but, I thought it might be some encouragement for newcomers. I wanted them to know not all of us have put the beast firmly into a box relegated to the past. I just returned from a visit with my more aggressive neuro/headache specialist (I have two, one local in case, and one further away who is more experienced with CHs) and he decided to get more aggressive once again. I've gone back into a high cycle of my chronic condition, so...I am back on a longer taper (3 weeks) of methylprednisone, staying at 640mg of verpamil, and added lithium to the mix. He hopes this will at least get me back to my previous chronic baseline, as do I.

Anyway, I'm finding ways to keep my abortive supply up, my O2 charged, and my life is lived in between hits. I'm fortunate with that, since this new cycle actually seems somewhat confined to a period between 10:30AM and 2:00PM, along with one or two hits around 11:00PM and 1:30AM. Plenty of life and sleep in between. So for the rest of you, remember: we are the fellowship of sufferers who go to war every day with our sadistic torturer, but we yet live! Blessings. lance

Sorry to hear that Lance. :'( But glad you posted it. Hoping this mix pushes him back a bit.

Joe

Hoping this helps you Lance.

You are so helpful and kind to everyone here, Lance.  I sure hope you find the right mix to help you through.

Hang in there.

Jeannie

Hang in there Lance, we're all rooting for your success with this new mix! ;)


Keep us updated...
-Gregg in Las Vegas

Jeannie wrote on Mar 30^th, 2012 at 3:58pm:

You are so helpful and kind to everyone here, Lance.  I sure hope you find the right mix to help you through. Hang in there. Jeannie

A-men!!!!  8-)

Thank you, all. The prednisone is doing what it does at the high doses. I've had two pf days in a row. It's kinda weird though, if you know what I mean. Won't let my guard down cuz the doses go down, and that's when we'll see if the really low dose of lithium helps. At any rate, I'm grateful for the intermission. Maybe remission is right around the corner! God bless. lance

Quote:

...we'll see if the really low dose of lithium helps.

What do you and your doc consider to be a "low dose?"

I just love your positive attitude Lance.    [smiley=applause.gif]

Lance- I find that you are so sweet and caring. I really hope that a breakthrough happens for you...I pray for that. Keep your spirit up...don't let the beast win!
God Bless,
Gloria

Brew wrote on Mar 31^st, 2012 at 10:15am:

Quote: ...we'll see if the really low dose of lithium helps. What do you and your doc consider to be a "low dose?"

Yeah, that's a good question Brew. I'm only going on what the doc said was "low." Right now, it's 150mg a night. He didn't feel at that level that I would require monitoring too closely. Do you have some thoghts on the matter? Blessings. lance

Lance...that is a very low dose...is this the first time that you have tried lithium...for me 600 mg. per day is the magic bullet along with verap...wishing you nothing but the best.....Lenny

Lance, "I hate it for you". I just came out of a long cycle. 8 mnths.

Lithium should be monitored by Blood work especially in the beginning. It can become toxic. Best CH results are near the toxic level. My Father became toxic and it wasn't pretty. (non-CH).

Thru this cycle I took 900mg of Lithium, my maintenance dose is 600mg.

Win the battles, and I'm praying you have more success than not.

Don

Thank you, all ya'll, for your support and kind words. And for the lithium info. It's good to know what some of the mixture levels have been and that have worked for you'se guys. I'll stay on top of this, push for an effective dose that will "get me smilin'" and let you all know how this goes. I remember those early days, 35 years ago, when I had no abortives and no preventatives. It was like dental surgery without novacaine. I'm grateful for the weapons I do have and the life I can live around the pain. And for all ya'll. This is truly my second home. God bless. lance

Regarding Lithium Dosing.

At 900 mg a day it was blocking 70-80% of my attacks. Hit my 40's, and it started to lose its effectiveness. Now using 1200 mg when on cycle and it blocks about 60-70% of my attacks. I've never had a toxicity issue at this dose. I get  a little bit of the hand tremors, not much more then what you'd expect at 50!,  ;) no other significant side effects. It's the only prevent, other then the Batch regimen, that I take.

Crossing my fingers for ya brother.

Joe

Guiseppi wrote on Apr 3^rd, 2012 at 9:33am:

I get  a little bit of the hand tremors, not much more then what you'd expect at 50!,  ;) Joe

Hey Joe... :o :o :o :o :o :o :o :o :o :o :o :o :o...i do believe that the hand shaking is one of the signs of "toxicity"...i have been taken off of it several time's due to bad blood (and that's @ 600 mg.)

Appreciate the heads up, we did several blood tests to rule out the toxicity as you're correct, hand tremors ARE one of the early indications of toxicity, it's also a common side effect. ;)

Joe

i am elated to hear that...the past week and a half (a few people that i care about very much have gotten some not so good news) i guess i just panicked a bit when i read about the hand...Lenny

I like that you have my back brudder. ;)

Joe

How are you feeling Lance?  Any improvement? 
Sure you hope you are feeling better. ;)

-Gregg in Las Vegas

Thank you for asking, Gregg. I was thinking about updating. The pred taper I'm on is a long one. Still taking it and it's doing what it does...making me hungry, and holding off the worst of the attacks. I am sleeping most nights but I don't know how much of that is attributable to the lithium or the pred taper. I'll know in a week I think. But on the up side, I've had a great Holy week and Easter. I am grateful for that. Didn't have to leave services at any point this past week, and that was a triumph all by itself. I'll post about the lithium when I know more. God bless. lance

That's all great news Lance! 

Hope the lithium works for you. ;)
-Gregg in Las Vegas

Hi Lance, are the new meds working for you?

Wishing you well ;)

-Gregg in Las Vegas

Hi Gregg, and thank you for asking. I'm still taking 10mg/day of methylprednisone along with the low nightly dose of lithium. And yes, at the moment, I am down to one or two attacks during the day (very easily aborted with Monster and O2) and none at night. Not sure if it's the lithium or the pred or both, and I won't really know until I stop the pred altogether. Right now, I'm enjoying uninterrupted sleep and unusually long periods of time during the day to get things done. I'll let everyone know what happens when I come off the pred for good. God bless. lance

Lance, we can all learn from your positive attitude. At about 3 years into this thing, I'm having more and more ups and downs about it. After coming off of a 115 day cycle, I am only 3 weeks PF and I started the feelings of a new cycle yesterday. I'm hoping it's just some out of cycle hits, but who knows. Either way, it sent me into immediate sadness to think of dealing with this again when I just got some sanity back. I will try to think of your positive attitude and hope that helps, along with some Red Bull and O2.

Awesome to read about your improvement Lance! 

My guess is you are trying to catch up on everything you've been falling behind on.   

Enjoy ;)

-Gregg in Las Vegas