I have had headaches for a long time, but growing up, we attributed them to stress. And that's what they seemed to be. Classic stress headaches.
However, since getting sick, I have experienced headaches much more frequently. Sometimes they are in the front of my head, over my eyes and nose. But most of the time, they are this intense pounding on the back of my head and at my brain stem.
Several years ago, as a result of my headaches, I went to see a neurologist. And he told me that given that headaches are so much more common in the general population than lupus and RA are, he felt my headaches had nothing to do with my illnesses and were just headaches.
He gave me a prescription for Imitrex, which I took twice. But both times it made me feel really spacey and I would rather deal with the headache than my head-floating-in-the-clouds feeling.
This sounded like snake oil to me.
I wasn't buying what he was selling, and I never went to see him again.
Basically at this point, until I can see a different neurologist, I am self-managing my headaches. For me, I need cold air, a cold compress on my head, ibuprofen, total silence, darkness, and sleep. I guess this probably isn't the best way of dealing with the headaches because I can't function well while they are happening, but it's all I can do right now.
My lupus also most likely plays a role in my headaches. I am photosensitive and react rather violently to fluorescent lights, which causes me to get really overheated and get a headache.
Headaches, specifically migraines, are common in Scleroderma, Sjogren's Syndrome, Systemic Lupus Erythematosus (SLE), and also RA. The one thing that all of these diseases have in common is that they tend to come with Raynaud's Phenomenon, which many RA patients have secondary to RA, which can cause headaches.
According to one article, "Patients with rheumatoid arthritis (RA) may complain of headaches, which may have varying pathogenic mechanisms. For example, subluxation in the upper cervical spine may cause pain in the upper neck radiating to the occipital or temporal regions, or may cause retro-orbital pain. Temporomandibular joint involvement in RA may also give rise to pain
radiating to the temporal region" (Pal, et al. 1989: 312).
While the presence of headaches as a symptom of disease are more agreed upon when it comes to Lupus rather than RA, a recent conversation with several people who have RA and suffer from headache disorders made me realize that I do need to look into this issue more for myself.
If you are experiencing frequent headaches, you should talk to your rheumatologist and see about getting a referral to a neurologist.
Pal, B., C. Gibson, J. Passmore, I.D. Griffiths, and W.C. Dick. 1989. "A Study of Headaches and Migraine in Sjogren's Syndrome and Other Rheumatic Disorders." Annals of Rheumatic Disease 48 (4): 312-316.