Normally every 2 years starting in March through the beginning of June I get really bad CH's. Why 2 years I don't know???  This year it started early @ the end of February so my doc and I tried some new stuff...I started taking Topamax every night at bedtime.  They actually went away!  I couldn't believe it...I felt so lucky and blessed!  Unfortunately last week was a nightmare, CH's every day and some real bad ones too...now in a "normal" cycle Memorial weekend is usually pretty bad anyway.  What I'm wondering is, do you think it's possible that I just pushed them back a couple months and they are going to continue??? OR is it possible because this last couple weeks were usually the worst it's rearing it's ugly head for the finale???  I realize that nobody can know for sure but has anyone had a similar experience???  I appreciate any feedback, after thinking I was in the clear for 2 months I am actually quite depressed at the moment and am currently rebelling against sleep in fear! :'(

For many....just when you think you have them all figured out, they will switch up on you. It's more common than you might believe for cycles to change. Although I know it's hard not to, don't panic just yet.

topamax has been my magic bullet since 99 BUT I still get breakthrus and some really bad ones (I'm chronic), so it may just be the "wind-down" of your cycle.

glad you got some relief for a while at least.

Have you tried the O2 (read on the left under Oxygen info for directions on proper use) - that will usually stop a CH pretty quick (3-10 minutes).

Hope this is the end for you for another couple of years, but stick around and keep up on the latest in treatments...

:-*

Adding similar to Barb's post, preventatives can do a fine job of keeping hits away, but they are not foolproof and maintaining one level of a preventive med may not suffice if a cycle fluxuates.  There can be times of more intense activity, the accompaniment of an abortive like oxygen in treatment will help.

During a cycle, it's good to stay in contact with your doctor to give feedback, sometimes preventatives may need to be altered.  A mid-cycle or end-of-cycle force of activity is not uncommon.

I believe Topamax has some serious buildup time. I do know that it's not something to quit suddenly. I'm not sure of the buildup but they can spend a couple weeks on the taper. I took it for epileptic seizures years ago. It was good and bad on several levels.

Charlie

Hey Charlie, did you experience alot of side effects on the topamax?  I've read about acne, losing your hair, memory problems, weight loss...there are some pretty scary stories out there.

I guess that question is for Barb too... I see you have been taking it for a long time.

Maybe the doc should consider a dosage increase.
all the best
the bb

A lot of people experience side effects, but I haven't had them like others. I've been on some pretty high dosages at times (always took the whole dosage at night so that may be why I didn't have the side effects). Right now I'm on 100mg).

The short term memory loss is about the only thing I've experienced and I'm OLD so that may not even be a side-effect - just my age.

But it worked almost immediately for me also. I was in really bad shape when I started it and nothing had worked and then WOW!

But I do keep O2 handy and Red Bull in the pantry for the hits that come thru. And visit my neuro twice a year. Also there are times I hit a "high cycle" and have to "up" the dose of topamax and go to the "big drugs" (DHE-45) to break the "high cycle" - (those are the times I dread), but most of the time I lead a "normal" life with just minor hits that O2 and Red Bull can clear up in a few minutes.

You just have to figure out what's "right" for "you". We're all different and what works for one won't necessarily work for the next one of us. We can only tell you what works for "us".

Wishing you the best and hope your cycle ends soon.  :-*

loribaby wrote on Jun 1^st, 2011 at 11:03pm:

Hey Charlie, did you experience alot of side effects on the topamax?  I've read about acne, losing your hair, memory problems, weight loss...there are some pretty scary stories out there.

Yes!

Topamax caused a little hair loss but then every anti-convulsant seems to do that--the one I take now included. Topamax definitely caused serious memory problems and I began to question every thing I did. Rightly or wrongly, I never paid much attention to what's sneaking up on me. The sad thing is that no other drug worked so well for my seizures.

Others here seem to get along fine with this thing though and a few side-effects are probably an equitable trade for the horrors of CH. When I was getting hit, there really weren't many drugs for it. Inderal was about it. It seemed to work after a week or so.

Charlie