My daughter was diagnosed at 18 months with epilepsy, after having 2 seizures about a month apart, both about 10 minutes after waking up.
They put her on meds and she was seizure free for about 2 years, she then had a grandmal one morning while I was waking her up. They switched her meds. She was again seizure free for about 1.5 yrs. She started having seizures in her sleep (they only lasted a split second) they caught it while she was having a 24 hour eeg. She was seizure free again for a few months. Then she had another seizure about 5 minutes after waking her up, an absence seizure, it lasted about 20 minutes. She was fine until Monday when she had another seizure as I was waking her up, an absence one. It lasted about 25 minutes. She would go in and out.
But anyways here is my question... Does anyone have a child that only has seizures while waking or within a short time of waking or sleeping? Is there a name for this? Just thinking its kind of weird that it mostly happens while coming out of sleep.
Seizures upon waking
Hi Marian,
Great question. My son also had many of his seizures upon waking. I have read that 34% of people with epilepsy will have seizures upon waking. The reason is unknown, but there are many theories.
It has been discussed that one reason may be the type of brain wave patterns associated with sleep. In sleep, your brain goes through about 3 stages, dreaming, non-dreaming and waking. During sleep, the brainwave patterns will change on an EEG. For example, during non-dreaming sleep, the brain is in slow wave mode. As we are waking, the brain wave patterns change. Often your neurologist will do a sleep-deprived EEG to monitor the brain waves and see how much seizure activity there is. In this theory, it is believed that the person with epilepsy may have some abnormal amounts of time spent in each sleep cycle.
Here is something else to consider. I am reading a book called "The Challenge of Epilepsy". The book is extremely insightful and I will be interviewing the writer Sally Fletcher in my next podcast.
Sally was meticulous in keeping a journal of everything she did and ate to see if there was a pattern to her seizures. She said there were many factors that contributed to her seizures and she was eventually able to overcome them through neurotherapy, stress management, exercise, adequate sleep and other factors. Stress was her number one cause and she also had seizures around her monthly cycle.
Every person has a seizure threshold, and it is important to identify it. Here is a list of the most common things that can lower the threshold and cause a seizure. There are so many factors but here are some common ones: Emotional stress, excitement, boredom, fatique, lack of regular adequate sleep, eating junk food or skipping meals, low blood sugar, alcohol, heat/humidity, over-eating, allergies, menstral cycle, constipation, fever colds and infection, missed medication, too much medication, sensory stimulation etc.
I would suggest that everytime your daughter has a seizure, start writing down what happened in the two days previous and see if there is a pattern.
Watch for my podcast with Sally as she will go into this in great detail. I hope this helps.
Warmly,
Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com
Upon awakening
that's how my daughter (13 now) started. Started last summer in the early morning when she just woke up and we were cuddling together or she'd come and sit on my lap after just waking up. She would jerk, her legs and both arms sometime together for about 10 mins. Fully awake talking normal but lightly jerking unvoluntarily) Then it just slowly escalated to during the night, strong jerks that would wake her up (like 2am). She would still be fully conscious and awake and we'd just wait for 10-15 mins til it was over. Getting stronger and more frequent, she'd have normally 2 seizures per night every night. Had a couple drop seizures on her way to the bathroom. We then did an EEG, along with a 3 day video EEG (monitored day & night brain activity) and it seemed like the brain would spike when the level of sleep changed thru out the night. They eventually got worse until last Sept when she had a Grand-mal after experencing a regular jerking kind (terrible, very memorable, ER night.) It was the day after starting her on Lamictal. That day we found a wonderful Epileptologist and changed her to Keppra and she's been great ever since. Diagnosed her with JME - Juvenile Myoclonic Epilepsy.
How old is your daughter now? and what meds is she on?