I’ve been off Keppra (anti seizure medication) completely since last Wednesday (6/13). However, I now have to go back on it because I woke up with a tiny bit of tongue bitten off (which is causing a speech slur especially when I speak in English, and hurts), and 2 parts in the inside of my cheek bitten.
I texted my neurologist, and he said that it may have been a seizure, so I should go back to taking it.
(Though I feel like I would feel it after I woke up if I had a seizure in my sleep... It's really exhausting... And my muscles usually feel so dead when I wake up from seizures... Or did I really sleep through it completely and for hours afterwards?)
And I’ve been feeling so well and able to get up in the morning and everything, much more energetic, able to do yoga... So this is really disappointing.
Because I got to see again how bad Keppra is for my day to day productive functioning (saw what it was doing to me when I first started it (I could not even sit up straight for a day or two), and when I cut down the dosage (I literally "woke up")). I now go back to my constantly drained and exhausted self...
I'm disappointed because I thought I was done with my Seizure Disorder days. But apparently not.
Though apparently there was no seizure activity in my temporal lobe when the EEG was done (to see if seizures there could be the reason why I have strange hallucinations with sleep paralyses).
I also tested negative for narcolepsy from the sleep study, which is both good and bad... Because now we have to go on another trip in trying to figure out why I am constantly so exhausted.
Did you wean yourself off the Keppra slowly? Sometimes, stopping too suddenly can cause seizures that you wouldn't otherwise have had.
If you did wean yourself off, how long were you doing OK on the half dose or quarter dose? You might not need as much as you had been taking at first.
If Keppra doesn't work well at any dose, remember that there are MANY seizure meds that you can try. Do you see an epileptologist--a neurologist who specializes in epilepsy? They know so much more than a regular neurologist.
Seizures can be very different, especially daytime and nighttime seizures, and seizure activity often doesn't appear on an EEG, unless it's happening at the moment of the test. It seems likely that the nighttime episode was a seizure, but only a specialist could really say for sure. I hope your tongue heals quickly! JH
I was on 2000mg right after surgery for a week or so, then cut down to 1000mg, then decreased to 500mg in beginning of April, then to 250mg on the 7th of this month (2 months later), then I stopped on the 13th. So it's been pretty gradual.
It's just hard to know if I even had a seizure or if I just randomly somehow bit both sides of my mouth (usually when I come out of a seizure, I'd have bitten just one side, because I was laying on one side, but if I had it in sleep, since I sleep on my back, I guess it could have been both sides...). But now as a precaution, I have to go back on it.
I see a neurologist who specializes in sleep problems as well as neurology, but before now, we thought my seizures were mostly over with. I guess if I'd gotten an EEG today or something it would have shown up and I'd have known for sure, but... Oh well. :(
Thank you! I think I have that bookmarked somewhere.
I know it is. Which is also why it's so disappointing, and I'm not sure how to react. Because it could have done so much worse, so much could have gone wrong... But it's the little things like this, which I should be thankful for, that it's little things like this, but I've been so excited to get off this terrible medication that "shuts down" my brain, so I end up disappointed.
I think I'll feel much better after I sleep through it, but for now, I'm just sad this is the last day I was going to be able to feel so light and "able" for once, and mostly just wasted it reading every TIME health magazine article ever online instead (effect of "waking up," with my executive function disorder kicking in) of spending it with friends or something.
Hi Hiro. Of course, you are disappointed. You want your old life back…perfectly natural. BTW…the tongues should heal quickly…lots of blood vessels. We have numerous doctors in my family! You have one thing in your favor…you are young. I firmly believe that in your lifetime…we will be able to regenerate brain cells. In the meantime…I will keep praying for you!