juvenile myoclonic epilepsy

[dustmansam]

I have reecently been diagnosed with JME after my first epilepsy diagnosis in 1982. My meds were changed to depakote, which I have been on a long time, and 1500 mg keppra 2 day. So far my results have not been good. I seem to be averaging a seizure about every 3-4 weeks and my pattern has changed enough to make me unreliable to do anything. My questions, anybody have a more positive experience with keppra and JME and if keppra continues not to work, what other med possibilities are there for JME. thanks

 

[Porkette]

Hi dustmansam,

I'm sorry to hear that you are having myoclonic seizures. My neuro put me on vimpat and the myoclonic seizures stopped. When I was on Keppra the drug gave me a hot temper and also increased my seizures. Another thing I have been using is the medical marijuana (CBD) and I'm amazed at how that has reduced my seizures a lot.
If you haven't had a sleep study done you may want to have one done along with an e.e.g. and e.k.g. this is what my Epileptologist did and found I was having seizures in my sleep 1-2 hrs. before I woke up in the mornings. If you notice that you feel more tired in the morning when you wake up this could be the problem also. I wish you the best of luck and May God Bless You!

Sue

 

[dustmansam]

I have had a sleep study in the last 9 months and that was clear. Do you use a cbd oil, and if so which one. Interesting to hear about your experience with keppra, my neurologist is beginning to think topiramate.

 

[Porkette]

Hi dustmansam,

I'm glad to hear that your sleep study was clear. Yes, I do use the cbd oil I buy the extra strength mouth spray you can buy it on line at healthyhempoil.com, but before you do that check with your pharmacist to make sure the cbd won't interact with any seizure meds.
What I like about the web page I use is they will mail you the cbd and if you don't like it they will refund your money within 90 days. I get the mint flavored mouth spray.
If you want to find out the best seizure med for yourself ask your Dr. to do a DNA test you that will show the enzymes in your liver along with your body chemistry and they can match that up to the best seizure med with the least side effect. This is what my Epileptologist did with me after trying over 10 different seizure meds. They finally found I out I was drug resistant to all seizure meds on the market right now.
Wishing you only the Best of Luck and May God Bless You!

Sue

 

[Nakamova]

hi dustmansam, just wanted to welcome you to CWE.

 

[Freda]

Hello and welcome dustmansam.
My recently diagnosed daughter (33) is taking Keppra 2750mgs per day and so far she hasn't had any Tonic Clonics but still has the occasional partial, for which she takes one Clobazam 10mg tablet after each episode. She's seeing her neuro next month and will possibly have lamictal added to try and keep the partials at bay.
She does have emotional days now and then where she can't stop crying but is hoping that will fade once her brain gets used to the meds.
She's been on Keppra for three months now and the dose has been constantly increased, so just as she settles with a dose she has another increase and the crying starts all over again. She's happy the seizures have stopped and wants to give it a good trial but, I suppose like many people with E, she says she never feels like she did before diagnosus and the drugs.

 

[dustmansam]

I dont know if this is still a live thread, but I have been put on topirimate and plan on weaning the keppra starting mid December. No seizures so far, but the side effects have been fairly severe. My question, of other peoples experiences, do the side effects lessen like the neurologist has suggested they will. Will they lessen when the keppra is out of the equation. Feeling like a science experiment.