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HELP JME

Mon, 01/03/2005 - 05:46
Topic: Living With Epilepsy - Youth
Can anyone tell me how JME differs from progressive myoclonic epilepsy. How can you confirm diagnosis. Also does JME usually include tonic -clonic seizures as my daughter is only having eyelid flutter plus occasional(4-6x/day) myoclonus-only brief jump(like when someone says 'boo' behind you!)

Comments

RE: HELP JME

Submitted by Willsmom on Sat, 2005-01-01 - 10:13
JME can also include Tonic Clonic Seizures. Until there is a Tonic Clonic seizure, JME could go on without a diagnosis (for years). Progressive Myoclonic Epilepsy's will demonstrate a rapid deterioration. If your daughter is growing normally and attending school and doing okay for her age level she will likely not have a progressive type of JME. Some progressive JME types are geographically specific, eg. La flora.I know that seeing your child change because of the AED's or because the seizure types change and or become more frequent there is a fear that JME is "progressing" when it is just changing as your daughter changes (grows).The myoclonics can cluster and start off a Tonic Clonic Seizure. Confirming a diagnosis is done with a sleep deprived EEG.Best wishes to you

RE: RE: HELP JME

Submitted by deborah on Sun, 2005-01-02 - 06:15

Willsmom,

Thanks that is helpful....given me food for thought.Daughter has had eye flutter for two years.. not sure about myoclonus but think its 6-12mnths. I think the EEG she had ,which showed photosensitivity also,was fairly typical of JME. But doctors always cagey... said it looked like JME. She is very clever, has got more forgetful but that may be the Epilim.How quick is the progression with prog JME? How does the sleep deprived EEG help... her last consultant said these were expensive and that her last EEG was fairly conclusive ,he said he thought she would know if she had night seizures_ don't see how when you are unconcious! Needless to say I thought he was a jerk and am looking for a specific epilepsy centre though we are a bit short of experts in New Zealand I think. Thanks again for taking the time, really appreciate it. Deborah 

Willsmom,

Thanks that is helpful....given me food for thought.Daughter has had eye flutter for two years.. not sure about myoclonus but think its 6-12mnths. I think the EEG she had ,which showed photosensitivity also,was fairly typical of JME. But doctors always cagey... said it looked like JME. She is very clever, has got more forgetful but that may be the Epilim.How quick is the progression with prog JME? How does the sleep deprived EEG help... her last consultant said these were expensive and that her last EEG was fairly conclusive ,he said he thought she would know if she had night seizures_ don't see how when you are unconcious! Needless to say I thought he was a jerk and am looking for a specific epilepsy centre though we are a bit short of experts in New Zealand I think. Thanks again for taking the time, really appreciate it. Deborah 

RE: RE: RE: HELP JME

Submitted by Willsmom on Sun, 2005-01-02 - 09:47
I don't know how fast (or slow) a deterioration would be for a progressive JME. I do know that there have been times recently when my son was having so many problems and things seemed to be getting worse, and then when we thought they couldn't get any worse they did. I was frightened that there was something else gong on so I began investigating the progressive types... only to conclude that this is not his problem. His problems begin (and are made worse) with the AED's that he is taking. Sleep deprivation is a major trigger for JME, a sleep deprived EEG would be a conclusive test for diagnosis. Even with this, it won't neccessarily change your daughter's treatment.I hope that you can find some helpful proffessional advice. Our experience has been that there is never a single treatment that works for everyone even if the diagnosis is similar. Epilepsy seems to be a slippery devil that no-one understands. It is amazing to me in this day and age that more couldn't be done to control seizure activity for everyone.One doctor we visited recently put it this way. As an epileptic patient, you are a black box that we (doctors) keep putting stuff into until something works.Not very hopeful, but many do get this devil under control (eventually).

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