Change in seizure types

[valeriedl]

I've had epilepsy for 13 years and I don't think I've ever had any 'sleep seizures' that I know if because I don't always know when I've had a seizure in general. Over about the last year I've started having them in my sleep. I'm still having them when I'm awake but the sleep seizures seem to be happening more frequently than when I'm awake.

I take naps on the couch in the afternoon and my husband has seen me having them then. I'll wake up, maybe an hour or two, after the seizure and he'll ask me if I'm ok because I had a seizure and fell back asleep when it was over. I don't know if I actually woke up during or after I had the seizure because I had no clue it happened but he said he knew I was out of the seizure when I went to sleep.

About two weeks ago my husband heard a loud bang in the middle of the night and came into my bedroom, we sleep in separate ones. He found me laying on the floor with the night stand there with me. He stayed in the room until he knew I was out of the seizure, again don't know if I actually woke up or not at any time during or after it, but he straightened up the nightstand and left me on the floor and didn't try to make me get back in bed but covered me up with a blanked. He stayed out in the living room for the rest of the night just to make sure I was ok.

When my alarm went off in the morning to take my meds I was in bed. He didn't put me there so I must have done it at some point during the night. I went into the living room and saw him sitting in the chair, just figured he'd gotten up early, and went into the kitchen to feed the cats. When I came back into the living room he asked me if I was ok because I'd had a seizure during the night. I looked in the mirror and saw I had a swollen lip with a cut on it from hitting the night stand.

The last seizure I had was while I was taking a nap on the couch. He was there to see me have it. Again I don't know if I actually woke up after or during the seizure but I fell right back asleep after having it. When I woke up an hour or two later he asked me if I was ok because I'd had a seizure. Didn't know I'd had it but I'd chewed the inside of my mouth.

I don't know if I'm having more in my sleep or not because of us sleeping in separate bedrooms and he works night shift and is in the bedroom during the day while I'm taking my nap on the couch. I'm shaking more often, not very bad though, during my seizures (having tonic clonics?) especially when I'm asleep because that's when he realizes I'm having the seizure during my nap. I'm also chewing my mouth more often too, not during every seizure though.

My neuro hasn't made any changes with my meds for a long time but he did lower my VNS around the beginning of the year. The number of seizures I'm having a month has stayed the same unless I'm having more during my sleep that no one's there to see me to have.

I see my neuro in about two weeks so I'm going to let him know about this. But is it normal to have changes in your seizure types after so many years?

 

[BIGMAN131307]

But is it normal to have changes in your seizure types after so many years?

Simple answer yes. http://epilepsynyc.com/2012/07/when-seizure-types-change-part-i/

For years I was having CPS with auras. The auras eventually stopped, and I still had the CPS. Prior to my RTLS I was still having my CPS w/o auras. But this time I was also having them in & out of sleep. I would be lying on the couch watching tv relaxing. About 2-3 hours later I would wake up with a bad headache. My family member(s) told me I had a CPS and fell asleep. This was the biggest change in my seizure pattern. It got to the point when I wasn't sure if I just feel asleep, or had a seizure then feel asleep.


I'd think about asking for a VEEG session to see what's going on. There may more going on. The more info. you can get, the more prepared you can be to deal with your seizures.
You should also talk about your VNS settings.

 

[Porkette]

Hi Valeriedl,

My seizures changed over the yrs. I started out having absence, then came complex partial and yrs. later aura and myoclonic seizures. My Epileptologist told me the seizures changed because I've had them so many yrs. and that in turn caused more brain damage.
I had a sleep study done along with an e.e.g. and e.k.g. and my Dr. found I was having seizures in my sleep and they would happen 1-2 hrs. before it was time for me to get up each day. You may want to ask your Dr. to do a sleep study on you. I started taking vimpat and that stopped the myoclonic seizures. I wish you the best of luck and May God Bless You!

Sue

 

[Pinkattitude]

My seizures came back when I hit perimenopausal phase (in my 40s). I was seizure free from my 20s until then. They started as small day-time seizures others would not notice unless they were speaking to me. Then my husband noticed I flailed my arm(s) a bit at night when I was falling asleep and sometimes in the morning as I was waking.

When I had a video-EEG done, they said I was having them from both sides of my brain which meant my old drug wasn't effective. They added another and I'm not mostly seizure free again (but probably won't drive again, sigh).

Hope they figure out what's up with yours and can help!

 

[Karenhanby]

I started having complex partials and now, as seen in my emu visit, I now also have absence seizures. I have seizures in my sleep too.

 

[Sabbo]

Seizures can change/increase in number/frequency over time. I've had Simple Partials since childhood. I had 2 or 3 Tonic Clonics when I was 14--none since. That is when the SPs were finally diagnosed as seizures. Approx. 16-17 years ago, I started having Complex Partials.

 

[CQ:)]

My seizures have changed over the last 38 years I've had epilepsy
When I was a baby / toddler I took tonic clonic seizures until I was 3 (then the seizures stopped)

When my seizures returned in 2002 when I was 24 I mainly took complex partials with an aura. Usually I didn't remember anything from the time I had the aura (which was a dream like vision & the feeling I needed to use the bathroom) until I came out of the seizure.

Around late 2009 I started doing weird things in my sleep as when I'd wake up in the morning things would be moved around or items would be in spots where they werent the night before & sometimes I was in different clothes. I also sometimes had a really bad headache so I thought I was having some type of partial seizure in my sleep. My neuro at the time told me he thought it was just sleep walking but I was sure it was more then sleep wlaking as Id never had issue with sleep walking before. When I saw an epiologist in 2010 to discuss surgery I mentioned to him the weird things going on in my sleep & he said from what I described he was 95% sure I was having partials in my sleep.

I had my surgery in 2011 & was 2 years seizure free until started having funny feelings again in 2013. A VEEG last confirmed Im having focal seizures, they aren't as often as the seizures pre surgery or as strong.
I get an aura still but it is different to what I had pre surgery as now I hear strange noise then after the noise is gone if I go to write something it will be gibberish. There have been a few times this year where I haven't done giberish after a seizure but other odd things which I intend to speak to my neuro about when I see him in November.

 

[valeriedl]

For the first few years my neuro messed around with my meds a ton. I have damage, if that's the right way to describe it, to both sides of my brain so I wasn't able to have surgery and that's why I got the VNS. I went from having about 20 seizures to 5 a month after we got my meds and VNS straightened out and it's stayed that way since then. Almost all are complex partials with a few TC's thrown in there every so often. I'm glad that my husband has been here to see me have the sleep seizures or I wouldn't even known at all that I'd been having them.

Thanks a lot everyone, this makes more sense now. I'm glad to know it's not just me that has had changes with their seizures.

 

[Sabbo]

My Complex Partials are very dangerous for me, as they occur w/o any aura. I am totally unaware that one has occurred unless someone witnesses them or i do something to myself or my surroundings.
I've severely burned myself during many of them. When I tried to work, other dangerous things happened. One morning , for example, I was at the train station, & the next thing I knew i was 'coming to' at the hospital. If another person hadn't been there to catch me , I would've fallen onto the tracks!