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Old 01-12-2006, 04:22 PM   #1
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Migraine question...

Hey, all

I am in the grip of a horrendous migraine right now. I have no family history of migraines, nor did I have any personal history of them until about a year and a half ago (I'm 35 now). Does anyone else out there have lupus with CNS involvement? My rheumatologist knows about the headaches I've been having, and has the attitude that "lots of people without lupus have migraines, too, and hasn't looked any further into the problem. (I think I shared that in another post). Is the treatment for lupus with CNS involvement any different? I need to know if I should push the issue with my rheumatologist.

Thanks in advance for your responses. I'm going to go lie down now.


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Old 01-12-2006, 05:23 PM   #2
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Exclamation Re: Migraine question...

Hi Michelle,

I was going to send you to my response to another post, but since you're hurting, I'll just paste it here for you:


Hi. I have lupus headaches. In fact, I've had one for the last 3 days.

The first time it hit, I ended up in the hospital for four days on a morphine drip while they ran all kinds of tests including 2 spinal taps and several MRIs, which showed nothing new.

They tried Imitrex and a host of other things I forget which didn't help at all. Then, they sent me home to do a 3-day IV therapy of DHE45, but it only made my brain feel like it was on fire. After walking around with an IV line in my arm at work, the neurologist said it had to be inflammation in my brain due to the lupus (aka "lupus headache") and put me on huge doses of decadron. Eureka!

The steroids did the trick, confirming that it was an inflammation/lupus headache. I'm already on prednisone daily for the lupus, but the neurologist put me on Topomax at the time to prevent the headaches, and it worked great! However, due to my current health care status (no insurance, charity hospital), I'm now on Neurontin, which works, but obviously not quite as well.

Hope my journey helps you out!


So, I would definitely ask the doc for a steroid boost if that's okay for you. Then, I'd ask to be tried on Topamax. Both of these things are used widely for lupus headaches. I would NOT take his answer without a fight, er, further conversation.

Also, for the short term, avoid light, sound, and touch. Take phenergan for the nausea, and alternate ibuprofen and tylenol for the pain if you can keep it down. A cold pack on your forehead may also relieve some of the pain. And a cool room. I really hope this passes quickly for you; I know it's like torture.

Let me know if I can help you any further,
Susan, aka handmade_n
Lupus, Fibro, APS and more!
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