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I'll be honest. I haven't been on here in a while because I felt like people were quick to question or compare rather than support. I get that everyone is struggling with something, but sometimes it's nice just to be listened to and validated.
I started having these strange, unpredictable episodes where if I'm exposed to a sudden light, especially a colored light in a dark room, my knees collapse and I often get a piercing pain in the back of my head. After extensive tests my epileptologist said… read more
@A MyEpilepsyTeam Member, this is helpful. Thank you for the response and encouragement. I appreciate it.
@A MyEpilepsyTeam Member
Yes I hear you about hemiplegic migraines . They are debilitating. Mine is subsiding finally after a few days. Still shot . Take care .
I had brain surgery on the left side of my head to remove the left temporal lobe in 1995. Shortly after the surgery took place I began having severe migraines taking place along the curve of the sutures, the temple, including the area closest to my ear. I've been working with a pain management specialist since 1998 because these are very difficult to manage. We discovered right away Botox was able to drop the number from 28 a month down to 15 a month.
We chose Emgality after all the trials did not work. Thankfully the combination of Botox and Emgality are showing much progress as the migraines are lowering in number which is very positive. I have been using Ubrelvy since 2024 and have noticed the emergency medicine is slowly decreasing.
I keep a log on migraine activity so it can be of help when tracking the changes. I hope you get the feeling better soon!
Kristina, I hear you and I can relate to what you’re saying. A migraine I always saw as an aura to the TCs I’ve experienced. I now know the migraine itself is a seizure. Whenever I hear or I know of someone who is experiencing migraines I always tell them to be careful and to take them seriously. I believe that because it’s a neurological condition that still the true diagnosis of it all is limited. I’m grateful for the progress that has been made but I know there is so much more that we need to understand. I mean we’re talking about what affects our brain! So yes! What you’re experiencing is real!
My saving grace when it comes to my neurologist is that they don’t know sometimes. They are practicing medicine. They are trying to figure this all out for us. Please don’t forget that.
Praying that you get the answers that you need.
I know about migraines, and tha they can somehow be related to Epilepsy. Fortunately have not had one.
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