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New to forums - questions regarding partial seizures

Sun, 10/29/2017 - 21:12
Hi there, I'm new to these forums, and was hoping someone could give me their opinion on some possible seizure activity that I may have been experiencing. I'm in my early 30's. I've had Epilepsy since I was 15 with only a handful of seizures the first year - Grand Mals and usually in my sleep or just after waking up. I've been controlled with Dilantin for over 15 years (tried to get off once at the beginning but it didn't work). I've had two episodes of toxicity with the Dilantin but thankfully was able to sort that that. All MRI, CT, & EEG tests completed when first had seizures (out of the blue) were fine with them leaning towards stress and lack of sleep as some causes or triggers. In the end I was diagnosed with Idiopathic Epilepsy. I check my dilantin levels regularly and they have been ok. So my question is I've been experiencing some odd things happen, again with no warning and am not sure really if it's a different kind of seizure or not, possibly partial or partial complex. What happens is: all of a sudden, I'm thinking of something or talking with someone and things seem to slow down, almost take a pause. I go to talk but I can't see to get the words out and in some instances I seem to take deep slow breaths with pauses or the last time (almost 2 weeks ago) it sounded like I was stuttering and trying to say something (mid conversation) but then my head started to turn to the left and upwards without me being able to control it. The weird thing is, is that I'm aware what is going on, but I can't stop it and this last one happened in front of someone and they called my name but I couldn't answer them (even though I could hear them). It's like everything is going in slow motion. When it's done I just try to shake it off, as I REALLY REALLY hate the feeling, but this past one scared me because of the head turning beyond my control and the stuttering. Doesn't last long either. Usually it's been that I just can't get the words out and have long silent pauses. I had two the same day, only the second one was with the head turning. To add on to these little episodes, in the summer I had what I hope to have been the worse nightmare EVER..but it could have been a seizure in my sleep. I was sleeping and dreamed that I started hyperventilating and I could not stop. I could not catch my breath, and I could not wake myself up. I was so so scared. When I was finally awake I noticed that I had wet the bed...SO very scary and embarrassing. I was very very tired and nauseous. So yes, I don't know what these are, if they are just something odd or actual seizures. With the mini episodes I hadn't been sleeping well and feeling off (always have a stomachache), stressed, and did have a headache that day and the next and also tend to happen at the end or just when my menstrual is done. It's all very scary for me because I haven't had a seizure for so long. I've got married, have young children, a job (that requires me to drive to see clients), and we live outside of town. I have an appointment set up with my doctor to see if I can get in to see a neurologist that specializes in epilepsy but I'm afraid they may take my licence away. With being a Mom I want to be there for my family and I am just generally scared. I'm also wondering if maybe I've built up a tolerence to the Dilantin and need a new medication. Sorry if this is a lot of information (or too much) but if ANYONE has any comments that they may think might be helpful I would really really appreciate it. Where I am, there isn't a epilepsy support group to go to and talk with people and I really appreciate any help anyone can offer. Thanks so much.

Comments

Hi there. I am new to these

Submitted by yecart on Tue, 2017-11-14 - 00:39
Hi there. I am new to these forums as well. From what I've read, I would definitely see a neurologist and have all the regular testing done. (3 day/ 3 nights of wires on your scalp... can't remember what that test is called at the moment). When I had THAT test done many years ago, I told my doctor at my follow-up appointment, "It figures I didn't have any seizures while wearing those wires for 3 days!" He responded, "You DID have seizure activity". So then I was assured that I don't always know when I have these episodes, but also realized why I always feel the way I do (like crap). I had a job that I loved, and was lucky enough to have compassionate bosses who let me have the time off when needed. (Those were the good ole days which are long gone). I'm here for you, and look forward to meeting other people who have the same struggles. 

Some of this sounds like

Submitted by Erinking1129 on Mon, 2018-01-01 - 23:18
Some of this sounds like possibly a seizure. I’m also in my early thirties with two young kids and currently can’t drive due to mine. I don’t think the neurologist can technically take your license. Mine just said he wanted me to go 2-3 weeks without a seizure before I resume driving. (I just had my first seizure months ago and we are trying to get them under control.) As far as the toxicity goes, wouldn’t having it happen twice maybe indicate that it may no longer be working as it should be? That or maybe it was just too high a dose? I’d definitely see a neurologist though. Good luck!

Hi i'm new to these forums as

Submitted by wilkins on Fri, 2018-04-06 - 15:40
Hi i'm new to these forums as well, I have had seizures since I was seventeen. I used to take Dilantin and Keppra both did not work well for me, You should talk to your neurologist about getting a sleep study done. I was in a stressful job and was having really bad seizures, one I almost knocked my tooth out. I've also wet the bed and woke up feeling very tired and sick. I think your story is interesting and if you ever need anyone to talk to I am here, I hope things get better in the future. 

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