Epilepsy Diary

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.

We had a rough night last night. Stacy had started her period yesterday with a heavy flow. She was feeling tired all day and went to bed early around 8:30pm. She had a grand mal/tonic clonic seizure at 3:23am while sleeping.

She had another one an hour later at 4:22am. She seemed to recover quickly after the second one and was breathing normally within minutes of the convulsions ending so I had hopes she was done at that point. No such luck however.

She seized again at 4:40am, so went ahead and administered 15mg Diastat (@ 4:47am). She seized again at 4:52am and again at 5:08am and I called 911 for an ambulance at that point.

I don’t know yet if she seized again after that. I was unable to accompany her to the ER (needed to take care of the boys first). I called the hospital and they said she is stable/recovering but wouldn’t disclose further details over the phone.

Stacy is managing fairly well lately. She still has an occasional jerk in the evenings around bed time (usually while watching TV on the couch), but otherwise has no seizure activity.

I’m hoping that when the boys start school in a week or so, we will all get into a more regular sleeping routine.