I had been seizure free for almost two and a half years. Until Monday. You see, I decided I wanted to switch from one oral contraceptive to a stronger one since I was experiencing bleeding. Unfortunately, said oral contraceptive interacted with my seizure medication, causing it to metabolize too fast in my blood.
Stupid fucking brain. Did you really have to go on the fritz in the middle of the fucking night, freaking my husband the hell out? Twice? Was it absolutely necessary to incapacitate me so I couldn’t interact with my son? And, thanks to you, I’m left an emotionless blob for the next few days until my temporal lobes recover from the electric storm. I can’t feel a fucking thing, everything smells weird and the light is different. I feel like a sociopath - I could commit murder right now and not care. And I can’t go anywhere because it would be irresponsible for me to drive until I know my medication is working appropriately.
Plus, I bit my lip so hard in the throes of my seizures that my lower lip is now swollen and numb as if someone had given me a shot of novicaine. I have to put a hand under my chin when I drink in case something falls out. Plus, my language hasn’t totally caught up with my mind and I don’t feel anything at all when I laugh - it’s just social lubrication that means absolutely nothing to me right now except that I don’t have to explain myself if I act like I usually do.
Stupid brain. I don’t know why I haven’t replaced you by now. I hate you.
Thanks for all the well wishes. Things are slowly improving, though I’m a little scared to go to sleep. Guess I can’t avoid it forever, though.
I’m getting feeling back in my lip (slowly) and am also feeling the first glimmers of some genuine emotion. The only thing that’s really off-kilter still is my sense of smell. It’s really sharp, so I smell EVERYTHING. I normally have a really accute sense of smell as it is, but this is ridiculous. I can smell the soap on my hands even when they’re down at my sides and although I made my son dinner hours and hours ago, I still smell it way down the hall in our bedroom, which is at the opposite end of the house from the kitchen. Hopefully it’ll just keep improving - with no more seizures. At least I’m feeling a little more part of the world.
Ick. I just scratched my nose and almost got sick from the scent of the soap. Ew.
Fellow twitcher here. There’s nothing quite like being seizure-free and then having a breakthrough seizure. It’s so frustrating to have to reset the clock…
I have TLE. I’ve been seizure-free since May right now, and so far, so good. My longest seizure-free stretch before then was about a year, and man alive, it’s just totally freaky and disappointing when it happens. Not to mention that it can take a few days to really “reset” to normal. I know that with TLE’s complex partials, I’m not back to myself for a good 48 hours.
Stupid brain! I’d tell you to kick it, but it would probably just retaliate. Aaaand the more you avoid sleep, the more you’re likely to trigger more seizure activity. Remember the common triggers: sleep deprivation, skipping meds, blood pressure and blood sugar gone wonky, stress and so on.
Ugh. I’m in the midst of being switched to different anti-convulsants, and as I’m going down to the lower dosage of the old ones, the seizures are creeping back. They’re mostly the little “focal seizures”, but they still absolutely suck. I did have one convulsion, according to my mother, the week before last. It especially sucks as I was hoping I’d be able to start driving in January, as my last seizure prior to this one was in June.
If you need an ear to bitch to, don’t hesitate to contact me. Epilepsy sucks. The worst is the weird “after feeling”, waiting for it to go away. For me, I always feel really out of it, like everything is really weird and unfamiliar, and I just want to crawl into a little coccoon and hide out until everything feels normal again.
hugs I’m so sorry this had to happen. Again-epilepsy SUCKS.
This is exactly it. Everything smells too much, it’s too bright and I feel like I’m talking down a long tunnel. I can’t feel much - even physical pain doesn’t seem to get through until it’s really acute. I shredded the skin on the back of my heels yesterday while walking around because I’m still waiting for the physical sensation of pain to return. I forgot I was wearing shoes I typically find really uncomfortable and just kept walking until the skin had bubbled and torn off. It hurts, but only from a very great distance.
I’m so sorry for your recent setback. You said it - epilepsy sucks. Big time.
Aye… TLE makes it such that I’m totally confused and essentially in a fugue state. Before I had a reliable seizure response dog, I was likely to unlock the door and wander out of the house (office, theater…) and into the street. I’ve been bumped into by cars, I’ve found myself miles away from home with no clue how I got there. I’m usually unable to speak, with no memory of what happened and often a whole day lost, a completely shot sense of hearing and impaired word-retrieval ability. Be kind to your temporal lobe(s), ladies and germs…
The seizures themselves are no cakewalk either. They come with simple-partial seizure activity prior, which includes full-blown visual and auditory hallucinations. I’m one of the lucky ones who actually has a known cause for these (head trauma, with visible lesions/evidence on an MRI) as opposed to the poor bastards for whom these are idiopathic and who get diagnosed as schizophrenic or batshit insane first…
Wheeeee!
Thank the dagda (and Og and all his thousands of fat nephews) for antiepileptic drugs and their manufacturers. I never thought that some day, in my life, I’d ever thank drug companies, but I do. Boy, do I ever.
Fortunately mine aren’t THAT severe, but the weird smells, the confusion, the massive headaches (so severe I can’t even move my head from side to side), etc-all of that is present.
It doesn’t help that my sister seems to think I’m faking it. Little bitch. :rolleyes:
Bumping this as I spoke too soon-Friday I went to bed, and in the middle of the night, I had grand mal seizures, chewed the hell out of my mouth, and now missed two days of work. And what’s worse is, like I said, I’ve got that panicky, confused after feeling.
Shit, that sucks. I’m only just feeling normal and my seizures were last Monday morning. I’m sorry you had to go through that. Again. And again. And again. And the more you have at once, the longer it can take to recover. I still can’t feel part of my lower lip. Best of luck to you for a speedy recovery.
I hope you have someone to just be there if that helps the panicky feeling. For me, the worst thing I can do is just spend time by myself once I’m strong enough and my muscles have recovered enough to hold me up. I strongly believe that the only reason things are feeling more normal is because some friends dragged me out to dinner last night. Given that I’m currently unemployed and therefore a bit more isolated than I was when I was working, it was just what I needed.
I still live with my folks-yeah, I know, but after being diagnosed, it’s a blessing. Did I mention I must have rolled into the wall in my sleep, because my right eye is black?
Yikes. I’m glad you live with people you love - I think living with family is highly underrated in the States. Feel free to PM me if you need someone to talk to.
