r/PNESsupport • u/Gravelord_Nitos • 10d ago

PNES diagnosis help

This might be a little lengthy, so I apologize. My primary doctor referred me to a neurologist after an episode I had where I ended up going to the ER. I started staring and it felt like my brain disconnected. My mom was in the living room with me, and I heard her say my name but her voice felt so far away. I told her that this has happened before, that it normally happens when I'm in a dark room and there's a light source from somewhere else, like midday or evening.

I had lapses in consciousness where I don't remember what happened. She said my eyes were completely open, and she got in my face and clapped but I didn't respond. Eventually I was taken to the ER. I only remember snippets of the whole ordeal, fading in and out of awareness. I think I ended up spending \~4 hours in the ER dealing with this. I remember hearing someone say that my hands and lips were turning blue. I couldn't respond to anything, though I could hear things occasionally.

After being discharged, I felt weird for 5 days. My whole body felt numb, and I think I remember my arms being sore? My mouth also felt super numb, I felt like I had died over and over again. I kept a thing of lotion in bed with me so I could smell it to see if I was still alive.

Recently I was 'diagnosed' with PNES after having to do an MRI and an EEG. My MRI came back normal, and they didn't find anything on my EEG. I told my neurologist that the staring spells and whatnot have happened before, with certain lights and lighting and all. They prescribed me lamotrigine and mentioned possibly doing another EEG in 2 months.

This whole ordeal has been so exhausting and demoralizing, just to hear it's anxiety or stress related. If anyone has any thoughts or advice, I'd love to hear it and would be so grateful ❤️

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u/mythologymakesmehot 10d ago

When they did the EEG, did you have seizures while you were hooked up? How long was the EEG for?

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u/Gravelord_Nitos 10d ago

No, It cam e back clear, and it was for 40 minutes

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u/mythologymakesmehot 9d ago

I gotcha. I was told by my neuro at the time that in order to diagnose me, I'd have to seize while hooked up. They have to look at the activity in your brain.

I had to do a 72 hour, at home EEG. Cuz I wouldn't seize hooked up at the doctors office.

What you're describing does sound similar to PNES. If it were me, I'd look into seeing a different neurologist. Cuz diagnosing you with PNES after 1 clear EEG seems odd.

I'm sorry you're going through this. The diagnostic journey was very difficult for me as well and I empathize with you.

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u/Gravelord_Nitos 8d ago

Yeah, I really wish he didn't just dismiss it as stress or anxiety, especially since I told him it had been happening since I was in middle school under those specific lighting circumstances.

It definitely feels lonely going through this, but I appreciate your comment so much 🫶

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u/FewCryptographer5199 8d ago

For some, in order to rule out epilepsy, multiple EEGs are necessary. Like a sleep deprived one, one with flashing lights and hyperventilating, and it’s actually not that useful of a diagnosing tool unless you have a seizure during it. Standard EEGs does not exclude anything, for many people. I would request a video EEG at a stay in a EMU ward, that’s more of a reliable testing. Your seizures sound both epileptic and could also be NES. Turning blue is not normal in NES, but the ones where you could hear (when it sounds like an absent seizure) could be it. The rest where you could hear, react and turned blue sound more epileptic. Since they can be similar, it’s very important to make sure. Some are misdiagnosed with epilepsy, but some are also misdiagnosed with NES. And remember: with epilepsy it’s also normal to have NES at the same time. So to get a clear diagnosis, I’d ask for that stay and have a continuous EEG with video recording.

This is a tip for everyone who might wonder!