Juvenile myoclonic epilepsy (JME) is the most common generalized epilepsy syndrome. It is also called Juvenile Myoclonic …
22 Comments
🔥 Do you or anyone you know have JME? If so, I'd love to hear about your/their experiences in the comments below. How are you managing them? What are your symptoms?
I have it. The jerks and twitches can be annoying especially when I’m very tired. They also love to wake me in my sleep causing even more poor sleep. But at age 41 I’m so thankful they finally found what is wrong with me. That took a 3-5 min full seizure with no memory to finally get answers. But I’m thankful for a very good ER doc and neurologist. Thank you, and thank you the vlog. Very very helpful.
My daughter was diagnosed with JME last Feb at the age of 17. Since then she has not been able to drive because she may go 4 or 5 months without a seizure and then it happens out of no where. She is currently taking 4000mg of Keppra daily and I feel that it isn't working since we can never get to the 6 month mark of being seizure free. She's 18 now, her senior year in high school and feels like she has lost her freedom. When she does have a seizure, its either she has a grand mal or she passes out.
My daughter has seen 6 different specialists. All of them say her epilepsy is just hard to treat, rare and doesn’t respond well to meds. They have never mentioned myoclonic or Jeavons. I just learned about this last night.
I had absence and tonic clonic seizures as a child, but I don’t recall having jerks. I asked my mom and she said she didn’t know either. I did have sudden leg weakness, though. I have been having the myoclonic jerks for over two years now. For me, Keppra does not help, currently.
I take Keppra. Growing up, I was put on Depakote at age 8. It was pretty bad, I gained a lot of weight and eventually developed PCOS. I decided to go off of Depakote at age 12 and took Tegretol. Tegretol exacerbated my myclonis and led to breakthrough full blown tonic clonic seizures.. Since I couldn't take Tegretol, I decided to try Topamax. It was single handedly the the worst and made me disassociate, gave me tremors, pins and needles sensation, carbonation dysgeusia, and made me anorexic. I was unable to speak to other people (including my mom and dad) during my time on Topamax and spent most of my days sleeping or clinging to my bedpost.
I've never tried Lamictal, but have been told that if I want to get pregnant I will need to go off of Keppra and take Lamictal. So far Keppra is the best medicine I've been on for JME, but I do unfortunately experience is depression and suicide ideation. I just remind myself that it is the medication that is causing it and it is not who I am as a person. I have a great support system in my life to counteract this.
It's unfortunate that I'd rather deal with depression and suicide ideation than the other horrible side effects of these medications. I feel like doctors just throw medications at us without really understanding how bad the side affects will be. Like seizure control is important, but it's coming at a cost.
A lot of people in my life have not been sympathetic/empathetic or understanding.
I take Keppra, lamotragine and Topiramate. I have JME but found that out later when I was 30 because I was diagnosed with absence seizures when I was 7
I think I had this, because in high school when I basically didn’t sleep a few hours into the day I would twitch during class, basically my arm flailing, I had no idea what it was but I was so embarrassed, it would be on and off for like thirty minutes. Years later when I was about 20 I had my first tonic clonic seizure
I have JME, using Tegritol and currently i’m not having any episodes since last 6 years, also regular Liver and Kidney profile test is suggested to monitor any side effects.
Hello I recently got diagnosed with JME. I was curious if a trigger can specifically be photosensitive? I had a seizure after I was playing video games and on my phone reading at the same time ( I know bad idea) which was over a year ago. Sometimes I will twitch in my Face if I read for to long and can have jerks if I play video games without eating or drinking water. Other than that I drink alcohol and have had plenty of nights where I barely get sleep. I was prescribed lanotrigine but haven’t taken it and have only had one seizure and it was a year ago.
I'm glad I watched this, it explained so much. When they told me i had juvenile myoclonic epilepsy, I looked up myoclonic seizures. I was wondering if maybe they didn't believe me about my other seizures I had. (When I learned what a myoclonic seizure was I recognized it.) I realized I was having them all the time. They're so quick no one noticed it. My mother noticed once because I had just had a really tonic clonic seizure and they were watching me like a hawk. I spilled some coffee one morning. She noticed me jerk. My wife however is the one who pushed me to get checked out and finally get a diagnosis.
Oh my gosh! This is an exact description of what I have, and the order in which everything happened. I am also on one of the meds that was in the video…
🔥 Do you or anyone you know have JME? If so, I'd love to hear about your/their experiences in the comments below. How are you managing them? What are your symptoms?
I was diagnosed last year at the age of 27. It has ruined my life
I have it. The jerks and twitches can be annoying especially when I’m very tired. They also love to wake me in my sleep causing even more poor sleep. But at age 41 I’m so thankful they finally found what is wrong with me. That took a 3-5 min full seizure with no memory to finally get answers. But I’m thankful for a very good ER doc and neurologist. Thank you, and thank you the vlog. Very very helpful.
My daughter was diagnosed with JME last Feb at the age of 17. Since then she has not been able to drive because she may go 4 or 5 months without a seizure and then it happens out of no where. She is currently taking 4000mg of Keppra daily and I feel that it isn't working since we can never get to the 6 month mark of being seizure free. She's 18 now, her senior year in high school and feels like she has lost her freedom. When she does have a seizure, its either she has a grand mal or she passes out.
this channel is a gem
My daughter has seen 6 different specialists. All of them say her epilepsy is just hard to treat, rare and doesn’t respond well to meds. They have never mentioned myoclonic or Jeavons. I just learned about this last night.
I had absence and tonic clonic seizures as a child, but I don’t recall having jerks. I asked my mom and she said she didn’t know either. I did have sudden leg weakness, though. I have been having the myoclonic jerks for over two years now. For me, Keppra does not help, currently.
I take Keppra. Growing up, I was put on Depakote at age 8. It was pretty bad, I gained a lot of weight and eventually developed PCOS. I decided to go off of Depakote at age 12 and took Tegretol. Tegretol exacerbated my myclonis and led to breakthrough full blown tonic clonic seizures.. Since I couldn't take Tegretol, I decided to try Topamax. It was single handedly the the worst and made me disassociate, gave me tremors, pins and needles sensation, carbonation dysgeusia, and made me anorexic. I was unable to speak to other people (including my mom and dad) during my time on Topamax and spent most of my days sleeping or clinging to my bedpost.
I've never tried Lamictal, but have been told that if I want to get pregnant I will need to go off of Keppra and take Lamictal. So far Keppra is the best medicine I've been on for JME, but I do unfortunately experience is depression and suicide ideation. I just remind myself that it is the medication that is causing it and it is not who I am as a person. I have a great support system in my life to counteract this.
It's unfortunate that I'd rather deal with depression and suicide ideation than the other horrible side effects of these medications. I feel like doctors just throw medications at us without really understanding how bad the side affects will be. Like seizure control is important, but it's coming at a cost.
A lot of people in my life have not been sympathetic/empathetic or understanding.
I take Keppra, lamotragine and Topiramate. I have JME but found that out later when I was 30 because I was diagnosed with absence seizures when I was 7
Though weirdly after I had a seizure and got an eeg done the doctors said nothing was there. They don’t even know what kind of seizure I really have.
I think I had this, because in high school when I basically didn’t sleep a few hours into the day I would twitch during class, basically my arm flailing, I had no idea what it was but I was so embarrassed, it would be on and off for like thirty minutes. Years later when I was about 20 I had my first tonic clonic seizure
Can hepnek jercks/ sleep myoclonus turn into seizure
I have JME, using Tegritol and currently i’m not having any episodes since last 6 years, also regular Liver and Kidney profile test is suggested to monitor any side effects.
Hello I recently got diagnosed with JME. I was curious if a trigger can specifically be photosensitive? I had a seizure after I was playing video games and on my phone reading at the same time ( I know bad idea) which was over a year ago. Sometimes I will twitch in my Face if I read for to long and can have jerks if I play video games without eating or drinking water. Other than that I drink alcohol and have had plenty of nights where I barely get sleep. I was prescribed lanotrigine but haven’t taken it and have only had one seizure and it was a year ago.
I'm glad I watched this, it explained so much. When they told me i had juvenile myoclonic epilepsy, I looked up myoclonic seizures. I was wondering if maybe they didn't believe me about my other seizures I had. (When I learned what a myoclonic seizure was I recognized it.) I realized I was having them all the time. They're so quick no one noticed it. My mother noticed once because I had just had a really tonic clonic seizure and they were watching me like a hawk. I spilled some coffee one morning. She noticed me jerk. My wife however is the one who pushed me to get checked out and finally get a diagnosis.
Any gene for jme
Oh my gosh! This is an exact description of what I have, and the order in which everything happened.
I am also on one of the meds that was in the video…
i have epilem and it worked the dream. Im now seizure free for 1 year
Thanks for this video!
I have JME
Hi I would like to know about more on myclonic Atonic Seizures and SSPE treatment
Thanks