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Hello everyone. I am needing some help. I was diagnosed with SLE about 4 years ago. I have been doing fairly well. I have the usual joint pain...pain is with my knees, left hip and elbows. I have had pleurisy twice and pericarditis once. I take 10 mg of prednisone and 400 mg of plaquenil every day. For the most part I have been really blessed with a great family and great rheumy that listens!
I have had "atypical" migraines for about 10 years and have taken topamax and nortriptyline as maintenance medications. I would usually average 1-2 migraines a month and 2-4 headaches a month. I thought this was good control, however my rheumy disagreed. He didn't really like what my neuro had been doing, or really the lack there of, he had been asking me to see another neuro for about 2 years but I was stubborn and didn't go (stupid!). About 6 months ago I started having horrible, pounding, throbbing, persistent headaches. I wouldn't call them migraines as they are not just on one side. They can last up to one week. I'm missing work but more important I'm missing time with my boys.
I went to see the new neuro and he was very concerned. I had an MRI/MRA. It showed old lupus vasculitis (another story on how the nurse told me about that!). Now he wants to do a lumbar puncture. He thinks I have Lupus CNS.
I'm at the point that I really don't care what they do, as long as I can get relief. I feel like my head is going to explode. I've been trying to find out exactly what they are looking for with the LP. Does any one else have headaches like this? If so what helps you with relief? I have vicodin, it helps for a minute but it is really just a band-aid.
Sorry for such a long rant and post, but thank you for your help.
Delana
I have had "atypical" migraines for about 10 years and have taken topamax and nortriptyline as maintenance medications. I would usually average 1-2 migraines a month and 2-4 headaches a month. I thought this was good control, however my rheumy disagreed. He didn't really like what my neuro had been doing, or really the lack there of, he had been asking me to see another neuro for about 2 years but I was stubborn and didn't go (stupid!). About 6 months ago I started having horrible, pounding, throbbing, persistent headaches. I wouldn't call them migraines as they are not just on one side. They can last up to one week. I'm missing work but more important I'm missing time with my boys.
I went to see the new neuro and he was very concerned. I had an MRI/MRA. It showed old lupus vasculitis (another story on how the nurse told me about that!). Now he wants to do a lumbar puncture. He thinks I have Lupus CNS.
I'm at the point that I really don't care what they do, as long as I can get relief. I feel like my head is going to explode. I've been trying to find out exactly what they are looking for with the LP. Does any one else have headaches like this? If so what helps you with relief? I have vicodin, it helps for a minute but it is really just a band-aid.
Sorry for such a long rant and post, but thank you for your help.
Delana