The Lupus Forum banner

Fatigue, Headaches...

258 Views 5 Replies 6 Participants Last post by  mary520
I was diagnosed 2 years ago with Lupus, and since then over time i've learnt to deal with most of my symptoms except for the headaches!!!! .. sometimes they last a few hours.. others 3-4 days. I get distorted vision, as if im in a fish bowl. My doctor gave me some maxalt which worked for a few weeks, then stopped even helping in the slightest. I later got put onto Half Inderal LA 80mgs, which worked for abit longer.. but now neither are working and im still suffering from really bad headaches, which i think is causing me to sleep more, and feel drained all the time. i slept for 15hours last nite! and i feel like im in a no win situation because i know sleeping too much can cause headaches too! can anyone help? :p
1 - 1 of 6 Posts
Hi Jeni,

I think that headaches are truly one of the most difficult things to treat effectively as there can be so many causes. They are also one of the most frustrating and debilitating things to suffer from.

I have had years of bad headaches. All examinations (neuro, MRI etc.) revealed nothing of note and no-one seemed to have an answer. They first went for a while when my disease activity was better controlled. Then a few months later I got them again. They were slightly different and despite more stability in my lupus were not going anywhere.

I have recently been put on a med that can help if the headaches are due to either APS or vasculitis and so far (touch wood, it's only been three weeks) it seems to be working. I have to stress here though that that med is not a headache med, I was also having pretty significant cognitive problems. Everybody's case is different.

Basically what I'm saying here is that there can be so many causes but unfortunately docs will tend to "ignore" it a little unless you have bad examination results so I think it is important not to let it go. If you don't already see a neuro I would definitely try that route and if examinations haven't been done then I would hope that he/she would do that.

I would also want to know if you have been checked out (blood test wise) for APS. If you haven't, then it would be just worthwhile ruling that out.

See less See more
1 - 1 of 6 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.