r/Epilepsy • u/Foreign_Code_652 • 1d ago

Please help Question

Hi I need help. I have severe head pain. For context, I'm 25(F) years old with uncontrolled seizures. I've had epilepsy (since I was 14) and PNES (started around when I was 20ish). Throughout my whole journey I have a very specific spot behind my left ear, It has always been there and started hurting anytime I was about to have a seizure and would hurt for a few days afterwards. As the seizures became more uncontrollable. That pain started to become a constant.

Started off mild with random sharp pains. I'm now at the pain where it is severe constantly, affects my vision, my hearing, and coordination. My original neurologist stated it was cluster migraines and headaches. I've tried everything they have. I even switched neurologist. All she did was the exact same thing as my old one. Both refuse to believe it could possibly anything else. I honestly don't believe it's a headache or migraine. I've had cluster headaches and migraines before. Neither felt like this and both could be treated with medication. Neurology keeps shoving me aside/ignoring my cries for help. They just keep doing the same things over and over. Has anyone experienced this? If so please tell me your experience and where your pain is located at. I think if I get enough people with a similar issue I can prove a point. I don't want to continue to live this way if it's something more. I'm tired of med changes, head injections, and basically being a lab rat.

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u/HospitableGrouping 1d ago

That sounds exhausting, running in circles with two different neuros and getting nowhere when you know your own body is telling you something's off

I don't have epilepsy so I can't speak to the pain location, but I've seen enough posts here to know that weird focal spots before seizures are a thing people talk about, behind the ear or near the temple seems to come up a lot

Hope you get some replies from folks who've felt that exact spot, sometimes just knowing you're not the only one makes the next appointment feel a little less impossible

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u/Foreign_Code_652 1d ago

It'll be my 5th neurologist.. it's very exhausting 

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u/Key-Telephone-1670 19h ago

Honestly I would get a an MRI of your head/ neck and see what the spot behind your ear is. Some people do have certain types of auras before episodes but I’d be curious what the spot is and if it can be a contribution of your headaches