If I should go on medication...

[pianoguy]

Thanks to the both of you. @Silat you are extremely knowledge and each one of your posts is very helpful.

@Lisa. I'm so sorry to hear about your daughter. I couldn't imagine going through that with my own daughter. I truly hope she makes a recovery.

If I might ask, how do you know she is seizing in her sleep? I wonder if I have them in my sleep but other than recording myself I'm just not sure what to look for. (Other than common biting tongue bruises etc)

 

[LisaBee]

I rarely go to bed before 2 or 3am. No matter how tired I am I just cant sleep. So..since I put my kids to bed around 9:30pm I caught her behaving "odd" in her sleep one night and just kind of kept an eye on those episodes for awhile, which occurred nightly. Took her to our Pediatrician, sent to a Neurologist who said she was having Parasomnias (sleep terrors) and she would grow out of it. That answer didnt sit well with me. These episodes were always about the same time, same actions. Surely she couldnt be having the same bad dream nightly? Fast forward 3 months, she had a sinus infection so she slept in my bed. I awoke to her having a Grand Mal seizure. Scariest thing Ive ever seen. Between my Pediatrician and Neurologist (who made it clear he doesnt really see kids) they were useless. One pushing me off to the other. I was determined to prove her sleep episodes had something to do with her Grand Mal. I made and appointment with a Pediatric Neurologist who looked at the videos I took on my phone and said, yes. There is a connection. Finally someone who can help! We dont have a definate diagnosis or seizure control yet but Im confident (no choice but to have faith and hope) we will very soon. You are right, its awful to see your child go through this. Its scary and Id trade places in a heartbeat!!

 

[pianoguy]

Good lord what a nightmare. It's bad enough you have to see your child go through that only to be given the run around. My heart goes out to your daughter, poor thing. I hope you can finally start making some progress.

It seems that's almost the biggest issue, trying to prove you're going through what you say. It seems to be "well let's see how bad things get, then we'll start working with" you. Makes me wonder if there are that many hypochondriacs going into the doctors that make them become so apathetic to someones needs.

 

[Eli]

I do tend to eat well though it can be sporadic. ...I do feel tired all..the..time. The only exception was after my latest episode in which I slept 13 hours.

I have a couple of questions

2. When many of you started having epilepsy did you start also suffering from headaches? I have headaches that come and go almost every day. I never suffered from headaches prior to this. It was extremely rare when I did. I have a new found sympathy for those who suffer from migraines. It's horrible sometimes.

For me the sporadic eating doesn't help, thus the snacking helps me.

Fatigue is common imho. Although after a cluster of days of sz I will sleep like a zombie and i feel great when I get up.

As my seizures have gotten more frequent the headaches and migraines have gotten worse. My best friend suffers from migraines and I feel for him much more than I used to.

 

[Eli]

Took her to our Pediatrician, sent to a Neurologist who said she was having Parasomnias (sleep terrors) and she would grow out of it. That answer didnt sit well with me. These episodes were always about the same time, same actions. Surely she couldnt be having the same bad dream nightly?

Glad to see you are taking an active approach to this. That's the same thing the pedi dr and Drs at John Hopkins told my mom when I was 7 yrs old....night terrors. I remember the horrid nightmares and she said she was petrified as I would "sleep walk" throughout our 2 story house. I had a head trauma and concussion but it was blown off.

About the nightmares...I still have them. As a child there were a handful of various different ones I had and they were almost always the same. Same thing now, except they are different (adult) nightmares. Ie: I wake up sweating, scared with my husband holding me, saying soothing words. I say I had the "name of nightmare" (yes I've named them ) He says, you had a seizure. So I now know that those nightmares mean I had a nocturnal t/c. Course incontinence also makes it evident when that happens.

As a kid I didn't tell my mom about the bed wetting. I learned to do laundry young, she always thought I was just odd and liked clean sheets.

 

[pianoguy]

Have you ever had a dream you where having a seizure while having a seizure?

 

[Eli]

Have you ever had a dream you where having a seizure while having a seizure?

Yes, just this week. I've just come off of what I call a cluster week of seizures. Gonna get some ice water and then ill post about my sz sz dream. It was a funny one. Well funny now.

brb

 

[Eli]

Ok so last week I did a bunch of coding and graphical work on my website and some other projects which I knew better to do all at once but I was feeling good and on a roll.

My brain paid me back thusly:
I dreamt that I was on the second floor of a building, inside. The floor opened up into a foyer below but there was no railing. There was a guy standing by the edge and he was having a seizure and I said, hey we need to help him he's having a seizure. Then I started seizing in my dream. I called and looked around for my husband and parents. It's like I knew they were somewhere close. That's a common feeling for me, prob cause they check on me so much.

Then the guy falls off the edge of the floor into the foyer and apparently my husband and parents weren't responding to my seizure cause no one came to my aid. Everything went black after that.

When I woke up, in real life, my service dog was standing over me in bed, breathing on my face and sniffing me. I often wake up from nocturnals that way, with him looking down at me, saying hey wake up mom youre freaking me out!

 

[pianoguy]

Interesting. When my ex wife witnessed my last seizure on Thursday night I dreamed I was having a seizure. I'd consider it a scary dream. I thought I was crazy because I was under the assumption you could't remember having your seizure. I might have been awake I don't know. Honestly I'm not sure the whole thing is foggy and I'm having a heard time remembering that night. I'm learning as I go trying to figure out what they feel like or if I"m just losing my mind.

Thanks for sharing your story. Everyone here seems to deal with it really well. It's reassuring. I'm not tired but I'm going to try and lay down as I know these late nights probably aren't helping much. I'll sneak my tablet into bed and read from there.

 

[julie wishes]

I would encourage you to read about concussions. I suspect you are suffering from both post concussion symptoms and seizures. Speaking from experience, it can be hard to figure out what is causing what. But you may find after looking at the symptoms of post concussive syndrome that you have parts of that and parts of seizures. Concussion symptoms can last a long time, even months, but with good prognosis of complete recovery. Wish I could say the same for seizures. Here are some key words for your research:
Post concussive syndrome
mtbi (mild traumatic brain injury)

 

[Eli]

It's almost sunrise here so I'm going to head out in a few.

I keep a laptop by the bed and use it to document events. Some mornings I wake up to garbly goo or "help" typed into im before i lost consciousness. Other times I manage to call someone and they tell me later what I said or did. Just some of the reasons I have so much info and feedback on what happens during my "spells."

It's funny when I come to semi awareness on the phone and I ask my husband, where am i? who are you?

Thank God for patient loved ones.

 

[julie wishes]

Have you read about simple partial seizures? Because you can be aware during seizures.

But look this all up tomorrow. Sleep now. Very very important.

 

[Eli]

I would encourage you to read about concussions. I suspect you are suffering from both post concussion symptoms and seizures. Speaking from experience, it can be hard to figure out what is causing what. But you may find after looking at the symptoms of post concussive syndrome that you have parts of that and parts of seizures. Concussion symptoms can last a long time, even months, but with good prognosis of complete recovery. Wish I could say the same for seizures. Here are some key words for your research:
Post concussive syndrome
mtbi (mild traumatic brain injury)

Morn Juls! Were you talking about my concussion? I haven't read much on them but after my epileptologist got a copy of my childhood records from John Hopkins she said she thought the head trauma/concussion was suspect.

Thank you for the information, I'll research it.