Post-Ictal Freak-Out

[hydrogyrum]

Thanks, y'all for your discussion. i'm very happy to learn about your experiences!

My second-to-last seizure was followed up by a series of emails to my neurology NP, in which I castigated her for her miserable failures as a medical practitioner. Then I went to the ER and learned that the hospital's neurology department couldn't deal with my series of emails.

I recall that, at the time I sent those miserable emails, my goal was first to email my np to tell her I'd had another seizure and that the lamictal wasn't working. I did not do this; instead, I lambasted her for her inadequacies.

Based on this, I am now 'banned' from the hospital's neurology department. They've tried to get me a referral outside of their hospital network, but my insurance is causing an impasse. This will change in May/June, but until then, I have to reply on my PCP, who is a DO and thus is leery of prescribing stuff outside her domain of comfort. (To a certain degree, I don't care because my current medicine doesn't address my problems; I'm willing to maintain a 'hold' flight pattern until i change insurance companies and get the treatment i need.)

As an aside, I'd like to say that my neuro np and the epilepsy monitoring unit I was in for 10 days is a Level 4, but their aftercare is a Level -1. This particular hospital has a great reputation overall in michigan--and deservedly so--but as far as epilepsy goes, they're in the hole (despite being rated a level 4 in epilepsy svs). There is another hospital in town that is also a Level 4, and has been for more years. From my research, they outpass my ex-current hospital system by far. The only problem is that they don't accept my medicair insurance, which is maintained by the -1 hospital's insurance system.

i'm willing to wait until may/june to change my medicaid provider; it's just a problem of surviving until may/june. maybe i'll buy me some term life insurance to fill in the gap.

 

[hydrogyrum]

I'd also like to document that my last seizure was witnessed by non-family people. i don't know what happened first, but then my hockey buddy sitting next to me asked if i'd like to leave. i said yes, and she helped out of the arena. my legs would not cooperate: for instance, i wanted to walk towards the handrail by the outside stairs, but could not do this on my own. afterwards, i hugged a streetlight pole until she could summon my parents to pull in closer.

This was the second event, in the same place, where i couldn't control my body and have no memory of the 35-45 minute ride back home. (parents said i was thrashing about in the back seat and then cursing up a storm). when we got home, parents helped me from the car into the garage, where i fell down--fortunately, into a 'soft' bag of garbage! i tried to prop myself up on my arms, but they gave out and i fell a second time into the trash. eventually, i was able to crawl into the house.

all of this makes me appear to be a failure. all my life, i've been capable, both mentally/psychically and physically. Since experiencing epileptic seizures since 2015, i cannot be relied upon. this is so upsetting to me. it might be helpful to publish a book on people who have had a major life transition and who are now coping with their new challenges (still trying to be positive, look at me!).

 

[valeriedl]

You don't need to feel like a failure!

When I was first diagnosed with epilepsy I was 27 years old, 13 years ago. I had a full time job, could drive and was living on my own. After being diagnosed all of this stopped. I had to quit working, couldn't drive anymore and had to move back in with my parents.

My seizures were very bad in the beginning and I was having a ton of them so no one would let me out of their sight. I felt like a child. When I took a shower my mom would come into the bathroom and stay while I was in the shower to make sure I didn't have a seizure and fall out. I think she even sat outside the bathroom door while I was going to the bathroom. When I went out with them to the store I had to stay right by their side. If my parents went out and I wasn't going with them then I had to go to my grandparents house, which is next door, and stay with them until they got home. They wouldn't let me use the stove or oven and not even come close to a knife. Epilepsy was new to everyone, even myself, so no one was really sure what was the right thing and what was the wrong thing to do.

After about a year it was ok for me to take a shower with no one in the bathroom with me. If I was in there for a long time someone would see if I was ok, but they really didn't want me showering while I was in the house alone. It took at least 4 years before they'd let me walk around in a store myself and it was like I'd become an adult again. It was my dad who did this when we went to the mall. He told me to go shopping and he was going to sit in one of the department stores and watch a tv. He call me on my cell every so often just to make sure I was ok but I didn't mind that - heck I was shopping on my own! It took a while before we realized what I was ok to do.

I had a seizure once when I was at a restaurant with my husband, his son and his son's girlfriend. We were sitting in a booth and I shoved my husband out of the booth, I was sitting on the inside, and started walking to the bathroom. He didn't realize I was having a seizure until I wasn't answering anything he was saying when he was following me. I'd gone into the men's room so he stood outside of it to make sure no men went in. When I came out he took me back to the booth and sat me down. I didn't even know I'd had the seizure when I came out of it. We're glad there were no men in there at the time and not sure if I actually went to the bathroom but we hoped I wiped if I did! I know his son and his son's girlfriend were shocked to see me have a seizure and to see what it was like.

I had a seizure in the check out line in a grocery store once when I was with my husband. I just sat right down on the floor and wouldn't move. He was trying to keep an eye on me so that I was ok during the seizure while he was digging through my purse to get my wallet to pay for the groceries. He was afraid that some would think he was trying to steal from me. When everything was in the cart he had to pull me up from the floor and basically drag me out to the car while he had my purse on his shoulder and was pushing the grocery cart. He was afraid that someone was going to think he was kidnapping me too He got me in the car then put on my seat belt and shut the door to make sure I wouldn't go anywhere while he put the groceries in the car. It's sort of a joke now that he was mad when we got home he had to bring all the groceries into the kitchen and put them away which is something we normally do together!

You'd be surprised at how many seizure's I've had that we actually laugh about. Even though they might not have seemed funny at the time now that we know more about epilepsy and understand what I'm like when I have a seizure.

A book doesn't sound like a bad idea. Think it might be a best seller and they might even make a movie out of it?

 

[MuayThaiFighter]

My post-ictal stuff was pretty wild. I don't recall much, but I was in some same situations. Depending on the meds, they could be way different. Keppra turned me into a really angry person, so the Dr.s weren't excited about me in the ER.

Typically I just feel panic, and this survival mode kicks in. You aren't alone. Hope you find the right mix of what works for you.