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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> Lithium Questions
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Message started by JArnoldSC on Sep 3rd, 2009 at 1:04am

Title: Lithium Questions
Post by JArnoldSC on Sep 3rd, 2009 at 1:04am
I am a chronic cluster sufferer :-[.  I have been in cycle since February 2006.  My neuro has tried almost everything to break cycle with no success.  I recently had an appointment at MUSC and the dr was suprised I have not tried Lithium yet.  He prescribed 300mg a day for a week and then up to 600mg a day.  I go back to see him near the end of the month for evaluation.  Just wanted to check the board and see if any other chronic CHer's have had success with Lithium.  What side effects are common?  I've read the huge list...my wife is really looking forward to the increased irritabilty ;D.  Is it common to have to stay on the meds after breaking cycle or do you go off the meds completely?  I am also taking Neurontin (2400mg daily), Seroquel, Treximet, Zanaflex, Magnesium Oxide, Kudzu Extract (no effect but figured why not...I'll try anything) and imitrex injections.  I also use O2.  O2 will diminish or kill a hit around 40% of the time for me.  I tried Verapamil and Depakote in the past but they either had no effect (Verap) or made me feel like the walking dead.  No braaiiin!!!   I have constant shadows 24/7 and spike 6-7 times a day.

Title: Re: Lithium Questions
Post by Guiseppi on Sep 3rd, 2009 at 2:06am
I'm male, 49, episodic for 31 years. Lithium is supposed to be more effective for chronics then episodics, but it's been my silver bullet!

On cycle I take 1200 mg a day. As far as dosing goes, I used to think it was based on your body size. It's actually based on how YOUR body metabolizes it. Your doc will probably require several blood tests when you first go on it to establish what the therapeudic level for you will be. I had to go for blood draws every 3 days, then once a week then just one blood draw 2 weeks after going back on it each cycle.

Side effects vary by person, don't let the whole laundry list of POSSIBLE side effects spook you. We take it at a far lower dose then those who use it for psychological issues.....so don't sweat the Hollywood version of the drooling, mouth breathing, semi comatose patient!

I find for the first 2 weeks I pee a LOT! It's a salt after all, they'll warn you to increase your water intake. I get a mild lethargy but nothing a cup or two of coffee won't dispel. For me it blocks 70-80% of my attacks, oxygen kills most of the rest with only the occasional imitrex jab. (I'm in law enforcement and it doesn't affect my abuility to work if that helps ease your mind!) Do read the "oxygen info" link on the left as tweaking HOW you use the 02 can dramatically increase your abort rate.

DON"T be afraid to give lithium a shot. It's ben the miracle prevent for many on the board, either alone or in combination with verapamil. Hoping it works as well for you as it has for me.

Joe

Title: Re: Lithium Questions
Post by Bob_Johnson on Sep 3rd, 2009 at 5:09am
A list of side effects is a statement of POSSIBILITIES. It is not a PREDICTION of what will occur. Wisdom calls for knowing both the risk and asking the doc what to look for, i.e., symptoms of side effects.

Title: Re: Lithium Questions
Post by MattyAA on Sep 3rd, 2009 at 6:46am
JArnoldSC, the constant shadows and pain peaking up sounds also like hemicrania continua, have you been trying any NSAIDs, especially Indometacin?

Title: Re: Lithium Questions
Post by JArnoldSC on Sep 3rd, 2009 at 8:57pm
I have not tried any NSAID's that I know of.  I'll have to research hemicrania continua.

Title: Re: Lithium Questions
Post by Karla on Sep 13th, 2009 at 11:29pm
I took 900mg of lithium for 2 years.  It cut the number of my ch in half and the remaining 4 ha a day I had were less intense and manageable.  After 2 years the beast found my address again and it quit working so I quit taking it.  Was a sad day.  As far as side effects go there is a long list.  Ask your dr or read up on net.  My dr. told me this is a old medicine and the drs are aware of what to watch for for toxicity symptoms and is quite safe to take because the drs are so educated and up on it.  I loved being on lithium. 

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