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.
Katharine
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.
Katharine
