New to Group -My Story with ON
 

I have finally decided to reach out to a support group after a long fight with this illness. I began having what I thought were chronic migraines in my final years of college. My primary care doc sent me to a neurologist after several ER trips for these extremely bad headaches. He started with a brain scan and then a cervical MRI. In his office, he was able to try Botox treatments, which were not successful for me. I went to physical therapy to try to get a handle on my cervical pain, which is very severe on its own. He put me on pain meds, and then referred me to a pain management doctor so that they could work together to try to treat my pain. Though he believed it was ON it at that time, he indicated that a pain specialist could confirm. My pain management doctor is an amazing lady, even though I don't always get the best results from what she tries. She first did occipital nerve blocks on both the right and left side as I have bilateral problems. I was able to get a few days of relief from these injections, which allowed her to confirm the ON diagnosis. Because these blocks are enough for some people, she tried to repeat them just in case a second block would help. Unfortunately, the pain returned in a couple of days as it had before. At that point, she recommended that we try RFAs. I had them done on the left and the right, and I had relief for almost three months. For a while, I thought those were going to be the answer, and I was shattered when the pain returned. During the time that I did have relief, she performed an epidural to try to treat the severe nerve pain I have between my c4 and c5. This pain radiates down into my arms, hands, and my ring and pinky fingers. I had a terrible reaction to that procedure. I ended up in the ER with a spinal headache. I had to have a patch job done on my spine, and I will never be able to have a steroid injection again as we determined that I am allergic. At this point, my doctor has prescribed me to Lyrica. This was one step that seemed to be missed along the way with all the other medications -probably because it wasn't on the market when I began this struggle. She said that she would refer me to a neurosurgeon to have my occipital nerves removed after eliminating this final drug. So far, it has helped some of the nerve pain associated with c4 and c5, but it has had no effect on my head pain. Many people think I am crazy for being willing to go ahead with a procedure like that but I have been in pain so long that I would do nearly anything. I have worked hard and put myself in a lot of additional pain to try to keep working. I have even completed my master's degree while undergoing this process. Now, I would like to get my life back. I think it would really help to get to know others who have gone through the same thing. Also, has anyone here had the surgery done to remove their occipital nerves? Was there lingering pain? I look forward to getting to know some of you!!!!:hug:

allergic reaction
 

Hi Carebear89,
Sounds like you've tried everything. I'm only just starting and was just about to write my first post when I read about your allergic reaction to steroids. I feel this is what has recently happened to me a few days ago but I have found nothing online about it so far. I'd love to hear more about what symptoms you had with this please. All the best.

Symptoms of an allergic reaction are different in different people. Also, I was experiencing the effects of a spinal cord leak at the same time....this is an important issue to note. Given all of that, the allergic reaction made me feel as though I wanted to jump out of my skin!!! I had burning sensations, vomiting, severe anxiety, an inability to seem to be able to take a breath, and all of this led to extreme dehydration. Because of this, my doctor has decided that I should never risk another steroid injection. If you think this is what happened to you, you should probably follow-up with your doctor. It is also possible that it is something else that the doctor could help you address. I would try to call and get an appointment within the next few days if I were you. Take care!!!!:wink: