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Why don't you believe us???
Sun, 06/18/2017 - 15:34Topic: Medication Issues
My daughter was put on Keppra after 4 years of trying Depakote, Cabatrol and Lamictal for drop & jerk seizures. Keppra seemed to control these at first, but shortly after starting Keppra she started to have throat problems, sore, raspy and strained voice. MRI showed inflammation but ENT had no suggestion. She has been on Keppra for 4 yrs now, her voice is worse and harder to speak loudly, and now 3 grand mal seizures and more jerk seizures! We had to see a new neurologist due to new insurance, and we were excited, hoping for new help and ideas!
This Dr. suggested maybe these are "pseudoseizures", What!?!? After 8 years, many DR's, EEG, diagnosis of JME by all, and this Dr said well he doesn't know, could be pseudoseizures. Is this normal?? I thought Neurologist are supposed to help, to explain things to us, NOT make us feel like we are making this up, and make us PROVE ourselves even though we brought all her previous medical records and tests to him. He said he has never heard of Keppra causing voice problems, so he doesn't think it was the Keppra and suggested we increase the dosage from the 1500mg daily.
After my daughter crying and frustrated, and me upset, he said he would order new EEG and MRI to see if these were in fact seizures. But said if no seizures during EEG, he really couldn't tell us for sure, but would switch her to Vimpat if she wanted off Keppra.
Now we don't know what to do? She needs to get seizures under control, and voice better. New test to hopefully PROVE to this DR and start Vimpat, or new Dr??
Comments
bekkag76 - that's a great
Submitted by jgretsch on Tue, 2017-06-20 - 16:42
bekkag76 - that's a great suggestion from Amy Jo to see an epileptologist, which is a neurologist who specializes in epilepsy. An evaluation at an epilepsy center is also very important. An epilepsy center is a group of health care professionals who specialize in the diagnosis, care, and treatment of people with seizures and epilepsy. Usually led by an epileptologist, the specialized center should also include other health care professionals to meet the diverse needs of people with seizures and their families. Find more information and tools for locating an epilepsy specialist here: https://www.epilepsy.com/get-help/find-epilepsy-specialistAs Amy Jo points out, EEGs have limitations; they can only detect seizure activity at the time of the test. A longer-term ambulatory EEG or a video EEG in an epilepsy monitoring unit may be needed to capture seizure activity. Learn more about types of EEGs here: http://www.epilepsy.com/learn/diagnosis/eegOne other note, psychogenic nonepileptic seizures, also called pseudoseizures, are real seizures. They just do not start from electrical activity in the brain. Some people have both epilepsy seizures and psychogenic seizures. Find out more here: https://www.epilepsy.com/learn/types-seizures/nonepileptic-seizures-or-eventsAll of this points to how important it is to find out all of the kinds of seizures your daughter may have so a comprehensive treatment plan can be developed. Please feel free to call our Helpline, available 24 hours a day, 7 days a week, at 800-332-1000 if you have more questions.
can you get in to see an
Submitted by Amy Jo on Sun, 2017-06-18 - 17:11
can you get in to see an epileptologist? eegs are not perfect tests and one can have epilepsy without a correlation on eeg, more so if on medication. so unless that eeg is in patient while rapidly weaning off meds, how many ch is likely to show up? I personally think suggesting pseudo seizures means the doc is out of their depth but it also opens up the indication one should see an epileptologist because that's the kind of doc that would properly evaluate if her seizure situation has changed (and also the proper doc to evaluate possible pseudo seizures vs epilepsy). it should not threaten docs to have parents suggest that a med might be triggering an unusual side effect but... it's definitely at the point when one should switch meds.