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Misread EEG/ JME medications

Thu, 02/19/2009 - 14:26
Hi I am a 21 year old female. I was recently diagnosed with Juvenile Myoclonic Epilepsy. Currently I am on 2000 mg of Keppra and 100 mg of Lamictal--and weening slowly down to a smaller dose of Keppra I will be down to 500mg in July. Since I started lowering my doses of Keppra I've noticed cognitive problems such as trouble carrying on a conversation, spelling and writing. I almost feel like I am on Topamax again. I've had cognitive problems going on medication but never going off of it. I've tried Zonegran,Trileptol, and Topamax also. Before I was diagnosed with JME I had a grand mal seizure. I went to the ER and had a sleep deprived EEG the next morning. It showed abnormal brain waves. The neurologist diagnosed me with tonic clonic nocturnal epilepsy and started me on Topamax that day. I later learned about a year later (this December) that the EEG was misread. I was having abnormal sleep waves NOT brain waves due to sleep apnea (which I also did not know I had until this December) my oxygen level was dropping down to the 70's at night. I underwent a week long EEG and had no seizures except for when I was exposed to strobe lights and when I was younger I had trouble holding on to things in the mornings due to spasms. Photosensitive + spasms in the morning = JME. I will have to be on medication for the rest of my life but only a small amount (hopefully) before I had the 5 day EEG I was on four. Has anybody had any trouble going off of Keppra? And if you have every had a Neurologist misread an EEG. Let me know what you did about it/ your experience. Thank you!

Comments

Re: Misread EEG/ JME medications

Submitted by kncarmichae2 on Sat, 2009-02-21 - 14:14
Thank you very much to both of you! I called my neurologist and he said it was "normal" for me to be having "withdrawl" effects with the keppra..ahhh you just can't win with these medications. They are going to call me back this week and see how I am doing I will ask about the Keppra being a better choice for JME considering they are taking me off the Keppra so I can just be on Lamictal. Sounds like that's not such a good idea. I am sleeping with a CPAP for my sleep apnea and I feel sooooo much better I don't wake up with awful headaches in the morning and I don't end up napping 6-8 hours of my day away.

Re: Misread EEG/ JME medications

Submitted by killin on Sun, 2009-04-12 - 15:45

my daughter(11) was just had her first EGG and had a tonic seizue.  She had never had one that anyone had seen The doc. wants to start her on Lamictal.  We are having a MRI tomorow.  ARe their any other test we can do?  They say she has JME.  I just want to be sure.

 

i am scared 

kk

my daughter(11) was just had her first EGG and had a tonic seizue.  She had never had one that anyone had seen The doc. wants to start her on Lamictal.  We are having a MRI tomorow.  ARe their any other test we can do?  They say she has JME.  I just want to be sure.

 

i am scared 

kk

Re: Misread EEG/ JME medications

Submitted by dainty on Sun, 2009-04-12 - 20:24

 Hi ** Hugs and hang in there** JME one of the "Better" Es to have.  IF your daughter only has Grand mals, and IF she is a JME, she SHOULD : ) do very well on Lamictal.  My 19 yo son is in the same condition and lamictal a really good drug.  Hes on 375 a day.  Hes 5' 11  140 lbs.

I know its a scary time but please do what you can to educate yourself on JME aka JANZ syndrome.  If you need anything, please just contact me.  Both my kids JME.

Be well and good luck*

joan*

My 16 yo daughter posted a video on YouTube. She's discussing her dealing with E. Its not an academy award winner but I thought it funny, sad and I'm just glad she did it. Its called Epilepsy and me

http://www.YouTube.com/watch?v=Pa1wWCzhoi

http://health.groups.yahoo.com/group/JuvenileMyoclonicEpilepsy/

Son lamictal 175 2x 19 Grand Mals - Stable Daughter keppra 750 16 Juvenile myclonic - Not stable yet Both had first issues at 15 - Both JME - gotta love puberty : ) * Both dealing with the nuances that come with it*

 Hi ** Hugs and hang in there** JME one of the "Better" Es to have.  IF your daughter only has Grand mals, and IF she is a JME, she SHOULD : ) do very well on Lamictal.  My 19 yo son is in the same condition and lamictal a really good drug.  Hes on 375 a day.  Hes 5' 11  140 lbs.

I know its a scary time but please do what you can to educate yourself on JME aka JANZ syndrome.  If you need anything, please just contact me.  Both my kids JME.

Be well and good luck*

joan*

My 16 yo daughter posted a video on YouTube. She's discussing her dealing with E. Its not an academy award winner but I thought it funny, sad and I'm just glad she did it. Its called Epilepsy and me

http://www.YouTube.com/watch?v=Pa1wWCzhoi

http://health.groups.yahoo.com/group/JuvenileMyoclonicEpilepsy/

Son lamictal 175 2x 19 Grand Mals - Stable Daughter keppra 750 16 Juvenile myclonic - Not stable yet Both had first issues at 15 - Both JME - gotta love puberty : ) * Both dealing with the nuances that come with it*

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