly" stay away. I get low level hits every three days or so for a day or two.

To me, mostly PF but not 100% PF means I'm still in cycle.  

There is a school of thought out there that says preventatives and triptans extend cycles and cause them to morph.  Mine certainly have since I began taking them.  But the PF time they buy me is still worth the extended cycle times.  I'd much rather have a longer cycle that doesn't really interfere with my life.

-Dennis-

Verap is not a permanent cure for CH, only a temporary relief during the active phase.