Hmm ... I don't know much about headaches. or how they are or are not related to lupus. I don't get migraines, or long-lasting headaches. What my headaches lack in duration, they make up in intensity though! I do get very short (few seconds) headaches that stop me dead in my tracks! I don't get them all the time, and I never can tell when one is going to come - but holy! When I get one, it is like an electric current went through my brain, or I was stabbed. I can't move, I can't talk, I can't even think for those seconds. I just pause. No idea what causes it - it's blinding though. Maybe everyone gets them. I don't know. Do you think it could be related to SLE? ...or it is just a random occurence? I see my rheumatologist again at the end of December. I will write it down so I remember to ask him. I had it on my mind when I went in two weeks ago, but sometimes my brain is cloudy and I forget what I want to say! Ah the joy of lupus:)
I am from Canada as well, I don't know what province you are in but try going on www.lupuscanada.org.
Their toll free number is 1.800.661.1468
I hope this is a help for you.
Keep us posted. I am in your corner rooting for you.
I'm from Ontario, I've been to the website you suggested, but I find the info so overwelming as well as the disease. Anyways thanks for the support!
Im new to this forum as well - and very sorry to hear about your Trigeminal N!! Your experience sounds just like mine - I began having cluster headaches in 2003 (which, I KNOW what kind of pain TN causes!) and was only recently diagnosed with Lupus. Do I think the two are related? You bet. So does my rheumy..
Get yourself checked out good - and be sure you chronicle your episodes of TN for the Rheumy..
I get dreadful headaches--I also have antiphospholipid syndrome(sticky blood) I also am having bad balance problems too. I also suffer with temporal mandibular joint dysfunction, common in fibromyalgia ( I have that as well as lupus)
Life without a headache must be lovely--I cannot remember when.!!
If you are going to see a new Rheumie, make sure you write a comprehensive symptoms list. Good luck.
I completely understand the headaches! I have CNS vasculitis and thought my headaches were under control - my neuro has changed meds/dosages several times - very frustrating! Keep in touch with your dr and keep a log, that will help pinpoint what causes the flares and the severity. Good luck!
I hate headaches
I have tons of headaches all the time. I've suffered from migranes since I was 15... The bad kind, with light sensitivity, nausea, sound sensitivity, etc... But in the past couple of years I've had this horrible headache. I get these stabbing-like sensations, sometimes on just one side by ears or by my eyes, or sometimes the back of my head. They are horrible... I've tried so many different meds, and nothing seems to work. Sometimes the pain is so violent it makes me nauseated.