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(Message started by: unsolved1 on Jan 19th, 2005, 7:01pm)
Title: Chedden's Lithium "Pulsing"
Post by unsolved1 on Jan 19th, 2005, 7:01pm
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.

Unsolved
Title: Re: Chedden's Lithium "Pulsing"
Post by nani on Jan 19th, 2005, 7:36pm
I still don't have any answers about how to make it work for me.... :'(
Maybe I don't have CH afterall... ;;D
Title: Re: Chedden's Lithium "Pulsing"
Post by unsolved1 on Jan 19th, 2005, 7:42pm
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)  ;)

Unsolved
Title: Re: Chedden's Lithium "Pulsing"
Post by nani on Jan 19th, 2005, 7:46pm
*crossing my fingers* for permanent PF time for you Michael...Lord knows, you deserve it.   :-*  Sending prayers.   :-*
Title: Re: Chedden's Lithium "Pulsing"
Post by LeLimey on Jan 19th, 2005, 7:46pm
Good luck  :) I hope it does the trick for you
Title: Re: Chedden's Lithium "Pulsing"
Post by Gator on Jan 19th, 2005, 8:06pm
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.  

PFDAN


Gator
Title: Re: Chedden's Lithium "Pulsing"
Post by Mr. Happy on Jan 20th, 2005, 12:02am

on 01/19/05 at 20:06:54, 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.

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
Title: Re: Chedden's Lithium "Pulsing"
Post by Margi on Jan 20th, 2005, 10:18am
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?  
Title: Re: Chedden's Lithium "Pulsing"
Post by nani on Jan 20th, 2005, 10:40am

Quote:
Just because Chet mentions the characteristic of clusterheads having regularily spaced attacks - he gets nailed and labelled


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?

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.
Title: Re: Chedden's Lithium "Pulsing"
Post by karma on Jan 20th, 2005, 10:47am
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.
Title: Re: Chedden's Lithium "Pulsing"
Post by Margi on Jan 20th, 2005, 11:08am
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.
Title: Re: Chedden's Lithium "Pulsing"
Post by E-Double on Jan 20th, 2005, 11:14am
I'm just thankful to have things to consider for the future.....clueless here [smiley=huh.gif]
But always trying and strong!!

Hugs All!!

Eric
Title: Re: Chedden's Lithium "Pulsing"
Post by chedden on Jan 20th, 2005, 1:41pm
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.
Title: Re: Chedden's Lithium "Pulsing"
Post by Margi on Jan 20th, 2005, 4:12pm
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.
Title: Re: Chedden's Lithium "Pulsing"
Post by Bob P on Jan 20th, 2005, 4:17pm
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.
Title: Re: Chedden's Lithium "Pulsing"
Post by guesst on Jan 20th, 2005, 4:18pm

on 01/20/05 at 13:41:00, chedden wrote:
The other is that you may be over-medicated."

I think this happens a hell of a lot.
Title: Re: Chedden's Lithium "Pulsing"
Post by guesst on Jan 20th, 2005, 4:19pm

on 01/20/05 at 16:17:16, Bob P wrote:
My vote still stands for arrogant sum-na-beetch though.

Then you two should get along famously.  ;;D
Title: Re: Chedden's Lithium "Pulsing"
Post by Margi on Jan 20th, 2005, 4:21pm

on 01/20/05 at 16:18:54, guesst wrote:
I think this happens a hell of a lot.


no shit, Sherlock.

rats, I said I was gonna shut up, didn't I?  damnit.
Title: Re: Chedden's Lithium "Pulsing"
Post by guesst on Jan 20th, 2005, 4:24pm

on 01/20/05 at 16:21:40, Margi wrote:
no shit, Sherlock.

rats, I said I was gonna shut up, didn't I?  damnit.

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.  ;)
Title: Re: Chedden's Lithium "Pulsing"
Post by Bob P on Jan 20th, 2005, 4:32pm

Quote:
Then you two should get along famously.

I think I'm starting to like you!
Title: Re: Chedden's Lithium "Pulsing"
Post by guesst on Jan 20th, 2005, 4:37pm

on 01/20/05 at 16:32:31, Bob P wrote:

I think I'm starting to like you!

Well, it's about Goddamn time!  [smiley=laugh.gif]
Title: Re: Chedden's Lithium "Pulsing"
Post by Lizzie2 on Jan 20th, 2005, 5:25pm

on 01/20/05 at 16:24:46, 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.  ;)


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 :)
Title: Re: Chedden's Lithium "Pulsing"
Post by taraann on Jan 20th, 2005, 11:37pm
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.
Title: Re: Chedden's Lithium "Pulsing"
Post by chedden on Jan 21st, 2005, 12:29am
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.
Title: Re: Chedden's Lithium "Pulsing"
Post by Gena on Jan 21st, 2005, 12:33am
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.
Title: Re: Chedden's Lithium "Pulsing"
Post by karma on Jan 21st, 2005, 7:50am
Chedden,
Lighten up
Calling a sufferer a liar is not exactly the best way to get your point accross.
Even I had a hard time getting past your opening.
Title: Re: Chedden's Lithium "Pulsing"
Post by Rock_Lobster on Jan 21st, 2005, 8:24am

on 01/21/05 at 00:33:06, Gena wrote:
guesst, posing as Gena.

Cross dresser.
Title: Re: Chedden's Lithium "Pulsing"
Post by chedden on Jan 21st, 2005, 10:35am
Gena: No, I'm not assuming that at all.

Karma: Oh. Ok. "Pompous arse" is okay, though. Actually, I didn't call him a liar. I simply stated my disbelief that a doctor would have made such a dosing recommendation.

I'm sure that if true, he would be more than willing to send me contact information for his doctor so that I can (1) verify the veracity of the statement (critical for my research) and (2) discuss with her/him the basis for such and extraordinary dosing recommendation.
Title: Re: Chedden's Lithium "Pulsing"
Post by nani on Jan 21st, 2005, 10:42am
:-X
Title: Re: Chedden's Lithium "Pulsing"
Post by chedden on Jan 21st, 2005, 11:50am
Listen. Some readers of these discussions apparently have a problem with the way I express or have expressed myself in offering information that can help with blocking cluster headaches. If so, please be my guest -- take my words and recast or rewrite them in some way that is more acceptable. I have been as straightforward and clear as I am capable and I simply have no idea what the problem is. Do that and please stop whining!
Title: Re: Chedden's Lithium "Pulsing"
Post by Margi on Jan 21st, 2005, 12:00pm
focussing on the positive again here...

two more pain free nights for Mike - that's a total of twelve consecutive nights now.  He's getting a hit when he's waking up in the morning now, so we may have to have him take his evening dose a bit later.  He's blowing that one away with Imitrex, just so he can get up and go to work.  A couple of shadows at night but oxygen is taking care of those.  TWELVE pain free nights because of pulsing lithium.  That's HUGE.  

And, Chet - not to worry - your teachings here ARE helping people, whether you realize it or not.  As of yesterday, we've introduced this theory to three neuros (Dr. Diamond and Mike's 2 neuros that he saw  yesterday) - the word is getting out there, despite the negativity displayed in this thread.  We all know that there is no cure for clusters and we also all recognize that you're not saying this IS a cure.  There will always be folks, however, who like to see their names on posts and feel the need to respond to every post possible here, even if it is to add a graphic and no text.  Such is life on the internet, right?  

Know that you ARE doing good, Chet - don't worry about people panicking about semantics.  
Title: Re: Chedden's Lithium "Pulsing"
Post by JJA on Jan 21st, 2005, 12:24pm

on 01/21/05 at 11:50:16, chedden wrote:
Listen. Some readers of these discussions apparently have a problem with the way I express or have expressed myself in offering information that can help with blocking cluster headaches. If so, please be my guest -- take my words and recast or rewrite them in some way that is more acceptable. I have been as straightforward and clear as I am capable and I simply have no idea what the problem is. Do that and please stop whining!


How about "I'm sorry that the way I express myself has caused problems." People eat that stuff up.

Seriously though, telling what has worked for you is much appreciated. You just come off a little strong. I hope you're not discouraged from participating here. I think your technique may help more people.

Jesse
Title: Re: Chedden's Lithium "Pulsing"
Post by don on Jan 21st, 2005, 7:55pm

Quote:
:-X


NEWSFLASH. Just in from CNN. The devil himself has been seen purchasing snowshoes at LL Bean.
Title: Re: Chedden's Lithium "Pulsing"
Post by Gator on Jan 21st, 2005, 10:54pm

on 01/20/05 at 10:18:50, Margi wrote:
As Unsolved says here about Dr. Diamond's comments "yes, this can be an effective treatment for some  [you mean not all? hmmmm] "  - why can't we just leave it at that and rejoice that TWO clusterheads have found some pain freedom?


And why can't someone comment that they are different without getting the grand slam.  A stranger walks in the door and everyone that is not like him has migraines or some other disease?  He insults and demeans your friends and you ignore it.  When someone gets a little out of sorts with him, you are his #1 defender.  Thanks. ;)

I read that thread.  Everyone that initially responded commented that they were happy it was working for him.  When they dared say anything contrary to the pompous ba$tard, HE not they went on the offensive.  It was only after HE drew first blood that the gloves came off.  If he hadn't come off like some king $hit know-it-all, I believe more people would have warmed up to him and and what he had to say.

I am pleased as hell for him and Mike and anyone else that tries it and gets relief out of it.  Every clusterhead and every supporter deserves it.  My main commentary was about his attitude, not his method.  I guess differing opinions are not allowed in the mighty chedden's threads.


Quote:
Posted by: chedden Posted on: 01/20/05 at 23:29:11
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.  


And here's one for you, butthead:  My neuro always started new meds with doses just before bedtime so if there were any ill effect, his patients wouldn't have to suffer through the ch and the side effects while trying to work.  If there were no ill effects to that dose, he would then schedule extra doses if and as necessary.  Makes sense to me.  It might make sense to you if you'd pull your head out so you could breath some fresh air.  I couldn't care less if you believe me or not.  Believe it or not I don't live for your acceptance or praise.  I've lived 42 years without it.  I don't think I'll wither away without it now.


Quote:
Posted by: chedden Posted on: Today at 09:35:03
Gena: No, I'm not assuming that at all.  [Noooo.  You're just saying that anyone that disagrees is wrong.  What's the difference?]

Karma: Oh. Ok. "Pompous arse" is okay, though. [Truth hurts] Actually, I didn't call him a liar. I simply stated my disbelief [aka called me a liar] that a doctor would have made such a dosing recommendation.

I'm sure that if true, he would be more than willing to send me contact information for his doctor so that I can (1) verify the veracity of the statement (critical for my research) and (2) discuss with her/him the basis for such and extraordinary dosing recommendation.  


You have a hard time believing that the #1 go to man in the state for cluster headaches would know something about dosing meds for CH.  Whatever.  I told you ealier in this reply how he prescribed new meds.  I hope you can get past your own ego and find it.  Very few people can get a rise out of me like you have.  You have insulted my friends and questioned my integrity.  Fuck your research and while you're at it, fuck you as*hole.


Quote:
Posted by: chedden Posted on: Today at 10:50:16
Listen. Some readers of these discussions apparently have a problem with the way I express or have expressed myself in offering information that can help with blocking cluster headaches. If so, please be my guest -- take my words and recast or rewrite them in some way that is more acceptable. I have been as straightforward and clear as I am capable and I simply have no idea what the problem is. Do that and please stop whining!


Here it is again.  "Screw you all.  I have no intention of changing the way I speak down to you.  Stop whining and believe.  Chet has spoken, damnit."  

You know-it-all, better-than-thou types really get me.  So much smarter than everyone else, but you can't even make it through a thread where you are trying to give people good news without stepping stomping on their toes.  Get a clue.


Gator
Title: Re: Chedden's Lithium "Pulsing"
Post by Kevin_M on Jan 22nd, 2005, 12:48am

on 01/20/05 at 00:02:48, Mr. Happy wrote:
Glad I don't have to do light metals,
RJ


I followed the original thread and continued here in agreement with many points made by Ched.  Using a different prevent, I've found success this time while "pulsing" before the hit times as I increased to an effective level; again in agreement.

I'm not too familiar with the relationship of lithium and circadian timing, but lith has been used as the active ingredient of many anti-depressant medications, perhaps for that reason of stabilizing.  I am challenged when it comes to medical knowledge.  
 Some comments toward others by Ched I felt were unnecessary, there is a long history with lack of preventive success for many, that deserves understanding, and doubts are to be expected.  It is not new that things can get a bit ugly when someone's self practiced methods which work, are being scrutinized when the ramification of possible somewhat universal results are perceived by the discussion.  Better effectiveness and viable help for some, seem to be very possible though.  That in itself makes Ched's post most contributory.  
 Aside from that, reiterating; displaying what seemed perhaps a bit of a shortcoming of experience at attentive handling when a quick embracing by all wasn't realized within the expended time of divulging, appeared a bit unempathic.  I understand having confidence in what you are saying, but the attempts at poignant intimidating wit for a negative expression was not impressive.  I would hate for it to be included in the impression of what you had to say.  
 Thank you Ched for the many points I have found agreement with, there has been adequate acknowledgement in a positive manner for your words, and acceptance for what you had to say.  



RJ, you're a few protons short but take that Farah Fawcett poster and hang it somewhere else instead of covering up that periodic table.   ;;D

*sp
Title: Re: Chedden's Lithium "Pulsing"
Post by JoeS on Jan 22nd, 2005, 8:23am
I had to read that last post twice to distill your point, but in the end, "well put."
Title: Re: Chedden's Lithium "Pulsing"
Post by JJA on Jan 22nd, 2005, 8:47am

on 01/22/05 at 00:48:06, Kevin_M wrote:
Using a different prevent, I've found success this time while "pulsing" before the hit times

This is what I was thinking. It is probably not unique to lithium. If you have a predictable headache schedule, it makes sense to have the highest serum levels of any preventative drug when those hits are expected. As far as knocking out a "key" headache and rest follow? I wouldn't have thought so, but maybe...

Jesse
Title: Re: Chedden's Lithium "Pulsing"
Post by sandie99 on Jan 22nd, 2005, 11:48am
And I can't get my doc to subscribe me lithium... Lucky you... ;)
Title: Re: Chedden's Lithium "Pulsing"
Post by Margi on Jan 24th, 2005, 9:57am

on 01/21/05 at 22:54:25, Gator wrote:
And why can't someone comment that they are different without getting the grand slam.  A stranger walks in the door and everyone that is not like him has migraines or some other disease?  He insults and demeans your friends and you ignore it.  When someone gets a little out of sorts with him, you are his #1 defender.  Thanks. ;)
Gator, first of all, I do apologize that your feelings are hurt by what I said - I've always admired and respected your contributions here and I'm very sorry that my words offended you.  Certainly not my intention. I honestly don't buy into the mob mentality that can happen when one person says something the wrong way, though, and I don't plan on doing so anytime soon.   :(  

I read that thread.  Everyone that initially responded commented that they were happy it was working for him.  When they dared say anything contrary to the pompous ba$tard, HE not they went on the offensive.  It was only after HE drew first blood that the gloves came off.  If he hadn't come off like some king $hit know-it-all, I believe more people would have warmed up to him and and what he had to say.

I agree that Chet took the offensive, Gator - just like everyone else has a tendency to do at times - we are people in pain here, such is life.  I'm not responsible for what anyone else says.  I guess sometimes we all just kinda hafta sift through the silt to find the gold, right?  

I am pleased as hell for him and Mike and anyone else that tries it and gets relief out of it.  Every clusterhead and every supporter deserves it.  My main commentary was about his attitude, not his method.  I guess differing opinions are not allowed in the mighty chedden's threads.  

C'mon, Gator - you know I don't know Chet from a hill of beans, but maybe, just maybe, his idea might help more than just two clusterheads.  For what it's worth?  Mike's having breakthroughs again now but the lithium is definitely keeping everything down to a dull roar.  If anyone, and I mean anyone, came to this board and suggested that sticking matchsticks under the toenails relieved cluster pain and experiments proved that out - yeah, I'd stick up for them too.  Warts and all.  


Again, I apologize for offending anyone on this topic.  Sorry, Gator, I wasn't around on the weekend to see your post.  
Title: Re: Chedden's Lithium "Pulsing"
Post by Gator on Jan 24th, 2005, 12:14pm
It's all good Margi.  I've been going through yet another rough patch, so I was probably over sensitive.  I know you are not a follow the crowd type.  Neither am I, though I do admit to having my share of fun with snake oil salesmen.  I have at times been the first and sometimes only person to stand up and defend a new member.  

Chedden's method seems to make a lot of sense.  I think he needs to present his method to the big dogs so they can study it.  Like I said, I am happy it works for some people.  You and I both know that nothing works for everyone, though.  I wish something - anything would work on me.  Docs say my liver metabolizes meds so quickly that not only do I not get side effects, I don't get the medicinal effects of most meds.  c'est la vie  I am definitely not happy that Mike is starting to have any breakthroughs.  I'd rather be wrong, than for someone to get hit.

You are right about trying almost anything to ease the pain.  A lot of people tried a lot of crazy things before coming here and finding some real answers.  That is what this place is good for - it gives information and support, debunks myths, separates bogus cures from effective ones and it attempts (however brashly and sometimes wrongly) to protect it's members from yet another bogus treatment or snakeoil vendor with a testamonial and a cure.  Overall, I'd say that's a good thing.

I'm glad you and Mike are getting some much deserved breaks.  I hope it continues to improve.  

Onward and upward.


Gator
Title: Re: Chedden's Lithium "Pulsing"
Post by Margi on Jan 24th, 2005, 12:45pm
Thanks, Gator.  Aw, dammit - ya wanna just hug it out?  :)

Sorry to hear that you've got a fast liver.  Normally, that would be a good thing, but not in the world of trying to absorb meds I guess.  

I so desparately wish we could find that universal preventative/abortive/CURE.  Until then though - leave no stones unturned, right?

Again, thanks Mike.  (I know you're a good guy with a name like that!  :))
Title: Re: Chedden's Lithium "Pulsing"
Post by chedden on Jan 24th, 2005, 2:21pm
Question for you, Gator:

If I had yelled obscenities at you would that have made you less pompous?
Title: Re: Chedden's Lithium "Pulsing"
Post by vig on Jan 24th, 2005, 2:28pm
BZZZZT
[smiley=referee.gif]
(yellow flag thrown)
5 yard penalty for poor response....
;;D
Title: Re: Chedden's Lithium "Pulsing"
Post by Gator on Jan 24th, 2005, 2:38pm

on 01/24/05 at 14:21:08, chedden wrote:
Question for you, Gator:

If I had yelled obscenities at you would that have made you less pompous?


Chedden,

I was apologizing to Margi, not you.  Anything else you and I have to say to each other can be taken to IM.  Further public bantering back and forth will only serve to dilute your message, which despite it's delivery is one that needs to be heard.


Gator
Title: Re: Chedden's Lithium "Pulsing"
Post by E-Double on Jan 24th, 2005, 3:23pm
[smiley=thumbsup.gif]
Title: Re: Chedden's Lithium "Pulsing"
Post by chedden on Jan 24th, 2005, 3:34pm
Then you prefer the obscenity approach to the polite, courteous, and respectful one?
Title: Re: Chedden's Lithium "Pulsing"
Post by nani on Jan 24th, 2005, 3:40pm
:-X            Know what that means?  It means...I have nothing positive to say, so I'm going to hold my tongue and not say anything. You ought to try that sometime.
Title: Re: Chedden's Lithium "Pulsing"
Post by Margi on Jan 24th, 2005, 3:45pm
ANYWAY... ::)

Chet, not sure if you saw my post but Mike's been getting some breakthroughs over the weekend.  Of course, we do know that weekends are rougher because he's relaxed and that's always been a trigger for him.

The double edge of this sword is that he's aborting the attacks with imitrex spray - so I'm not sure if he's causing more attacks by using the imitrex or if the lithium dose needs to be changed.  Hits seem to be coming about every 4 hours and still, nothing anywhere near enough to a 10 on the pain scale.  Still sleeping fairly well through the nights, one woke him up at 4 a.m. on Sunday - that's the only time in the last few days.

Your thoughts?  Just wondering if you've experienced stuff like this when you've done this pulsing.
Title: Re: Chedden's Lithium "Pulsing"
Post by chedden on Jan 24th, 2005, 3:46pm
It's unfortunate that some readers of Gator's blather may be discouraged from trying something that may actually work for them. Those who throw stones should not live in glass houses.
Title: Re: Chedden's Lithium "Pulsing"
Post by Margi on Jan 24th, 2005, 3:47pm
I hate that this thread keeps taking this turn.  Chet, Gator's a really nice guy.  And, so are you.

So, could you read my post above yours and tell me what you think?

Thanks very much, Chet.
Title: Re: Chedden's Lithium "Pulsing"
Post by chedden on Jan 24th, 2005, 4:04pm
Margi, I don't know the answer to the question of whether Imitrex is affecting Mike's headaches, as I've never used it. I would suspect anything that has an effect on the clusters.

In the past (not at this time), I have had various breakthroughs and worse. Sometimes it was because I was using too much lithium (up to 900MB). In that case, I tried different things -- like stopping all treatment or reducing the dose, or changing the schedule to treat events occurring at odd or even random times. I've used as little as 150MG, but that only worked for a couple of days. I arrived at the approach I use, and described, after several years of trial and error. As I said many posts back on the original thread, when in the past I have lost control, I simply stopped treatment and let the headache re-establish a regular daily schedule. Then began again by knocking out the "queen."

All I can suggest is to experiment with different combinations of timing and dosing (including withholding all medication) and try knocking them down one at a time. Eventually, you may get the upper hand. Once you do that, don't deviate from your sleep-wake routine.
Title: Re: Chedden's Lithium "Pulsing"
Post by Margi on Jan 24th, 2005, 4:16pm
thanks, Chet - good advice.

And, we're still being good kids about adhering to bedtime and wakeup time.  We're creatures of habit anyway and rumour has it that I turn into a pumpkin at midnight anyway, so it's best not to mess with Mother Nature.  ;)

I'll pass this on to Mike.

How are YOU doing?  Lithium still working for you this cluster?
Title: Re: Chedden's Lithium "Pulsing"
Post by ccbiggsoo7 on Jan 24th, 2005, 10:59pm
!!!!!!!!!!!!!!!!!KIDS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!


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