So here I am about a month into my first cycle in 5 years. After a rough first couple of weeks I've had a quiet head thanks to my daily 25 mg x 2 Topomax and Batch's vitamin regimen, and my trusty O2 tank.

Historically I seem to recall my cycles going about 2-3 months. But it's been so long that I can't remember how they stopped, and especially how I knew it if I was getting relief from the Tope. And now the vit'mins - which to be sure I'll be continuing as a daily regimen.

I'm figuring that you wise folk here will have more precise advice for me than my neurologist, who's excellent to a point. Any and all input appreciated!

David

I'm going on 3 years pain free by sticking religously to Batch's regimen. I'm a confirmed disciple! ;D

Joe

If this is indeed the end of your cycle, one piece of advice I can give you is to stock up on any meds you are taking during your off cycle.  Too many have ended their cycle, wanted to forget about it and put it all out of their mind....UNTIL the beast comes knocking again they have nothing to fight it with, their doctor can't see them for weeks and they turned in their 02 tanks and are now in panic mode.

Linda

Linda_Howell wrote on Mar 6^th, 2013 at 12:38pm:

If this is indeed the end of your cycle, one piece of advice I can give you is to stock up on any meds you are taking during your off cycle.  Too many have ended their cycle, wanted to forget about it and put it all out of their mind....UNTIL the beast comes knocking again they have nothing to fight it with, their doctor can't see them for weeks and they turned in their 02 tanks and are now in panic mode.

This was me for years...I have absolutely refused to let it happen to me again after this last cycle. Great advice.

~Jonathan

Thanks all for your input, and it's indeed valuable stuff.

But I think I didn't express myself clearly. That is, I do fully intend to keep up the vitamins off-cycle, and will indeed fill all the Tope and Sumatriptan refills I'm entitled to even if I don't need them, so I have them on hand. As for the O2, I own my own welder's tank and can get a refill within an hour, so no worries there.

But my question was actually this:

Since I'm on Topomax and vitamins, how can I tell when my cycle has come to an end? I'm virtually pain free (thank god!), but historically my cycles are at least 2 months long. I also realize - as we all know and as I've written elsewhere here - that our friend is a sly, sly beast and is if nothing else unpredictable.

I'm a total zombie on the Tope and hate to stay on it any longer than necessary. But of course hate the idea of the pain returning a great deal more.

So I'm wondering what signs my fellow episodics look for that their cycles are beginning to taper off, assuming that they're able to treat them successfully as I have been.

Thanks for reading.

David

Sorry I mis-understood you too. My rule of thumb was 2 weeks with no hits, and I would start to wean off my prevent, lithium. My maintenance dose was 1200 mg so I'd slip down to 900 mg...stay at that a few days, then 6000, wait a few days, then down to 300 mg. This was  a program I worked out with my neuro. I don't know if topomax works the same way as far as how you go off of it, but 2 weeks pain free was my signal that beasty was probably done this go round.

Joe

Thanks, Joe. That sounds like a good rule of thumb. It's a bit puzzling for me only in that I'm basically not getting any hits at all now. I don't know if that's because the cycle is ending, the tope is killing it, the vitamins are doing it or some combo of the three.

But two weeks without any action whatsoever seems like a good benchmark to begin scaling back. I appreciate your taking the time to reply.

David

my cycle came 6 months early- but i THOUGHT i was lucky because i would get 1-2 hits a day, never over k5 and even had 2 two day free ch :) my hits were always in the day, i was on what i thought was another 2 ch free day when suddenly last night at 1am BAM!!1 my first k10, omg i forgot how it was, lasted 30min, i feel asleep only to be hit AGAIN at 430 am, k8 20min, boy i feel like i went 3 rounds with tyson :( i spent the whole day with a sore head waiting for another visit, only taking d3, fish oil, added b12, also using T.E.N.S unit, fighting pain with pain, ch free day to all :'(

Rich - If you don't take the minerals along with the D3 regimen, metabolism of the D3 will leach the minerals out of your bones.

Protect your frame!

I think that Balanchine has raised a very important question.  Many of us go on meds that are designed to stop the attacks, but that doesn't necessarily mean the end of our cycle.  Even more confusing is the possibility that some of the meds we take will cause shaddows and other head pain somewhat independent of our cycles.

In my own case, my first cycle started in October of 2011. After two weeks of hell the Verapamil finally did its job and the attacks stopped.  But it was clear to me (from shaddows, eye discomfort, nasal stuffiness) that I was still in cycle for several months (4) after I started the meds.  By March 2012 most of the symptoms had abated and my neuro and I figured that the cycle had ended and I stopped the meds.

While I do have occasional mild and quite tolerable symptoms I have not had a real cycle since my first, for which I am eternally grateful.  So while the beginnings are vivid and easily identifiable, the endings seem much more subjective and hard to define.

Thanks for your reply, Traveller. I posted both for personal reasons and because I was curious as to how people judged how their cycles were ending. As you note, it's easy to know how they start!

Rich - so sorry to read about your pain and hope you've been able to get some relief. Since your issue seems to involve a surprise beginning to a cycle it might be a good idea to start your own thread about it. That way people will identify the issue right off and you'll get more responses. Good luck, man!

David

Guiseppi wrote on Mar 6^th, 2013 at 7:17pm:

Sorry I mis-understood you too. My rule of thumb was 2 weeks with no hits, and I would start to wean off my prevent, lithium. My maintenance dose was 1200 mg so I'd slip down to 900 mg...stay at that a few days, then 6000, wait a few days, then down to 300 mg. This was  a program I worked out with my neuro. I don't know if topomax works the same way as far as how you go off of it, but 2 weeks pain free was my signal that beasty was probably done this go round. Joe

That is exactly what my doctor advised me to do, though I take Verapamil as a preventive.

Balanchine wrote on Mar 6^th, 2013 at 11:47am:

So here I am about a month into my first cycle in 5 years. After a rough first couple of weeks I've had a quiet head thanks to my daily 25 mg x 2 Topomax and Batch's vitamin regimen, and my trusty O2 tank. Historically I seem to recall my cycles going about 2-3 months. But it's been so long that I can't remember how they stopped, and especially how I knew it if I was getting relief from the Tope. And now the vit'mins - which to be sure I'll be continuing as a daily regimen. I'm figuring that you wise folk here will have more precise advice for me than my neurologist, who's excellent to a point. Any and all input appreciated! David

Same situation here: 5 year break and then they returned. I'm coming out of my cycle now after two months. It's different this time. I've had two CHs that were about a 6 in pain level, and then some shadows. I drank the other day, and didn't get a CH until the next morning, and it petered out before taking hold. I'm going to hold off on another glass of Scotch for a few days.

All the other times the episodes ended abruptly like it was never here at all. This one is odd.