Post-Ictal psychosis

Meetz1064

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I have

post-ictal confusion, not psychosis---at least that I know of. I will go a-wandering, and if no one's around, I'll completely strip, :eek: :oops: :dontknow: and even go outside that way. NO JOKE.

I do get pissed off after a seizure, and cry. Mainly because I'm mad that I've had it........but it takes me a while to realize what happened, because my brain can't quite put things together. Once it does, I'm really not the nicest person to be around. :paperbag:
 

Mike

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I have the confision too,wandering around and wanting to get outside to escape from what Im not sure. The fear is intence!
 

Deb12345

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Night time seizures

Hello again,
How do you know if you've had a night time seizure? Last night I think I had a mini one but not sure. What do you think? :ponder: If the answer is yes what type of seizure do you think it was? At 12:45am I woke up very slowly, in a complete daze staring blankly at my teds and having rapid thoughts rushing through my head as though still in a dream state (couldn’t think anything). When I fully woke up my vision and hearing wasn't great and my head was spinning (but no migraine). My Mom said she checked up on me at 2:00am and I looked as though I was restless sleeping. I don't normally move whilst sleeping. Also I lost a lot of hair which is worrying.
I did a similar thing the other night. I woke up in a daze and heard someone downstairs and thought it was a burglar, panicked, shot out of bed and stood in the landing for ages not moving or being able to think. When I was eventually able to think I thought hold on a sec it’s only my mom downstairs (she goes to bed quite late). On a normal night I just know it’s my mom still up, but for some reason this particular night I couldn’t think the logic. Any suggestions? Thank you in advance. :rose:
I recall in the past I’ve probably had many occasions like these.
 

horsehead

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This again sounds like a panic attack to me or what I was told was one.When it happens to me I think of something very simple like saying abc or counting 1-10 slowly over and over in my head so I can focus on something.sometimes it will work enough to calm me down so I can go to sleep and othertimes not. I have also sat in a tub with a little warm water or layed next to a door or window to get more air. If all that doesn't work I'll ask my husband to watch me and hold me if he has to if I get to confused or scared.
 

Mike

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Ill say it again, EEG Nerofeedback! The L.E.Ns Nerofeedback system helped me so much! The way that I know that Ive seized is the headach I wake up with. Theres no other headach like this one. It happens in my left temprol, frontal lobes. Everytime!
 

Deb12345

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Mike wrote: “I’ll say it again, EEG Nerofeedback!”

Hello again Mike, yep will ask my Neurologist next time (about 6 weeks time my appointment) about my 3 EEG scans. I know I said earlier on in this thread that the Neurologist said they were fine but what he actually said was “he had results” and didn't actually tell me anything about them, so just assumed they were ok, like my MRI scan results were. He told me that the MRI scan was ok, but said nothing about the EEG scan results. :)

horsehead wrote: “This again sounds like a panic attack to me”.

Hello, yep I agree that the first attack I had regarding the burglar may have been a panic attack but last night felt very different / strange. I agree with Mike regarding yourself. Try and get to see a Neurologist and get a MRI and EEG scan done. If your doctor doesn’t take you seriously demand to see one. My doctor didn’t take me seriously to start off with and told me I was just suffering from depression and anxiety attacks but when I actually saw the top Neurologist at the hospital, my doctor has completely changed her way towards me and now knows I am suffering from epilepsy too. I hope this helps. Take care. :p
 

Mike

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The first thing to do is see a Epiologest someone who specializes in epilepsy. Your in control, learn everything you can about your problem. Its alot of work but well worth it when you find what works for you. It should be the most important thing to you... freedom...no restrictions....SEIZUREFREEDOM! Im a believer, I believe its out there for us all we just have to find it! Sometimes we just have to look up!
 

droolmonster

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nirvana

I had post-ictal psychosis for the first time and I've had epilepsy for years. I was very scared at first but then I thought I could make it a good trip--people who have done acid always tell me I look tripped out. I then thought I had nirvana. That was fun. The only problem was I was sure I was dosed.
 

KelVarQ

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Here's what I've learned: When I was first diagnosed with E I had 6 or so MRI's and EEG's but nothing ever showed up. After years and a doctor actually asking me since the above tests never showed anything, "Are you sure you're having seizures?" when I was in his office with my arm in a sling after having surgery for a dislocated shoulder due to a gran mal seizure. I left his office and went to Columbia Presbyterian in Manhattan. 1st thing they wanted to do was an MRI and I was annoyed since they never showed anything and the neuro said, "No worries, we'll find it because we have the best equipment along with the best doctors." Long story short they found it and I had E surgery 6 months later. Unfortunately I just started seizing again after 4 years, but thankfully they're small. So my point is perhaps if you're going to a smaller type hospital you may consider switching to a larger facility that has top notch equipment. Columbia has a whole wing for Epilepsy. Also, I've lost a lot of memories due to E especially during the years prior to surgery when they were really bad. After surgery I went through a lot of what you're explaining Post-Ictal psychosis. Perhaps Temporal Lobe stuff, but they called it "Disassociation" and gave me Klonopin to help keep me in reality and it did in fact work and slowly but surely I started to per se' recognize my husband. For me everything seemed so surreal and I would just look around and wonder, "What is this thing we call life?" I would look at my husband and say, "Well, he seems like a nice guy" since I just couldn't connect on any level with him or anything, except for my mother. Thankfully I never lost the connection with her. Klonopin did work for that. I don't know if it's the same and perhaps it's not, but it does sound similar. My mother use to say my mood swings were really bad since I could be happy one moment and sad the next. I also didn't speak for a good month, which is definitely not like me but I don't have much memory of all that. GOOD LUCK AND BE WELL!
 

KelVarQ

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Also, after a gran mal seizure (or TC) I would have no memory for sometimes hours and afterwards I would wander around and have no clue. That's actually how I dislocated my shoulder and I have no clue how I did it, but I found myself sitting on top of my desk in my home office with my whole office looking like a tornado went through it. Clueless? However, I don't think that's abnormal after a gran mal seizure: to wonder around and do weird stuff and have no memory of it. Afterwards I would sleep for sometimes 24 hours. There were also times when I didn't have a gran mal or any seizure that I was aware of and lost a good 8 hours. Meaning finding myself somewhere and having no clue how I got there because my last memory was at 10am and I was at work and now it's 6pm and I'm home and having no clue. This was sometimes followed with a panic attack. Sometimes I think we're diagnosed with panic attacks simply because how can one not get one after certain episodes and being clueless. Clearly some episodes warrant a panic attack, but one doesn't necessarily have panic attacks but it's due to the severity of some things that transpire with the E.
 

Mike

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Nerofeedback

Nerofeedback would be my answer to almost question about Epilepsy. It works, it stoped me from seizing at least once a month when nothing else has. After 6 months of treatments it stoped! Do yourself a favor and try it. What could it hurt to try?
 
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My Sympathies

I am so sorry you have to deal with postictal psychosis. My husband just experienced his first bout of this at 30 years old. He's pretty consistent with the people who tend to get it:

- older (at least 30)
- lacking real control (intractable or medication resistant)
- generally has tonic clonics.

My husband has never had good control, but he never has had more than 1 in a 24 hour period. One night he had 3 in a 10 hour period. Never really got a chance to recover an I took him to the ER where they gave him ativan. Stayed there overnight and seemed okay, just a little spacy.

Got home, but he couldn't sleep (read that the first major sign after the cluster seizure leading to PP is insomnia). Then, he started having non-epileptic seizures... and he ended up in the psychiatric unit for 2 weeks while they tried to figure out what was going on. It's like no psychiatrist there heard of this and I gave them a total case history at his admittance.

We didn't hear of this term until he was in therapy after ward, and it was a resident student that told us that's what he had.

It's incredibly scary, and not well known.
 

petero

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I'm quite certain I've had a period of PP after waking up in what I can only say was perhaps literally "mind-blowing" pain.
I was taken to the ER and then have been trying to "build up" since then and figure "it" out. That was TWO YEARS ago and I'm still trying to figure it out.
Lately I've seemed to have been making more sense of it, very simply put, as a period wherein the brain, where usually given a binary code of sorts, has no guide on the usual "yes / no" type of coding it usually has and the seizure/psychosis, just runs amok down through a "sense" section of the brain.
During a seizure the brain usually "blows a fuse" knocking the person unconscious so we don't experience the abstract wavelengths of the seizure. But during the psychotic seizure the brain doesn't blow the fuse.
Compare it to a layperson's description of a lightning storm. Let's say your residence is "life" and you have your lights on, the TV on etc. A lighting bolt strikes and hits the electric system, but luckily the power cables have a fuse that blows, but it knocks out the power to your house. Without the fuse, the psychic lightning goes directly into your house and sparks around between all of your house's electronic gizmos and outlets.
Well in the brain thoughts are your "gizmos", and whether you use the thoughts or not, they become activated by the seizure.
During a tonic-clonic seizure opposing muscles activate against each other making the body sore, my groin and quads femoris, hamstrings.. and brain. And during the psychotic seizure it sucks - because the more these thoughts are activated, the more agitated they become, and agitated against each other.
When the muscles agitate against each other harder and harder one or the other will eventually break off from the bone at the tendon.
If the same happens with thinking, the thoughts don't break.. they just go deeper and deeper INTO the brain - like a canyon being ripped apart - the soul dropping deeper from the earth down into the brain-canyon. If this happens to too much of an extreme, the person loses touch with reality and goes into a permanent state of psychosis.
It's a bit like climbing UP THROUGH ping pong balls if you ask me. Impossible. But it is not impossible.
Mull the points of fact and they will align.
Or at least it seems that way.
Maybe I've lost my mind.

:ponder:




Thank you both very much for your replies. At the moment I have been experiencing lots of aura activity ranging from floating numbers to crystal ball gazing, but at least now I know I am not going mad, which helps a lot. My mood has been going up and down too but not quite so bad as last time. I think the tablets (Levetiracetam) are beginning to kick in. My doctor has already arranged for me to see a counsellor and I will try some form of relaxation if my mind will let me. lol Went to see my doctor yesterday and she has signed me off work for a further 2 weeks (mainly due to not being able to see properly). I hope to chat again sometime and I hope all is going well for you guys. Kind Regards Debbie :eek:)
 

mejohn1

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I've got nothing enlightening to add to this as I've never experienced the psychosis side of things. After the last tc I had in May, I lost memory of the whole week and still only have a slight memory of it to this day. It would scare me to death to have the psychosis happen and I wish you all the best. It's a mean, nasty thing we've been given and it hits us all differently. Learn as much as you can and doctor shop if you aren't comfortable with the one you have. Prayer, for those who do, is a very powerful tool. Doesn't mean it will make it go away, but it has given me the ability to cope. Hang in there!
 

Endless

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Information is power

This is an important topic, and I'm glad you're all talking about it.

About 8% of people with E experience postictal psychosis.

Postictal Psychosis is a direct result of electrical seizure activity in the brain. People rarely talk about it but it's fairly common in E patients. From the posts I've read in here over the past few years, doctors don't seem to even discuss it openly as much as they should with their patients. So if you think you've experienced postictal psychosis it's important to tell your neurologist. They should be able to help, or they will send you to another doctor that can help (a psychiatrist). When they do this, they aren't calling you crazy. They are treating a direct symptom of your epilepsy.

These are pretty good summaries about PP:
http://professionals.epilepsy.com/pa...psychosis.html
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2265810/

A possible association between epilepsy and psychosis was first recognized in antiquity but gained attention in the middle of the nineteenth century with the writings of Benedict Morel80 and Jules Falret.81 Hill,82 in 1953, made the first modern report of a schizophrenia-like syndrome in patients with temporal lobe epilepsy (temporal lobe epilepsy).
Interictal psychosis



Psychosis in epilepsy can occur during interictal and postictal periods. The prevalence of interictal psychosis (IIP) in epilepsy ranges from 0% to 16%, with a mean of 7–8%.83,84 Compared to schizophrenia, IIP may be associated with a greater incidence of:85,86
  • empathic persecutory delusions
  • auditory hallucinations
  • appropriate affect
  • suicidality
  • lack of autistic traits
As compared to patients with only epilepsy, those with IIP have:86
  • later age of onset of epilepsy
  • more complex partial seizures
  • more auras
  • less generalized epilepsy
Some have found that seizure onset is typically 18 to 21 years before the onset of psychosis,87,88 but other evidence suggests that both sets of symptoms begin at the same time.89 Some studies show that temporal lobe epilepsy of dominant laterality is positively correlated with IIP,90,91 but other studies demonstrate a positive correlation with bitemporal foci85 or no correlation with laterality.92

Postictal psychosis



Postictal psychosis (PIP) is characterized by fluctuating combinations of symptoms:89,93
  • delirium
  • persecutory and other delusions
  • auditory, visual, and other hallucinations
  • affective changes
Postictal psychosis generally follows a lucid interval that lasts from 2 to 72 hours. Postictal confusion, on the other hand, is typically maximal immediately or shortly after a seizure or cluster of seizures.93

Some studies have found that bilateral seizure foci and clustering of seizures are significantly associated with episodes of PIP.84,93 Other studies have found that generalized seizures93 and complex partial seizures89,94 were associated with PIP.
Drug withdrawal can be temporally associated with PIP and IIP, probably by increasing seizure frequency in most cases.86,93,94
Can recurrent PIP evolve into chronic IIP? Logsdail and Toone89 found minimal evidence of progression from PIP to IIP in their patients. Alper et al., however, found that about 15% of patients with PIP went on to develop an interictal psychosis (K. Alper, personal communication).
 
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What would it be consideted...sometimes when I have a seixure I will talk like I'm 5 or 6 yrs old. Very confused. And no remembrance of the event lasts around an hour.

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>>Every thing in the post that Endless put up describes exactly what happened to my husband with his PIP. He felt that he was drowning or that someone was trying to kill him or me. He also felt that he was already dead... He was having auditory and visual hallucinations. All of this happened less than 24 hours after 3 seizures in 10 hours and it lasted for almost 2 days. Because he'd never experienced it before, the put him in a psych unit for 2 weeks and doped him up. It was a 4th year resident to discovered this and saved my husband from a life of the stigma of mental illness (when he left the unit, they thought he was possibly schitzophrenic). We feel that he developed PIP because he participated in a drug trial and he was being weaned off of it and his thresh hold just bottomed out after being on a cocktail that was unstable.

It is truly terrifying and it needs to be discussed - much like SUDEP is being talked about more regularly, these psychological affects of seizures need to be discussed too.
 

Deb12345

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:agree: I totally agree. Post-Ictal psychosis should definitely be discusses more often / be made aware of. When I was admitted to hospital after having two fits in one day, I was placed randomly in the bowel ward (no idea why) so when I started having these weird experiences a week later, the nurses thought I was going crazy. I was soooo grateful for my Mom to persuade the doctor/nurses to sleep at my bedside over the weekend. The nurses were just horrible. When the so called specialist doctor eventually got to see me '2 days later' on the Monday, he said, 'Oh you must be suffering from depression, like you did in the past', :dontknow: and prescribed me with some anti depressant tablets, then sent me home, bear in mind I was still having weird attacks and suffered from fits. A couple of weeks later, I eventually got round to seeing the top specialist who diagnosed me with epilepsy and told me I had a horrible experience of Post-Ictal psychosis. Sorry to hear about your husband. x
 

SlimBlue

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I've experienced this a few times, though usually it's been exacerbated by other things.

Twice a week-long period of it has led to me being sectioned for a month, after being picked up running round naked tripping my ti, well let's just say I was very far gone and hallucinating severely, completely wrapped up in a paranoid delusion. Not nice.

From that perspective, I can see how the usual period of post-ictal confusion can very easily spiral out of control- especially if you're living on your own and just don't see anyone for a while after.

As it 'reboots' the brain tries to reconstruct your reality as it were, or rather it tries to start processing all your sensory input again. Without any human contact afterwards and/or whilst on other medication, it's very easy for things to get very weird and unpleasant very quickly :(

I hope I never experience it again.
 
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I remember wondering if too many seizures could literally drive me crazy, and the answer is yes. I've had seizures since 2004. They started out as occasional grand mals, but now those are rare, and I currently have partial complex seizures all the time. I also have postictal psychosis after every seizure, but this week was the worst. Usually, the psychosis lasts about 5 minutes, but I have no memory of it. I have been told that I tried to drive my friend's car - from the passenger seat. I guess I've also gotten very angry, and I even spit in my best friend's face. Again, I have no memory of it. This past Monday, I had at least 4 partial complex seizures. Because of this, my psychosis was a lot worse. While I had the same behaviors that I don't remember doing, I also had extreme paranoia. Have you ever seen the movie, Matrix? That is the best movie I can use to describe how it feels. It feels like nothing real and that people are watching me. I even think that the people in the TV are watching me. This did not last 5 minutes. This lasted until yesterday, and I'm still not at 100%. People think they know everything about seizures because of what they see on TV, but they truly have no idea.

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