Epilepsy Diary

Wow have I been negligent in updating this blog! The good news is that it is largely because Stacy has been doing fantastic with managing her epilepsy. She is still taking 400-500mg Dilantin (500 around her period, 400 otherwise) and maintaining her diet, sleep and meditation regimen.

She still occassionally will have a small CP seizure now and then if she gets too stressed out or off track with her diet/sleep schedule, but they serve as pretty strong warning signs and she manages to get back on track ASAP.

It’s been 2 months since the last update. Stacy has been doing well. She has not had any tonic clonic seizures but she did have a couple of jerks here and there when she strayed too far from the diet and sleep regimen.

Currently, she is having problems with an irregular period, a pinched nerve in her hip and swelling/deadness in her right ankle/foot. She has woken up at night a couple of times complaining that her foot was cramping up, but she stretched it out and did not have further problems. She’s doing everything her doctors have recommended and the problem is slowly getting better.

I’m happy to report that Stacy continues to do well with her diet, supplement and sleep regimen. She has not had any seizure events since my report of same on the blog. She has stopped the once weekly neurofeedback sessions for now, but may resume them again in the future as necessary.

It’s been a while since the last update and that’s mostly because there isn’t anything to report (w00t!).

Stacy switched back from the extended release Dilantin to the regular brand name and she seems to be tolerating/metabolizing it much better. She hasn’t had any seizure activity since the last entry here.

She still goes for neurofeedback once a week and is maintaining her sleep regimen.

Stacy had a single tonic clonic seizure today. This one was very unusual for her though – it occurred at noon while she was out in public (waiting in line at a restaurant) with friends.

She fell and hit her head near the bridge of her nose – just under the right eyebrow – on the corner of a counter. Fortunately, she appears to have suffered just a mild abrasion from the fall.

Her friends called 911 and I met the ambulance at the ER. Her Dilantin blood syrum level was 5.1 – even lower than Sunday morning.

She had fully recovered from the seizure by the time the ambulance got to the ER, so she was released after getting her blood work back and pumping up her up with Dilantin.

We’ve talked to her doctors and will be switching back to the 400mg Dilantin proper instead of the time release Phenytek formula she’s been taking for the last month and half.

Stacy went status again last night. I administered Diastat, but it didn’t help, so I called 911 and back to the ER we went.

I had been visiting with friends in the evening (rare night out for me), so I’m not sure if Stacy took her evening dose of Phenytek (300mg extended release Dilantin). ER bloodwork showed her blood syrum level of Dilantin to be 6.3, so I’m guessing she missed her dose.

They brought up the dilantin level and she is now at home resting.

Stacy has only had about two small CP seizures since her TC last month. These CPs are very similar to absence seizures – very short duration and very short post-ictal period. She was back to normal from start to finish in about 15-20 seconds.

Stacy is continuing her EEG neurofeedback sessions once a week now (she used to go twice a week). The sessions are going well (she is able to improve on her scores more often than not).

Stacy had a TC yestderday morning at ~8:00AM. She had gotten out of bed around 7 and used the restroom (she started her period). She was outside on the back patio when she fell to the ground and started convulsing. Fortunately, she did not sustain any major injuries from the fall or from convulsing on the concrete patio.

She had been taking her 400mg Dilantin and maintaining her sleep schedule for the most part. Her diet the day before was not very good though. She had too much sugar and not enough protein.

The good news is that the seizure was a one-off event. I was able to get her to stand up and walk inside to the couch (while leaning on me heavily for support) while still post-ictal. I stayed with her and talked to her as she sat upright on the couch. Every time she started to close her eyes and turn her head to the right, I would engage her with questions and she would snap back to being alert. After about 10-15 minutes, she was no longer post-ictal and she managed to take 200mg Dilantin (she normally takes 100mg in the morning) and eat some scrambled eggs. She did great for the rest of the day with little to no soreness or lingering problems from the seizure until 8pm when she started feeling tired and a headache (so she went to bed).

She appears to be 100% today.

I can’t believe it’s been two months since the last update. Time is really flying.

Stacy has been maintaining her 400mg Dilantin, pseudo-LGIT diet, regular sleep schedule and EEG neurofeedback regimen – for the most part anyway. Some nights her sleep schedule slips and we’ve had some interruptions in the neurofeedback sessions thanks to Hurricane Ike.

She has been good about not overloading herself and keeping the stress levels down. She has only had two very small (1-2 second long) complex partial seizures during her period since getting out of the hospital back in June. Overall, she is doing really well these days.

Stacy weaned off the Keppra that she was given at the hospital a couple weeks ago and has been doing well. She also made it through a period without having any seizure activity.

At her first EEG neurofeedback session after returning from the hospital, her brain was very disorganized/unfocused (as might be expected). Two days later at her second session, she was back on track and managed to do better than she had done the session just prior to the June seizures. She is still training and making progress with the neurofeedback. Additionally, she has slowed down on her volunteer work and has been eating well trying to gain back some of the weight she lost.

Stacy noticed that she seems to have the most problems with morning seizures when she awakens from sleep early in the morning and then goes back to sleep. Something about transitioning from sleep to awake to sleep again just doesn’t work for her. So the few times that she has awoken earlier than she’d like, she went ahead and just got up whether it was 4:30am or whatever. So far, that strategy appears to be working as she did not have any seizures on the few days where she has done that.

Overall, I think things have calmed down considerably around here.