Epilepsy Diary

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.

Stacy is currently in the hospital. She started having seizures two days ago and we took her to the ER. She was stabilized and we brought her home. Yesterday, she started having more seizures, so back to the ER. They were not able to stabilize her with the normal routine and she had a really rough day. I will be leaving shortly to go see her.

Wednesday

5:30AM – got out of bed to pee, came back to bed (never a good thing for her)
6:18 AM – complex partial seizure
6:42 AM – complex partial seizure
6:55 AM – complex partial seizure that generalized into tonic clonic (I called 911 at this point)
?? – enroute to ER she had 2 seizures in the ambulance (I don’t which kind) They gave her Bursed (sp?)
7:30 AM – arrive at ER
?? – tonic clonic seizure in ER (they gave her Ativan)
?? – Blood tests showed her Dilantin level at 13.8, she continues to have small (shot duration) complex partial seizures where her eyes open/flutter and she stops breathing for a few seconds. The ER nurses/docs don’t recognize them as seizures and think she has some apnea problem and shove a tube in her nose (not intubation, some sort of shunt device to hold the airway open) and put a bipap machine on her (blowing oxygen into her system).
?? – They perform a head CT which comes back clear.
11:00 AM – they give her a Cerebrex IV drip, all seizure activity stops shortly afterward and she has no further problems breathing. She is snoozing as peacefully as you can on a hospital bed with wires and tubes all over you.

I went home about 3PM and Stacy called me ~5PM saying she felt better and wanted to come home, so I went and got her. She walked out to the hospital with a bit of a headache. She felt a bit warm that evening (slight fever). She ate half an omelete for dinner and took her evening Dilantin dose and went to bed early.

Thursday

?? – I could have sworn she got up to pee and came back to the bed again, but I was so tired, I’m not sure if I’m remembering the night before.
5:48 AM – complex partial seizure (I’m extremely concerned at this point)
6:01 AM – complex partial seizure generalizes into tonic clonic (I call 911 again)
?? – She has a tonic clonic again right as we are at the counter in the ER (they give her Ativan)
?? – They don’t stick the tube in her nose or put her on the bipap, but give her an oxygen mask. She continues to have infrequent, small complex partial seizures like the day before.
?? – They take a chest X-ray (I never got feedback on the result, but I assume it was clear)
?? – Her blood Dilantin level is 22.7 (very troubling as that is the high end of the therapeutic range and she has never had seizure activity with that much medication in her system)
?? – they give her Cerebrex IV drip (this time, the small, complex partial seizures do not stop). This is the first time ever that she has been hospitalized for seizures and Cerebrex IV does not stop her seizures.
Noon – She is admitted to the hospital and moved to a room.
12:15?? – right after moving her from the ER bed to the room bed, she has a tonic clonic. They give her more Ativan.

I left the hospital to get some food and take care of a few errands. The nurse called me on the cell phone to tell me they moved her to ICU because she continues to have seizures.

~2:30PM – I return to the hospital and meet the neurologist. He asks for permission to perform a lumbar puncture (spinal tap) to test for meningitis/encephalitis. He also prescribes Propofol and Keppra (Levetiracetam) via IV. I have to leave ICU until 4PM (visiting hours are open during 2 hour windows).

4PM – I return to her room and she is shivering. Her eyes are not fluttering, so I think it is because she is cold (the room is cold like a meat locker and she is running a low grade fever). I ask the nurse for an extra blanket and she also adjusts the thermostat in the room. They had just started the IV drip of Keppra about 15 minutes before I arrived (after they finished the spinal tap).

She stopped shivering when the room warmed to a reasonable temperature. The nurse removed the exrta blanket and Stacy slept comfortably without any further (noticable) seizure activty. Her breathing was steady and she was calm.

I left at 6PM (end of visiting hour) and returned home. I just called the hospital and she has not had any further seizure activity last night or this morning. She is still running a fever. She is responsive now, but too drowsy/confused to hold a conversation – she drifts off to sleep. I will be seeing her shortly.

Prior to Wednesday, she had not had any seizures since her trip to the ER last January (~six months ago).