Hi, around a year after I was ill (2013) I started to get electric shock type pains on the right hand side of my face. I was sent to another neurologist and diagnosed trigeminal neuralgia, which I had for around a year (joy!). I wondered if anyone else has suffered with trigeminal neuralgia after ADEM. I’ve never really spoken to anyone about my illness in the last eight years as no one can relate and now I’ve found you guys I’ve feel like I’ve got so many questions!
Where did ADEM attack? Ex. Where in your spine or was it your brain? I do not have trigeminal, but my husband has it, so I am familiar. It is horrible. I have migraines and I know that pain.
Hi Lynn, I don’t know because I didn’t have a scan until several months after and so nothing showed up. It may not be related but it’s something I’ve wondered about.
Reason I asked, mine was at C2-C4 (cervical spine) affecting the upper extremities. If it affected the lower spine, that would tend to affect the lower extremities. Since trigeminal is the face, I would suspect your upper spine (cervical) may have been affected. You may never know for sure.
No, I know that’s what’s a bit frustrating. When I saw the neurologist he said it was very likely ADEM but when I had the scan, which was another six weeks later the scan was clear so my diagnosis is ADEM unspecified. I’ve actually requested a copy of my scan and the notes from the hospital.
Hi Kate. I have had ADEM 2 times( Diagnosed with relapsing ADEM). The first time it was on my left side of my brain and paralyzed me on my right side. It also affected my speech and ability to decipher left from right and ability to recall numbers. During recovery from that I would definitely feel the electric shocks. I just told myself that it was my body coming back to life and healing. It didn’t last forever if that helps. About three years after that episode My doctor told me that I was probably as healed as I was going to be and whenever was left would be considered scar tissue. For me, that just is a sensory issue in my right arm. I use my right arm all of the time and I have muscle tone and so forth. The only lingering effect is a little bit of fuzziness in how the arm feels when it touches something. I still have not felt that electric shock after recovering . I have had ADEM again since but this time affected a different part of my brain and I haven’t felt the shocks. I wish for the best for you just like everyone else on this board. But I can definitely relate to your experience and I feel like it just needs some time for your brain to heal and recover.
Gosh I’m so sorry for what you’ve been through that must have been really hard. The shocks for me started about a year after so I wasn’t sure if it was related to my illness but seems likely I would have thought. It’s so nice to have somewhere to ask these questions, thank you so much for responding and sharing your experience