Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Is it normal to experience post-ictal symptoms for 10 days or more after a first grand mal seizure?
Wed, 11/22/2017 - 22:24Topic: Share Your Story
I'm 25 and had my first ever grand mal/tonic clonic seizure on November 12th. I spent 3 days in the hospital because the seizure itself lasted for over 5 minutes - though I have no recollection of any of it (I'm just really really sore!). The neurologist there put me on oxcarbazepine which I have been taking twice a day. For the last 10 days and counting, I have been experiencing what seems to be "postictal" state symtoms. The best way I can describe this is that I feel like I am in a constant state of fogginess: I don't really feel like "myself", kind of like I'm in an out of body experience where when I try to think back and remember things from before my seizure, Its like I am remembering someone else's memories. I have trouble focusing on projects and have short term memory deficits (I can't seem to hold onto information for more than a second), and when I talk, its like I make no sense. Basically, I just feel really "off". I have also had trouble sleeping and it seems like every time I do actually fall asleep, I wake up due to very disturbing dream images. Any time I focus too much on how weird I feel, I start to feel very depressed and anxious, and highly emotional - I don't think there has been a day since my seizure where I haven't cried at least 5 times. I am wondering if it is normal to still feel the postictal symtoms 10 days later, or if it could be a side effect of the meds. I also feel very dizzy, but this comes and goes - the rest of my symptoms have been pretty consistent and haven't seemed to improve since I've returned home from the hospital. I asked my PCP about it because I am still waiting to be scheduled to see a neurologist, and he seemed to think it was normal to feel ike this for this long, but I haven't found any articles or information on line stating a 10 or more day postictal state is normal (I dont have any psychosis symtoms). Can anyone relate or offer any suggestions/advice? This is all very new to me and I am just trying to see if this is normal and if it will ever go away!
Comments
I think it varies on many
Submitted by julesgian on Fri, 2017-11-24 - 16:42
I think it varies on many factors. I’ve had epilepsy for over 40 years. Sometimes it would take me a solid week. They compare it to participation in a long marathon depending on duration and intensity. It’s also psychologically traumatic which can compound things. I have 3 ways of life that have decreased recovery time. A VNS implant. I lift weights and workout, and I eat as close to a ketogenic diet as possible. Being physically in good shape will help. However, some time to get rested is needed, just don’t let it keep you there. Push yourself to go for a short walk . It might perk you up! If you’re on new meds that can be contributing too but the longer you stay down...the harder it is to get up and that can land you in a very, very unpleasant place. If you have been formerly diagnosed with epilepsy there will be adaptations to your life, but life does go on. Focus on the positive..many have epilepsy but no access to healthcare and there are ones who endure much more and many are young children. I won’t lie, you have to work to make it better and talk to your doctors too. Best Regards
By the way, my last seizure
Submitted by julesgian on Fri, 2017-11-24 - 16:42
By the way, my last seizure was the day before Thanksgiving..and my birthday is next week but I’ve learned to give myself periods of rest and stilll could help out!
I think it varies on many
Submitted by julesgian on Fri, 2017-11-24 - 16:39
I think it varies on many factors. I’ve had epilepsy for over 40 years. Sometimes it would take me a solid week. They compare it to participation in a long marathon depending on duration and intensity. It’s also psychologically traumatic which can compound things. I have 3 ways of life that have decreased recovery time. A VNS implant. I lift weights and workout, and I eat as close to a ketogenic diet as possible. Being physically in good shape will help. However, some time to get rested is needed, just don’t let it keep you there. Push yourself to go for a short walk . It might perk you up! If you’re on new meds that can be contributing too but the longer you stay down...the harder it is to get up and that can land you in a very, very unpleasant place. If you have been formerly diagnosed with epilepsy there will be adaptations to your life, but life does go on. Focus on the positive..many have epilepsy but no access to healthcare and there are ones who endure much more and many are young children. I won’t lie, you have to work to make it better and talk to your doctors too. Best Regards