My neuro now put me on lithium, because verapamil and methysergide didn't work (good enough). I also still have to take the methysergide, until the lithium kicks in. Now I'm willing to try anything, I'm desperate to find something that works because I'm absolutely exhausted. The only med that worked for me so far is prednisone.

Now my sister (she's a nurse) is worried about me taking lithium. She says it has very serious side effects. I read some info on it, but I'm curious: is anyone here familiar with this drug? And if you are, do you have any side effects (especially if they're actually worse than CH itself)?

Lottie

I've taken it for CH and I personally didn't experience any side effects.

I think I was on an unorthodox  combo of lithium and Naproxen once and it was working well for a while. [EDIT] It has been brought to my attention that this combination could be DANGEROUS, so don't anybody try it without researching to see if I'm full of bologna.  :o

But as we all know the beast can figure out a work around just when you think you got him pinned down, so it was off to other things.

Have you tried hi flow non-rebreather O2 yet Lottie?

Yes I use a 25 lpm regulator.
Lithium is prescribed as a preventative, but I'll have to wait a couple of weeks before it'll start to work.

Using lithium and naproxen together does seem unorthodox. The neuro warned me not to take any NSAID's while on lithium.

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And if you are, do you have any side effects (especially if they're actually worse than CH itself)?

Like anything else it depends largely on the dosage.

I haven't experianced any side effect from any med thats worse than dealing with the pain of CH.

Many folks here cheer Lithium!

It's been around for so many years that the side effects are well known, easy to identify (your doc should give you a list of symptoms), and he should require regular blood tests to establish a safe/effective dose for you.

Once the initial dose has been established, you will be quite competent to self-observe and report problems. Side effects tend to develop at a relatively slow pace so that you/doc can take action. But, with good initial blood testing, etc. the probabilities are low that you will not have problems.

Hi Lottie,

After reading about all of the side effects of Lithium I was a bit skeptical at first as well.  I ended up having No problems for the most part... tried up to 900mg Lithium, it didn't prevent my clusters, however.  The only problem I did have was Lithium exacerbated my migraines.  I guess it has been proven and published (but many neuros know little about it - geeee what a surprise) that Lithium & a few other cluster meds can make migraines worse for those who have both.  who knew?    :P
I'd work with your doc and as long as you go in regularly for your bloodwork to check your serum levels, you should be fine.  Document any changes you notice to discuss, of course - as with any drug.   ;)

best of luck!!  If it works, it is worth the try, right?!

Val

Another strong vote for lithium here. It's been my only prevent for many yeras. I'm almost 50, episodic for about 31 years. I use 1200 mg a day while on cycle, blocks 70-80% of my attacks, oxygen handles most of the rest.

My side effects: I pee a LOT the first 2 weeks, it is a salt and your body will try to flush it as fast as you take it in. I get a little lethargy, nothing a cup or two of coffee doesn't take away. I get the fine hand tremors, but nothing really noticeable.

Hope it proves as effective for you. It's truly been my silver bullet.

Joe

Thanks for the responses. I'm less concerned about it now.

I'm on 600 mg of lithium a day, and it's most likely I'm chronic. Haven't been pf for almost a year.


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I pee a LOT the first 2 weeks

I practically live in the bathroom now, so that sounds familiar. I also feel sick a lot and have stomach aches since I started taking lithium, but nothing serious. If it's going to work, it's definitely worth it.

Anybody know something about infertility problems due to lithium?

Lottie

To inject a little levity here................ Lithium is also one of the drugs of choice prescribed to Schizophrenics............ Oh-dear, what does that say about us lot, "what"........ "yes I know, I've already told them that" sorry folks just my other self offering stupid advice. He's forever butting in!

Cheers to all   :D