Epilepsy Research UK
1,821 members533 posts

Undiagnosed since 2014 - new here!.. maybe

Hey guys,

So I've written before in the ehlers-danlos community, and to be honest for the past few months I've been trying to ignore my brain. However, these past few days my comprehension is horrendous, I'm constantly feeling like I'm forgetting something, and I just feel the complete brain fog works. Basically I started getting memory loss in 2014. It was accompanied with a tension headache that lasted pretty much until July 2015. In June 2015, I finally went to see a neurologist who did an EEG and it turned out it wasn't normal. They did an MRI and a PET scan, and came to the conclusion that I had epilepsy. I've never had any seizures or seizure like symptoms, just (lol as if that isn't enough) memory loss, losing my words, loss of time perception which three years later also now includes loss of comprehension, problem solving issues.

Anyways after pumping me with anti epileptics for about 8 months, they decided to do more tests and really couldn't determine if it was really epilepsy. They thought it could perhaps be autoimmune encephalitis. I got treated but it wasn't that. So the treatment didn't work.

Then the hospital neuro was like okay well you have shitty memory deal with it bye.

I was obviously not happy with that because what is going feels wrong, and the unknown really sucks. Its been three years now that I don't really feel like me.

I went on to get diagnosed with Ehlers Danlos Type 3 but they said it was unlikely to have any correlation with my brain symptoms/eeg. I may also have hypothyroidism but that isn't for sure. The doctor has given me some medication for that to see if it helps. Nothing so far. I have also been put on anti-depressants for my anxiety which has helped me a lot from obsessively googling my symptoms. I have to admit I am a lot more chilled and my tension headaches are so much better but the rest of the symptoms are the same.

Anyways, I think I keep writing on these forums in the hope that somehow just goes "omg me too!". I saw one post in a random forum once that was completely me, and then I realized it had been written in 2006.... obviously they never replied...

So the epilepsy diagnosis isn't really off the table.. they kind of call it an epileptiform syndrome now...

anyone remotely in the same boat out there?

Wishing everyone luck,


2 Replies

May I ask how old you are?


I'm 25


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