Epilepsy Diary

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.

Well, the signs had been there for the last week or so. Stacy had been jerking lately, not going to sleep on time, eating a little bit of sugar daily and on her monthly cycle.

Last night our 3 year old woke us asking for a glass of water at 4am after (us) going to bed at 11pm. Five hours of continuous sleep is not enough for Stacy. She fell back asleep and woke about 7:30am. Just before 8am, she was coming down the stairs from visiting the boys and had a TC seizure. She fell to the tile floor and I don’t know how high up she was on the stairs as I didn’t witness it happening.

In any event, she isn’t bleeding and nothing is broken. She actually had a fairly fast recovery from the seizure and is no worse for wear other than the normal headache, bitten cheek and superficial bruises.

Luckily, this looks to be a one off seizure and not a cluster. She did take an extra dose of Dilantin last night which I think helped, but she took her meds late (several hours past the normal time).

She was one day short of 3 months since her last TC.

I haven’t posted in a while, and that’s generally a good sign (ie. nothing to report). Stacy has been doing real well managing her Dilantin, sleep, diet, etc. She has not had any breakthrough seizures since last April (see last post).

I even managed to travel out of town on business for a week – twice – and she was able to manage the stresses that go along with that (handling our two boys all day long in the summer time [no school], in-laws, etc.).

I think she is starting to take ownership of her responsibilities in managing her health. She is no longer fighting the need for drugs and, in fact, recognizes when she needs to boost her dosage due to extenuating circumstances (period, insufficient sleep, etc.).

Stacy had been doing very, very well with her seizure control since last January. Rarely jerking at all and mostly during her period.

Unfortunately, Thurday night was a perfect storm of seizure triggers for her. We went to bed around 10:30pm after watching a rented movie (and hour and a half after her normal bed time). The movie got her a bit emotional too, so she was not centered/grounded when we went to bed.

Two hours later, our 3 year old came to our room to hop in bed with us. Normally, I would get up and carry him back to his room, but I have been suffering extreme pain in my back for the last couple of days and I just couldn’t convince myself to get up and try carrying him. He was sniffling and coughing pretty bad so I finally got out of bed around 2:30am to get him some cough suppresent and antihistimine. It started working shortly enough and we were all able to get some sleep.

Until 4:22am that is. Stacy had a grand mal seizure. I was hoping it would be a single event like last January, but she had another one at 5:00am. I administered her a dose of diastat, but I only had half the dose on hand that her neurologist had recommended. Unfortnately, she had another seizure fifteen minutes later at 5:19am – right at the threshold of when the diastat should kick in – so I waited a bit more to see if it would work. It didn’t. She seized again at 5:43AM so I called for an ambulance. She seized once more in the ambulance on the way to the ER and they administered some anti-seizure drug (I forget which).

Once at the ER, they hooked her up with Celebrex via an IV and took a blood test. Her Dilantin level was 6.3 (too low) even though, as far as I know, she was taking her pills diligently.

Fortunately, she came around a little before her blood work came back from the lab, so she did not have to be admitted to the hospital for observation. We were able to return home Friday right at lunch time.

She slept most of the day with a headache but got up this morning alert, no headache and full memory of Thursday night. The seizures have not appeared to affect her cognitively although her muscles are sore and she is moving around slowly.

Stacy has been doing real well with her sleep schedule, going to bed around 9pm every night. Not surprisingly, she went about 2 weeks without so much as a jerk. She did start having about 1 jerk a day during her period, but she took an extra Dilantin one day after we noticed the jerks and they stopped. I think the blood loss messed with the blood serum level of the drug.

At any rate, she did not have any seizures when I had to work over seas recently and that was a huge relief. She is doing much, much better!

Also, it looks like she is days away from wrapping up the affairs for her grandfather’s estate. That’s a whole lot of stress that we are happy to let go of.

Well, Stacy had been doing pretty well, but she had a TC/grand mal seizure Friday morning. Thurseday night was the 3rd out of 4 nights that she went to sleep around midnight and only got ~6 hours of sleep. I believe that is what triggered the seizure as she had been jerking a bit in the days prior.

The good news is that she only had one seizure and I did not have to administer Diastat or call an ambulance. She recovered fairly quickly and had a headache for 2 days and is still a bit sore (muscles), but otherwise thinking pretty clearly and still taking her meds.

This marks the first time in quite a while that a TC/grand mal seizure came solo and not in a status cluster. I hope that is a good sign.

She has agreed to get to bed by 10pm whether I’m with her or not (sometimes I’m working or playing on the computer and lose track of time).