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Misread EEG/ JME medications

Thu, 02/19/2009 - 14:26
Topic: Medication Issues
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 dainty on Fri, 2009-02-20 - 20:54

My 16 yo daughter JME as well. Myoclonics, daily and 1 grand mal.  Just dx this last year.  Our Drs have said it heredity, genetic.  ALso those spasms in the morning? Myoclonic seizures and very normal with JME.  Morning a very normal time for them as well.  From what our Drs tell us lamictal can make those spasms worse and that keppra is the drug of choice with JME.  The keppra alone "should" be enough to solve your issues.  Sleep well, eat a healthy diet, exercise, reduce stress and take your meds.  You should do well *

 I wish you well.

joan*

Son lamictal 150 2x 19 Grand Mals Daughter keppra 1000 16 Juvenile myclonic Both had first issues at 15 - gotta love puberty : ) * Both dealing with it* Now finding all the lil nuances that go with it* Live, Laugh, Love

My 16 yo daughter JME as well. Myoclonics, daily and 1 grand mal.  Just dx this last year.  Our Drs have said it heredity, genetic.  ALso those spasms in the morning? Myoclonic seizures and very normal with JME.  Morning a very normal time for them as well.  From what our Drs tell us lamictal can make those spasms worse and that keppra is the drug of choice with JME.  The keppra alone "should" be enough to solve your issues.  Sleep well, eat a healthy diet, exercise, reduce stress and take your meds.  You should do well *

 I wish you well.

joan*

Son lamictal 150 2x 19 Grand Mals Daughter keppra 1000 16 Juvenile myclonic Both had first issues at 15 - gotta love puberty : ) * Both dealing with it* Now finding all the lil nuances that go with it* Live, Laugh, Love

Re: Misread EEG/ JME medications

Submitted by tonialpha on Fri, 2009-02-20 - 22:06
I agree w/ your reply!

Re: Misread EEG/ JME medications

Submitted by rikk on Fri, 2009-02-20 - 21:54

hi,  to the answers.  yes eeg for me have been read wrong.  it is more common during dream state.  alot of seizure occur during changes in sleep states.  it common to have cognitive problems going up or down on keppra.  it was for me.  i was walking around in a fog both with cognition, but visually as well.  havn't figured that out yet.  doc don't know either.  eeg are a good test if they find something and it is read right.  the bad part is that about 70% of eegs are normal.  that part sucks. 

a pulse ox of 70% this not a good thing.  low oxygen levels can cause seizure activity.  i hope they are addressing the sleep apnea issue with success.  bottom end from what you have given is that you have seizures, and sleep apnea.  I hope they will find the balance for you.  i hope it helps.  rikk

hi,  to the answers.  yes eeg for me have been read wrong.  it is more common during dream state.  alot of seizure occur during changes in sleep states.  it common to have cognitive problems going up or down on keppra.  it was for me.  i was walking around in a fog both with cognition, but visually as well.  havn't figured that out yet.  doc don't know either.  eeg are a good test if they find something and it is read right.  the bad part is that about 70% of eegs are normal.  that part sucks. 

a pulse ox of 70% this not a good thing.  low oxygen levels can cause seizure activity.  i hope they are addressing the sleep apnea issue with success.  bottom end from what you have given is that you have seizures, and sleep apnea.  I hope they will find the balance for you.  i hope it helps.  rikk

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