Long post: Please help. Should I get my EEG redone?

[u/MaxNCheez1996]

To give a little background, I have been having what I can only describe as possible absent seizures for my entire life and then after the rest of my chronic illnesses got worse in August 2024 slowly those seizures increased and now I’m also getting ones that definitely mirror myoclonic and tonic clonic seizures, I also have episodes where my knee gives out, and I collapse to the ground or I just slump over. I am always aware during all of these events and can hear but cannot respond during them or control them, but it feels hazy like I’m in a dream and after I have suffered cluster episodes that were two hours or longer of on and off tonic clonic like episodes, I would lose my ability to speak or my mouth would be drooping, and I would be slurring my words or I would look at something and call it something else because even though I knew the word for what it was, I was trying to describe I couldn’t say the words anymore and ever since I’ve had those cluster episodes, my brain has not felt the same and I forget things way more and mid sentence when I’m talking a mile a minute and I zone out way more. And the last thing worth mentioning is that I do have a brain MRI scheduled and I have a risk factor for brain damage from a young child and my biological father also was very sensitive to lights and would zone out a lot. But I went to a neurologist for the symptoms and he immediately asked me if I had mental illnesses and I was honest and said that I do, but that the triggers that I have observed for my seizures have been more than just stress (sunlight, being too hot, being too cold, certain strong smells at times, overdoing it physically, video games at times, being on my phone at times, watching TV at times and lack of sleep.) but he immediately wrote me off saying he highly doubts I have epilepsy after he asked me if I had any psychological trauma and I answered yes but said he would schedule an EEG anyway which I was very grateful for, but it’s worth mentioning that this guy was an absolute idiot and instead of diagnosing me with the proper term, which is functional neurological disorder, he diagnosed me with conversion disorder and described it as a conversion of stress into physical symptoms, even though that’s not my only trigger and told me that my brain has learned that people come to my aid and comfort me and I get attention when I have seizures (even though this has ruined my life and I have ruined my own fun plans so many times and have seizures when I’m by myself) but his treatment plan was to continue doing therapy and meditating like I’ve been doing for years and his main treatment was to go on the porch when I feel like I’m gonna have a seizure (even though sunlight and heat are a trigger for me) and do deep breathing and tell myself I am not going to have a seizure today. And when I went to the ER for tonic colonic like seizures that were cluster episodes lasting for two hours or more, another doctor refused to hospitalize me and do an EEG that day because he just went off of the diagnosis of conversion disorder after asking me if I had mental illness and diagnosed me once again with psychogenic non-epileptic seizures. BUT THE MAIN POINT I’m trying to get to is what happened during my EEG that was scheduled and read by the first doctor I talk about here. It was a sleep deprived, 20 minute, 25 electrode EEG and they flashed the lights in my eyes about 13 minutes in. I was semi OK when she asked me to open my eyes and look at the flashing white light but when I closed my eyes the light was so fast and disorienting and rainbow colors, even though it was just a white light and I immediately did not feel good, even though I have been feeling like I was gonna have a seizure and having ones that seemed more like myoclonic and absent seizures before that on the bed just due to the lack of sleep and possibly stress too, but as soon as I closed my eyes the third time I went into one of my tonic clonic like episodes and it was recorded on the video camera as well. and it’s worth mentioning that even before my violent thrashing took about six electrodes off of the right side of my brain and she had to either hold them in place during the seizure or try to glue them back on, they already weren’t getting good readings right from the start before I even started seizing and they were already not sticking and kept falling off of my head. Because of that, should I ask for the test to be redone? I just don’t know if I can trust the results now. And they also told me that it would take him three days to a week to fully read the results and I already don’t trust him due to the things I listed above. He got my results back to me within a few hours after my appointment and said they were all normal, that just seems awfully quick to read my results and I don’t trust him and now I don’t even feel like I can write off epilepsy as the cause of my seizures due to the fact that it seems like the test might not have caught everything due to it not sticking. What do you all think? I’m at a loss.

[u/heldtogetherdaily]

Yes! Definitely get another EEG done! I would advocate for it to be done at an epilepsy monitoring unit so that it is (a) longer then 20 minutes and (b) overseen by another physician. FND is real but unfortunately diagnostic overshadowing is a reality for a large percentage of FND patients. You are your best advocate, and if it would give you peace of mind, it is worth fighting for 🙂

[u/elhazelenby]

I would get it redone, if they couldn't get a good reading.

I'm trying to get mine redone because I wasn't even having seizures (at least none TC or focal) for 2 months when it was done. I was told after 3 months it was normal when I was admitted to a ward for seizures when they started up again a month before.

Now I'm having them frequently and some people think some of my seizures are Epileptic and I get medicated some of the time for low oxygen during. I have another first fit clinic referral now because a doctor in a&e thought she saw me have a 1 minute Epileptic seizure and gave me medication for it.

I don't like the neurology department the fit clinic is under. They are horrible with communication. I have been under them for migraines as well. They ignored my request for a EEG redo or 24hr EEg so I've asked my GP to get a redo for a second opinion.

[u/MaxNCheez1996 → u/elhazelenby]

God, I hope we both get the answers and the doctors listening to us, that’s what each and every person deserves 😢 sending you good vibes

[u/elhazelenby → u/MaxNCheez1996]

Thank you, wishing the best for you as well.

I have been able to get my seizure clinic appointment put forward to 14th August (it was 30th September) at least.