A Prolonged Seizure

Lisbeth during a recent ER visit. For someone with uncontrolled seizures, this is not an uncommon occurrence.

Lisbeth had a tonic clonic seizure at 10:30 yesterday morning that lasted almost 15 minutes. This is rare, and it is an emergency situation. Staff called the ambulance - by the time they arrived at Lisbeth's house, the seizure had stopped and she was doing some of her usual postictal behaviors. She had been given 1 mg of lorazepam at 10:00 for seizure aura, but it had not yet taken full effect. I advised by phone not to transport Lisbeth to the hospital since she'd had the lorazepam, was responsive, and her vital signs were stable. Lisbeth slept quite a bit after the seizure and was very cloudy. (One neurologist told us years ago that a tonic clonic seizure uses up the same amount of energy as playing a full football game. I believe it). Staff kept a close watch on Lisbeth for more signs of seizure aura, in which case they would have immediately administered another lorazepam. Lis is still very sleepy this morning, but is a bit clearer - remembering and talking about coming over tonight to have dinner with us. Lisbeth's big sister Kaitlyn and her husband Cory are bringing down fresh lobster from Islesford where they live. It's Lisbeth's favorite.
We think that this unusual seizure was due to the med changes that are in place, the Vimpat increase and the introduction of Cymbalta. Fingers crossed it was an isolated event, and Lisbeth will be able to enjoy her weekend. I am posting this video of a little girl named Jessica Lindgren having a tonic clonic seizure. Jessica lives here in Maine, is the same age as Lisbeth, and also has uncontrolled seizures. Her mother, Leslie Lindgren, participated in the making of this video about epilepsy back when Jess was just six. I think that it is important to see what a seizure looks like. There are millions of people in the world with epilepsy, and you may be called upon one day to help someone having a seizure. DO: Time the seizure. Keep the person who is seizing safe - cradle her head, or put a pillow beneath it, and turn her head slightly to the side. Loosen clothing, move objects that might bruise her jerking arms and legs. Speak softly and reassure her that it is almost over and that you are there. If the seizure lasts more than 5 minutes, CALL 911. Stay with her after the seizure ends - she may lose bladder or bowel control, or vomit. She will be very cloudy and will need assistance. DON'T put your fingers or anything else in her mouth!!! And don't panic - seizures are rarely life threatening.

The Magnet

Lisbeth's Beautiful Women Mandala which I'm in the process of using to design some fabric for future items to put in Lis's Etsy shop...

You may have noticed in photos of Lisbeth that she wears a little pouch around her neck at all times...

Let's see what's inside...

It's a heavy duty MAGNET!

This special magnet is used to activate Lisbeth's Vagus Nerve Stimulator, which is located in her chest, just above her heart. Lisbeth had the VNS surgically implanted in 2002 in the hopes that it would help decrease her seizure activity. It is set (by computer at her neurologist's office) to go off every 30-60 seconds or so, but if Lisbeth feels a seizure coming on, or has a strong aura, or actually has a seizure, the magnet can be swiped over the VNS to activate it at any time. This can ward off a seizure or lessen the severity of a seizure (you can see us using the magnet in the video in the previous post...). We think that it has helped a bit, although it is difficult to discern because Lisbeth is also on several anti-epileptic meds. It's a mixed bag...

Lisbeth with one of her loving and dedicated helpers, Heather D'Alessio. Heather is the same age as Lisbeth (they attended Brunswick High School together) and has worked with Lis through Independence Association since 2003. God Bless her!!!

The Line Pill

Garry and I planned to have dinner together with Lisbeth last night at her favorite restaurant, China Rose. She loves the Chinese food. I picked Lisbeth up from her house and we arrived at the restaurant a few minutes before Garry, who was coming to meet us on his way home from work. Lisbeth's staff informed me that they had given her 1 mg of lorazapam at 5:00 because she was complaining about her eyes hurting and having the scary seizure feeling (aura). While we were waiting for her Dad, Lis began to experience strong seizure auras. This sometimes manifests by her eyes darting upward, and out toward each wall (forgive me now, but my dark humor has kept me sane throughout my journey with Lisbeth) and this song comes immediately to mind. Lisbeth says she sees the lines, as in an ocular migraine. These unusaul auras started to occur for Lisbeth a few years ago, and we described it to her neurologist. He brushed it off and said that this was just anxiety, and probably a behaviorial thing. He'd never actually seen Lisbeth going through this. He always was impatient, in a rush, with one foot out the door. (For the record, we do not see this doctor any longer. In fact, he had his license suspended for drug addiction. Hmmm, could explain his impatience...) I have never taped Lis having an aura like this before, and last night I caught a couple of minutes of it on this video. Lisbeth's current neurologist has instructed us to give Lisbeth her PRN lorazepam when this happens - Lis is obviously experiencing some sort of neurological disturbance - not a full blown seizure, just the edges of one. Lisbeth calls the lorazepam the line pill, because we give it to her when she sees the lines. Can you imagine anyone suggesting that this is behavioral?

It lasted about 1o minutes before her lorazepam kicked in, and then Lisbeth was able to enjoy her dinner. Thank God for meds.