Neurology and stuff. #lupus

I went to see my neurologist last week. He knows about so much more than neurological disorders. He’s like a walking PubMed. I feel pretty confident in his knowledge of all my health issues, and how they may or may not relate to neurology.

Before I got the spinal tap, I talked to him on the phone about getting some headache relief. I’ve had them every day for years and I was going through a really bad bout of them. He sent in a prescription for nortriptyline and I’ve been on it for a few weeks now. He just raised my dose from 10mg to 20mg and it’s making me feel pretty groggy. I am noticing some mild relief from the headaches, and occasionally having mornings where I don’t wake up with one and nights when I don’t go to bed with one. I still had a pretty bad headache the other night. Antidepressants, even if they’re just for headaches, have an adjustment period where your body has to get used to them, so I’m going to wait it out and see if the grogginess goes away. If it turns out to give me decent headache relief, it could really change my life. If it makes me groggy forever, I’ll have to try something else. I hate trying new medicines but I can’t have headaches every day for the rest of my life.

My neurologist looked over my test results from the spinal tap and blood tests. He feels that everything is a result of the lupus and that I don’t have a separate neurological disease. He also agreed that the Rituxan did its job on the neuronal antibodies.

My lupus flared yesterday. I am always sickened by lupus but there are certain times where it gets really angry. I was stressed out yesterday morning because of this other appointment I had. The combination of the stress and my period sent me into a flare last night. I had a lot of back pain yesterday and when I was sitting to watch TV last night, I got hit with a bad wave of pain everywhere. I slept like shit because of it. I’m really not on any substantial pain killers. I don’t think I want to be either, that kind of thing never seems to help my type of pain for some reason anyway. I took extra hydrocortisone for my Addison’s since my body was under stress. I was starting to have those low-cortisol symptoms. It seemed to help the pain too. I took a little extra tonight too since I’m still in a lupus flare. My face is red and it burns like a sun burn. I have a fever and my skin is really hot to the touch, and sensitive to my clothing. It doesn’t help that the weather here is hot. I’m achy everywhere again but not as bad as last night. I’m pretty tired. I have been all day. I never really know how long a flare will last. I’ve taken ibuprofen and Tylenol and I’m still in pain and running a fever. But if I didn’t take either of those, it would probably be really bad.

I’m going to see my endocrinologist at the end of the month. I want to make sure I’m on the right amount of steroids for my Addison’s, and talk to him about my chronic heart palpitations. My rheumatologist wants to put me on prednisone for my lupus, but I have to ask my endocrinologist about it first since any steroids will effect my Addison’s. I know my endo isn’t a fan of prednisone, but I might need it for my lupus. Honestly, I don’t really want to be on it either. The side effects are a bitch. But if it’s a stepping stone to put my lupus in remission, I’ll do it.

I’m still pretty sore from the spinal tap. My muscles feel weak and it’s hard to do anything that requires bending over. I’ve been having pain there just in general, too. It was bad yesterday. I’m still using the back brace. The pain and weakness is a pain in the ass. It’s just another thing on my list of things that make daily activities more difficult.

Other than that, I’m married to my crochet hook and hoping for some cold weather.



  1. I know everyone’s very different but just in case it’s encouraging, I wanted to let you know years ago my neurologist put me on Nortyptiline for chronic headaches as well. She had me on over 100mgs at one point and it worked well for me. Also, Tramadol, for me, is a great middle ground pain med for my Lupus body pain. Best of luck.

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