Severe scalp pain

Hi everyone. I am at a loss. I have severe scalp pain all the time. Almost like someone pulled my hair really really hard. It doesn’t bother me if I wear my hair down. But it does hurt if I put clips in it or wear it up or any other way. Can’t even do braids. I have been battling this for years and it’s progressing. If I have my hair up for too long (sometimes I have to pull it up) I get a migraine. This is a very distinct headache. I cut my hair and it didn’t help. I went to the neurologist and he said it was scalp Allodynia. I took gabapentin for a month before getting off of it because my husband and I are ttc. He won’t see me until after I have a baby. We are on month 5 of trying. Also, I get very bad strained eyes anytime I look at something in front of me for a bit. I wear glasses and they are current prescription. Eye dr said everything looked okay. I do have lupus. It is very mild and under control. Do you know what it might be? I have been so frustrated and cried so many tears because I just want to wear my hair up and I can not do anything. Trust me I have tried.