Headaches

[Susielouberry]

Does anyone else suffer badly with headaches? Mine are horrendous, also other symptoms have been getting worse over the last week or so too. I'm not sure I can cope with it all much longer without treatment xxx

[MargaretGail]

I attended a headache clinic where I was told that I have 2 types of migraine, Lupus headache and stress headache.

[Susielouberry in reply to MargaretGail]

They are awful and are currently lasting for days at a time x

[MargaretGail in reply to Susielouberry]

I've found that caffeine chocolate, sweet potato and red wine always trigger one 😕

[milkwoman]

i recently went to a neurologist re: my headaches, which can also last for days. I've been having them for a couple of years now and my rheumy has been aware but at my last appt in Feb, I asked if there was anything that could be done since they seemed to have "ramped up" and I was getting very tired of dealing with them. So she referred me to a neurologist but I had to wait a bit to get into see her which I did a couple of weeks back.

She did a physical exam and asked A LOT of questions. (I have hypothyroidism, lupus (SLE), Sjogren's and have tested positive for some APS autoantibodies but no formal diagnosis). We talked about blood results and what meds and supps I was currently taking.

In my case, she thinks the headaches are stress/tension kind so nothing serious (neurologically speaking) but understandably annoying. I don't have flashes of light and my headaches, regardless of location (temples, back of head, forehead, etc.) are always on both sides. (From what I gathered, if pain is only on one side, and/or you have light flashes, that tends to indicate a more serious cause/condition).

She prescribed Fioriset and it has helped trenendously. It's not an everyday medication but only for when I have a headache just like any OTC pain reliever. I have a followup in 6 months but I can call for an earlier appt if anything changes in the way my headaches manifest themselves.

It's best to talk to your doctor about them and get referred to a neuro for consult. Only they can determine if you are having migraines, tension headaches and/or if something serious is going on.

Take care and good luck!

[Paul_Howard Partner LUPUS UK]

Hi Susielouberry ,

Headaches are common in lupus. They may be a part of the lupus itself or may be associated with a clotting (antiphospholipid) syndrome. They may or may not have a migrainous element with flashing lights and visual disturbances. In any patient with lupus who suffers from headaches a systematic search for known causes should be carried out including blood pressure checking and, very important, an examination of the blood for antiphospholipid antibodies ('sticky blood') and ultimately, if indicated, a brain scan.

[Dorothee]

One last question about 1000 blood test taken. I have asked for results and I am told they were all absolutely fine but please take these tablets??????? What should question should I have asked to make me a bit wiser????????