Great video. I had my first tonic-clonic seizure at age 16 and subsequent one at age 17, at which point I was diagnosed with epilepsy. However the neurologist failed to correctly diagnose my epilpsy as JME and instead as "partial seizures with secondary generalization". It wasn't until many years later that I was correctly diagnosed with JME and put on the correct antivolusants (Lamictal/Depakote) to control it. I'm in my 50s now and epilepsy has hurt me professionally and psychologically. I wouldn't wish it on anyone. To those of you who have been diagnosed with JME you have my support, and I encourage you to consult with a therapist to help you deal with this very challenging condition.
I had my first seizure on the 8th of November in 2023. And actually had 2 in a row one at school, and one at the hospital both generalized and had to stay at the hospital for a few days until I got my results and now I’m diagnosed with it and am trying to learn about it so thank you!
I'm praying for you and God bless you ,I wish you well with everything, my oldest great granddaughter was just diagnosed, im trying to learn more too, ❤
@@mahboobahussain5855 To be honest I didn’t really have any symptoms before hand, although even with medication now I’ll occasionally have myoclonic jerks. It’s just annoying more than anything, but I haven’t had any seizures since! 😁
Thank you for this very informative video, I have had JME since I was 13-14 and I'm intrigued by how my descriptions of the experience and the intuition about the workings of the condition have always been close to being technically correct. I'm in the process of tapering off my medication and really hope I don't have a relapse. I feel the medication makes me sleep too much 😶
I have this and i hurt myself all the time before going on medication to the point where me a 15 year old needed a sippy cup cause i would dump my drinks and food.
I’m 55, and have it too. With a career, wife and 2 sons there is life beyond JME. Take your meds, keep a diary and take pics of the good times. You’ll be fine.
@@traveleatrepeatwithpooja The only thing I can say is that there is a chance that your child may have it too. My son had seizures during sleep and grew out of them. Best of luck.
@kat Can I ask what your first symptoms were? I have an 11 year old daughter who is starting with arm jerking in the mornings and also drops her drinks . 😢 I think it might be JME.
Thanks for this. I had to lay on a bed with sensors attached to my head for at least an hour in 1998 to find out I had JME. I don't remember which AED I was prescribed first, but Lamictal came second in 1999, and I'm still on it now.
I was diagnosed with Essential Tremors taking Atenolol for medication, some months later took an EEG, doctors said I had JME currently taking Levetiracetam
I was dx'd and got genetic testing and the gene that caused mine usually causes hemiplegic migraines and DEE (developmental and epileptic encephalopathy). I also have autism and movement disorders. My gene affects sodium channels, thus affecting GABA. I am very sensitive to certain meds like gabapentin and high glutamate diets. I also suspect this is why i have tardive dyskenisia from a broad range of medications even benedryl. I would like to know more how these genes and brain chemicals affect epilepsy and movement disorders and how they are connected.
hank you for an informative video. I was diagnosed with JME aged 21. Controlled it largely with lamotrogine and have come off drugs to have two children, no seizures in pregnancy despite being drug free. Been off drugs for 18 months to try for another and had no seizures first year, then 2 weeks after covid had first grand mal in 15 years. Over 5 months I’ve now had 6 grand mals all with an aura before (new to me), and a couple of auras without grand mals. Also seizure activity no longer just in the period post waking. Would you say this is inflammation in the brain post covid? Would love to hear any stories of people in same boat especially if they managed to get on top of it!!
Hi Rebecca, nothing to do with Covid and unfortunately, it's very much in the nature of JME to have an on and off existence and persistence like this. Bw Simon
Hi, your video makes it a little easier to understand what is happening, thank you Just wondered if you have covered/know much about Chiari I Malformation at all? My 12 year old daughter has been diagnosed with JME and Chiari (as an accidental finding from an MRI) in the last 10 months. Struggling to find much information about Chiari, other than people's personal experience of the condition.
Hi Emma, many thanks. Please find a good patient friendly resource link via the link below. Hope that helps Bw Simon www.brainandspine.org.uk/our-publications/booklets/chiari-malformation/?gclid=Cj0KCQjw7KqZBhCBARIsAI-fTKIHskx1kcXhMeZSNgERJ1GKZhDKMWtRRSVDR2NB5jAMZ1WtGbipuEoaAvpREALw_wcB
What about the Ketogenic Diet and lifestyle changes? I have recently started a MAD/Keto diet. My breakthrough on medication have dropped dramatically. The studies I have seen in JME and Keto seem positive.
Hi Anna, it's a great question. Fundamentally, Keto diets help quite a few epilepsies and it's lovely to hear that it's helping you in conjunction with the AEDs. There are scientific studies that show this too, but they tend to have small numbers of patients, and it's hard to extrapolate/generalise from such small groups. There are lots of reasons that people pull out of Keto diets even when they feel the positive effects. They are tricky to adhere too, but importantly, they're often expensive to maintain. Because its about food and doesn't involve a tablet, they often can't be readily financially supported by healthcare systems. This may also be a factor in research trials, as there isn't a business behind it to provide the financial sponsorship to fund them. Bw, Simon
@@DrSimonFreilich thank you. This is a journey for me (there is an answered prayer by God in this.) Anyway I am only looking forward and not back. I have no desire for carbohydrates and I am only looking forward. I have listened to Christopher Palmer talking about psychiatry and Keto. I do know it’s hard but I wish there was more support. I am very disciplined. I exercise, sleep, have family and work and most importantly pray. It is a whole package and the diet is not a silver bullet. I am also starting on breathing lessons and biofeedback. I want to make myself as healthy as possible. If anyone wants me in a trial, I would be happy to!
My great granddaughter was just diagnozed with JME, she is 14, she has a pediatrics /neurologist,it is her 2nd trip to the Dr. She has had just one seisure, she is on meds too, she seems to be handling it pretty well, but im so worried about her, im trying to educate myself as well as all her family are, i cryed and prayed all night, wondering what happened, she had a fall when she was a toddler , but she never showed any signs of any damage all her young life, im confused if falls can cause JME, or is it all genetic? thank you for this great video, and thanks in advance for info
Dear Nancy, it's quite common for people to try and look back and think if something precipitated a medical condition. All kids fall and hit their heads at some point, but overall, we're well built to handle the more minor injuries. The genetic epilepsies will present regardless, at a predetermined point in time that various developmental changes in ion channels occur. Wishing her well and seizure freedom, bw Simon
Thank you so much for your response Dr.Freilich and for your well wishes, and for the informative video ,it has helped me to understand better, would you care to explain to me , why this certain JME comes on at the young age or at the teenage life, is there any known reason for this? I want to do everything I can to learn all about this so I can help my granddaughter as much as I can , my older sister was born with epelipsy, so all her siblings was used to it, and we helped take care of her,but for my granddaughter its all new to me, is there any books i can read on the subject? Once again thank you so much for your reply, and I look for ward to more vidos, God bless you for your brilliant work to help others, bw ,Nancy
Hi, an interesting question which isn't simple to answer. The Epilepsy Foundation has some specific comments about this via www.epilepsy.com/complications-risks/moods-behavior/adhd#:~:text=The%20risk%20of%20increased%20seizure,closely%20monitored%20for%20increased%20seizures. Bw Simon
I'm a few weeks into going keto to treat my jme. I'm very interested in your take on a lotta things. My neurologist treats me like I'm crazy for wanting to try diet and lifestyle changes over meds. I could really use someone to talk to about this.
CACBN4...if one allele is completely deleted would this decrease the total number of calcium channels in a person? Would this lead to slower neuron firing? Would this lead to poor development of the brain?
Great video. I had my first tonic-clonic seizure at age 16 and subsequent one at age 17, at which point I was diagnosed with epilepsy. However the neurologist failed to correctly diagnose my epilpsy as JME and instead as "partial seizures with secondary generalization". It wasn't until many years later that I was correctly diagnosed with JME and put on the correct antivolusants (Lamictal/Depakote) to control it. I'm in my 50s now and epilepsy has hurt me professionally and psychologically. I wouldn't wish it on anyone. To those of you who have been diagnosed with JME you have my support, and I encourage you to consult with a therapist to help you deal with this very challenging condition.
Mine started at 13 I'm 29 haven't had one for 2 years thanks to a correct concoction of pills now
I had my first seizure on the 8th of November in 2023. And actually had 2 in a row one at school, and one at the hospital both generalized and had to stay at the hospital for a few days until I got my results and now I’m diagnosed with it and am trying to learn about it so thank you!
I'm praying for you and God bless you ,I wish you well with everything, my oldest great granddaughter was just diagnosed, im trying to learn more too, ❤
How long did you have myoclonic seizures before your generalised seizure? I hope medication is keeping you seizure free
@@mahboobahussain5855 To be honest I didn’t really have any symptoms before hand, although even with medication now I’ll occasionally have myoclonic jerks. It’s just annoying more than anything, but I haven’t had any seizures since! 😁
Same bhai
thanks for the video. i’ve had jme for 7 years and i love how you explained everything
Thank you for this very informative video, I have had JME since I was 13-14 and I'm intrigued by how my descriptions of the experience and the intuition about the workings of the condition have always been close to being technically correct. I'm in the process of tapering off my medication and really hope I don't have a relapse. I feel the medication makes me sleep too much 😶
How did it go? I’m starting the process of weaning off and extremely nervous
My son has JME and my daughter has Jeavons Syndrome. Thank you for this information!
I have this and i hurt myself all the time before going on medication to the point where me a 15 year old needed a sippy cup cause i would dump my drinks and food.
I’m 55, and have it too. With a career, wife and 2 sons there is life beyond JME. Take your meds, keep a diary and take pics of the good times. You’ll be fine.
@@jskjsk3986 any complications during pregnancy. I have it too. I am 30 year old. Planning a baby. Your experience might help me.
@@traveleatrepeatwithpooja The only thing I can say is that there is a chance that your child may have it too. My son had seizures during sleep and grew out of them. Best of luck.
@kat Can I ask what your first symptoms were? I have an 11 year old daughter who is starting with arm jerking in the mornings and also drops her drinks . 😢 I think it might be JME.
Thanks for this. I had to lay on a bed with sensors attached to my head for at least an hour in 1998 to find out I had JME. I don't remember which AED I was prescribed first, but Lamictal came second in 1999, and I'm still on it now.
Thank you for this great video! Do you have citations you could share?
Thank you so much for this, really coherent and to the point.
Thanks informative and helpful for both doctors and patients
I was diagnosed with Essential Tremors taking Atenolol for medication, some months later took an EEG, doctors said I had JME currently taking Levetiracetam
I was dx'd and got genetic testing and the gene that caused mine usually causes hemiplegic migraines and DEE (developmental and epileptic encephalopathy). I also have autism and movement disorders. My gene affects sodium channels, thus affecting GABA. I am very sensitive to certain meds like gabapentin and high glutamate diets. I also suspect this is why i have tardive dyskenisia from a broad range of medications even benedryl. I would like to know more how these genes and brain chemicals affect epilepsy and movement disorders and how they are connected.
Amazing. Thank you
Was diagnosed with JME after 2 doctors looked me over. I described the jerking as head bobbing.
hank you for an informative video. I was diagnosed with JME aged 21. Controlled it largely with lamotrogine and have come off drugs to have two children, no seizures in pregnancy despite being drug free. Been off drugs for 18 months to try for another and had no seizures first year, then 2 weeks after covid had first grand mal in 15 years. Over 5 months I’ve now had 6 grand mals all with an aura before (new to me), and a couple of auras without grand mals. Also seizure activity no longer just in the period post waking. Would you say this is inflammation in the brain post covid? Would love to hear any stories of people in same boat especially if they managed to get on top of it!!
Hi Rebecca, nothing to do with Covid and unfortunately, it's very much in the nature of JME to have an on and off existence and persistence like this. Bw Simon
Hi, your video makes it a little easier to understand what is happening, thank you
Just wondered if you have covered/know much about Chiari I Malformation at all?
My 12 year old daughter has been diagnosed with JME and Chiari (as an accidental finding from an MRI) in the last 10 months. Struggling to find much information about Chiari, other than people's personal experience of the condition.
Hi Emma, many thanks. Please find a good patient friendly resource link via the link below.
Hope that helps
Bw
Simon
www.brainandspine.org.uk/our-publications/booklets/chiari-malformation/?gclid=Cj0KCQjw7KqZBhCBARIsAI-fTKIHskx1kcXhMeZSNgERJ1GKZhDKMWtRRSVDR2NB5jAMZ1WtGbipuEoaAvpREALw_wcB
Nice information..
What about the Ketogenic Diet and lifestyle changes? I have recently started a MAD/Keto diet. My breakthrough on medication have dropped dramatically. The studies I have seen in JME and Keto seem positive.
Hi Anna, it's a great question. Fundamentally, Keto diets help quite a few epilepsies and it's lovely to hear that it's helping you in conjunction with the AEDs. There are scientific studies that show this too, but they tend to have small numbers of patients, and it's hard to extrapolate/generalise from such small groups. There are lots of reasons that people pull out of Keto diets even when they feel the positive effects. They are tricky to adhere too, but importantly, they're often expensive to maintain. Because its about food and doesn't involve a tablet, they often can't be readily financially supported by healthcare systems. This may also be a factor in research trials, as there isn't a business behind it to provide the financial sponsorship to fund them. Bw, Simon
@@DrSimonFreilich thank you. This is a journey for me (there is an answered prayer by God in this.) Anyway I am only looking forward and not back. I have no desire for carbohydrates and I am only looking forward. I have listened to Christopher Palmer talking about psychiatry and Keto. I do know it’s hard but I wish there was more support. I am very disciplined. I exercise, sleep, have family and work and most importantly pray. It is a whole package and the diet is not a silver bullet. I am also starting on breathing lessons and biofeedback. I want to make myself as healthy as possible. If anyone wants me in a trial, I would be happy to!
@@annacourville4622glad to hear you pray❤ may Allah guide everyone to the straight path ❤❤❤❤❤
Its very useful, can i get the ppt plz?
My great granddaughter was just diagnozed with JME, she is 14, she has a pediatrics /neurologist,it is her 2nd trip to the Dr. She has had just one seisure, she is on meds too, she seems to be handling it pretty well, but im so worried about her, im trying to educate myself as well as all her family are, i cryed and prayed all night, wondering what happened, she had a fall when she was a toddler , but she never showed any signs of any damage all her young life, im confused if falls can cause JME, or is it all genetic? thank you for this great video, and thanks in advance for info
Dear Nancy, it's quite common for people to try and look back and think if something precipitated a medical condition. All kids fall and hit their heads at some point, but overall, we're well built to handle the more minor injuries. The genetic epilepsies will present regardless, at a predetermined point in time that various developmental changes in ion channels occur. Wishing her well and seizure freedom, bw Simon
Thank you so much for your response Dr.Freilich and for your well wishes, and for the informative video ,it has helped me to understand better, would you care to explain to me , why this certain JME comes on at the young age or at the teenage life, is there any known reason for this? I want to do everything I can to learn all about this so I can help my granddaughter as much as I can , my older sister was born with epelipsy, so all her siblings was used to it, and we helped take care of her,but for my granddaughter its all new to me, is there any books i can read on the subject? Once again thank you so much for your reply, and I look for ward to more vidos, God bless you for your brilliant work to help others, bw ,Nancy
Thanku so much for this info.it helps me.
what about stimulants like adderall and vyvanse? or energy drinks?
Hi, an interesting question which isn't simple to answer. The Epilepsy Foundation has some specific comments about this via www.epilepsy.com/complications-risks/moods-behavior/adhd#:~:text=The%20risk%20of%20increased%20seizure,closely%20monitored%20for%20increased%20seizures.
Bw
Simon
How about ketogenic diet?
Hi Martha, please see Anna's question/ answer from 6 days ago. Bw Simon
I'm a few weeks into going keto to treat my jme. I'm very interested in your take on a lotta things. My neurologist treats me like I'm crazy for wanting to try diet and lifestyle changes over meds. I could really use someone to talk to about this.
Thanks helpful
CACBN4...if one allele is completely deleted would this decrease the total number of calcium channels in a person? Would this lead to slower neuron firing? Would this lead to poor development of the brain?
I hate JME ! Hit a tree with my car now crippled
Plz make a video in urdu because I from Pakistan
I've had e. siezures since I was kid.