Oh poop

Stacy had a tonic clonic (TC) seizure yesterday morning. Fortunately, she didn’t injure herself, she recovered quickly and it was a single seizure (no clustering / repeats).

The seizure occurred around 5:50am. We had gotten out of bed around 5:30am as we normally do on a weekday. I knew right away that she was off as she had that look like she wasn’t really ready to wake up or fully alert. Anyway, instead of taking a shower like she normally does, she sat on the recliner to write in her journal. The convulsions lasted somewhere between 30 seconds and 1 minute. 20 minutes later, she was fully recovered from the post-ictal haze and up and about. She had almost no soreness in her calves which is unusual for her after a TC. She said she barely had any headache which is also unusual – in a good way I think.

The day before, she had spent hours walking around in the sun taking pictures for a local volunteer firefighter event. She says that she thinks she didn’t drink enough water and may have been dehydrated. She also didn’t take her mineral supplements last night though she did take her Dilantin. She was also a bit stressed out, as evidenced by what she was writing in the journal prior to the seizure, about some relationships with family and folks in the VFD.

She’s bounced back strong and seems to be walking on solid ground again.

Managing just fine

It’s been far too long since the last blog update. I apologize for that. The good news is that there hasn’t been any event that pushed this to be a priority.

Stacy has been doing fantastic this year in managing her diet, medication, sleep and daily/life schedule. She is a much stronger person today in avoiding sugary foods. She strictly adheres to her bed time sleep schedule – even when I have to stay up a bit later for one reason or another. And last, but not least, she isn’t overloading her daily schedule with too many volunteer projects / work / etc. (ie. stress).

She rarely has any seizure activity these days. I would estimate maybe one short CP seizure (they almost look like absence seizures, but they aren’t) per week (or every two weeks) while watching TV in the afternoon or evening. These very infrequent events only happen when she is watching TV and I suspect it has something to do with the TV putting her brain into a passive state.

At any rate, I did want to post an update for the people who had asked me about her. She is doing great. :)

What a difference a year makes

Stacy managed to go tonic-clonic seizure free throughout 2010! She’s gotten *much*, much better at managing her diet, meds, sleep and overall life/stress/schedule balance.

She still occassionally has a small CP seizure (maybe once a week or two). By small, I mean they are almost like absence seizures. Very short duration and post-ictal periods. Maybe 30-45 seconds from start to finish. They mostly occur in the evenings when she’s been sitting on the couch watching TV for a while.

Just to recap, Stacy is currently eating a pseudo-LGIT diet (she only limits her intake of simple carbs), taking 400-500mg Dilantin (adjusted from 400-500 and back as necessary) and getting 9hrs/sleep a night. She jumps on a small trampoline (~$40 at Academy) to help combat water retention issues which we believe exacerbate problems around her menstruation period. She also take a host of other pills that are mainly vitamins/minerals, but I don’t have a list of them on hand.

Seems to be working so far. Best wishes for 2011!

Half a year update

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.

No seizures, but hormones apparently out of whack

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.

Hanging tough

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.

Steady as she goes

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.

Too many potholes in this road

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.

Wouldn’t you like to go where everybody knows your name?

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.

Slow and steady wins the race

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).