Okay, so last Thursday, my neurologist's associate (he wasn't in the office), took me off Topamax cold turkey because I was having issues with my vision.

I'm still on 600mg. of Lithium, but my migraines came back with a vengeance within 36 hours.  There are many other problems I'm dealing with (caused by withdrawal based upon the TON of reading I've done over the past few days), but here it is 1AM, and I'm on the forum, so there's more.

The Beast used to visit at 5PM, 12:30AM, and 4AM like clockwork.  While on the Topamax, I would awaken occasionally to the ones that hit while I was asleep, but they definitely didn't seem as intense as they used to be.  I was beginning to think that I was out of this cycle that's well into its fourth month.

My question is this:  From anyone's personal experience, is it possible that I was still getting the cluster headaches all that time but that the Topamax / Lithium combination was just making them more bearable?

Like clockwork, I was awakened out of a deep sleep at 12:25 this morning and immediately turned on the oxygen.  I ran it for 20 minutes, took off the mask, took one breath, and turned it back on because this puppy was NOT gone after 20 minutes.  It seems to have eased up after about 35 minutes -- which is not the norm for me.

On a side note, I called the neurologist's office on Monday and left a message on the nurse's line letting them know that we need to get me back on something right away.  I didn't get a call back all day and was getting annoyed... and then the phone rang at 7PM!  It was actually my neurologist, himself, calling to ask how I was doing and to let me know that he'd instructed his staff to FIND an appointment for me this week (he's booked through July at the moment).  I couldn't believe that he was the one who actually called.  How wonderful to know that he really DOES care about his patients.  :)  I have an appointment at 1:40 on Friday.

As always, thanks for the help!

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From anyone's personal experience, is it possible that I was still getting the cluster headaches all that time but that the Topamax / Lithium combination was just making them more bearable?

This is a tough question for me, partly because I'm chronic, and as such I've just about given up that I'll be pf ever...so I settle for, will this (whatever I'm trying) reduce the attacks?  I found topomax to be less than useful, except for losing weight. I do have the same question you're asking about the D3 and Fish Oil supplements. It's just possible it is helping to reduce the intensity of the attacks while not eliminating them.

While I don't have an answer to your question I would encourage you to look for something that will at least reduce the intensity or duration or frequency of attacks, and that this can be as helpful as eliminating them. That from a chronic's point of view, anyway.

Good luck, and God bless. lance