Complex Partial (3 in one week)

[jade05]

I was diagnosed with complex partial epilepsy a while ago. I see a neurologist at the local hospital but he never seems that interested in my problem. I appreciate that there are people with much more serious epilepsy but mine is serious to me. When I have one it can last about 5 minutes. Luckily my husband is usually there to try and wake me up or stop me from what I am doing. I do the strangest things like tidying up or getting ready for bed when we are due to go out during the day. I have now started sleep walking and go downstairs and strangely put out everything for breakfast. I haven't actually tried to cook yet thank God. After my seizures, I am really ill with a terrible headache for hours afterwards. It really takes it out of me, my eyes go up into my head like I want to sleep and sometimes I have to go to bed and sleep for hours. I am on lamotrigine but probably not a high enough dose.

 

[valeriedl]

Sometimes I'll go weeks without having a seizure or I might go only a few days. Many people are like that.

I've done some pretty odd things during seizures too. I've looked for people in the house who weren't there, but I swear they are. Changed my clothes. Put my robe on instead of my coat if we are going somewhere. Once at the grocery store I walked down the aisle just grabbing random things off the shelves putting them in the cart. I can keep the list going.

I try to stay away from cooking in the oven or on the stove if I'm alone, I'll do it with other people in the house though. Once when I was cooking on the stove the smoke alarm went off and my husband came into the kitchen to find me sitting on the floor with smoke pouring out of the frying pan.

It's normal to feel like that after a seizure. I'll have a headache for hours too and I'll usually sleep all day the next day.

You might need to be on a higher dosage of lamotrigine or possibly a different medicine. It took a few years for my neuro to figure those things out for me.

If you're not comfortable with this this neuro is there another one that you can see? I like my neuro very much. I was seeing his nurse practitioner every few visits when I first started seeing him however and she was horrible. I would tell her what my seizures were like and problems I was having but she'd say that's not what was going on - SHE knew what was happening, not me! Even though I had my mom and husband at the visits to verify what I was saying was true. Once I blew up in the office, literately yelling! I told them that if I ever had to see her again that I was going to find another neuro. Since I did that I haven't seen her again. I've had other medical conditions too, not related to epilepsy, that I had to go to a few different drs before I found one I liked.

 

[jade05]

hi Valeried, thank you so much for replying to my post. It made me feel that I am not alone with this epilepsy. It does make me feel very isolated especially with people I know, family, friends - none of whom could possibly understand the enormity of this illness that we have. I also feel ashamed to tell people when I have had a seizure, I don't know why, it just makes me feel embarrassed. I wonder if the same relates to you?

 

[Frink]

In February I stopped drinking coffee, in August I had a simple partial seizure and when it was over I went into the kitchen and brewed a pot of coffee and picked up my 6 cup a day habit just like I never quit.

10 days later I am sitting at my desk and I look down at my cup of coffee and say to myself, "um, doofus, you stopped drinking coffee 6 months ago!"

 

[Nakamova]

Hey jade05, it's normal to feel embarrassed by seizures, I think we all feel that way from time to time. But if you feel up to it, it might be worth trying to educate the people around you about what can happen during a seizure. If you are matter-of-fact about it, hopefully they will take their cue from you and be matter-of-fact as well.

And if the seizures are escalating, definitely let your neuro know. A tweak in dose may be all that's required to keep them in check.Do you keep a seizure diary? That might help show if there are particular stressors or factors that make your seizures better or worse.

 

[CQ:)]

Hi Jade

You are definetly not alone .

I had surgery in 2011 to help with my seizures but before my surgery I took a lot of simple / complex partials. With my complex partials I would lose awareness & wouldnt know what I did unless there was a witness & they told me.

I too used to weird things in the middle of the night which didn't start until around 2009, I'd wake up in the morning with things in odd spots, clothes pulled out of my wardrobe or id have different clothes on. I'd often also wake up with a bad headache.
I mentioned it to my local neuro in late 2009 (the time he mentioned surgery) & he said it was just sleep walking, I disagreed as Id not sleep walked before & the headache afterwards didnt feel right. I had to see an epiologist in mid 2010 to discuss surgery & mentioned to him the weird things going on in my sleep, he said he was 90% sure I was having partial seizures in my sleep. It sounds crazy but even though knowing I was having seizures in my sleep was scarey I was happy to get an answer lol.

As I mentioned I had surgery in 2011 to remove scarring on my left temporal lobe, the surgery went well & I was 2 years seizure free. I started having 'funny feelings' again in 2013 which the neuros confirmed were focal seizures. The seizures are more like simple partials as I am usually alert & don't do anything too bizarre apart from trouble speaking or write in gibberish.

I just moved into a new place 2 days ago & my work is meant to be moving into a new office this week so there is a little bit of stress in my life at the moment which means more seizures & a few weirder things (I recently decided to have a shower at 3am, luckily I realised the time before I jumped the shower). Once the moves are out of the way &things settle down I hope things settle down for me.

 

[Porkette]

Hi Jade,

I've done some strange things when I have my complex partial seizures. Often I will get up and wander around and not even realize it until the seizure is over. A few times at work (public school) I walked out of the classroom and when I came to I found myself in another teachers classroom and everyone was looking at me like "What are you doing here?" One thing that has really helped reduce my complex partial seizures is cbd (medical marijuana) also before I started that the drug Diamox really worked good reducing the seizures. Just like you I get rotten headaches that last for hrs. but then I started cold water therapy which is putting a cold washcloth on your face and back of your neck 3 times a day at the same time and anytime you start to feel a seizure begin. The cold water calms the neurons down and has stopped many of my seizures and it also works great stopping my headache. If you aren't happy with your neuro you may want to start seeing an Epileptologist I have found these Drs. know how the treat my epilepsy the best and I take the least med. I wish you the best of luck and May God Bless You!

Sue

 

[valeriedl]

I also feel ashamed to tell people when I have had a seizure, I don't know why, it just makes me feel embarrassed. I wonder if the same relates to you?

At first I was embarrassed to tell people I didn't know or hadn't seen in a long time that I had epilepsy. I'd run into them in a store and they'd ask me where I was working and living and I'd tell them I have epilepsy had to stop working, not able to drive and had to move back home with my parents because of all this. It was embarrassing to be in my late 20's and still living at home, I'd wouldn't know what they'd think of me. I am married now living with my husband but I still hate, not embarrassed though, telling people that I'm not working and can't drive.

I was also scared to tell my family that I had seizures when I was first diagnosed with epilepsy. I was having seizures left and right, at least 20 a month but if there wasn't someone there to see me have it I usually didn't know I'd had one so I could have been having more. There were times that I'd have a horrible headache, and that would usually happen after a seizure, so I figured that I did have one but I'd never tell my family about it. It wasn't till I realized that I needed to let my neuro know that I was having the same amount of seizures or more a month instead of letting him think I was having less. If he thought I was having less then he may think things were getting better and he might be able to decrease or even take me off of some of my meds which wouldn't be the right thing to do.

Luckily my parents wanted to know what was going on and would come to my neuro appts with me so they could learn more and they'd also be able to answer some of the questions that he had that I couldn't answer. The guy I had been dating when I was diagnosed with epilepsy didn't do this or even seem to want to, needless to say the relationship didn't last very long. I wasn't upset about that at all because I'd lost a ton of memory after my first seizure and didn't even know who he was! My memory is still bad, I can go on with a list of things that I don't remember that I can't believe I forgot.

I started dating my now husband a year after I was diagnosed with epilepsy and had my first seizure about two weeks into the relationship. It was a pretty bad one and I had to go to the ER. My parents thought for sure he was going to stop dating me because he saw what he was going to have to live with if he did. He said he wasn't going any where and started to come to my neuro appts so he could learn more. I know he's scared any time I have a seizure but his worst fear is that I'm going to come out of one and not know who he is like I did with my boyfriend.

It does help to try to educate people around you as much as you can. If they ask me a question or are worried about something I'll usually put a post about it on here. I might find out that it's normal for that thing to happen, a good bit of times they're surprised that it is and I'm not the only one out there it happens to. A good bit of the time I get some advice about it too.

 

[jade05]

Thank you to everyone who has replied to my post. It means so much because I don't feel alone anymore. Whenever I have told people I have epilepsy most of them only know about the seizures where people convulse on the floor. Earlier, Valeried suggested I change my neurologist but it isn't easy in the UK because the vast majority go through the NHS which we pay into all our working life. It's compulsory here to pay into the NHS. Yes, my neurologist doesn't seem to be interested in my illness. I think he has far more serious epilepsy patients but the illness is serious to me and all of us who suffer from it. I sometimes wonder if I have the start of dementia with these blank out episodes.