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Medication Withdrawal
Sun, 08/04/2019 - 05:39Topic: New to Epilepsy.com
Hi there!
I've got a few questions about people who have JME and their experiences with AEDs, more specifically, with medication withdrawal.
A bit of background: I was diagnosed with epilepsy at the age of 16, six years ago. I had a random tonic-clonic seizure, and we also believe that I probably had seizures prior to the one we actually saw. My seizures were tonic-clonic seizures. I was treated with Clobazam for 6 months unsuccessfully. The situation was weird, as my seizures occurred once a month and were always either right before or during my period. After meeting with a new neurologist, I began taking Lamotrigine (Lamictal) and have been seizure-free since (with the exception of a strange stiffening of my muscles when I accidentally overdosed on Tylenol after getting my molars removed - I miscalculated the time between doses). I do not believe that was related to my epilepsy at all. After the Lamotrigine was deemed effective, my neurologist tried to ween me off of the Clobazam, but was having slight myoclonic jerks and was put back on the Clobazam. I recently saw a new neurologist who said that the pace at which they tried to remove the Clobazam was too quick and was likely the reason it didn't work.
I also have a family history of epilepsy, including my uncle (who had the exact same thing, a random seizure at 16 and then was successfully taken off of his medications 40 years ago), brother (absence seizures as a baby), and two cousins.
Earlier this year I had two EEGs, one normal and one sleep deprived and both came our perfectly clear (yay), and my neurologist said that she thinks that I am clear, and am ready to ween off of the medications. I have some trust issues with neurologists, and I am obviously scared about starting this process. Ever since I was diagnosed, doctors have been saying that I would eventually be able to go off my medications and that it was temporary, but I am naturally still very hesitant. I still have the occasional jerk, but a neurologist also told me that was normal if it wasn't frequent, which it isn't.
I was wondering if anyone had experiences with the mix of these medications?
I was also wondering if anyone had any experience with JME remission or successful (or failed) results of medication withdrawal?
Any answers or advice would be very helpful to me in making this decision!
Thank you!
Hi mizn, Thanks so much for
Submitted by Anonymous on Mon, 2019-08-05 - 09:19
Hi mizn, Thanks so much for posting. It’s important that you continue to follow-up with your healthcare team to determine what treatment is best for you, as well as any potential changes in seizure types, frequency, side effects, behaviors, or symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf We understand your concerns and know this can feel overwhelming. However, there are plenty of things you can do to reduce these feelings and manage your epilepsy.For ways to help manage your epilepsy, please visit:https://www.epilepsy.com/learn/managing-your-epilepsy Learn seizure first aid: https://www.epilepsy.com/learn/seizure-first-aid-and-safety Create a seizure response or action plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around you understand what do if you have a seizure Use a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Track your seizures, record your medical history, medications, side effects, moods, triggers, or other personal experiences. Have a Seizure alert device: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf Our checklist for women with epilepsy may be helpful for you to review with your doctor, here: https://www.epilepsy.com/sites/core/files/atoms/files/105CWE_ChecklistWomen_06-2019.pdf Learn more about women and epilepsy, and JME by visiting: https://www.epilepsy.com/living-epilepsy/women/women-faq https://www.epilepsy.com/living-epilepsy/women/all-women/hormones-and-epilepsy https://www.epilepsy.com/learn/types-epilepsy-syndromes/juvenile-myoclonic-epilepsy For more information regarding Lamictal, Clobazam and tapering off medication, visit: https://www.epilepsy.com/medications/lamotrigine https://www.epilepsy.com/medications/clobazamhttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/stopping-medicationThe Wellness Institute: epilepsy.com/wellness ,has many helpful and easy-to-use tips & resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsIt may 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: https://www.epilepsy.com/affiliates 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