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jcmquix
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Need any info on Lithium
« on: Aug 1st, 2005, 10:18am » |
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Well the Dr just gave me a script for the Lithium, I think its for 300mg a day, she wants me to quit taking the Depakota ER and start this. Taper off Depakota/ taper on to Lithium of course...
I told her my cycle usually ends at the end of August, so she said it would give me a few PF weeks, the when my cycle ends, I could stop taking it until the next one begins in December....
I just want to know other people's result's & problems, things to watch for.. etc.. basic advise...
Thanks to all....
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nani
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Re: Need any info on Lithium
« Reply #1 on: Aug 1st, 2005, 10:27am » |
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Hey Charlie. Lithium (often in combination with verapamil) works well for some people. It worked for me for a few days (I still had CHs, but they were easier) and then stopped.  I was also on 300 mgs a day, but my understanding was that much higher doses would be needed for CH. I didn't tolerate it well, so I just gave up. I had hand tremors and muscle spasms while on it. Have you looked at kudzu, or the other alternatives yet? You probably should get familiar with them, before your next cycle. hugs and PF wishes, nani
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Karla
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Re: Need any info on Lithium
« Reply #2 on: Aug 1st, 2005, 4:13pm » |
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I took 900mg of lithium for 2years and it cut the number of ha I was having down from 8/day to 4/day. And they were lower in intensity. I was afraid to take the lithium but my body excepted it well. Godd luck!
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jcmquix
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Re: Need any info on Lithium
« Reply #4 on: Aug 1st, 2005, 6:00pm » |
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Thanks eveyone for the info.. Thanks for the link to your thread Eric, I thought I seen it before, I did not go back far enough...
I am going to try and taper off the Depakota ER the next few days and see how the hits go. If I start getting hit to hard I will get the script filled and start it. I am hoping this cycle will be just like the others and end at the end of August. The next one will usually start in December (I hope not), but if it does I will have the ammeo ready for then.
PFDAN's to ALL !!!
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burnt-toast
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Re: Need any info on Lithium
« Reply #5 on: Aug 1st, 2005, 8:29pm » |
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I currently on a Lithium/Verapamil mix
1200mg Lithium and 720mg Verapamil - can't do more of either. Increasing Lithium gives me hand tremors, increasing Verapamil causes foot/leg swelling.
Interesting - my Neuro. wants to taper off the Lithium and Verapamil to go to Depakote. Just can't get a break to do it.
The Lithium and Verapamil give me some control over the frequency/severity of attacks but do not stop attacks.
Tom
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jcmquix
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Re: Need any info on Lithium
« Reply #6 on: Aug 2nd, 2005, 6:17am » |
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Thanks Tom for the info...
I am just going to be doing the Lithium alone, so I do not know yet if the Nero Dr wil add anything else..
She understands that my cycle usually ends about the end of August, so she said that she does not want to put me on a bunch of meds...
I do hope that mine ends at the end of August, I feel for you all that have to live with this thing year round, and all the side effects from the meds, my heart is with you.
PFDAN's to YOU !!!
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Margi
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Re: Need any info on Lithium
« Reply #7 on: Aug 2nd, 2005, 9:01am » |
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Charlie, you might want to try the lithium pulsing method then - at that low a dose. Standard cluster dose is 900 mg.
The pulsing method is tricky but when it works, it works quite well. The trick is to identify your hardest hit of the day and see if it comes at a regular time. It does for some clusterheads, my hubby included. You take the lithium 2 hours before that hit. The theory is that if you can kill that attack, the rest will hopefully die as well. This method worked well for Mike in the early stages of this current cycle. Gave him about 4 months of few to no hits - he was still in cycle but the lithium kept them at bay. Now, however, is a different story. He's just getting nailed and is approaching 8 months. He's totally off the lithium now. We had added verap into the mix as well and that just seemed to escalate activity for him. I think the preventative meds prolong things in the long run and make for longer cycles. He's just doing O2 and trex now and we are starting to see a small diminish in activity. Fingers crossed.
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jcmquix
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Re: Need any info on Lithium
« Reply #8 on: Aug 2nd, 2005, 9:11am » |
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Thanks Margi...
I thought I seen a tread, or a response from you about that. I always seem to get my hardest hit at 1am, then again at 3 am, then the last hit of the night is about 4am. The I usually go off to work at 4:30am, if I get hit hard at night, I have a sore head all day long. If I do not get hit hard in the night, I usually have a heavy head (Heavy Shadows) all through the day, I get a little break around noon to 4pm.
The Depakote ER was stopping any daytime hits, but I think I was picking them up at night. Well I am just tapering off the Depakote ER 250mg every 3 days. Once I am off it, I am just going to try the Melatonin 12mg & Benadryl 50mg at night, for a few nights and just see how things go. If I need then I will start the Lithium, other wise I am going to save it for the nexy cycle.
I feel for You & Mike, we will be Praying that he gets some PF time soon.. Thanks for all the Family Support.
Charlie
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jcmquix
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Re: Need any info on Lithium
« Reply #9 on: Aug 3rd, 2005, 10:54am » |
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Well I have been tapering off the Depakote ER since Monday, well I am starting the night time attacks again.
I guess that if this keeps up I am going to start the Lithium, I have to pick it up today.
I got the usual hits again at 1am & 3am, the hit at 1am was really bad.... I just rode out the hit at 3am. I am thinking they are going to increase in pain as the Depakote ER wears off, it was helping to keep the pain down. Go Figure...
I dunno anymore, I am just going to see what happens over the next few weeks.. I am in agreement with alot of people here, this is the worst series (pain wise) of attacks that I have had.
PFDAN's to ALL !!!
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
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E-Double
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Re: Need any info on Lithium
« Reply #10 on: Aug 3rd, 2005, 11:47am » |
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Though I haven't started (not sure if I will) the Lithium, Dr. Sheftell prescribed it for me @ night....to take prior to bed.
This would avoid some of the potential side-effects that one might feel as well as to help with some of the nocturnal hits that started creaping back.
I couldn't do the pulsing method even if I wished since I don't really have patterns.
Oh yeah....do not take NSAIDs while on Lithium!!! (indocin, motrin, advil, naproxen, etc.)
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I can't believe that I have to bang my
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But the blows they have just a little more
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jcmquix
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Re: Need any info on Lithium
« Reply #11 on: Aug 3rd, 2005, 12:30pm » |
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on Aug 3rd, 2005, 11:47am, E-Double wrote:| Though I haven't started (not sure if I will) the Lithium, Dr. Sheftell prescribed it for me @ night....to take prior to bed. |
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I might try this first, just taking it at night...
on Aug 3rd, 2005, 11:47am, E-Double wrote:| I couldn't do the pulsing method even if I wished since I don't really have patterns. |
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Mine are usually about 1am or 2hrs after I fall asleep, maybe it will work for me...
on Aug 3rd, 2005, 11:47am, E-Double wrote:| Oh yeah....do not take NSAIDs while on Lithium!!! (indocin, motrin, advil, naproxen, etc.) |
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Can I take it with the Melatonin & Benadryl ?
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
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E-Double
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Re: Need any info on Lithium
« Reply #12 on: Aug 3rd, 2005, 12:50pm » |
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on Aug 3rd, 2005, 12:30pm, jcmquix wrote:
Can I take it with the Melatonin & Benadryl ?
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As far as my doc told me....No problem 
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I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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jcmquix
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Re: Need any info on Lithium
« Reply #13 on: Aug 3rd, 2005, 12:52pm » |
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Thanks E...
Sorry at work.. Boss is around, can't IM....
PFDAN to YOU !!!
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
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bnfreeman
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Re: Need any info on Lithium
« Reply #14 on: Aug 3rd, 2005, 3:25pm » |
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I started it a little over two weeks ago. The first 2 days were bad, then I had 4 PF days in a row. I have not been pain free since last Sept. But then things picked up again. Although my cycle is kind of on a down time, I know things will ramp up in October. I take 300mg in the morning and 300mg at night. I noticed the first day of taking it I had to pee like a pregnant lady. I have some hand tremors and some muscle spasms. But nothing too bothersome. Hope we all find relief soon. Oh yeah I also take it with Verapamil and some other stuff.
Brandi
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jcmquix
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Re: Need any info on Lithium
« Reply #15 on: Aug 4th, 2005, 5:28am » |
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Hi All...
Well I pick up the script last night for the Lithium, Its Lithium Carb. The Dr put on the script for me to take 300mg for 3 days, then go to 300mg 2x a day. I have not started it yet, going to see how the HA's go for a few more days.
I also know that when I get hit at night, the hardest hit usually comes at around 1 am, so I think if I start it, I will start just taking it a bedtime.
Just more worried about the side effects... So I will go from there.... Thanks to all for the info, some is better than none..
PFDAN's to ALL !!
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Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
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