Juvenile Myoclonic Epilepsy of Janz

  : :   Hello, I would like your opinion and any comments on my situation.  I am 20yrs. old and I was diagnosed with Juvenile Myoclonic Epilepsy of Janz when I was 16yrs. old.  I first began having seizures of all kinds when I was about 13 or 14yrs. old.  I had my first grand mal at 15yrs. old, in my sleep.  I thought that I had just rolled out of bed and hit my head, so I didn't worry too much about it.  I continued to have jerks and spasms and I knew something was wrong, but everyone that I told, both family and friends said that it was probably nothing.  It started to get really bad my junior year in high school.  I began to walk into walls, fall down, drop things, etc...  Then I had my first grand mal seizure at school at about 3:00p.m.  It was bad, my friends say that I stopped breathing for like 4 minutes, and the emergency crew said that it was a bad one as well.  The whole thing lasted about 45 minutes, I don't remember any of it.  What I don't understand is how I could be so sick and close to death, and then 2 or 3 minutes after waking up, I felt just fine,(with the exception of a massive headache and an overall 'wiped out' feeling).  
  : :   I went to the doctor the next day, and he found nothing wrong with me.  He accounted it to lifestyle because I was really into lifting weights and not getting enough sleep.  So I went thinking that it was all behind me, but I continued to walk into walls, drop things and so on.  About 5 months later I had another grand mal at school at around 8:30a.m., but this one wasn't nearly as bad.  Witnesses in the class room said that I shook for just a second and then I just went limp and fell out of my desk, cracking my head open on the floor. I laid there for a minute, then I shot up and began to walk around in a daze and speaking non-sense.  After that one, I went and had and EEG performed.  The results were negative for epilepsy and were perfectly normal.  Over the next 3 or 4 months I had about 10 to 15 grand mal and pettite mal seizures.  I went to a pediactric neurologists named Dr. Mary K. Bowan in Omaha, Ne.  She made me do a 24hr. sleep deprived EEG.  The said the results were classic for the disease JMEofJanz.  I was then put on 2000mg of Depakote 3 times a day.  The medicine worked, but when I went back for my 6 month check up, I had gained 40lbs. and my blood pressure shot up to 160/110, and I was never given an explanation for the blood pressure.  She just said that I was an the verge of a stroke at 17yrs.old.  I then went to a kidney specialists by the name Dr. Spry in Licoln, Ne.  He thought that might blood pressure might be from straining when I lift weights.  But he did say that to have Juvenile Myoclonic Epilepsy of Janz is extremely rare, so rare that he had never heard of it, and to have this kind of blood pressure problem at my age is also rare, but the odds of the same person having both problems would be absolutely astronomical.  He thinks that there may be a common denominator somewhere.  He then put me on 240mg of Verapimil once a day.  It has since been reduced to 120mg a day.  
  : :   I was told that getting a good night sleep is key when having JME of Janz, but I am having multiple side effects from the Depakote.  It keeps me up all night and then I sleep all day, no matter how hard I try, I can't keep a regular sleeping schedule for more that a week, and that is a contradiction.  I also have weight gain(in all I gained 80lbs., and I've managed to lose about 45lbs of that), memory loss, tremors, dizziness, and many more.  The Verapimil gives me vascular attacks if I try to strain myself to hard aerobically.   I have very detailed records and all I want is some answers that no one seems to want to answer.  Will the Epilepsy go away some day?  Where can I go to get some answers to all my problems?  Everything has gotten better since then, is that mean the disease is going away, or is my body finally just accepted the medicine, or what?  Is there case studies available for people like me?  
  : :   Thank-you for taking the time to read this and I would appreciate any and all comments to what is written above.  
  : Dear Matthew:
  : I am sorry to hear that you have juvenile myoclonic epilepsy.  Your case sounds very classically like what we call JME.  As you describe, the seizure events are usually when you are tired or coming out of sleep, and this is classic for the epilepsy type.  The usual medication for treatment is valoproic acid, which you were started on.  One of the side effects of this medication is that some people gain weight, as you have.  There are also hair loss and tremors, together with gastric upset in the early stages of treatment.  There is another medication on the market, Lamictal, that will soon be approved for single use in epilepsy.  This medication also works for JME.  You may want to ask your pediatric neurologist about this medication.  It has less side effects in some people.  Some pediatric neurologist will add lamictal to VPA.  Seizures are very frequently short and you can have one and in the very near future be as you were before the seizure.  What is important is that you get your seizures under control with minimum side effects.  You need to speak to your pediatric neurologist about this.  As far as the hypertension issue, this is not an usual side effect of VPA.  I am not sure why you would have hypertension with VPA.  Is there hypertension in your family, what was your urine analysis?  Do you have proximal tubular damage?  
  : The type of epilepsy you have usually does not go away with age.  You will likely have it the rest of your life.  However, every now and then we find that a person will go seizure free for years then we wean off the medication and they will be seizure-freee.  However, this is usually not the case.  I am sorry to tell you this fact.
  : I hope that you do well and live seizure-free.
  : Sincerely,
  : CCF Neuro:Pediatrics MD, RPS
   My urine, as tested, was clear and my Nephrologist
   said my hyptertension was not related to my kidneys, my Endocronologist found nothing to validate my BP problem.  Also, on Depakote I have been totally free of Grand Mal and myoclonic jerks, but still suffer
  from medicine side effects. Does the new medicine offer me the chance to be free of seizures as mentioned above?  Any suggestions on my sleep patterns? Thank you again for your imput!
Dear Matthew:
I am glad that your seizures are under control with Valproate.  One of the side effects of valproate is drowsiness, not one of your problems.  Ask your neurologist about changing the scheduling, maybe by changing when you take the medication you might enhance your sleeping schedule.  Yes, lamictal has been shown to prevent seizures.  There are reports of patients with JME under control with lamictal.  Maybe if you lowered your valproate dose and add-on alittle lamictal that might help with the sleep issue.  Only working with your pediatric neurologist can this be worked out.  You may want to pursue the idea that another blood pressure medication for hypertension control.  There are other calcium channel blockers.  These are the things that you need to work out with your neurologist and internal medicine doctor.  
Good luck with your hypertension and JME.
Sincerely,
CCF Neuro[P] MD, RPS