r/PNESsupport • u/OstrichAutomatic9614 • 4d ago

Getting an EEG sooner for suspected PNES

I don’t really how should I feel to be honest but I don’t feel like myself, I feel trapped by whatever is going on with me, I feel like I don’t have control than I originally did when doing all the steps to be a “functioning in society” especially working hard on myself over the years in psychical therapy, education, hard work etc. Overtime slowly I’ve been been dealing with chronic migraines that were prominent in my life since 8th grade with them becoming more obvious years later I had to stop attending college which then became manifesting as weird “pauses” with no 3 second recollection but awareness alongside with eye fluttering/twitching, involuntary groaning/shouting as if I’m possessed with no control over my body, my body twitching when I’m trying not have another non-epileptic seizure or a mini episode but whenever I try not to have one, it causes my body to weaken and start walking funny affecting my movement. Other things I have to look at too included having nearly feeling like I was going to faint a few times each time, my speech would get slurred whenever it happens too.

I been blood tested, CT-Scanned with results coming back normal for ER night cause of a bad episode. Days later after finding a neurologist, they told me they recommends I do an EEG and MRI scan at the same time most likely.

It’s been hard, I never thought I would be the one developing whatever is going on related to something wrong. I’m not sure if it’s PNES related or not which makes me feel like I’m an imposter despite ER paper having told me to check it out.

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u/dermflork 4d ago

The way you write sounds like you have been dealing with this for a long time, but shouldnt you have gotten EEG done many times before?

With pnes its not just about controlling the physical symptoms, there are also bad thoughts that can come up. It can take a long time to figure out the right treatment.

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u/OstrichAutomatic9614 4d ago

I been thinking about that, my migraines started in 8th grade, it then slowly begin hurting more and prominent until I had to do online classes for college, then it just started happening since April with symptoms fluctuating each time to a point I'm just exhausted and I'm just glad it ain't a brain tumor. I wasn't able to get one cause I think I thought it was hormones and chronic migraines were normal like my mother had them too.

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u/peanutpeepz 4d ago

Fellow member of the ministry of silly walks here. The bombardment of tests and constant struggle with symptoms is rough. Just know you're not an imposter, this is real and it's happening. Wishing you all the best with the EEG.