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JME
Wed, 06/26/2019 - 14:46Topic: Living With Epilepsy - Youth
Hello, my name is Tom. I am 19 years old and have had JME for five years with only three grand mals. As the morning jerks have gotten worse in the last two years, I’ve noticed that nearly every time the jerks are larger, I need to use the bathroom. Once I use the bathroom, the jerks coincidentally stop within a minute or two. Does anyone else experience this? If so, what’s the best way to handle it?
Comments
Hi there,Thanks so much for
Submitted by Believer_59cd4d81a99cf on Sun, 2019-06-30 - 21:42
Hi there,Thanks so much for posting this! I have these hand spasms that were officially diagnosed as "focal dystonia" and not part of my seizures, but I've definitely noticed a link between needing the bathroom and these hand shakes/spasms etc! Can't for the life of me figure out what the connection is. I mean it's good even just to hear I'm not alone with the crazy idea that there's some kind of connection. Wish I had an answer to share but I really have no clue. ~B
Hi TomJohnson2000, Thanks for
Submitted by Anonymous on Thu, 2019-06-27 - 10:09
Hi TomJohnson2000, Thanks for posting. It’s important that you follow-up with your healthcare team to discuss any changes in seizure types, frequency, behaviors, side effects and symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf . It may be helpful having a device: https://www.dannydid.org/ , that can help track seizures: https://www.epilepsy.com/learn/managing-your-epilepsy/tracking-my-seizures/importance-tracking-seizuresAnd by keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication& other therapies, recognizing triggers and health events that may affect seizures and wellness, which you can share with your healthcare team. https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf Learn more about managing your epilepsy, seizures & triggers here:https://www.epilepsy.com/learn/types-epilepsy-syndromes/juvenile-myoclonic-epilepsyhttps://www.epilepsy.com/learn/types-seizures/myoclonic-seizureshttps://www.epilepsy.com/learn/managing-your-epilepsyhttps://www.epilepsy.com/learn/managing-your-epilepsy/managing-seizure-triggers Sometimes it's helpful to connect with other people who live with epilepsy, to ask questions, share experiences, find & give support to each other, by contacting your local Epilepsy Foundation at: epilepsy.com/localsupport, to find support groups,events and programs in your community. Additionally, our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org, can assist in connecting you to resources, provide referrals and additional support.epilepsy.com/helpline