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New Message Board Archives >> Medications, Treatments, Therapies 2005 >> Lithium as Prophylactic
(Message started by: chedden on Jan 9th, 2005, 1:06pm)

Title: Lithium as Prophylactic
Post by chedden on Jan 9th, 2005, 1:06pm
I have used lithium to control clusters for several years. But lithium dosing should not be spread out over the day, as usually recommended, but should correspond precisely to the circadian schedule of the clusters. The name I would suggest for this technique is "lithium pulsing."

My headache series occur approximately every 14 months and last up to 3 months. Using lithium @300Mg/day during those months, I am able to remain mostly headache free. I use 300Mg tablets only -- not time release capsules.

This is the process I follow. I know from experience that a "key" (and usually very severe) cluster will occur 1-2 hours after I go to sleep every night. It is important to know the exact time when this happens and to always try to go to sleep at the same time each day. I call this cluster "key" because knocking it out will usually prevent additional events for the next 24 hours. Not preventing it, however, will guarantee that others will follow at between 2 and 4 hour intervals. The more often my sleep is interrupted at night the more frequent and severe the condition becomes, so that is why I call the first event after going to sleep at night the "key."

To knock this one out (and, consequently, any that follow during the night and following day) I take the lithium approximately 2 hours before the known, predictable occurrence of the first cluster of the night -- that's usually about half an hour to an hour before bedtime. That timing ensures that the drug will reach maximum blood levels at precisely the scheduled onset of the cluster. When I do that, I sleep through the night and usually have no other events during the following 24 hours. The more sleep I get, the weaker the syndrome becomes, so the "key" is to hit that first event hard.

You need to be flexible, however, because your brain may try to play with you. If clusters begin coming at different times, change your dosing schedule to correspond to the new pattern -- always taking the lithium 1-2 hours before a predictable event. You may find it useful to increase the dose, if it is not completely effective. But taking too high a dose can have a rebound effect and may cause the cluster to change sides or even get worse. Take the least amount that is effective.

Your dominant or "key" event may come at a different time than mine -- for example every afternoon at 2:00. In that case, take the lithium at 12 or 12:30. By matching your dosing schedule to the brain's regulatory "clock" is like a "surgical strike" instead of "saturation bombing." It is more effective because it prevents the body from building up resistance to the treatment. Doing this will disrupt the headache's rhythm and will show "it" that you are in control. If necessary, experiment, always keeping in mind the most essential principle -- that the drug should be ingested 1-2 hours before you expect the headache.

Title: Re: Lithium as Prophylactic
Post by unsolved1 on Jan 9th, 2005, 2:22pm
Glad to hear that you are 'in control' of your headaches.

PF Wishes,
Unsolved

Title: Re: Lithium as Prophylactic
Post by chedden on Jan 9th, 2005, 3:25pm
My sympathies, Unsolved. I may be wrong, but I believe the Imitrex is more of a treatment for the pain, rather than a preventative.

Anyway, the method I described really does work for me. I used to use a lot of phenylpropanolamine (Contac time-release capsules), but then that compound was outlawed and Contac now contains an ordinary decongestant. The lithium carbonate has no negative effects on my life or activities. The phenylpropanolamine used to make me pretty spacey for weeks at a time.

I believe the reason lithium carbonate works is that the clusters are triggered by the biologic clock and the lithium disrupts the clock so that the headache simply does not happen. This breaks the back of the cycle. The lithium does nothing for pain. It simply prevents the headache from occurring. Eventually, the entire series ends and the lithium is no longer needed.

The way I determine when to stop taking the lithium is that after a few weeks (or months), I start skipping the drug. I may get away with it for a day, but on the second day the headache returns. Then I know I can only get away with taking it every other day. Sooner or later, the headache will not occur at all, or become so mild as to be of little importance. Then it will simply stop.

Title: Re: Lithium as Prophylactic
Post by nani on Jan 9th, 2005, 6:20pm
Hi chedden. It sounds like you are "in control". Not all of us are fortunate(?) enough to have predictable headaches. I use lithium as a prevent, but I'm chronic and my hits have a mind and schedule of their own. I also almost never get hit at night.

Title: Re: Lithium as Prophylactic
Post by chedden on Jan 9th, 2005, 6:38pm
My only suggestion would be to keep a record of the exact times of the hits and try to determine the most regular occurence(s). There are only a limited number of possible times in one's nonsleep hours, especially if your hits last 30 minutes or so. There must be some that repeat at regular times. Then back off 1-2 hours and see if taking the tab will at least block the one you have isolated. Possibly if you can reduce the number of hits in any 24-hour period, one at a time, the pattern (schedule) will become more regular -- or at least more discernible.

Title: Re: Lithium as Prophylactic
Post by chedden on Jan 9th, 2005, 6:57pm
One other suggestion. In my experience, when the frequency and timing of the hits seems irregular and not predictable, it means I'm taking too much lithium. If you are not targeting specific events (i.e., "pulsing" the drug), but using it in a "blanket" fashion as it is usually prescribed (i.e. "take one tablet 3 times a day" ) you are not interfering with the circadian clock, but simply providing a constant background level of the chemical in your body. Of course, I'm not a scientist, but I've had 40+ years of experience with this scourge, and these are my impressions based on that experience.

Title: Re: Lithium as Prophylactic
Post by unsolved1 on Jan 9th, 2005, 9:55pm
I've used Lithium many times. 900mg/day .... Still had headaches during the day and at night. I'm on it again now (with a different combo of drugs) .... and I don't believe the Lithium helps ... no matter how I take it. Don't get me wrong, I'm glad it helps you and taking it at different times may help others ... but it hasn't helped me.

BTW ... I never mentioned Imitrex. Not sure what you meant  [smiley=huh.gif] . I honestly believe I've used more Trex than ANYONE . (Literally thousands of shots)

Unsolved

Title: Re: Lithium as Prophylactic
Post by chedden on Jan 9th, 2005, 11:30pm
900 mg/day is too much. You are not pulsing the drug. My recommendation would be to stop everything else and try one 300 tab two hours before your dominant (key) episode.  Obviously the "trex" isn't working for you.

Title: Re: Lithium as Prophylactic
Post by unsolved1 on Jan 10th, 2005, 9:46am
You're sooo wrong. Trex helps me everytime. I wouldn't be here today without it.

BTW...I've taken 300mg 2 hrs before an attack .... 3 times a day ....   Headaches still come. Your way won't work for me.

Unsolved

Title: Re: Lithium as Prophylactic
Post by Margi on Jan 10th, 2005, 11:45am
That's a really interesting theory, Chedden - addressing the circadian daily clock like that.  I have some questions.

1.  Are you otherwise totally med free when in cycle (except for the lithium)?  

2.  Do you use oxygen as an abortive?  Or do you think doing so would interfere in any way?

3.  Do you need to still go for regular blood screening at that low a lith dose?

4.  How long does it take for this "pre-emptive strike" plan to start working for you?  In other words, how many days of taking it before bed before you notice that it's working?

Please do keep talking about this method.  I'm wondering if the reason you're finding success with it is because (presumably) you are otherwise med free?  

Thanks very much for telling us about this idea.

Title: Re: Lithium as Prophylactic
Post by chedden on Jan 10th, 2005, 1:58pm
To Unsolved1: What am I wrong about? You still have the headaches, so the Trex isn't stopping them. It may be giving you some relief by treating the symptoms, but at what cost?

To Margi: This isn't really a theory. The connection with the hypothalmus/biological clock/pain axis is known through research, some of which you can find on this website.

1- Yes, med-free except for the lithium.
2- No. I don't know about O2. I have used sublingual ergotamine only after a headache has begun and it only lowered the peak pain level. I don't use that now because I prefer to stop the headache before it happens.
3- Never had any blood screening.
4- It works the first time.

To anyone else:

Maybe I can offer some additional clarification. 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. Most meds have a rebound effect and can actually make you worse, if you don't give them a rest. That's the idea behind "pulsing" (a term that is also not my invention). As I mentioned before, taking lithium constantly (on a "saturation" basis, rather than a "targeted" basis) does little or nothing to directly affect a specific headache event.

If you are not aware of your headache schedule, or it is erratic, you need to stop any preventive treatment for a few days to let your body re-establish its normal headache schedule. Yes, this means letting them happen. You need to write down the start and end times. Watching the clock during the event may help prevent madness, because you know that the pain will eventually end. Once you know when to expect an event, you can then use the lithium to prevent it.

What prompted me to write to this list is that I have just begun a cycle. My last one ended at the end of October, 2003.

Three nights ago I was awakened at 5:30 a.m. with a mild cluster on my left side. At the same time I had a memory of having felt one earlier in the night that did not wake me up. I knew from that that I was starting a cycle.

Two nights ago I was awakened at 12:30 a.m. with a major event -- probably a 6.5. Then another came at 3:30 a.m. It was not as severe, probably a 3. I knew that if I did nothing, I would again awaken at 5:30 or thereabouts with another headache, so I took one lithium tab. to prevent the predicted 5:30 event. The strategy worked.

Last night I took the lithium at 10:15 p.m. and went to sleep about 10:30. I took the med at 10:15 anticipating an event at around 12:30 a.m. I have had no further headaches. It is now 12:00 noon. All that was necessary was to knock out the first one in the series.

Tonight I will again take the medication and retire at the same time. I do not anticipate any further problems, but will happly report on my success or failure.

Title: Re: Lithium as Prophylactic
Post by Margi on Jan 10th, 2005, 2:11pm
thanks for the response, Chedden.

so, to go further, do you have any breakthroughs at all while doing the lithium?  Or do all attacks stop with your daily (is that right?  just 300 mgs a day?) dosing?

I know you clusterheads can tell when you are still in cycle - that you're 'not out of the woods yet'...so do you just keep taking the lithium until that feeling goes away?

again, thanks very much - this is really interesting. :)

Title: Re: Lithium as Prophylactic
Post by nani on Jan 10th, 2005, 2:31pm

Quote:
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. Most meds have a rebound effect and can actually make you worse, if you don't give them a rest.


chedden...have you been reading the boards? We know the difference between a CH and a rebound. Rebounds are caused by pain meds and sometimes triptans. None of the meds I am on cause rebounds. And not all clusterheads suffer from the literal definition of them. Just as not all of them respond to the same treatment. Thanks for sharing what works for you, though...it may help someone else.  :)

Title: Re: Lithium as Prophylactic
Post by chedden on Jan 10th, 2005, 2:39pm
Margi,

The process is stable as long as I stick to my sleep/med schedule. Drastic changes in my routines may change the schedule. If that happens -- if I experience an unscheduled attack -- I adjust my treatment schedule to correspond, so that the maximum plasma saturation level corresponds with the expected onset.

I've gone as low as 150MG, but that failed to work after several days. I've found 300 to be optimal for me. If I am hit more than one time in a day -- e.g. 6:00 p.m. and 1:30 a.m., I will take one at 4:00 p.m. and, just before bedtime or as late as 11:00 p.m. But I would drop the 4:00 as soon as I felt it is safe to do so.

On when to stop, yes, as soon as "that feeling" goes away (2-3 months), I would try stopping. However, if it doesn't work to stop, I go back on the treatment the next day. I may then try just every other day, every third, etc., until they just disappear.

Title: Re: Lithium as Prophylactic
Post by Margi on Jan 10th, 2005, 2:48pm
Again, thanks Chedden. This just makes so much sense. I agree with you that true cluster fits into a very clearly defined box and that a lot of the preventative and abortive meds do make everything worse in the long run. I worry that doctors are too quick to diagnose cluster and prescribe meds that mask or alter symptoms of other headache variants. I think overuse of meds of any kind are going to launch a whole new problem set that really blurs the lines for effective treatment.
Thanks for your insight and professionalism here. It's very refreshing.

and, p.s., you're right on the money about working hard to get a good sleep.  It's the best defense of all yet, sadly, so elusive for most clusterheads.



Title: Re: Lithium as Prophylactic
Post by chedden on Jan 10th, 2005, 2:49pm
Nani, by "rebound" I wasn't referring to a type of headache,  as distinct from a cluster headache, but to an effect of the extended use of any medication that increases, rather than prevents, cluster headaches.

Title: Re: Lithium as Prophylactic
Post by Margi on Jan 10th, 2005, 2:52pm
exactly right about rebounds...there's a lot of research out there right now that points to imitrex (or any of the triptans) causing more attacks, and that preventatives lengthen cycles.

Title: Re: Lithium as Prophylactic
Post by don on Jan 10th, 2005, 3:45pm
Everything you state makes sense EXCEPT that you say the imitrex is not working for Unsolved.


Quote:
You still have the headaches, so the Trex isn't stopping them.


The injection is to stop the attack and only that attack. If it stops the attack then it is working.

Title: Re: Lithium as Prophylactic
Post by Bob P on Jan 10th, 2005, 4:33pm
Chedden,
I can't comment on the treatment but I can say that you are making the mistake of thinking all clusters must be like yours.  Clusters, by definition, do not necessarily occure on a regular schedule.  They can occur 8 times a day down to once every couple of days.

Title: Re: Lithium as Prophylactic
Post by unsolved1 on Jan 10th, 2005, 4:52pm
Thanks Don, you said exactly what I was going to say.

Chedden ~ If this way of taking your meds help you, I'm happy for you. I really am glad that you found a way to control your headaches. May your PF time last a long time.

Unsolved

Title: Re: Lithium as Prophylactic
Post by chedden on Jan 10th, 2005, 5:01pm
Don, I don't know anything about Unsolved's case. I only know that she says she uses Imitrex and that she continues to have headaches. If that means it is working, fine.

Bob, I've never claimed all headaches are like mine. Only that part of our understanding of cluster headaches is that they occur at regular intervals as controled by the body's internal clock. You apparently agree with me because you say they can occur up to 8 times a day (which would be approximately every 3 hours) down to once every couple of days (every 48 hours). I've had them every 2 hours, which would be 12 times a day, wouldn't it?

To everyone else: I have no plans to get involved in arguments about any of this. If you want to try the method, I offer it for your use. If not, I don't care. I have no axe to grind and I have no intention of trying to prove any of it or to convince anyone that what I have described works for me and may work for others.

Title: Re: Lithium as Prophylactic
Post by E-Double on Jan 10th, 2005, 5:35pm
Glad you found a treatment that works for you and thanks for sharing.

Some of us have cycles that demonstrate no pattern whatsoever....... Literally all over the place.

Mine used to be like clockwork......Would know exactly when.

This cycle I was all over the place with no rhyme or reason......I took tons of data accounting for every possible variable and created a scatterplot to attempt to find patterns.......Nothing.

Go figure.

Best to all out there!

Eric

Title: Re: Lithium as Prophylactic
Post by unsolved1 on Jan 10th, 2005, 5:42pm
LOL ... she called me a she ! [smiley=crackup.gif]

I just love it when someone who's never posted here before comes to give us advice.

THanks anyways ... I think you are just trying to help.

UNsolved

Title: Re: Lithium as Prophylactic
Post by chedden on Jan 10th, 2005, 5:51pm
E-double:  What did you do that took your headaches off the schedule? As I mentioned before, that can happen if you are using various drugs, including lithium. There are probably other ways it can be derailed.

Did you try stopping your treatment of choice and then see what happened? I simply can't imagine not having any idea when one might hit. At least, you must be able to make a guess, based on your history. Maybe one always happens after lunch or that daily briefing, or after a shower. Maybe have a few drinks to trigger one. There are only so many possibilites in 24 hours.

If that doesn't work, try taking one dose of lithium at any time point (assuming you are not on any other meds). That should prevent any clusters for a time. Then when you are hit with the first one after that, make a note of the time. Next day, do the same. The idea is to try to re-establish a regular and predictable schedule.

Title: Re: Lithium as Prophylactic
Post by chedden on Jan 10th, 2005, 5:56pm
Unsolved1: So you're a "he." Well, I guess that explains the ego.

What makes you think only someone who has been contributing to your conversation in the past has anything of value to say?

Title: Re: Lithium as Prophylactic
Post by unsolved1 on Jan 10th, 2005, 6:01pm
I've been down the Lithium road enough to know that your method won't work for us all.

For you to think that clusters are always predictable is being close minded. I'm like Eric ... never know when a hit is coming.

Histamine has 'derailed' my clusters for now. The Lithium had nothing to do with it (although it does help others)

Since you're a clusterhead (I assume) and you have a computer (I assume) ... why haven't you been around ??

No hard feelings ... I'm glad your method seems to be helping you. Maybe it will help others.

Unsolved

Title: Re: Lithium as Prophylactic
Post by BlueMeanie on Jan 10th, 2005, 6:10pm

Quote:
Clusters by definition occur on a regular schedule.


Are you sure about that ? It's my guess, but episodics DO seem to have somewhat of a schedule, but Chronics are a whole different ballgame. Thanks for sharing. Your system just may help some people and that's what counts.

Title: Re: Lithium as Prophylactic
Post by Bob P on Jan 10th, 2005, 6:20pm

Quote:
Bob, I've never claimed all headaches are like mine. Only that part of our understanding of cluster headaches is that they occur at regular intervals as controled by the body's internal clock. You apparently agree with me because you say they can occur up to 8 times a day (which would be approximately every 3 hours) down to once every couple of days (every 48 hours). I've had them every 2 hours, which would be 12 times a day, wouldn't it?

You're obviously a person who cannot be wrong. It may be part of your understanding but I have never seen anything on clusters that says they happen at evenly spaced intervals throughout the day. Some people get 4 attacks at night and none during the day. Some get 2 attacks back to back.
Lithium, much like verap, doesn't work as a rubber for everyone.

Title: Re: Lithium as Prophylactic
Post by E-Double on Jan 10th, 2005, 6:56pm

on 01/10/05 at 17:51:40, chedden wrote:
E-double: What did you do that took your headaches off the schedule? As I mentioned before, that can happen if you are using various drugs, including lithium. There are probably other ways it can be derailed.

Did you try stopping your treatment of choice and then see what happened? I simply can't imagine not having any idea when one might hit. At least, you must be able to make a guess, based on your history. Maybe one always happens after lunch or that daily briefing, or after a shower. Maybe have a few drinks to trigger one. There are only so many possibilites in 24 hours.

If that doesn't work, try taking one dose of lithium at any time point (assuming you are not on any other meds). That should prevent any clusters for a time. Then when you are hit with the first one after that, make a note of the time. Next day, do the same. The idea is to try to re-establish a regular and predictable schedule.


This is my very first cycle out of 18 that I have taken any type of medication for CH.

That was the only variable.

By profession I collect and analyze data and can and can account for  practically anything.

The CH this cycle was literally all over the place.
No specific times of day, freqency, duration......Totally random.

Very frustrating for any scientist!

I appreciate the question and the attempt sincerely.
That's just my body!

Best,

E x 2

Title: Re: Lithium as Prophylactic
Post by Margi on Jan 11th, 2005, 10:22am
uh, excuse me, everyone - before you tie this guy to the stake and light a fire under him  ::)

check this out:

http://www.clusterheadaches.ca/cgi-bin/yabb/YaBB.pl?board=Pain;action=display;num=1105456439;start=0#0

this treatment worked for my Mike last night, everyone.  First pain free night in weeks.  

and, he even posted about it!!  
http://www.clusterheadaches.ca/cgi-bin/yabb/YaBB.pl?board=General;action=display;num=1105456257

don't throw the baby out with the bathwater here, ok?  300 measly milligrams of lithium gave my husband his first pain free night in a month.  

THANK YOU CHET!!
 http://www.deephousepage.com/smilies/banana.gif

Title: Re: Lithium as Prophylactic
Post by nani on Jan 11th, 2005, 11:11am

Quote:
before you tie this guy to the stake and light a fire under him  


I don't think anyone did that. I think we pointed out that not everyone suffers the same way or responds to meds the same way. We all thanked him for the info, too...so glad Mike got some relief!

Title: Re: Lithium as Prophylactic
Post by vig on Jan 11th, 2005, 11:17am
glad mike got some relief, Margi.
I hope it continues.

Title: Re: Lithium as Prophylactic
Post by chedden on Jan 11th, 2005, 11:55am
Excuse me, Unsolved1, but you and all the other nay-sayers are the ones who are close-minded. I think your username says it all.

Suffer on, folks. Make them drug companies rich.

Title: Re: Lithium as Prophylactic
Post by nani on Jan 11th, 2005, 12:22pm

Quote:
Make them drug companies rich.


Where do you get your lithium?


Quote:
Suffer on, folks.


We've all been suffering. Just because we didn't all jump on your bandwagon, doesn't mean we should have suffering wished upon us.  :(

Again, I will thank you for sharing your info. Someone got some relief and that's always a good thing.

Title: Re: Lithium as Prophylactic
Post by chedden on Jan 11th, 2005, 12:29pm
I would never wish suffering on anyone. It's your choice.

Title: Re: Lithium as Prophylactic
Post by Margi on Jan 11th, 2005, 12:30pm

on 01/11/05 at 12:22:41, nani wrote:
Where do you get your lithium?


Lithium is one of the cheapest of the cluster meds out there.  Even without a medical plan.  I think the bottle of 100 tabs we got for Mike cost $12.  And that's Canadian.  At the time of purchase, it would have been what....maybe a buck, American? (OK, maybe eight bucks, American.)  Anyone priced out Verapamil lately?  Imitrex?  $100 Cdn for 6 imitrex inhalers.  $180 for a 60 day supply of verap.   It's sure not the lithium that the drug companies are getting rich from.  

So sad to see the argumentative reception Chet is getting here.  Especially since he brought a gift and everything.  Typical of most new treatments that arrive here though, I guess.  

I'll say it again.  THANK YOU, CHET!  






Title: Re: Lithium as Prophylactic
Post by Bob P on Jan 11th, 2005, 12:35pm

Quote:
Suffer on, folks. Make them drug companies rich.

Pompous bastard!

Title: Re: Lithium as Prophylactic
Post by nani on Jan 11th, 2005, 12:50pm

Quote:
So sad to see the argumentative reception Chet is getting here.  Especially since he brought a gift and everything.  Typical of most new treatments that arrive here though, I guess.  

I'll say it again.  THANK YOU, CHET!  


You know I don't see how his arguing with us makes us argumentative. Each of thanked him, in almost every single response. And if you didn't notice...each of us has either been on or is on lithium. It just so happens it makes me feel weird, so I can't use it for my daytime hits (I don't get hit at night). Sheeesh...

Title: Re: Lithium as Prophylactic
Post by unsolved1 on Jan 11th, 2005, 1:15pm

on 01/11/05 at 12:30:30, Margi wrote:
Especially since he brought a gift and everything.


A Gift ???  [smiley=huh.gif]  I think not. I do believe that taking your meds in different ways/dosages may be helpful and his method may be helpful to others
BUT...
He did not bring us a cure all.


PS> Lithium takes awhile to get into your system ... right ??? So,   how could one dose prevent a headache 2 hours later ??

Title: Re: Lithium as Prophylactic
Post by chedden on Jan 11th, 2005, 1:40pm
To Nani:
I have never advocated being "on" lithium (or any other drug). It is always frustrating when people twist or misrepresent what one says just for the sake of defending their own viewpoint.

To Unsolved:
Precisely. It takes 2 hours for the lithium to reach maximum saturation. You time that single dose so that it reaches maximum saturation to coincide with the onset of the next cluster headache ("hit," if you prefer). I explained all that in my original and subsequent posts.

Title: Re: Lithium as Prophylactic
Post by Margi on Jan 11th, 2005, 1:45pm

on 01/11/05 at 13:15:43, unsolved1 wrote:
A Gift ??? [smiley=huh.gif] I think not. I do believe that taking your meds in different ways/dosages may be helpful and his method may be helpful to others
BUT...
He did not bring us a cure all.
PS> Lithium takes awhile to get into your system ... right ??? So, how could one dose prevent a headache 2 hours later ??


I'll tell you something.  Watching my husband sleep peacefully pain free for the first time in weeks was most definitely a gift in our household.  Where did anyone use the word "cure"?  I sure didn't.  Please don't put words in my mouth.

Chet was very patient with me yesterday through PM's, and I, too, doubted that the small dose of lithium could work that quickly on anyone.  Mike is living proof that it can.  And did.  For what it's worth, Unsolved, I've done my homework here.  Lithium is available in immediate release form.  That must be the kind we have at home because Mike honestly did start to feel better within one hour of taking the pill.  

And, Nani - Chet didn't start out by arguing, his first post was not combative at all.  He did, as most people will, simply respond and answer the arguing that ensued.  Who here among us doesn't rise to the occasion and fight back? I'm obviously one of the repeat offenders in this regard  ::), but I will fight for this guy's right to bring us something that helped his cluster pain in hopes that it can help another clusterhead.  Guess what, it did.  Isn't that what this forum is supposed to be about?  

Now, I don't know Chet from a hill of beans.  But he brought a viable suggestion to the board with first hand experience as a clusterhead who has found his personal control switch.  (See?  I STILL didn't say "cure". )  So, since Mike is otherwise med free and as the circadian pre-emptive strike idea makes perfect sense to me, we thought we would give it a shot.  (I think being med-free is a HUGE part of the success here.)  

Further - most folks who have been prescribed lithium have been instructed to try it at much larger doses.  Mike was at 900 mgs at one point a few years back, combined with 720 mgs verapamil.  It honestly didn't make much difference for him then, either.  This is what Chet meant by pulsing instead of blanketing the system with lithium - we probably put too much lithium into Mike's system to be able to benefit from the resetting of the circadian clock.  I dunno.  Know what?  I honestly don't care.  Mike got a pain free night.  So, obviously, has Chet.  That's two clusterheads that this has helped, folks.  Don't lose sight of that, ok?

Title: Re: Lithium as Prophylactic
Post by unsolved1 on Jan 11th, 2005, 1:47pm

on 01/11/05 at 13:40:59, chedden wrote:
To Nani:
I have never advocated being "on" lithium (or any other drug). It is always frustrating when people twist or misrepresent what one says just for the sake of defending their own viewpoint.


Thread name "Lithium as Prophylactic"  
[smiley=huh.gif]

Title: Re: Lithium as Prophylactic
Post by chedden on Jan 11th, 2005, 1:48pm
More:

I'm going to sign off from this discussion (argument?) because I am very busy and have said most everything I have to say on the topic. I realize this solution may seem too complicated and/or too good to be true. For some of you it will be both. I hope that for some of you it will be a cure-all as well. It is for me.

Good luck,
Chet Hedden, Ph.D.

Title: Re: Lithium as Prophylactic
Post by Margi on Jan 11th, 2005, 1:50pm
I'm so sorry to see you go, DR. Hedden.  I hope you continue to experience success and pain freedom with this dosing method.

You have my deepest thanks for your suggestion.

Margi

and, yes, "lithium as prophylactic" is aptly titled.  Chet takes it while he is in cycle and then, as stated, tapers off it when his cycle is ending.  

Title: Re: Lithium as Prophylactic
Post by Bob P on Jan 11th, 2005, 2:38pm

Quote:
Who here among us doesn't rise to the occasion and fight back?

Not me. I'm the least argumentative person I've seen on this board.
Make Love, Not War!

I wouldn't stress the Dr. thing. He may be a Dr. of aboriginal poetry or something (oops, I googled him and he's an IT, Instructional Technology type). In fact, working at a University, as I do, I've come to realize that the attitude and the PhD usually go hand in hand.

Title: Re: Lithium as Prophylactic
Post by JoeS on Jan 11th, 2005, 5:34pm
Sure does know his knots though, if it's the same guy.

http://www.adventurecarolina.com/climbingknot.html#Hedden%20Knot

As far as the whole Lithium "argument," I only have a problem with this statement:


Quote:
Clusters by definition occur on a regular schedule.


Mine are frequently late or early for their scheduled appointments.   :)   (even in the absence of any medication, mind you).

Still, an informative thread.  Could be help to many  (may try it myself).  Thanks for posting.

Joe

Title: Re: Lithium as Prophylactic
Post by Margi on Jan 11th, 2005, 5:54pm
different guy, Joe, but LOL. ;)

I've since found out he's not a medical doctor - Bob was right, damnit (ow, that hurt).  But he is a very learned guy though, doctor of philosophy, I believe?  

we're going to get some lithium into Mike again tonight and see what happens.  Hopefully a repeat.  

Title: Re: Lithium as Prophylactic
Post by Bob P on Jan 11th, 2005, 5:54pm
Not sure about the knots. My search showed he spend time at the Univ. of Georgia Listserve.  His posts are pretty arrogant over there too.

That's the same statement I have a problem with Joe. To say that your attacks have to come at certain intervals or else you probably have migraines just doesn't set right with me.

I can't speak to the lithium since I've never used it. No reason it wouldn't work though. Of course verap is also a very cheap medication, with few side effects and very effective as a prophylactic.

Title: Re: Lithium as Prophylactic
Post by E-Double on Jan 11th, 2005, 9:26pm
I prob. should not have gotten into the discussion b/c I have not even tried lithium yet......I just have come to learn that we are all unfortunately different which is why there is no single effective treatment

I just wish everyone some relief and that people share there experiences without condesention or arrogance.

That goes for all threads and people......

Good luck and glad you have found your trick. I will certainly keep it in mind if I ever try Lithium.

Margi thank you as always and very happy for your hubby!!!!!!!

Eric ( who will not follow his name with the alphabet soup that he has  earned ;)_

Title: Re: Lithium as Prophylactic
Post by taraann on Jan 11th, 2005, 9:50pm
Hey Margi, please let us know how hubby makes out tonight!!!  I'll def be checking in tomorrow to see!

(I'm on lithium and verap, and this has been very interesting info indeed)

Title: Re: Lithium as Prophylactic
Post by Margi on Jan 12th, 2005, 9:51am
thanks for asking, Taraann :)

Mike had another pain free night, taking the 300 mgs of lithium at 8 p.m.  Our phone rang, however, this morning at 4:30 (alarm going off at my work), so that disrupted our sleep.  He had to take a 'trex this morning at about 5:30 - I think that jolt awake didn't help anything.

He got hit a couple of times yesterday through the day.  He took another lithium this morning to see if that wards it off through the daylight hours.  

2 pain free nights in a row is still something to crow about though. :)

and, yes, Bob - Chet wrote to me.  He is the knot guy. But he's in AZ now.    Damn, that's twice you've been right in less than 24 hours.  I know I'll pay for this.   ::)

Title: Re: Lithium as Prophylactic
Post by LeLimey on Jan 12th, 2005, 12:19pm
Margi has your husband just been taking the lith or any other regular meds? I don't mean this mornings trex.. just wondering about combinations. I hope it continues working

Title: Re: Lithium as Prophylactic
Post by Margi on Jan 12th, 2005, 12:45pm
nope, just the lithium since Monday night. He's been aborting with oxygen since 12/22 and only has had maybe 5 imitrex nasal sprays since then. Cycle is quickly ramping up but the two small doses of lithium have definitely brought it to its beastly knees so far.

just to give you a little history - Mike's been a clusterhead for nearly 30 years now, always episodic. Med free for 25 of those years, only the last two cycles has he tried the traditional meds (verap for the last one, verap/lith combo at the end of the previous one with a pred burst earlier on). Those two medicated cycles were his longest ever. Before the start of the second cycle, Mike did try the shrooms as well a full month before he started the pred burst.

This cycle, he was trying to stay as med free as possible in order to shorten the length. Hopefully, this light dose of lithium will help him be able to achieve the shorter cycle. Fingers crossed.

Title: Re: Lithium as Prophylactic
Post by chedden on Jan 12th, 2005, 1:25pm
A point of interest to those with non-regular patterns. This is from clusterheadaches.com/about.html:

Periodicity and Duration of the Attacks


Quote:
Attacks last from 30 minutes to 2 hours (mean of 45 minutes) in about 75 percent of cases. Occasionally, attacks - especially mild ones - may be as short as 10 minutes, whereas others may last as long as several hours. Attacks range in frequency from six per 24 hours to one per week, with a mean of one to two per day. Periodicity is a characteristic feature in about 85 percent of patients: attacks of pain tend to recur at the same hour each day for the duration of the cluster bout; many individuals also experience additional attacks that occur randomly throughout the day. About 75 percent of attacks occur between 9 p.m. and 10 a.m. (Russell, 1981). Manzoni et al, (1983b) found sharp peaks for attack frequency between 1 and 2 a.m., 1 and 3 p.m., and at 9 p.m (Fig. 6-4). Patients are awakened from sleep by pain paroxysms in about 50 percent of cases, usually within 2 hours of falling asleep (Lance and Anthony, 1971; Hornabrook, 1964).


If you are one who experiences random attacks, try to distinguish the random ones from those that occur at the same time every day. Do that by keeping track of the times of each attack. You should find that some of them do occur at the same time each day. In that case, treat those and the rest will (hopefully) go away.

Title: Re: Lithium as Prophylactic
Post by LeLimey on Jan 12th, 2005, 7:13pm
Margi is your husband still using O2? I'm not using lithium but I would like to talk to my doctor about this but I don't want to have to give up the O2 "in case". I'm still reducing on Pred so I know the time isn't right but it would be nice to be ready if it might work for me. I'm "lucky" in that my ha's are as near as damnit clockwork.

Title: Re: Lithium as Prophylactic
Post by karma on Jan 13th, 2005, 9:08am
Margi,
I hope no news is good news.

Title: Re: Lithium as Prophylactic
Post by vig on Jan 13th, 2005, 9:25am
I found there were three distinct subrhythms in an episode for me...
1. at a daily, precise time.  Circadian, like CHedden's.
2. 1 hour after falling asleep, hitting REM.  
do until morning...
 (wake up,
  suffer,
  fall asleep for 1 hour,)
repeat
3. MASSIVE Weekend hits
once or twice a weekend, apart from the other two patterns, the Big Kahunas would roll in. (not cajones, Kahunas.)

Title: Re: Lithium as Prophylactic
Post by Margi on Jan 13th, 2005, 10:00am
another pain free night, thanks to the lithium (thanks to Chedden's suggested timed, pre-emptive dosing, that is).  

Mike added a dose yesterday morning because he did get a few hits through the day, Tuesday.  No hits at all yesterday, just a couple of minor shadows.  Dosed again last night before bed and a gloriously sleep-filled night.  Anxiety gone, my husband is actually SMILING these days.  That's pure gold in my books. :)

Yes, he has still be using oxygen but hasn't needed much of it - just to blow away shadows more than anything.  Before he started the lithium on Monday night, he went through a 4' tank (S Tank) in seven days.  That's 3000 litres of oxygen.  Think about it.  He was getting nailed HARD. :(


Title: Re: Lithium as Prophylactic
Post by karma on Jan 13th, 2005, 10:23am
Margi,
This is really terrific news.
Simple affective and cheap.
Keep us posted

Title: Re: Lithium as Prophylactic
Post by Margi on Jan 13th, 2005, 10:25am
thanks, Karma. :)

I hope Chedden reports in soon too - I know he's in cycle right now and is having the same success here even at a lower dose than Mike.


Title: Re: Lithium as Prophylactic
Post by chedden on Jan 14th, 2005, 9:37am
Margi, Thanks for asking.

I felt two 30-minute shadows on days 2 and 3. The first was at 5:30 p.m. and the second just before bedtime (10:15 on day 2 and 9:30 on day 3), but nothing since then and no actual hits. I have been dosing once just before retiring every day.

I hope the magic is still working for Mike. If even one other person gets relief -- that's my reward.

Thank you for having the courage to give this a try and make the results public.

Title: Re: Lithium as Prophylactic
Post by Margi on Jan 14th, 2005, 9:56am

on 01/14/05 at 09:37:48, chedden wrote:
I hope the magic is still working for Mike. If even one other person gets relief -- that's my reward.

Thank you for having the courage to give this a try and make the results public.


Chet, that's what these websites are all about - sufferers reporting what helps them, just on the off chance it might help another one.  I think you're really onto something here!

More than 48 hours of pain freedom on my household now - 3 consecutive sleep filled nights and now 2 completely pain free days.  Mike is dosing at 7 p.m. and 7 a.m.  He had to add that extra morning dose to prevent the daytime attacks because I think he may have been at peak of cycle when he started it.  Hopefully, we can get him back to that once a day dose soon.  We've found that he needs to take the lithium earlier in the evening as he's finding it hard to fall asleep if he takes it too close to bedtime.  But, once he falls asleep?  He STAYS asleep.  Absolute heaven!!

THANK YOU, CHET!!  :)

p.s. - just like you mentioned, that first day - the lithium messed the beast up so much it threatened to switch sides but, by adding that second dose, it's gone dormant for now.  Fingers crossed that this continues.  

Title: Re: Lithium as Prophylactic
Post by vig on Jan 14th, 2005, 10:49am
I think the good news is that there will end up being more than one solution in treating CH's.  And when we add them all up, we may find what's really wrong or broken in us, and maybe THEN we might find the cure.

Title: Re: Lithium as Prophylactic
Post by Margi on Jan 14th, 2005, 10:51am
Amen to that, Paul.  Isn't that why we're all here?  :)

Title: Re: Lithium as Prophylactic
Post by E-Double on Jan 14th, 2005, 4:44pm
Good to hear and a wonderfully informative thread this turned out to be!

Thank you again and if I go the route of Lithium I will reference.

Best,

Eric

Title: Re: Lithium as Prophylactic
Post by eyes_afire on Jan 14th, 2005, 10:55pm

Quote:
Thank you again and if I go the route of Lithium I will reference.


Me too.  Thanks, Chet for bringing up this topic.  Next time I talk to the neurologist, I'm going to try to convince him that I prefer a 'lithium pulse' as my backup plan instead of topamax (should verapamil fail).

--- Steve

Title: Re: Lithium as Prophylactic
Post by Margi on Jan 17th, 2005, 9:41am
Giving this a bump.

closing in on one week pain freedom here.  Mike thought he might be able to drop his morning dose as he was feeling so much better on Saturday nite.  We slept in past the time of his regular dose and, sure enough, he got a warning that we're not quite ready to do that yet.  Not a major hit, but enough of a flick on the forehead to smarten up.

Still doing 300 mgs at 7 p.m., and 7 a.m.  No pain since last Wednesday.  None at ALL.  

Chet - how you doing?

Title: Re: Lithium as Prophylactic
Post by karma on Jan 17th, 2005, 11:59am
Margi,
I know you only from discussions I have been involved in with you on the shroom therapy and reading your other posts.
I respect your no BS approach and committment. If this Lithium dosing schedule was not working you would be just as fast to say it didn't work.

My only question is why aren't others giving it a try and if they are why aren't they saying something about it. It makes no sense to me at all.

If I needed to you can bet I would be giving it a try w/o hesitation but I've learned that people here are sometimes afraid of risking more pain for just a possibility of being PF.



Title: Re: Lithium as Prophylactic
Post by Margi on Jan 17th, 2005, 2:20pm
Hi Karma - thanks for your kind words.

I think the real secret to this success we're seeing for Mike is that he's not on any other meds. He's used verapamil for his last two cycles and, in the first of those cycles, combined it with 900 mgs of lithium a day. That was his longest cycle ever (6 months). I can't help but think that, for Mike, the verapamil prolonged things and that high dose of lithium gave him a blanket when all he needed was a pulse, as Chet says.

As well, the key to this method of dosing is killing the Queen Bee of attacks - I think Chet's really right here, that there is one major attack and the others that follow are just demon spawn of that one. For Mike, again, his big attack would come just after falling asleep, then his next major attack would be just after waking up the next morning. So, for us - we're killing the Queen Bee and, also, her snot-nosed little princess. And we're only using one bullet instead of confusing (and therefore, pissing OFF) the beast with a barrage of weapons.

Finally - your question as to why not anyone else is trying this? I can't answer for anyone else, but possibly not everyone was lucky enough to have a bottle of lithium hanging around in their cupboard like we were. I doubt Mike would have made a special appointment with the neuro to get a 'script to try this, honestly.

Additionally, for success I believe it would mean detoxing from all other meds first. That's a tough thing to convince someone to do. I don't believe it's that folks like the pain - it's more a case of that it's too hard, sometimes, to let go of a rope that has been keeping you from falling off that cliff all these years. It's scary.


Title: Re: Lithium as Prophylactic
Post by chedden on Jan 17th, 2005, 4:15pm
Margi, I'm doing just fine. Once in a while I feel little reminders that it's hiding in the shadows, but still taking just 300MG a half-hour before sleep at night.

Your analysis is right on and your characterizations are hilarious -- snot-nosed little sister and all!

You and Mike will do fine. I'm ecstatic!

Chet


Title: Re: Lithium as Prophylactic
Post by chedden on Jan 17th, 2005, 4:21pm
Ah, er...sorry. I meant little princess.

Title: Re: Lithium as Prophylactic
Post by Marc on Jan 17th, 2005, 7:33pm
I still have a supply left over from my 900mg days that didn't seem to do much for me then.

If what I'm doing now fails, I'll jump right on Chet's idea.

Marc

Title: Re: Lithium as Prophylactic
Post by M.R. on Jan 17th, 2005, 10:02pm
   The last three cycles....first one went to 600 Lith...480 Verp for a month...cycle broke in about 2 weeks, so I quit the Lith. Bad move. Went another month on the same. Cycle gone for 6 months. Next cycle, same thing, same dose....took it for two months. Cycle gone.
Same story for last cycle. Lith and Verp. works for me....and I'm not gaining the poundage I did with the steriods.
   If you want to call "pulsing" taking one in the morning and one at night like it's prescibed.....Okay.

  You all can stand around and piss on each others feet if you want, but I am convinced that there is no one cure and none of these things respond the same.

Go with what works for you.

Mike

Title: Re: Lithium as Prophylactic
Post by Chillrmn1 on Jan 18th, 2005, 5:12am
My cycle has been trying to end for the last 3 weeks. My meds are Lithium @450 mgs & Inderal always taken in A.M. Shadowing and few CHs up to Kip 5 during this period nights and days. After reading Chedden's post, switched dosing of these same meds to right before bedtime. First night, woke to 1 minor shadow which O2 handled. Subsequent nights and days no shadows or HAs. Jury is still out with me whether this was the natural order of the end of my cycle, coincidence, or whether the P.M. "pulse" dosing was responsible for my relief. But am still staying with the P.M. dosing.

Will tell you that when my next cycle begins, will follow Chedden's guidelines to see for sure, that is unless the "alternate" med I plan to administer kicks this Beast's ass once and for good.

Title: Re: Lithium as Prophylactic
Post by karma on Jan 18th, 2005, 6:14am
M.R.
Easy dude. There is no condemnation here or anyone professing a cure.
You gotta admit though so far its batting 1000

Title: Re: Lithium as Prophylactic
Post by chedden on Jan 18th, 2005, 11:15am
Just to clarify some terms, "pulse" refers to a dosing practice in which a medication is withdrawn for a period so that its blood level rises and falls as opposed to remaining constant. The time interval in a pulse dosing schedule depends on one's headache schedule. For example, in my case, I have had to dose at different times, say 4 p.m. and 9:30 p.m. to block certain attacks at 6 p.m. and 11:30 p.m. That would mean that my plasma level would reach maximum saturation at 6 and 11:30 and then drop off for the next 15-16 hours. That is very different from the way it is normally prescribed.

Concerning the term "cure," I have never represented the use of lithium as a cure. I have offered it as one way to "control" or "manage" clusters by blocking,  preventing, pre-empting them -- choose your term. To my knowledge it has no effect on the duration or frequency of ones "cycle."

Title: Re: Lithium as Prophylactic
Post by nani on Jan 18th, 2005, 11:35am
So if I take one dose a day now....do I have to skip a day to get the blood level down? And if I get hit all day do I take it before my first hit (2 hours before)? Lithium makes me feel weird, so I've been taking it at bedtime. I don't get hit at night though. How would this work for me? Or better said...could you suggest how I would take it.

Title: Re: Lithium as Prophylactic
Post by Margi on Jan 18th, 2005, 11:47am
repeat:  we think Mike's success is partly due to the fact that he is otherwise med-free.  The "conventional" cluster prescription is to combine lithium with verapamil and high doses of both.  That contradicts this theory.  
Mike didn't have much success with the overly-medicated route either.  
This isn't a cure - Mike's still most definitely in cycle.  But he's pain free in this cycle.  THAT is huge.  There's a lot to be said for not overmedicating oneself.

Title: Re: Lithium as Prophylactic
Post by nani on Jan 18th, 2005, 12:23pm
I have to take verap, clusters or not due to high BP. So it won't work at all for me?

Title: Re: Lithium as Prophylactic
Post by chedden on Jan 18th, 2005, 12:47pm
Nani: Personally, I'd rather feel weird than have clusters.

As I'm not a medical doctor, I'm not in a position to recommend anything in your specific case (and I have no idea what verap is). It appears, though that your nighttime dose of lithium *might* be blocking nighttime attacks for you. Do you have them during the daytime, even with the drugs you are taking? If so, what good are the drugs doing?

No, you don't have to skip a day to get your plasma levels down. I don't know what the rate of desaturation is, but I'm sure studies have been done on that, should you care to investigate.

PLEASE NOTE: Lithium is available in either ordinary tablets or "controlled-release" tablets or capsules. Avoid the controlled-release form. You'll get a dribble dose, rather than a pulse dose with those.

Title: Re: Lithium as Prophylactic
Post by nani on Jan 18th, 2005, 8:28pm
When I was episodic, I got hit at night. In the 5 years I've been chronic nighttime hits have not been a problem. I have only been on lithium since Oct.
I'm surprised to hear that you don't know what verapamil is. In your several years of CH, you never heard of it? It's a calcium channel blocker used for high BP and also is an effective prevent for CH. It relaxes the blood vessels. Yes, I still get hit during the day (most days are relatively easy hits)...but that might be the best I can get. I don't use timed release lithium. And I cannot afford to feel weird during the day. It effects my ability to do my job(s). I still don't see how this method might work for me. Thank you for your help.

Title: Re: Lithium as Prophylactic
Post by chedden on Jan 18th, 2005, 9:34pm

on 01/18/05 at 20:28:56, nani wrote:
I still don't see how this method might work for me.


No, doesn't sound as if it would.



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