Seizure with flu like illness

You are not alone.  My 21 yr old daughter is experiencing the same thing.  She started having seizures when she was 18 months old.   They occurred when she was coming out of sleep and waking up.  When she was 17 she had her first awake episode.  They were tonic clonic, always in clusters of three, lasting about 4-5 mins total.  But with several years in between seizures.  When she was 18 they started happening about 7-9 months apart.  She started on zonisamide then they switched her limictal.  December 22nd she had three separate tonic clonic seizures within 12 hrs.  A month later she gets a head cold and has 5 seizures within four days.  Now a month later, the same thing has happened.  She has a head cold and has had four seizures with in a 72 hr period.  The characteristics of her seizures have totally changed too.  She went from biting her tongue, incontinence, extremes memory loss, soreness, and being totally wiped out, to only have the grand mal convulsions with no soreness, memory loss, no incontinence, and no biting of the tongue. She also has complained before the seizures of tunnel vision, nausea, bad taste, extreme headache, seeing a rainbow circling something.  Sometimes we get a warning and sometimes we don't.  We feel like her medicine has totally stopped working.  Her drs keep upping the limictal which doesn't seem to be helping.  And the topimax she has had some side effects from it.  She feels like she has lost her independence.  She is trying to go to school and work.  Everytime she leaves the house, I have " is she going to have a seizure?" Running through my brain.   I feel for you, she is living this same thing too.  

Hello Mathew,  while I don’t have epilepsy, I have been getting two variations of seizures since last October: type one - convulsions, lip and tongue biting, hair pulling, memory loss, confusion/disorientation, and tunnel vision; type two - stiff as a board, staring, memory loss, confusion/disorientation, and limb weakness. My primary doctor wondered if perhaps I was developing complex migraines, but when I told her I get the headaches after each seizure she ruled that out. For about 2 months (give or take a week), I was on lamotrigine but then developed an allergy to it (story of my life) and had to stop taking it. The lamotrigine doubled the amount of seizures I was having, and increased the violence/intensity of them. It got so bad that I experienced the longest seizure to date: it lasted for 45 minutes. About 90% of the time I can feel a seizure coming on and can prepare myself. Typically, the left side of my face will start to pull and twitch and then go weak, coupled with tunnel vision, limb weakness and disorientation. Other times, it seems as if my tongue stops working at the same time my brain goes foggy - and according to my Mom, that’s when my eyes go glassy and she knows a seizure has hit. Probably 2 out of 10 times, just before a seizure hits, I feel as if I’ve got the flu. I feel nauseous, I break out in a cold sweat and tremors start in my hands and legs. These past several months have been a trial in patience. I turned 32 in December, and have been on my own since I was 19 - this whole experience has been frustrating, as my independence has been curtailed because I can’t go anywhere without the help of family and friends. I know they mean well and only want to make sure I’m okay, but it’s so hard having to wait on others instead of just grabbing the car keys and going. I try not to get upset over that, and just keep praying that these seizures will stop. 

This might be NEAD. Lamotrigine is known to cause seizures to be worse/more frequent sometimes.Not a doctor, so just speculating.I had 'flu-like symptoms before I was hospitalised and had a seizure episode after other problems. I have not definitely been diagnosed with epilepsy, though, just told that it is 'probable'.