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Medication Withdrawal Questions

Sat, 08/10/2019 - 07:24
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!

Comments

Tapering off lamotrigine

Submitted by Amy Jo on Mon, 2019-08-12 - 10:59
Tapering off lamotrigine should be done slowly, more slowly than most epilepsy drugs. This is regardless of the type of epilepsy one has. Our child is taking ~10-11 weeks to wean her dose of lamotrigine.  She’s got a good chance of growing out of her epilepsy as it’s likely genetic and isn’t an encephalopathy commonly found with atypical absences which she has (with other seizure types including myoclonics), her atypical absence were controlled by lamotrigine (which was also promising). Her partials were never fully controlled by meds (always improved with more meds just had unworkable side effects), they’ve declined over time on their own. We have a plan to do an EEG after the wean but didn’t bother with one before as it’s unlikely to see anything on meds, evidence of partials was usually missing before with some related spikes sometimes. JME is different although people with JME may have typical absence, it usually requires lifelong meds from what I’ve read so I'm surprised your docs have indicated otherwise - there’s info on JME on this site, search on it or cut/paste this https://www.epilepsy.com/learn/types-epilepsy-syndromes/juvenile-myoclonic-epilepsy I hope things work out but if this doc doesn’t seem quite right for you, consider a second opinion. Maybe the JME diagnosis is not as clear and your odds are better.  If your initial post wean EEG is clear, ask if another one after some interval would be useful.

Hi, Im a 26 year old male who

Submitted by Wayneor92 on Tue, 2019-09-17 - 06:10
Hi, Im a 26 year old male who was diagnosed with Epilepsy in February 2016. My first seizure happened while I was in work and from there the seizures have been completely unexpected, untriggered and not in any form of consistency so are completely random. This caused a lot of stress at home as I had to leave my job due to giving up my drivers licence and living at home with parents, sisters and nieces put a lot of pressure on them in regards care and worry due to not having any experience with epilepsy.The seizures have varied from day seizures, seizures while playing football, seizures in the kitchen, while smoking a cigarette out the window, seizures in passenger seats of cars and nocturnal seizures. Obviously this has caused a lot of stitching, scarring, glued forehead, broken teeth and jaw cartilage damage. My most recent seizure ( 1st September 2019 ) happened while I had just fallen asleep, the loud screech caused my father to check on my where I was blue in the face and bleeding from the nose. I got a dentist checkup yesterday to where I find out I completely ruined 3 back teeth needing extractions, root canals or implants and damage to cartilage in my jaw, throwing my bite off and causing serious pain in my gums. The dentist has put my on an antibiotic for 5 days and then has me booked for extractions on Monday.Medication wise I was on 1500mg Keppra twice a day along with 100mg Vimpat and we have been weaning off the Keppra by 500mg a day every 2 weeks (currently on 750mg twice a day) Once off Keppra the plan is to be be solely on Vimpat.Has anybody ever experienced anything like this with nocturnal seizures or teeth damage. Also any information on medication reduction issues would be greatly appreciated.Thanks very much, Wayne

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