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Topic: Chedden's Lithium "Pulsing" (Read 1607 times) |
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unsolved1
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I did take this info to Dr. Diamond from the Diamond Headache Clinic and she said "yes, this can be an effective treatment for some".
Just thought I'd let you all know.
She changed my Lithium dosage to only 1 pill before bedtime.
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nani
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Re: Chedden's Lithium "Pulsing"
« Reply #1 on: Jan 19th, 2005, 7:36pm » |
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I still don't have any answers about how to make it work for me.... 
Maybe I don't have CH afterall... 
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unsolved1
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Re: Chedden's Lithium "Pulsing"
« Reply #2 on: Jan 19th, 2005, 7:42pm » |
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I wish it would work for me too 
going back for another round of Histamine tonight.
Hoping for at least 6 weeks of PF time (it would be nice anyways) 
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nani
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Re: Chedden's Lithium "Pulsing"
« Reply #3 on: Jan 19th, 2005, 7:46pm » |
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*crossing my fingers* for permanent PF time for you Michael...Lord knows, you deserve it.  Sending prayers.
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LeLimey
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Re: Chedden's Lithium "Pulsing"
« Reply #4 on: Jan 19th, 2005, 7:46pm » |
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Good luck  I hope it does the trick for you
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Gator
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Re: Chedden's Lithium "Pulsing"
« Reply #5 on: Jan 19th, 2005, 8:06pm » |
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Lithium didn't work for me either - even at 1200mg.
Editted to add: Duh, now that I went and read the thread in question I know that his method would not work for me. When I was first put on lithium, the neuro prescribed 300mg, 30 - an hour before bedtime. Still got the wake up calls and daily hits. At that time lithium was the only med I was taking. I am glad that some people are getting benefit of his method, but the dude does come off like a pompous arse suggesting that if your attacks are not precisely timed you probably have migraines. As if his flavor of ch was the only one available.
Good luck on the Histamine thing.
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| « Last Edit: Jan 19th, 2005, 9:44pm by Gator » |
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Mr. Happy
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Re: Chedden's Lithium "Pulsing"
« Reply #6 on: Jan 20th, 2005, 12:02am » |
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on Jan 19th, 2005, 8:06pm, Gator wrote:| I am glad that some people are getting benefit of his method, but the dude does come off like a pompous arse suggesting that if your attacks are not precisely timed you probably have migraines. As if his flavor of ch was the only one available. |
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Aw, c'mon, Gator. At least he's coherent and uses a spell checker. Doesn't sound like a 100%er to me either, but at least it gives the natives something to try. Doc's love this crap. It gives them reasons to do trials and publish reports, even if the findings don't amount to squat.
Glad I don't have to do light metals,
RJ
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Margi
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Re: Chedden's Lithium "Pulsing"
« Reply #7 on: Jan 20th, 2005, 10:18am » |
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you know....the animosity towards someone who brings us a viable treatment plan never ceases to amaze me here.
Just because Chet mentions the characteristic of clusterheads having regularily spaced attacks - he gets nailed and labelled. It IS a common symptom. My husband has ALWAYS been that way - you could set your watch by his attacks. What's so wrong with that? That factor, by the way, is what did finally lead to him getting a positive diagnosis - it IS a classic trait. Remember, there IS circadian involvement with clusters - it only makes sense that hits are regular. When you add meds into the system, could it be that contributes to changing the body's natural rhythm? Why is this such a far-fetched idea?
Mike is currently taking 300 mgs of lithium at 7 p.m. and then again at 7 a.m. Tuesday was an anomoly for him, he got three hits through the day. (He was around a lot of construction dust and then we went out for dinner and he got some MSG which we BOTH know is a no-no for him while in cycle). Yesterday was totally pain free again and he has not yet missed a complete night of sleep since starting the lithium last Monday (1/10/05). We didn't change dosing pattern, although Chet was wondering if we should.
Chet has continued to be very kind to me if I've had any questions about this treatment and has immediately answered emails I've sent him. Chet's still pain free, too, by the way - not that anyone has cared to ask him how he's doing. Nice support.
Gator, if we follow Chet's thinking with this plan, it could be that you were taking that one dose at the wrong time of day for YOU. Maybe the next hit you were going to get wasn't your "Queen" attack in your 24 hour day. I dunno - just thinking out loud.
I'm really starting to believe that verapamil is a drug that extends cycles and therefore, logically, would counteract the benefits of low dosing/pulsing lithium.
We're going to Mike's neuro this morning and she's pretty pissed that we've started this treatment without her "royal assent" and completely freaked that Mike hasn't had bloodwork ahead of time. (He did do the bloodwork last time he was on lithium and all was fine). I guess we're in for a pee-pee whacking this morning but, at this point, I could care less. All we want is for her to renew his prescription for Imitrex but that ain't gonna happen without a face to face first  .
I've printed out all of Chet's posts (minus all the shit he's taken over suggesting this treatment) and I'm going to show it to the neuro. There IS validity to the theory and we're living proof of that.
As Unsolved says here about Dr. Diamond's comments "yes, this can be an effective treatment for some" - why can't we just leave it at that and rejoice that TWO clusterheads have found some pain freedom?
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nani
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Re: Chedden's Lithium "Pulsing"
« Reply #8 on: Jan 20th, 2005, 10:40am » |
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Quote:| Just because Chet mentions the characteristic of clusterheads having regularily spaced attacks - he gets nailed and labelled |
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He didn't just mention it...he said that if we don't get hit at "regular" times, we didn't have CH.
Quote:Why is this such a far-fetched idea?
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Why is it a far-fetched idea that we all get hit differently? And that not all treatments work for all of us?
It was not the method I took issue with...it was the delivery.
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karma
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Re: Chedden's Lithium "Pulsing"
« Reply #9 on: Jan 20th, 2005, 10:47am » |
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Margi,
Let it go. Its not worth it.
Big ups on giving it a try. I hope the success continues.
Chedden, Thanks for sharing. You've helped one person and thats enough.
I hope things are working out as well as Margi says.
There are some outside the herd that want to know.
Unsolved,
Thanks for bring it up to the clinic.
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Margi
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Re: Chedden's Lithium "Pulsing"
« Reply #10 on: Jan 20th, 2005, 11:08am » |
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Karma, you know what? You're absolutely right. The herd mentality is a formidable force sometimes.
I'd like to say thanks to Unsolved too, though - for bringing it up with Dr. Diamond. I've printed out your post and am taking it to our neuro this morning.
Hey Karma, it's kinda nice being outside the herd, isn't it? The air is much easier to breathe out here. Thanks for your words of wisdom.
No more from me on the subject. Seriously, NO need to respond to this post (edited to add, I'm not referring to you, Karma - I do thank you for your sanity). I'm done.
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| « Last Edit: Jan 20th, 2005, 11:20am by Margi » |
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E-Double
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Re: Chedden's Lithium "Pulsing"
« Reply #11 on: Jan 20th, 2005, 11:14am » |
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I'm just thankful to have things to consider for the future.....clueless here 
But always trying and strong!!
Hugs All!!
Eric
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Re: Chedden's Lithium "Pulsing"
« Reply #12 on: Jan 20th, 2005, 1:41pm » |
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Nani, and the other jerk who didn't like my posts on the other thread:
I guess this is a case of "if you don't like the message, attack the messenger (or at least the way he/she uses language)."
Excuse me, but here is exactly what I wrote:
"If your headaches are not occurring on a regular 24-hour schedule -- every 2 hours, 4 hours, etc. there are at least two possibilities: One is that your headaches are not clusters. They might be migraines. Clusters by definition occur on a regular schedule. The other is that you may be over-medicated."
Look at the words. I said there are *at least* two possibilities. Why two? Because those are the ones I know about. I don't know anything about the other thousands of possibilities.
One possibility I mention is that your headaches might be migraines. They may not be migraines -- but then, they might. That is only one of, presumably, thousands of possibilities.
Another possibility is that you are over-medicated. This does not mean that you ARE over-medicated -- only that it is a possiblity.
I'm sorry that you (and apparently some other readers) don't like what you perceive my attitude to be in sharing my solution to cluster headache pain. I'm also sorry if this solution won't work for you. However, I make no apology for sharing my experiences on this forum which is designed for that specific purpose, and I make no apology for the failure of this method to work for you.
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Margi
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Re: Chedden's Lithium "Pulsing"
« Reply #13 on: Jan 20th, 2005, 4:12pm » |
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update: our neuro has agreed that this is a viable treatment and has instructed Mike that he's ok to continue on it without being blood tested, unless he goes past two months of use. She tried to get him back on verapamil but he refused, with the reason that he feels it extends his cycles. She agreed that that is definitely a possibility with Verapamil.
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Bob P
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Re: Chedden's Lithium "Pulsing"
« Reply #14 on: Jan 20th, 2005, 4:17pm » |
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Like I said before, can't comment on the treatment since I've never used lithium. I'll give it a try next cluster though.
My vote still stands for arrogant sum-na-beetch though.
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thomas
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Re: Chedden's Lithium "Pulsing"
« Reply #15 on: Jan 20th, 2005, 4:18pm » |
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on Jan 20th, 2005, 1:41pm, chedden wrote: The other is that you may be over-medicated."
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I think this happens a hell of a lot.
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thomas
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Re: Chedden's Lithium "Pulsing"
« Reply #16 on: Jan 20th, 2005, 4:19pm » |
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on Jan 20th, 2005, 4:17pm, Bob P wrote:
My vote still stands for arrogant sum-na-beetch though. |
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Then you two should get along famously.
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Re: Chedden's Lithium "Pulsing"
« Reply #17 on: Jan 20th, 2005, 4:21pm » |
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on Jan 20th, 2005, 4:18pm, guesst wrote:
I think this happens a hell of a lot. |
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no shit, Sherlock.
rats, I said I was gonna shut up, didn't I? damnit.
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Re: Chedden's Lithium "Pulsing"
« Reply #18 on: Jan 20th, 2005, 4:24pm » |
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on Jan 20th, 2005, 4:21pm, Margi wrote:
no shit, Sherlock.
rats, I said I was gonna shut up, didn't I? damnit. |
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Yes, Margi. But nobody wants to hear that. I think de-toxing from time to time is a wonderful thing to do, but what do I know, I'm only a lowly episodic.
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Re: Chedden's Lithium "Pulsing"
« Reply #19 on: Jan 20th, 2005, 4:32pm » |
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Quote:| Then you two should get along famously. |
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I think I'm starting to like you!
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Re: Chedden's Lithium "Pulsing"
« Reply #20 on: Jan 20th, 2005, 4:37pm » |
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on Jan 20th, 2005, 4:32pm, Bob P wrote:
I think I'm starting to like you! |
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Well, it's about Goddamn time! 
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Lizzie2
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Re: Chedden's Lithium "Pulsing"
« Reply #21 on: Jan 20th, 2005, 5:25pm » |
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on Jan 20th, 2005, 4:24pm, guesst wrote:
Yes, Margi. But nobody wants to hear that. I think de-toxing from time to time is a wonderful thing to do, but what do I know, I'm only a lowly episodic. |
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I enjoyed my detox time period. It wasn't all that long ago...I guess back in October around then? I went off all meds just one morning randomly because I was angry about the steroid-induced avascular necrosis. I stayed off every med for 2 weeks and I was up to 6 clusters a day.
I know that my clusters were coming at 5pm, 7pm, 9pm, 11pm, 2am, and 4am until I went on a very high dose of verapamil in January '04. Ever since then, they've been random, but I've messed with doses and meds from time to time.
I'd kick all meds, but at this point...it isn't just clusters that are my issue. I mean, I've always had the chronic daily migraine, but I also have cardiac shiznit to worry with...GI stuff...orthopedic stuff...the list never ends! I could probably get it down to about 3-5 meds after seeing a few more doctors instead of the about 20 I'm on right now! Neuro really does kill me...the funniest part is that half the problems I have now are from side effects of medications, but they refuse to treat these issues. They say things like, "we don't treat stomach issues...go to a GI." And at this point, I have no clue what med is doing what!
So off to another doc I go. Never will I add one more pill until they start taking some away. And if that neurostimulator works for me (fingers crossed) then the pills are going down the drain!
Carrie
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Tara Ann
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Re: Chedden's Lithium "Pulsing"
« Reply #22 on: Jan 20th, 2005, 11:37pm » |
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I think periodically detoxing from meds is a good thing. Back 6+ months ago I was on the same dose of verapamil and Lithium after trying what seems like a million meds, and a couple hospitalizations and nothing was helping, including the lith and verap. Lost insurance, moved, and a few weeks ago started back on the lith and verap along with a pred taper (that I've been done with almost a week). Seems the lith and verap are working great now. Only a few *mild* hits and some shadows. NOTHING to complain about considering the mess I was a few weeks ago.
I am thinking its working (((knock on wood))) this time cause I have been medfree for so long.
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Chet
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Re: Chedden's Lithium "Pulsing"
« Reply #23 on: Jan 21st, 2005, 12:29am » |
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This is a reply to Gator's obnoxious message in which he says he's tried 300MG 30 minutes before sleep.
First, I don't believe that. But, if true, despite his assertion to the contrary, that is not evidence that lithium pulsing would not work for him. There are other things he could have tried. For example, he could have increased the dose -- say 600MB before sleep. Or he could have tried it at different times -- say 12p.m. if his most painful or most reliable attack came at 2p.m. There are other possibilities as well. It all depends on outwitting the "beast." To do that, you need to time your doses to match your headache schedule.
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Killroy 2.0
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Re: Chedden's Lithium "Pulsing"
« Reply #24 on: Jan 21st, 2005, 12:33am » |
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But you are assuming that lithium will work for everyone, and we ALL know that nothing works the same for everyone. guesst, posing as Gena.
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