did I just have a seizure..?

[cpuerini]

I actually have no side effects at all from any of the meds, other than being tired most of the time. And my neurologist started me on lamictal so he can take me off the dilantin, but he didn't want to start taking anything away until my seizures have been under better control for a few months.

I also just had another seizure this morning apparently I sat up and twitched briefly, which I don't remember, then couldn't speak for 5-10 minutes(what type of seizures are these? I know obviously nocturnal, but I was diagnosed with temporal lobe epilepsy, and my neurologist said the area is near the communication center of my brain)...

this is the most frequent seizures I've had since being diagnosed, and I'm wondering if it could possibly have something to do with my boyfriend going away? I know that seems silly, but that's really the only thing I can think of that's different.

Last Sunday he was still here and I had two tonic clonics, but I thought that was because I had just picked up and started lamictal from the pharmacy, and they had prescribed me the generic version. (Another question, my recent tonic clonics have been not as violent as I see them described online, I don't bite my tongue or cheeks or usually get sore after. It starts with my right arm and spreads to my whole body, and I breathe really heavily. Only after the second seizure last week I woke up with a God awful headache and very nauseas, and couldn't stop crying because of the pain until I fell asleep)

I'm still new to this and it's really starting to depress me, I'm trying to stay strong but this is really hard....

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[cpuerini]

Should also mention all of these seizures have been nocturnal, either in the middle of the night or around the time I'm waking up

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[Nakamova]

apparently I sat up and twitched briefly, which I don't remember, then couldn't speak for 5-10 minutes

Those sound like complex partial seizures. A person having them can be aware, but semi-impaired (like not being able to speak).

All kinds of things can act as secondary seizure triggers. Stress is a big one, as is fatigue. And a switch to the generic form of a med can also be triggering if you're sensitive to small variations in med levels. Do you keep a seizure diary? That can be really helpful in looking for patterns or triggers. In addition to the ones mentioned above, triggers can be things like diet/metabolism (low blood sugar, electrolyte imbalance), food sensitivities (MSG, aspartame, gluten, caffeine), illness/infection/injury, hormone fluctuations (thyroid, estrogen), environmental triggers (flashing or fluorescent), etc. Some other good tips can be found here:http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

Since your seizures are nocturnal, maybe you could ask your neuro about making your nighttime doses slightly higher and the daytime ones slightly lower. Another thing to take a close look at is improving your sleep. If you don't already, try to stop using any screen devices at least two hours before bedtime. (Blue screens can interfere with the brain's production of melatonin a hormone that helps with sleep). You probably don't want to take anything else, but for some folks a magnesium supplement before bed helps with sleep quality too. (I recommend magnesium taurate since its well absorbed).

I hope you can find ways to get your seizures under control. You don't want your brain to get into the habit of seizing.

 

[cpuerini]

I'm going to start keeping a seizure diary to look for patterns, and I am wondering about low blood sugar because my boyfriend and I would have a late night snack before bed, only difference I can think of without him here.

I've been staying away from aspartame, cut down on caffeine, and I don't eat a ton of sugar but do more than I used to now..

My nighttime doses are higher.. this may sound dumb, but what do you do without using a screen device? I even read on a nook.. I take a migraine supplement that contains magnesium plus lots of other good vitamins, three times a day with a meal

Never heard of a brain getting into the habit of seizing? I was only diagnosed in October, so this is still new to me

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[Nakamova]

this may sound dumb, but what do you do without using a screen device?

Not a dumb question, I know it's tough to unplug from our devices in this day and age. But it's worth making the effort, even if you can only do it for the last half-hour before bedtime. I read old-fashioned books/magazines, or write things down. Or listen to music, eyes closed. Or do some tidying up chores. Whatever it takes to switch gears. You can also do progressive relaxation when you get into bed: basically you relax your breathing and your body, gradually tensing and relaxing every muscle in your body, starting with your toes and working your way up to your neck and face. That can use up a good 10 minutes! You might think of other things to do when your boyfriend gets back.

Never heard of a brain getting into the habit of seizing?

Each time the brain seizes, the abnormal brainwaves travel down a "path" in the brain. Each time that path is followed, it gets more hard-wired and "trampled". Over time it can go from a detour to a footpath to a superhighway based on that "trampling", and the brain becomes more likely to take that route. It doesn't happen to everyone or at the same rate, but the risk is there with uncontrolled seizures. For that reason, it's good to track your seizures to get a sense if they aren't escalating in frequency, duration, or kind.

 

[cpuerini]

That relaxation technique sounds like a good idea, thanks for the advice

I am trying to keep better track of my seizures, and I'm going to keep better track of my days period to try and find any other similarities since everyone's cases are so different

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[kaelieh]

I had a longer post with awesome information but apparently I wasn't logged in and it got lost, it's past my bed time and I need to get some sleep before work, so I'll be back later with more. But I wanted to get a quick two cents in because I felt it was important.

I disagree with most of the concerns over the number of medications you're on because you are definitely a special case. Status epilepticus is a life-threatening condition and since it took a day and four different medications after the default treatment for status of Dialantin and clonazepam failed the risks of withdrawing the medications and you going back into status outweigh the cons of you being possibly overmedicated for a some time while your doctor figures out your best course of treatment.

Since you're still having seizures I agree with your neurologist with leaving you on all of those medications even those it's definitely not the conventional approach. Status epilepticus is just too dangerous of a condition. Based on wrote you wrote it doesn't sound like polytherapy is the long-term plan at this point and I wouldn't think so either, but I would think that it would be the approach in the mean time until you get better seizure control and then slowly start to reduce the medications the hospital started you on one by one.

 

[cpuerini]

It's good to hear someone agree, I was getting slightly worried but yes that is the point. I had another seizure yesterday morning, so my Dr upped the amount of meds I take a bit more.. and yes he does say that he just wants to get the seizures under control first, then start to back me off of everything

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[Nakamova]

yes he does say that he just wants to get the seizures under control first, then start to back me off of everything

That would be ideal. But it's worth considering the possibility that the combo of 5 meds is making things worse rather than better. Either way, I hope seizure control happens sooner rather than later.