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Misread EEG/ JME medications
Thu, 02/19/2009 - 14:26Topic: 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!
Re: Misread EEG/ JME medications
Submitted by headspin on Sun, 2009-04-12 - 16:37
I was found to have Severe Obstructive Sleep Apnea which nearly killed me a few years ago. It caused my lungs to fill with fluids thus causing a Staph Infection in the lungs along with strep. One day I passed out in a chair in my living room from a lack of oxygen, and woke up 2 weeks later from a coma in the ICU fully paralyzed. Had my wife not called an ambulance when she did, I would not be here. I spent 6 weeks learning to move and walk again in physical therapy.
I also had to be taken off of Keppra, and I did notice that if they do wean you off too fast, it can make you jittery and tired. I had been taking 3000mg per day. I am now on Topomax and Neurontin (Gabapentin) for Grand Mal, Complex Partial, and Simple partial seizures.
I was found to have Severe Obstructive Sleep Apnea which nearly killed me a few years ago. It caused my lungs to fill with fluids thus causing a Staph Infection in the lungs along with strep. One day I passed out in a chair in my living room from a lack of oxygen, and woke up 2 weeks later from a coma in the ICU fully paralyzed. Had my wife not called an ambulance when she did, I would not be here. I spent 6 weeks learning to move and walk again in physical therapy.
I also had to be taken off of Keppra, and I did notice that if they do wean you off too fast, it can make you jittery and tired. I had been taking 3000mg per day. I am now on Topomax and Neurontin (Gabapentin) for Grand Mal, Complex Partial, and Simple partial seizures.