Post-Ictal psychosis

Deb12345

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Hello, I am new to this site and have just been diagnosed with epilepsy. I have also been told that I have experienced an episode of Postictal Psychosis which apparently is quite rare. This scares me more than the epilepsy itself because I am conscious when these episodes happen but can not control them. I was in hospital when these were happening to me. One minute I would be laughing, the next crying, then I would turn angry and think everyone is against me. At one stage I didn’t believe the hospital was real and I couldn’t trust the doctors. I even told them that too. My hearing was very bad (going up and down) and I was seeing things i.e. spy cameras. I even thought a robin was spying on me and had to go and check. I had another epilepsy fit this Wednesday gone and am very frightened that I am going to get Postictal Psychosis again. The last time it happened was a week after the big seizer, so there is every chance it can happen again. I would like to know if anyone else has Postictal Psychosis? How do you cope with it and what kind of strange things do you experience? Thank you all for your time. Kind Regards from a scared young lady, Debbie :cry:
 

Nakamova

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Hi Deb --

I'm sorry for what you're going through. Epilepsy can be especially scary in the early weeks and months of the diagnosis -- there is so much that is overwhelming and confusing.

I haven't experienced it myself, but the post-ictal psychosis sounds pretty distressing. Keep reminding yourself that it is only your brain misfiring -- it's really just another aspect of the seizure, with the neurons still overloaded following the tonic-clonic. Some folks actually experience bliss, while other feel paranoia. Either way, there's a bit of a disconnect from reality. You may want to consider seeing a therapist just to help deal with all that's on your plate right now.

Aside from any meds your doctor's might prescribe, it's worth adding some meditation and/or relaxation exercises to your day. Even as little as a half hour in the day can help your brain to settle down. It's also a good idea to keep a journal (if you don't already) where you can record information about your seizures and your treatment, and also about things like diet, sleep, stress, etc. In this way you can potentially identify and eliminate seizure triggers from your life.

Best,
Nakamova
 

RobinN

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My daughter loses memory with each seizure. I have read that this could be due to the hypoglycemia that we have connected her seizure activity to. Since finding out this information she has been seizure free.

She also had a period of time, before making nutritional changes where she lost her past memory for three months. It was a scary time.

My only advice is to keep digging as to what is causing your seizures, and then I hope that you won't experience these episodes any more.
 

Deb12345

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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:)
 

Mike

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I have experinced Postictial phycosis and was told that it was a pretty common thing to happen after seizing. I dont meen to sound like a broken record about Nerofeedback but, the phycosis was one of the first changes that we noticed after starting the Nerofeedback . The phycosis was the worst part of the seizure without doubt!!!
 

Deb12345

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Seizures and hearing voices

Hello all :hello:, had another two big seizures last week. Again both very scary and quite different. The first one I had was last Wednesday. I was sitting on my bedroom floor when I heard horrible voices in my head followed by an awful tune and giddiness. At this stage I must have gone into my seizure because 30 minutes later I woke up flat out on the floor with a horrible migraine. My Dad found me there. I then had another seizure whilst in my bed Thursday morning. I was very sick with this one and again had a horrible migraine. Mom and Dad had to phone for an ambulance to come. They gave me 3 drips and took me to hospital to be checked over. Do many of you get voices in your head before a seizure? It’s frightening. :sad: My Neurologist still doesn’t know what are causing my seizures because he said my brain looks fine from the MRI scan and 3 EEG’s I’ve had. He said I could have a slow heart so he is getting me checked out for that. Do many of you have seizures due to a slow heart? Thank you for your time. At the moment I am off work because both my Doctor, Consultant and Work wont let me go back. Been off now since end of June. Not good! :crying: Thank you again. Kind Regards Debbie :flowers:
 

horsehead

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this is interesting alot of these things have happened to me but the doctors have always said it was panic attacks. I've heard voices ,have been very paranoid thinking I was going to die,Had the feeling of bliss just nothing in my head so peacefull,mood swings ,just about all you guys have said. How do you know the difference between a panic attack and post-ictal psychosis?
 

horsehead

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These things would happen for days at a time. The meds they gave me made things worse then it would just go away.
 

occb

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How do you know the difference between a panic attack and post-ictal psychosis?
I was wondering the same thing. My partner has experienced the same things and has always been told they were panic attacks as well. His also lasted for many hours, several days in a row, and they also worsened after taking the meds he was prescribed.
 

horsehead

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I wonder if anyone knows? My dad said one of the doctors that treated me thought I may be having seizures but since nothing showed up on the mri they treated me for panic.:ponder:
 

Mike

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I think that the difference between a panick attack and any psychosis is the fact that a psychosis last from several days to even several weeks, where a panick attack lasts only a short period of time. What did you meen when you said that they gave you 3 drips ?
 
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I do not have post-ictal psychosis, but I do experience panic attacks after my bigger seizures. I do not know how long they last. I become very short of breath and feel like I am not breathing at all. I remember thinking to myself after the last one that I had that I wasn't breathing at all and I was going to die if I didn't take a breath of oxygen QUICK...The same thing happens to me almost every time I have a tonic-clonic seizure. Does anyone experience anything similar to what I do after a seizure?
 

Mike

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After my seizures, which happen during my sleep . I roam around the house but Im not able to remember most of this 45min. peroid. The stuff that I read about my experinces calls this postical confusion. my wife slips me one lorazapam and it calms me down and prevents any further seizure activity, like seizure clusters. Lorazapam is generic adavan.
 

Deb12345

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Hello Mike,
What I mean by a drip is a bag of saline fluid which the ambulance guy put into my arm. I had 3. I had to have them because my blood pressure went dangerously low after my seizure. He also had to raise my legs.
Kind Regards
Debbie
 

Mike

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Sorry to hear about your bloodpressure problem. Heart problems make epilepsy even more of a nightmare.
 

Mike

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In my experince, the posticial period was the first thing and the most important thing I saw a change a in after I started Nerofeedback. The time period and intensidy lessened. Now when I have a breakthrough seizure, I dont beat myself up anymore.
 

mnij123

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I cry after my TCs sometimes. If I don't know that someone is with me I will always cry. As I wake up I am in this state where I can't move, I can talk, I can't open my eyes, and I am Deaf so I can't hear either. I can only really feel and smell. I have no idea where I am, I have no idea who is with me, I have no idea that just had a seizure most of the time and it is really scary. People how know me will make sure they are touching me as I come out of it and I stay A LOT calmer. If I am alone or if I think I am alone I will almost always waking crying and upset.

If I have several TCs in one night I get a bit crazier as the night goes on and start to say weird things. Sometimes people tell me it's like I am drunk. I don't really remember it when I get like that. Sometimes that happens after even one TC. It depends on how bad they are.
 

Mike

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Have you talked to your Nerologest about this? I think that if after the first seizure you take some Ativan it will prevent anymore from happening that night. I have seizures in my sleep also.
 

mnij123

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Have you talked to your Nerologest about this? I think that if after the first seizure you take some Ativan it will prevent anymore from happening that night. I have seizures in my sleep also.
I have them in my sleep but I don't really notice them in my sleep. When I said night I meant evening. For me they start to get worse around 5pm and some nights I have several TCs between 5 and when I go to bed. I have them sometimes during the day to.
 

Mike

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Most people get results in 5 to 6 months of treatments of Nerofeedback. Maybe it could work for you too! Fear and confusion after a seizure makes the headach even worse. I think that through the past 30 years Ive seized about 600+ times. Nerofeedback set me free!
 
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