Undiagnosed yet: Wanting to know if... - Functional Neurol...

Functional Neurological Disorder - FND Hope

5,635 members2,940 posts

Undiagnosed yet

BELAwesome profile image
3 Replies

Wanting to know if anyone has both real seizures and "functional" or non epileptic seizures? I have a video EEG in December. I haven't had a seizure during a day test but as I seem to have it happen during my sleep a lot and not in public, my neurologist asked if I'd be willing to have a few day test. An epilepsy specialist saw me and recommended this test. Waiting is hard. This evening I had a lot of myoclonic jerks. I'm tired now and hopefully I can get some sleep.

Written by
BELAwesome profile image
BELAwesome
To view profiles and participate in discussions please or .
Read more about...
3 Replies

I suffer from various different types of seizures. Used to have 4-6 hour long non-epileptic seizures which have stopped since starting Low Dose Naltrexone. Still get loads of myoclonic jerks, seizures, dissociative episodes etc. I have lots of movement and jerks through the night and rarely get rest/sleep for any amount of time.

I used CBD oil to help ease pain after.

Hope everything goes well with neurologist and today is a better day for you!

BELAwesome profile image
BELAwesome in reply to

Thank you so much. I'm nervous cause I don't know what's what. Could be challenging but I think will be better to know and then be able to know appropriate treatment. I'm nervous if/when I am diagnosed and it's not considered seizure, how they will proceed. As some family hasn't understood it and I'm afraid they will just judge me on mental health. It's not something we do on purpose. Anyways, through having many doctors not know what's going on yet, some have thought it was tics or something or side effect of medication. I've ended up reading about stuff to better understand. Basically my neurologist referred me cause she thought I may be having seizures but also said she didn't think some of what she had seen in video was seizure so I suppose she though it was functional thing. Anyways thanks for taking the time to stop by and read and comment. 😊💖✌🏼

BELAwesome profile image
BELAwesome

Sometimes when reading or something it will feel like I'm going to blank out. I'm not sure if that's the same or also if there's sleep stuff as well cause sometimes I get tired and hard to control my movement.

You may also like...

Undiagnosed Symptoms

get gripped and my ring finger is twitching all day. Could somebody help me?, some ideas of...

Terrified of the dentist now due to seizures

I'm terrified of taking a seizure during treatment and choking as seizures leave me completely...

FND diagnosis, yet Insurance refuses to pay me.

week. What can I do? What can I say to my neurologist? She saw me once, no physical inspection yet,...

Dissociative Non Epileptic Seizures & claiming Disability Living Allowance

condition as our seizures are completely out of the blue. I hope that having had seizures in front...

Lack of disorder knowledge by GP

as that, I have a list of other symptoms, from simple ones like constipation to seizures and...