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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › New battle plan

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New battle plan (Read 1528 times)

Lottie

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New battle plan
Sep 27^th, 2009 at 1:19pm

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

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bejeeber

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Re: New battle plan
Reply #1 - Sep 27^th, 2009 at 4:06pm

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. Shocked

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?

« Last Edit: Sep 29^th, 2009 at 3:52pm by bejeeber »

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.

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Lottie CH.com Veteran Offline Posts: 112 Gender:	Re: New battle plan Reply #2 - Sep 27^th, 2009 at 4:32pm 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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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: New battle plan Reply #3 - Sep 27^th, 2009 at 5:06pm Quote: 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.
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Bob Johnson

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Re: New battle plan
Reply #4 - Sep 28^th, 2009 at 1:41pm

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.

Bob Johnson

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Val_

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Re: New battle plan
Reply #5 - Sep 28^th, 2009 at 5:44pm

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? Tongue

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. Wink

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

Val

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Guiseppi

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Re: New battle plan
Reply #6 - Sep 29^th, 2009 at 3:30am

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

"Somebody had to say it" is usually a piss poor excuse to be mean.

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Lottie

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Re: New battle plan
Reply #7 - Sep 29^th, 2009 at 5:23am

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.

Quote:

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

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Aussie6330 CH.com Junior Offline I Love CH.com! Posts: 49 Western Australia Gender:	Re: New battle plan Reply #8 - Sep 30^th, 2009 at 5:13am 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
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