Hey hun,
We have seen oatients in clinic with confirmed pseudo-seizures have seizures during REM sleep (your bodies still semi conscious) so I don’t think that would be a diagnostic factor to epilepsy BUT it is also very possible to have both as you outlined. I can semi-understand where they have determined the diagnosis. They “sound” non epileptic and they haven’t had definitive evidence, other then fast waves which I’m guessing did not show epileptiform activity.
It’s more specific “psychotherapy treatment for non epileptic seizures then usual psychotherapy and can be supported with the use of some anxiety medication which I’m guessing may have already been trialled due to your MDD. Cognitive behavioural therapy can be helpful too.

If this is the avenue they are choosing to look down, it will be best to be referred to neuropsychiatry, specialists in the field. Dependant on your location, this may be quicker as a referral from your mental health team then your neurologist (due to how the care systems work and communication within the care systems). If you feel you may have both, suggest this to your neurologist prior to moving over to neuropsych and explain in detail why you feel this way. They should be open to either that this may be a possibility or explaining why they feel it’s a mono diagnosis of non epileptic seizures.

I do, from a personal perspective, think it was strange my neurologist wrote on my care notes “her complex mental health notwithstanding, these seizures are epileptic in nature”. I have bipolar and did query what that had to do with anything at the time (this was while I was in school). But he did say non epileptic attacks can correlate with mental health difficulties and the bodies inability to cope with stress.

Doctors tend to like proof a lot haha.

Hope this helps :) if you need anything, you know where to find me :)

Hi,

I have bipolar disorder and PTSD, I do not have a non epileptic attack diagnosis but also work in mental health alongside the neuro psychiatry services so hoping I can shed some light.
Neuro specialists look for abnormalities in scans during seizures, as they have captured a seizure on video eeg I am assuming that there was no epileptiform activities during the seizures meaning that it is unlikely to br epilepsy causing your seizures.
I think, what would be beneficial, is for you to be referred to neuropsychiatry for an assessment as psychiatry are aware of NEAD/PNES but are not specialists in the field so their knowledge is limited.

I am also assuming that, as you have awareness and limited control during the seizures, that that could be another reason why a diagnosis of non epileptic attacks has been given.

I understand that you feel that some seizures are different to others which could make the diagnostic process a little complex however, the process involves ruling out epilepsy and as all tests have come back clear; that would be the presumed outcome.

There is specialist CBT, DBT and psychotherapy available which is specific to the disorder that may be more beneficial but it is available through the neuropsychiatric team. Perhaps speak to your psychiatrist about a referral?

I’m sorry that you feel that your diagnosis is based on your complex mental health history but perhaps explore the idea as the challenging thing about non epileptic attacks is that the process of acceptance is part of the recovery process so if (and that’s a big if) it is non epileptic attack disorder, unfortunately it’s a waiting game and trial and error of treatments.

I hope you feel better and this is somewhat helpful. If you have any questions, I will try and answer them for you. Take care.

There is a stress related type of seizure which sounds like what you have there. I have them and somehow have to avoid stress in this mad world lol anyway, maybe the psych can help with something - meds or not - to help you with stress. Night time seizures can also come down to what your bedding is made from, what you sleep in, temperature, how often you pee at night and top up on water.. there's many seizures and extra things for women yay lol check out PMDD premenstrual dystopia disorder 🙄 fun. I wish you all the best x

Ah brilliant, glad you have had the opportunity to experience C and DBT. I strongly recommend that therapy to anyone, not just individuals with mental health difficulties.

Lamotrigine is an anticonvulsant as well as a mood stabiliser so I would have thought that that would be an effective drug of choice both mood wise and seizure wise. If it had helped improve symptoms, I’m guessing that would support the E diagnosis partially (although not everyone finds the right medication straight away, I’m just thinking out loud).

I’m unsure of your history or exactly why they’re ruling out epilepsy (if they have done) but NES is quite complex diagnosis, sometimes everything can be going smooth and you have a seizure, a bit like a delayed reaction. The only definitive proof of epilepsy/nes they can get is by performing a veeg, capturing a seizure and if any abnormal activity is recorded at this time. If the seizure is happening too deep for the electrodes to pick up, it will certainly pick up the tail end of the seizure which will determine further testing. Is there any way you could discuss this with your team to explore a possible epilepsy diagnosis/explain why these or non epileptic. X

I have done CBT and DBT and continue to use these strategies every day. When the seizures started I had been stable for 7 months and the best I have been for at least 10 years and then they just started out of nowhere with no triggers at all. I’m not in a depressive state at the moment and I’m currently taking tranylcypromine (parnate) quetiapine (seroquel) lorazepam and just started lamotragine, but being quite drug resistant it’s hard to get the right combinations, and working out whether the drugs aren’t working or if it’s something else that’s not working