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Margi
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Re: Lithium as Prophylactic
« Reply #50 on: Jan 12th, 2005, 9:51am »
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thanks for asking, Taraann Smiley
 
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. Smiley
 
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.   Roll Eyes
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Re: Lithium as Prophylactic
« Reply #51 on: Jan 12th, 2005, 12:19pm »
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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
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Re: Lithium as Prophylactic
« Reply #52 on: Jan 12th, 2005, 12:45pm »
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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.
« Last Edit: Jan 12th, 2005, 12:50pm by Margi » IP Logged

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Re: Lithium as Prophylactic
« Reply #53 on: Jan 12th, 2005, 1:25pm »
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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.
« Last Edit: Jan 12th, 2005, 1:30pm by Chet » IP Logged
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Re: Lithium as Prophylactic
« Reply #54 on: Jan 12th, 2005, 7:13pm »
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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.
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Re: Lithium as Prophylactic
« Reply #55 on: Jan 13th, 2005, 9:08am »
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Margi,
I hope no news is good news.
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Re: Lithium as Prophylactic
« Reply #56 on: Jan 13th, 2005, 9:25am »
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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.)
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Re: Lithium as Prophylactic
« Reply #57 on: Jan 13th, 2005, 10:00am »
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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. Smiley
 
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. Sad
 
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Re: Lithium as Prophylactic
« Reply #58 on: Jan 13th, 2005, 10:23am »
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Margi,
This is really terrific news.  
Simple affective and cheap.  
Keep us posted
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Re: Lithium as Prophylactic
« Reply #59 on: Jan 13th, 2005, 10:25am »
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thanks, Karma. Smiley
 
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.
 
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Re: Lithium as Prophylactic
« Reply #60 on: Jan 14th, 2005, 9:37am »
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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.
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Re: Lithium as Prophylactic
« Reply #61 on: Jan 14th, 2005, 9:56am »
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on Jan 14th, 2005, 9:37am, 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!!  Smiley
 
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.  
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Re: Lithium as Prophylactic
« Reply #62 on: Jan 14th, 2005, 10:49am »
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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.
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Re: Lithium as Prophylactic
« Reply #63 on: Jan 14th, 2005, 10:51am »
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Amen to that, Paul.  Isn't that why we're all here?  Smiley
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Re: Lithium as Prophylactic
« Reply #64 on: Jan 14th, 2005, 4:44pm »
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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
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Re: Lithium as Prophylactic
« Reply #65 on: Jan 14th, 2005, 10:55pm »
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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
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Re: Lithium as Prophylactic
« Reply #66 on: Jan 17th, 2005, 9:41am »
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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?
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Re: Lithium as Prophylactic
« Reply #67 on: Jan 17th, 2005, 11:59am »
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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.
 
 
« Last Edit: Jan 17th, 2005, 12:12pm by karma » IP Logged
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Re: Lithium as Prophylactic
« Reply #68 on: Jan 17th, 2005, 2:20pm »
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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.  
 
« Last Edit: Jan 17th, 2005, 2:24pm by Margi » IP Logged

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Re: Lithium as Prophylactic
« Reply #69 on: Jan 17th, 2005, 4:15pm »
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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
 
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Re: Lithium as Prophylactic
« Reply #70 on: Jan 17th, 2005, 4:21pm »
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Ah, er...sorry. I meant little princess.
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Re: Lithium as Prophylactic
« Reply #71 on: Jan 17th, 2005, 7:33pm »
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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.
 
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Re: Lithium as Prophylactic
« Reply #72 on: Jan 17th, 2005, 10:02pm »
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   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
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Re: Lithium as Prophylactic
« Reply #73 on: Jan 18th, 2005, 5:12am »
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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.
« Last Edit: Jan 18th, 2005, 5:46am by Chillrmn1 » IP Logged
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Re: Lithium as Prophylactic
« Reply #74 on: Jan 18th, 2005, 6:14am »
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M.R.
Easy dude. There is no condemnation here or anyone professing a cure.
You gotta admit though so far its batting 1000
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