It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Lupus Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 12-14-2005, 07:13 PM   #1
Join Date: Oct 2001
Posts: 96
FeelinPuney HB User
Question Lupus Headaches and other Questions?

Hi everyone,

New to this board and I have had Lupus for at least 5 years and still confused about the disease. I been having really bad headaches lately and have taken meds the doctor gave me (Imatrex) which makes me feel worse. Does anyone know anything else that might help? Also, anyone have breast implants when they were diagnosed with Lupus?


Old 12-15-2005, 10:14 AM   #2
Senior Member
Bryansmom's Avatar
Join Date: Jun 2005
Location: Elk Grove
Posts: 127
Bryansmom HB User
Re: Lupus Headaches and other Questions?

Dear Puney,
I've had much trouble in the last few years with pretty severe migraines. My rheumatologist can't say whether they're lupus related or not (and I quote, "Lots of people without lupus get migraines, too.") Whatever. Prior to seeing the rheumatologist, though, my headaches got so bad that I was finally sent to a neurologist (I swear I thought I had a brain tumor or something). Imitrex had not done anything for me. I had been taking massive doses of ibuprofen. She put me on naprosyn (naproxen). Then when that didn't help all the way, I was allowed to take tylenol with the naprosyn. Add a large cup of caffeinated coffe to the mix and that usually helped with the headache. If the imitrex hasn't helped and if it is making you feel worse, I'd ask for another med. There are other things you can try. No two people are alike and therefore people are going to respond differently to the same medications. Don't feel, though, that you have to live in pain. There are alternatives. Take care and I hope you get some relief.

Michelle in CA

Sponsors Lightbulb
Old 12-15-2005, 05:29 PM   #3
Join Date: Feb 2004
Posts: 4,960
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Lupus Headaches and other Questions?

Dear Feelin, No implants. But lots of severe headaches in the run-up to a Dx. They were the kind that force you to stay immobile and avoid light; mostly one-sided. Awful. My then-GP thought they were cluster headaches, and he prescribed Bellergal (not even sure if it's still in use). The drug helped but I'd lose at least a day with each one.

I wasn't Dx'ed for 15 years or so after the headaches started. Only got two to four a year---and I quickly felt for anyone with truly chronic migraines.

Best wishes to you, Vee

Old 01-09-2006, 10:18 PM   #4
Junior Member
Join Date: Jan 2006
Location: Louisiana
Posts: 39
handmade_n HB User
Post Re: Lupus Headaches and other Questions?

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! And uh, no breast implants here.
Susan, aka handmade_n
Lupus, Fibro, APS and more!

Old 01-13-2006, 07:05 AM   #5
Join Date: Oct 2001
Posts: 96
FeelinPuney HB User
Question Re: Tell me descriptions on how the Migraines Start

Hi Handmade,

Can you give me a description on how these headaches feel? My headaches have a fullness in the frontal area of my head. And before I actually get one my forehead gets really tender and hurts.

Old 01-13-2006, 12:20 PM   #6
Junior Member
Join Date: Jan 2006
Location: Louisiana
Posts: 39
handmade_n HB User
Re: Lupus Headaches and other Questions?

Well, I don't have one at this moment (thank God!!!), so it's up to my memory and that's scary. I remember this last one being like in the center of my forehead and off to the left. In the beginning of the headache, it seems like it's off to the side, because laying on that side makes it either worse or better, I forget now. I know the area on my forehead is tender during the headaches, because once I'm up I sit there rubbing on it and I'm always surprised it hurts on the outside!

It's all weird, I know, but hope this helps!
Susan, aka handmade_n
Lupus, Fibro, APS and more!

Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Lupus? Am I just too scared? Vivi09 Lupus 8 01-02-2009 06:55 AM
What was it that made you suspect Lupus & how did you get DX'ed? BriansMom444 Lupus 13 11-11-2008 07:16 PM
New here - Do I have Lupus? Dawgswife Lupus 15 06-04-2007 07:45 PM
Questions re: Lupus gunner00 Lupus 3 02-24-2007 05:46 PM
Questions about Childhood Lupus Childhood LUPUS Lupus 7 06-10-2006 06:40 AM

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off

Join Our Newsletter

Stay healthy through tips curated by our health experts.


There was a problem adding your email Try again

Thank You

Your email has been added


VeeJ (173), ladybud (43), AngelicBrat (16), luca689 (7), ksp (6), neveragain444 (6), luvinmusiq (5), brooklyngirl (4), Daisygrace (4), AgedFlowerChild (3)

Site Wide Totals

teteri66 (1180), MSJayhawk (1013), Apollo123 (909), Titchou (856), janewhite1 (823), Gabriel (763), ladybud (755), midwest1 (671), sammy64 (668), BlueSkies14 (607)

All times are GMT -7. The time now is 04:11 PM.

Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!