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Chet
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Lithium as Prophylactic
« on: Jan 9th, 2005, 1:06pm »
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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.
« Last Edit: Jan 9th, 2005, 1:37pm by Chet » IP Logged
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Re: Lithium as Prophylactic
« Reply #1 on: Jan 9th, 2005, 2:22pm »
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Glad to hear that you are 'in control' of your headaches.
 
PF Wishes,
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Re: Lithium as Prophylactic
« Reply #2 on: Jan 9th, 2005, 3:25pm »
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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.
« Last Edit: Jan 9th, 2005, 5:52pm by Chet » IP Logged
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Re: Lithium as Prophylactic
« Reply #3 on: Jan 9th, 2005, 6:20pm »
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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.
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Re: Lithium as Prophylactic
« Reply #4 on: Jan 9th, 2005, 6:38pm »
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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.
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Re: Lithium as Prophylactic
« Reply #5 on: Jan 9th, 2005, 6:57pm »
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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.
« Last Edit: Jan 9th, 2005, 7:06pm by Chet » IP Logged
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Re: Lithium as Prophylactic
« Reply #6 on: Jan 9th, 2005, 9:55pm »
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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  Huh . I honestly believe I've used more Trex than ANYONE . (Literally thousands of shots)
 
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Re: Lithium as Prophylactic
« Reply #7 on: Jan 9th, 2005, 11:30pm »
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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.
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Re: Lithium as Prophylactic
« Reply #8 on: Jan 10th, 2005, 9:46am »
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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.
 
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Re: Lithium as Prophylactic
« Reply #9 on: Jan 10th, 2005, 11:45am »
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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.
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Re: Lithium as Prophylactic
« Reply #10 on: Jan 10th, 2005, 1:58pm »
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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.
« Last Edit: Jan 10th, 2005, 2:02pm by Chet » IP Logged
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Re: Lithium as Prophylactic
« Reply #11 on: Jan 10th, 2005, 2:11pm »
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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. Smiley
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Re: Lithium as Prophylactic
« Reply #12 on: Jan 10th, 2005, 2:31pm »
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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.  Smiley
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Re: Lithium as Prophylactic
« Reply #13 on: Jan 10th, 2005, 2:39pm »
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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.
« Last Edit: Jan 10th, 2005, 5:36pm by Chet » IP Logged
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Re: Lithium as Prophylactic
« Reply #14 on: Jan 10th, 2005, 2:48pm »
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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.
 
 
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Re: Lithium as Prophylactic
« Reply #15 on: Jan 10th, 2005, 2:49pm »
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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.
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Re: Lithium as Prophylactic
« Reply #16 on: Jan 10th, 2005, 2:52pm »
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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.
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Re: Lithium as Prophylactic
« Reply #17 on: Jan 10th, 2005, 3:45pm »
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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.
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Re: Lithium as Prophylactic
« Reply #18 on: Jan 10th, 2005, 4:33pm »
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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.
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Re: Lithium as Prophylactic
« Reply #19 on: Jan 10th, 2005, 4:52pm »
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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.
 
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Re: Lithium as Prophylactic
« Reply #20 on: Jan 10th, 2005, 5:01pm »
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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.
« Last Edit: Jan 10th, 2005, 5:03pm by Chet » IP Logged
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Re: Lithium as Prophylactic
« Reply #21 on: Jan 10th, 2005, 5:35pm »
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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!
 
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Re: Lithium as Prophylactic
« Reply #22 on: Jan 10th, 2005, 5:42pm »
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LOL ... she called me a she ! crackup
 
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.
 
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Re: Lithium as Prophylactic
« Reply #23 on: Jan 10th, 2005, 5:51pm »
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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.
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Re: Lithium as Prophylactic
« Reply #24 on: Jan 10th, 2005, 5:56pm »
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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?
« Last Edit: Jan 10th, 2005, 5:57pm by Chet » IP Logged
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