Epilepsy Diary

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).

It’s been over 3 months since Stacy last had a seizure. She has been taking her Dilantin, vitamins/minerals and neurotransmitter supplements diligently, eating well and sticking to her sleep routine fairly well (she has gone to bed an hour late here or there). She has also been having good sessions at her twice weekly EEG neurofeedback appointments. They are increasing the difficulty on her and she is still performing better each consecutive session. I am hopeful that it is starting to “click” for her.

… when I check on this blog diary and realize how long it’s been since I had anything (seizure activity) to report.

Stacy’s menstruation period appears to have gotten back on schedule. She is still taking 400mg Dilantin daily and using the Breathe Right strips. She’s been very diligent about getting to sleep by 9pm (sometimes it 10pm - but no later). She continues to get EEG neurofeedback training twice a week too.

[Fingers crossed, knock on wood, etc.]It appears to be working because she hasn’t had any seizure activity since her last trip to the ER back in January.[Fingers crossed, knock on wood, etc.]

Stacy started her period really early. Hopefully this is just a one-off event as a result of her recent seizure activity and she returns to a regular schedule. She did not get to take her Pamprin beforehand as a result (as recommended by Dr. Andrews).

Still, she hasn’t had any seizure activity thus far. She upped her Dilantin dose to 400mg/day (from 300mg/400mg alternating every other day) since her last cluster of seizures. She also started using those Breathe Right strips at night and I think that is making a difference in her quality of sleep (I don’t notice her “funky breathing” as much now).

Stacy had several seizures today:

1. TC @ 5:38am
2. CP @ 6:24am
3. TC @ 7:02am (I called 911)
4. TC @ 7:15am
5. CP in ambulance ~ 7:40am
6. TC in the ER ~ 8:15am

She finally stabilized after an Ativan dose and Cerebrex IV. Blood work showed her Dilantin level to be 9.6 on arrival the ER (which is just under the lower bound of the therapeutic range). She also had slightly elevated sodium levels but otherwise pertty normal blood result.

She got to bed around 11pm last night and woke up once at around 2:30am when I had to attend to our youngest child who needed some cough medicine. It’s been roughly a month since her last seizure and she was again just coming off of her monthly period.

She may or may not have cheated on her diet yesterday - I wasn’t with her for breakfast or lunch and she went with the kids to a kolache/doughnut shop in the morning and a fair/carnival in the afternoon.

Fortunately, she recovered sufficiently to be released from the ER (and didn’t have to be admitted to the hospital). She is now resting peacefully.

… call 911.

Stacy had a single TC seizure this morning. Unfortunately, she was already out of bed and standing by the kitchen sink when it happened. I didn’t witness it, but I think she fell forward, slid down the edge of the counter-top and eventually fell backwards and hit her head on the tile floor.

She had a lemon sized welt on the back of her head, so I called 911 and took her to the ER to make sure there wasn’t any serious injury. Fortunately, her Cat Scan came back clear and she recovered from her seizure really fast. She is up and about and none worse for the wear except for a headache.

I’m encouraged that this was a one off seizure and not a cluster like the last few times she had a TC. She also recovered much quicker from this one than she usually does from a single TC event.

As far as why she had the TC, she was on her period, she had been going to bed too late fr several days in a row (again! *&%*($%)%&*) and she was a bit anxious about wrapping up a project she was working on. Her Dilantin blood level at the ER was 6.8 which was a bit low (but she had been taking her pills as directed).

Stacy has made it through her last two periods without a TC (or status cluster). She has had the occasional CPS/jerk during her period, but it appears that the increased Dilantin level is doing the trick.

Stacy is still having twice weekly EEG neurofeedback sessions. We are hopeful that the Dilantin will continue to provide short term seizure control and the neurofeedback will kick in and provide long term seizure control (without need for Dilantin or other drugs).

Today, we visited with Dr. White and got the results of Stacy’s QEEG (brain mapping). As Dr. White put it, “not good!”. Stacy was exhibiting way too much delta and theta activity and not enough alpha and beta. The theta activity is centered above the thalamus. Dr. White said she really didn’t understand how Stacy was even functioning because her brain activity was so far out of whack.

The good news is that Stacy has not exhibited any seizure activity since her status cluster that sent her to the hospital at the beginning of the month.

She started regular neurofeedback sessions a couple of weeks ago to hopefully normalize her brain wave activity. She has upped her Dilantin intake to alternating doses of 300mg/400mg daily and it appears to have controlled the infrequent jerks/partial seizures that she tended to have just before her period. She started her period today and we are hopeful that she will avoid any more TC clusters (the last few occurred around her period).

Well, Stacy aspirated on her vomit (on the ambulance or in the ER - it’s not clear to me when it happened) and had to stay in the hospital overnight with tubes in her nose and mouth sucking fluid out of her lungs and stomach. She is recovering at home now and not in danger of contracting pneumonia.

Mentally, she is really tired of having seizures and a bit depressed/bummed out about the latest episode. She does, however, remember everything she was conscious for and is able to think clearly.

They pumped her sky high with the Cerebrex/phenytoin at the hospital, so she was suffering from a bit of “Dilantin toxicity”, but that is abating now and she is feeling better. The hospital neuro recommended she start taking 400mg Dilantin every other day (alternating with the 300mg Dilantin she was taking). She is definitely going to do that.

We also called Dr. White’s office to see if she could start neurofeedback again (she stopped some time ago because the technician they had quit to resume graduate school). They have a new trained/certified technician and we went today to get an initial “stabilization” session in. The tech said that Stacy responded really fast to the system today.

She is scheduled for a QEEG tomorrow to set a baseline for where she is at right now and chart a course for the neurofeedback sessions to come.