Post ictal psychosis

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Sfahner

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Ok, so I kind of like to take this opportunity to introduce myself, as I am new here. I started having myoclonic jerks when I was sixteen years old. I thought nothing of them at the time, as I had no diagnosis, and had never had a tonic clonic seizure. I blamed it on being tired or partying too much. As a particularly rebellious teenager, I experimented with quite a few drugs around that time. I developed an addiction, and decided to get clean. I had been sober for more than six months. I was staying with my grandparents one night, as I often did. I was up stairs watching a movie when I had my first tonic clonic seizure. My grandfather said he heard a crash, and ran upstairs to check on me. He found me convulsing on the floor, and waited until the seizure was over. He tried to rouse me, I came to for just a second and saw the fear in his eyes. My vision immediately failed me, and I was plunged into darkness. I cried out to him and thought I was communicating, only to find out later I was babbling. I was rushed to the small hospital in my town, and they pumped my stomach, told my mom I was probably on drugs, and completely wrote me off... Because three hours after my seizure, I was not regaining consciousness. My drug screen came back clear and after a couple days of being unconscious in the hospital I was sent home. It took me about two weeks to feel normal again. My second seizure happened a month later at my father's house a town over from where I was living. I was again rushed to the ER, to a different hospital. The doctors there suggested that I was an attention seeker, and told my mom I should be put in the psych ward. My mom was so angry, she demanded that I be transferred to MUSC, a very large hospital in my area with an excellent neurology department. Once I regained consciousness, I met with the doctor and we talked about my symptoms. His immediate diagnosis was post ictal psychosis. We were so relieved to finally have an EEG done and have some answers! However, my own research about PP has me thinking that it's not an accurate diagnosis. I am in a practical coma for days after my seizures, unable to eat, and in adult diapers. I am never combative, violent, or overly emotional when I regain consciousness, only confused and upset at the realization of what happened to me. It takes me weeks to feel normal again... I also have extremely impaired cognitive function, some of which has proven to be permanent. I'm just wondering if any of you have experienced this, or a misdiagnosis of PP. I am currently 3 years without a tonic clonic seizure, but still have abscence seizures fom time to time. I crave information, and it's extremely frustrating not knowing what really happened to me. I would like to also add that I have a 12 year old sister wih the same kind of epilepsy as me, who comes out of her seizures almost immediately. Also, would like to mention that I've had emts says they've never seen anything like my seizures. If it matters at all :) thanks for any advice!
 
Sfahner

Welcome to CWE first. The thing about epilepsy is it effects all of us differently, I have never heard of two people having the same seizure, now I stand to be corrected, a lot of the symptoms can be the same. There could be something else going on as well or it is just a seizure but when your not happy cheek it out further until you are, say it to you neurologist and doctor. I do not feel normal after a seizure either for a day or two, others it can be a week or two. Just because the EMTs say they never seen anything like it before, I would not pass a whole lot of notice on that, most medical people regardless of there job do not know a seizure except for what they hear or see some where and that is usually a grand mal or tonic clonic. I think you should investigate further and tell your doctors, do not stop until you are happy.
 
Well the most concerning thing was always the two-four day unconscious period. Thanks do much for your reply :)
 
Sfahner,

Welcome to CWE ;)

What did your EEG show? Have you had MRI?

Something is up and I would not settle without getting some real answers, as fedup said, because all are so unique all seizures are different and yours sound very heavy going :(

Like you my Sons showed up around 16, but if we look back we seen partials earlier only we did not know...had his 1st T/C at 23, out of nowhere.....he has seizure activity visible on EEG......

dont go back to palce where they said u faking it, only in emergency, becasue IMO they are useless, utterly and u deserve better, good for you Mother, respect!
 
Hi Sfahner --

I moved this thread to "The Foyer", so folks could see and welcome you. Welcome!
The post-ictal recovery period does sound unusual, but as Fedup says, all of us seem to have variations in our seizure history and symptoms. There is something called "Todd's paralysis" which describes post-seizure weakness and confusion that can last up to three days. Have you had an MRi done in addition to the EEG? It might reveal if there are structural (vascular) issues that are contributing to your seizures and the slow recovery time.

It's great that your seizures are mostly-controlled right now. Some folks have found success treating absence seizures with the Modified Atkins Diet -- I don't know if that's an option for you, but you can read more about it here: http://www.hopkinsmedicine.org/news...ins_Diet_Can_Cut_Epileptic_Seizures_in_Adults

Best,
Nakamova
 
Hi there.
I'm very sorry to hear about how long it took to diagnose you, but glad that you finally got an answer.
To hear that your sister wakes up immediately is also interesting. As when my fiance has his pschyogenic seizures he wakes up straight away and is practically fine again straight away. But when he has epileptic seizures he is groggy and normally sleeps for a while. Its very nice to hear that your seizures a well controlled and hope everything is well.
 
Welcome to CWE, Sfahner! So glad you found this gem on the web! My 15 year old daughter is also diagnosed with JME. We do not have a family history so it is confusing to us regarding the why and how. I am sorry to hear your postictal state and recovery takes a long time but happy to hear you ahve gone 3 years seizure free. Out of curiosity. does that seizure free period also include myoclonic seizures? I see that you do have the occasional abscence. My daughter has yet to have a tonic clonic seizure so I am not sure about the after effects she may or may not have.
 
I have actually had both MRIs and CAT scans done, both were inconclusive. They couldn't find anything wrong with my brain until the sleep deprived EEG. And actually nakamova, I am a little restricted in my diet, because I also have thyroid disease and Crohn's :/ so I will certainly look into it, I just may have restrictions when it comes to meat and dairy. And to chop, I was told that myoclonuc epilepsy is almost exclusively hereditary. The funny thing is, the ONLY epileptic person in my family other than me and my sister, is my great uncle. So it could be someone you don't even know about! Before my seizures were completely under control, I had the jerks occasionally when I did something that really challenged me. Like a rubiks cube, for example. It doesn't happen anymore, although I have an obscene amount of muscle twitches before I go to bed lol. But they're not seizure-y jerks, you know? Its a little different. Thank you all for the welcome :)
 
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