Postictal Psychosis or Med Reaction

[gbpackerfan]

What a couple of weeks. I made a post a couple of weeks ago about a strange seizure experience that I had and I don't really remember the post. I have had a several seizures over the last couple of weeks. I stopped dilantin and paxil at the same time that i started trileptal and prozac. I had a waking seizure experience that i made a previous post about, very weird. My brother and I got in a fight in front of our kids and he kicked me out, i was defending my kids and he was being a dick... I stayed with the ex for a couple of days. She told me that i had multiple seizures on night. The next day i was hallucinating and horrible visions and thoughts of suicide. I checked myself in to a behavioral health hospital after crying all day long. The visions and hallucinations stopped after a couple days but the hospital kept me for a full week. I was let out a couple days ago and saw a sleep medicine doctor and I have a sleep study coming up ASAP. I would have never known about my nocturnal seizures if my ex did not witness them. I had another experience a couple of nights ago where I felt sick to my stomach and my head was spinning so I layed down and my right leg started jerking uncontrollably. I saw my neuro today and he told me to stop taking flexeril for my back pain. He has now added gabapentin ( not sure of spelling), depakote and celebrex, and told me to stop ibuprofen when i start the celebrex. now i am taking trileptil, depakote, gabapentin, diazepam, celebrex and prozac. I have been thinking that my problems over the last couple of weeks have been caused by med reactions and extreme stress, now I am stopping two more meds and throwing 3 more in the mix. I trust and love my neurologist, I am not so sure about the behavioral health place that I am going to or my pain management place. I am frustrated, have only ever had nocturnal seizures but in the past month, I've had my first two while I was awake and multiple nocturnal seizures and basically had some kind of crazy psychosis for a couple of days. I feel much better but I am extremely anxious and can barely stand being in a group of people. I called the local DMV and reported myself, again. I now have to be seizure free for 90 days from two nights ago. I missed my appt with social security while I was in the hospital but my sister rescheduled it for me. I am now staying at my mom's house and it is much more relaxed, but I am living out a backpack. Just wanted to share this crazy experience and wanted to know if anyone else has had such horrible med reactions or has experienced postictal psychosis

 

[resaebiunne]

I have experience postictal psychosis and non-postictal psychosis. The results were very much the same between the two: hallucinations. The postictal psychosis was much more severe hallucinations than what I experience(d) "normally", ie. I had both visual and auditory hallucinations. Combined with the confusion of waking up from a seizure, the psychosis was a harrowing experience. Psychosis can certainly be a medication reaction, but of course it can also be caused by a seizure. Perhaps it was a combination of the two things together? In my case, I've actually been diagnosed as having psychotic disorder NOS by a psychiatrist so my psychosis is not necessarily caused by seizures. I take Saphris which is an atypical antipsychotic medication typically used for schizophrenia.

 

[Bidwell]

gbpacker -- It sounds harrowing and exhausting and just plain freaky. So glad you can stay at your mom's house while all this is sorted out and thankful that you think highly of your doctor.

 

[gbpackerfan]

I had a strange seizure about a week before that was very colorful visually. Earlier this year I tried zonisamide and had two months of extreme anger and irritability but when I checked myself in to the hospital recently my visions were completely visual. My entire state of mind was changed and was hallucinating as well as seeing horrible, graphic visions of committing suicide. I love life, I love my kids, I love my family and I would never commit suicide. I have never had hallucinations before or after and I am thankful for the support and care of my family to take me to the hospital when I asked them to. It was actually my brother. We have already apologized to each other but I am still going to stay with my mom.

 

[Bidwell]

I am so glad you are taking care of yourself. About the Zonisamide. You are describing a quality of -- this is happening to me and I am really into it but it REALLY is not me -- I experienced something like this when I was on zonisamide. At the worst, I knew I was thinking the way I was thinking and I knew that I did not believe a word of it. It did not feel like me one bit. And the suicidal parts were really nasty, really viscious while I was standing back [so to speak] saying, This is ME?

Dangerous stuff. You do a good job of describing it. You know and I know that real life on the slow track is BETTER! Again, take good care of yourself. B

 

[gbpackerfan]

Thanks Bidwell. Are you still on the zonisamide?

 

[Bidwell]

I am very slowly titrating off the z. I have had a vitamin B12 deficiency, probably/possibly caused by the zonisamide. B12 deficiencies cause exhaustion, neuropathy, depression, PSYCHOSIS, dementia and more. They aren't rare.

Since you are taking these high powered meds, I urge you to make sure that your docs are do the blood screening tests, especially if you are feeling worse one way or another.

 

[gbpackerfan]

I have been doing monthly blood work and will be for several months. I hope things get better for you. It took a couple of days to feel better after the Z, but I did feel much better. Good luck B.

 

[AlohaBird]

".....now i am taking trileptil, depakote, gabapentin, diazepam, celebrex and prozac. I have been thinking that my problems over the last couple of weeks have been caused by med reactions and extreme stress, now I am stopping two more meds and throwing 3 more in the mix."

Holy carp, Dude. That is quite the med cocktail. You have probably got side effects from the side effects and interaction with the interactions going on there.

You are probably right that the stress level is not helping any. Anything that you can do to help find some inner peace and quiet, whatever works for you, yoga, meditation, breathing exercises, would probably be a big help in holding things together while your med situation gets on a more even keel.

Any time you get such a long list of meds interacting the potential for negative cross reactions goes way up.
For instance, I take two meds but one makes the other stronger. I'm not taking any extra of that one, but to my body it feels like I am. This is just one thing that can happen. Drugs can also cross react to make one another weaker even to the point of not being effective. They can disrupt your system in other ways, as Bidwell said about the B12. (There have been two cases recently on CWE of people with B12 problems which manifested as psychotic breaks. I would listen to Bidwell and get yours checked.)

 

[gbpackerfan]

Thanks Alohabird,
I've had a couple doctors over the past year prescribe me new meds with the catch 'talk to your neuro before starting this med' and no one wants to take any kind of responsibility. Once again, my neuro came to the rescue. He was frustrated when I saw him a couple weeks ago about it but just yesterday he took the time to go through my meds for me. I was in a car wreck last November and have been taking flexeril and ibuprofen, he said the flexeril is having multiple reactions with my med list so he is eliminating that and wants me to take gabapentin. He said the Celebrex will be a good long term replacement for the ibuprofen. He doesn't want me taking the diazepam because it can be addictive but I am on the lowest 2mg dose and I am feeling extreme anxiety lately. He wants me to stop the diazepam ASAP. He wants to get me seizure free on depakote and take Trileptal out of the mix, but only after I have been seizure free for a while. I have my second steroid injection for my back coming up in September and I'm hoping to get some relief so that I can slow down gabapentin, under docs instructions. It is a mess of scripts but him and I have somewhat of a plan and he is very good to me. I am doing yoga and practicing some breathing techniques. I definitely appreciate the input Alohabird. My kids are not doing well in many ways and I feel horrible that I am not in a position to file suit with their mother right now, beside the fact that my life has taken some major turns in the past year. All of my problems and anxiety are related to each other and I can see that but I still stress about my kids daily. Things will get better and I am trying to keep that in mind but I am a proactive person and it's stressing me out to just sit back and cross my fingers. Thanks for the support.

 

[AlohaBird]

Yes, that often happens. Multiple doctors with multiple Rxs. It's good that you have one neuro with something of a plan which is in the general direction of less meds. The yoga should help with your back in addition to your stress. Have you talked with your doctor about any dietary modifications that could be helpful?

Try not to stress about your kids right now. You will be better able to be there for them once you get yourself back from the edge and stable. It sounds like you have been through a really rough patch but are back on the right path now.

 

[Cint]

I've had a couple doctors over the past year prescribe me new meds with the catch 'talk to your neuro before starting this med' and no one wants to take any kind of responsibility. Once again, my neuro came to the rescue. He was frustrated when I saw him a couple weeks ago about it but just yesterday he took the time to go through my meds for me. I was in a car wreck last November and have been taking flexeril and ibuprofen, he said the flexeril is having multiple reactions with my med list so he is eliminating that and wants me to take gabapentin. He said the Celebrex will be a good long term replacement for the ibuprofen. He doesn't want me taking the diazepam because it can be addictive but I am on the lowest 2mg dose and I am feeling extreme anxiety lately. He wants me to stop the diazepam ASAP. He wants to get me seizure free on depakote and take Trileptal out of the mix, but only after I have been seizure free for a while. I have my second steroid injection for my back coming up in September and I'm hoping to get some relief so that I can slow down gabapentin, under docs instructions. It is a mess of scripts but him and I have somewhat of a plan and he is very good to me.

You're definitely taking a mess of scripts, but you need to make sure the other doctors are communicating with your neurologist when it comes to prescribing a new med. And any time an accident happens, make sure you have some sort of a list of medical conditions and medications available so there won't be any confusion if you are unconscious.

And to answer you original question, there is a type of seizures where one does have hallucinations while having a TC seizure. I've had a few of those. Actually, I only hear voices right before I pass out, vicious, accusatory voices and they get louder and louder, then BOOM, I'm out! But I haven't had one of those in Years now. When I did experience those, I, too, was on a lot of AEDs along with an anti-psychotic drug. So, IMO, it is the massive amount of drugs + the anxiety that is causing the seizures to exacerbate.

Check this out:
http://www.epilepsy.com/learn/impact/moods-and-behavior/mood-and-behavior-advanced/psychosis

 

[gbpackerfan]

Hey Cint,
I definitely appreciate the advice. I have all my meds and dosages and conditions listed in my health app on my iPhone and have advised my family and friends of it. I have never had hallucinations during a seizure that I remember. What I was experiencing was a day after having had multiple seizures over a couple days, changing multiple meds and having an extreme amount of stress going on. I have always had extremely long postictal periods before regaining 'consciousness'. I read the article that you posted. I have also read this article:

https://en.m.wikipedia.org/wiki/Postictal_state

This article has a section about postictal psychosis (PP) that I was basically referring to. I am aware of other forms of psychosis, which I may or may not have, maybe that's what you were referring to or maybe that's why I'm in denial about it... What I experienced was definitely different than anything I have ever experienced before.

I do my best to communicate with my neuro about everything but I see other docs for other things and sometimes it is up to 3 months to get an appointment with him. He usually squeezes me in when I need to but I had to get off of Dilantin after 14 years. I have all my scripts filled at the same place and I've never had a pharmacist bring up any issues about possible drug interactions, just had me sign on the dotted line.

 

[resaebiunne]

I'm not sure if it's worth mentioning this, but I thought I would anyway since it might be useful.

After my seizure I had both visual and auditory hallucinations. Auditory hallucinations by themselves are symptomatic of bipolar or schizophrenia. But visual hallucinations are not necessarily symptomatic of those conditions. Visual hallucinations are symptomatic of much more severe conditions such as stroke or vitamin/mineral defficiencies (or perhaps medicine interactions?). To have visual hallucinations means something much more serious and is worth going to the ER/urgent care for. Don't wait to see your doctor if you have visual hallucinations.

With my psychotic disorder NOS, I only ever experienced auditory hallucinations. It was still something they put me on medication for, but it was not ambulatory medication, ie. my psychiatrist prescribed the medication under normal conditions.

After having my last generalized seizure, it was the visual hallucinations that really convinced me that I needed medical attention (at least until I realized my shoulder was dislocated, among other things).

 

[AlohaBird]

You're definitely taking a mess of scripts, but you need to make sure the other doctors are communicating with your neurologist when it comes to prescribing a new med.

And to answer you original question, there is a type of seizures where one does have hallucinations while having a TC seizure. I've had a few of those. Actually, I only hear voices right before I pass out, vicious, accusatory voices and they get louder and louder, then BOOM, I'm out! But I haven't had one of those in Years now.

Exactly. And "communicating" means the other MDs actually calling your neurologist up and having a talk *before* giving you the pills, not just saying, "check with your neuro" as they toss you the pills.

Thats interesting about Cint's auditory hallucinations. I used to have them as well but haven't for years. Mine were always ringing phones, alarm clock bells which perhaps makes sense since mine are nocturnal.

I have also been known to do some post ictal what was described a "sleep walking" and waking up in places I didn't go to sleep. I was also told there was some pretty bizarre behavior but it was written off to sleep walking so I never really explored it.


But then the OP makes a very valid point about the wait times involved to get to see any particular doctor. It is no wonder that a lot of the coordination between specialists that should happen when prescribing medication for someone who is already heavily medicated can "fall through the cracks".

We need to advocate for ourselves though and try to change that.

 

[gbpackerfan]

Alohabird,
I completely agree. I took nothing on a daily basis except for Dilantin until last December. I was still having random nocturnal seizures and wandering Tucson in my underwear, so maybe a med change was in order, BUT... I get my back messed up in a car wreck and try to change seizure meds and BAM!! One med after another, after another. Meds to counter act the side effects of other meds. Meds to replace other meds that aren't good for long term use. Meds with side effects that make an anxious, irritable ass for 2 months. One doctor tells me to ask/ take the advice of another doctor who tells me to ask the pharmacist because that's his job. I can picture a cartoon with a bunch of chemists in a room with beakers in their hands just pointing fingers at each other after something just blew up.

I asked my neurologist just a couple weeks ago about my meds and he gave me his opinion on some and told me to follow other doctor's orders on others. After I checked myself into the hospital, I saw him again and we went through my meds top to bottom. My neuro is awesome but I still think it was a ridiculous situation. I completely agree that I must be very proactive from here on out. It's crazy to the point that the other driver's insurance company is saying that I'm not hurt that bad because I didn't want to take Percocet anymore. I will be doing a lot of research on alternatives to pumping chemicals into my body.

 

[AlohaBird]

I showed up on my parents doorstep at 4am in my underwear once with no clue how I got there. I know that feeling.

If you need any help or links and such in your research, let me know.

 

[gbpackerfan]

I really appreciate it Alohabird, thank you.

 

[gbpackerfan]

Hello everyone,
So I have been feeling much better as of late. My neuro has diagnosed this event as 'Metabolic Encephalopathy'

http://www.emedicinehealth.com/script/main/mobileart-emh.asp?articlekey=106247&page=3

It gives me a little closure after this very terrifying experience. Even though the description of it is basically one or the other, a med reaction or an altered state of brain function present in some seizure disorders...

 

[AlohaBird]

Metabolic encephalopathy is a good diagnosis because all those things, blood sugar irregularities, electrolyte imbalances, thyroid issues, etc. are things that can be corrected.

Have they given you any clue as to which of the many things included in the Metabolic Encephalopathy umbrella you have?
Have they done liver and renal tests, HBA1C for your blood sugar, thyroid testing, etc?


So glad you are feeling better