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Old 10-25-2013, 01:22 PM
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When you miss a dose of medication . . .


what do you feel like?

My daughter (15 and recently diagnosed with temporal lobe epilepsy) has missed a dose of her Keppra on two occasions in the last 1 1/2 months. She did not have a seizure either time, but both times she described feeling "bad" and "off."

The first time we didn't realize she had missed her meds until after the fact, but she was complaining all day that she didn't feel well, and had a couple of "dizzy" spells. At one point at the end of the day she lay down on the rug on her bedroom and said "I just feel weird."

Yesterday she forgot to take her meds in the morning before school. We figured it out early in the day but I couldn't get it to her until mid-afternoon. She told me she felt weird all day, and by the time I picked her up she had a raging headache and looked really pale. After taking her missed pill (and an Advil) she felt totally back to normal about 3 hours later.

Can anyone relate? And is there a neurological explanation for the feeling of being "weird" and "off"? It doesn't appear to be an actual seizure (her cognition and awareness are fine) - but so many people seem to report feeling crummy before a seizure hits that it makes me really curious about what is going on. Is something building up in her brain - a kind of pre-ictal "proto-seizure"?

I know that a lot of this is still not fully understood, but was wondering if anyone had clues about this. It's the kind of thing I would love to sit down with her neurologist and discuss over coffee, but I don't foresee that happening any time soon!
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Old 10-25-2013, 01:30 PM
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Maybe not over coffee, but bring it up for sure.

I've forgotten to take my Keppra and have accidentally taken double my dosage. When I forget, I may never notice. I take it ASAP. Usually I take it at the 9s. If I take it at noon, I'll take it next at 10:30 ish, just to try to ease it back in. I don't know if that helps, but that's what I do.

I have never had any problems starting or stopping a medicine. Ever. Valium, Ritalin, Depakote, etc. Don't know how or why I have never had problems, but the sudden stop may cause reactions like what she is having. There should still be enough Keppra in her system to handle the seizures, but that is nothing to bet on.
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Old 10-25-2013, 02:55 PM
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I've done that a few times. Is she allowed to have some stored at school just in case? My step daughter has narcolepsy and has a few pills they keep locked up for her in the counseling office.

If she has a cellphone she should set an reminder alarm. I did that while I was on vacation last summer since I was off my routine and busy with activities.

I have had the "off" feeling. I also get it if my meds metabolize to fast. Goes away when I take my next dose. It's a strong reminder how dependent on meds I really am. Sad but true.
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Old 10-25-2013, 04:12 PM
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Originally Posted by KatieCoy83 View Post:
I've done that a few times. Is she allowed to have some stored at school just in case? My step daughter has narcolepsy and has a few pills they keep locked up for her in the counseling office.
After this happened yesterday I gave her 2 pills to carry with her in her backpack so we avoid this issue in the future. This was something I meant to do before, and now I can see how important it is.

Originally Posted by KatieCoy83 View Post:
I have had the "off" feeling. I also get it if my meds metabolize to fast. Goes away when I take my next dose. It's a strong reminder how dependent on meds I really am. Sad but true.
That's how we both feel. It was a good wake-up call for her (luckily with no major consequences) about how important it is to keep on a strict regimen. It amazes me how quickly she starts to feel it!

Tonight she is off for the weekend for the first time since her diagnosis, celebrating a friend's birthday at the beach with a bunch of other classmates. She is staying with a wonderful family, long-time friends (they were the first non-family members I called from the hospital), and I feel very safe with her there. But I have to admit to being a bit nervous! Luckily it is going to be freezing this weekend at the shore, so I don't need to stress over her swimming!
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Old 10-26-2013, 04:11 PM
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I am rubbish for remembering my meds. I have a pill box, an alarm on my phone, a husband and I swear the alarm can go off and I will be tottering to dutifully take my pills and then *look a squirrel*.

Handily my Myclonics going manic if I miss a dose and I will go really world slurry. So I keep emergency pills in my purse. Also helps if I get caught out somewhere (I work evenings and if I am waiting with a person in distress I have spare meds).

Missing a dose of meds seriously increases my chances of having a t/c so I really do need to remember.

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Old 11-01-2013, 12:17 AM
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I have an alarm on my cell to make sure I take my meds on time and I try to always have an extra days worth of meds on me. But I still have missed dosages of my meds before.

I have my meds separated up into am and pm cases but the main way that I've done this is that the pill doesn't come out of the pill case so I don't see it's still in there until I take my next dose.

I've never really had any problems with missing one pill or one dose. Depending when I catch it I may take them then or I will just wait until my next dosage. Usually if it's over 4 hours then I'll wait.
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Old 11-01-2013, 10:56 AM
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I know the feeling she is talking about. I don't feel like I'm going to have a seizure, but I get this weird taste in my mouth. Not a seizure taste... just... I have no idea how to explain it. I also get the headaches on occasion. Sometimes I do start getting partials if I haven't taken a dose, but it seems to depend on the day. One day I missed one dose and was SURE I was going to have a T/C.
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Old 11-01-2013, 10:58 AM
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One other thing... missing that one dose I just talked about is what made me decide to leave the military (I am controlled enough that they gave me a choice). It's too scary to think that if I accidentally miss a dose under stress that I might have another T/C seizure. I had the last one when I was in Afghanistan and had to get evacuated - this is what got me diagnosed, so it's a scary thought.
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Old 11-01-2013, 03:08 PM
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Hi! I'm taking the generic for keppra xr. I never missed a dose, but taken it late when I'd forget. The way your daughter is describing it, feeling off, that's how I feel. Just weak and sometimes a bit dizzy, sometimes with a pounding headache. It is not a fun feeling at all. I'm prone to getting partial seizures then. I've noticed a HUGE difference when I take my meds and sleep on time. I set an alarm on my cell phone. And keep an emergency dose in my purse in case I forgot to pack it. My neurologist told me it makes no difference here and there if I do take my meds late but EACH time I've done that, it makes a huge difference for me. I say it's better to take it on time. It sucks but better to stay on top of it.
There was this one time I forgot to get a refill from the pharmacist and the pharmacy was closed so my emergency pills came into use. Though I try to usually have them picked up 1-2 days earlier.

Good luck with everything.
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