I feel the same way. I have had epilepsy now for 44 years and I had to do my own research to understand what I was dealing with. If I would have had access to this information earlier in life, there are so many things I would have done differently.
I was recently diagnosed Myclonus Movements which are both Positive-jerks or Negative-loss of tone. Plus, I have been and once again, by a third opinion, suspected to have NocturnalFrontal Lobe seizures. The neurologist, a Sleep Medicine doctor, prescribed me Carbamazapine. It worked for my sleep seizures but exacerbated my Myoclonus. After some six months, i had to VA ER due to both legs dropping on me. I couldn't walk for a short period of minutes. Then waa weak. A past neurologist prescribed me Depakote for migraines. That cause dystonic head turning and leguscle spasming. I could deey muscles moving with no control. I had similar reactions to any antidepressants, including seratonin medications of several trials. Some I reacted within first or secind dose, some a week. All of them I had dystonic, tonic or hyperkinetic reactions. I will be starting Keppra within days, waiting for my prescription to be filled. I was never depressed. I was in severe nerve pain from nerve damage in my cervical spine and bone reconstruction surgeries, four total in Army. VA gave me antidepressants that caused reactions but only a VA Sleep doctors spotted that Sleep Study movements were not fitting the Sleep Disorder category I had been in for a decade. I was getting CPAP for over ten years. All that changed to Myclonus Movements and possible ADFLE. I waiting for results of my gene test.
I hope you get the gene test soon. I'm glad the sleep doctors at the VA spotted something. When it comes to your migraines, ask your neurologist about magnesium. My neurologist told me it helps to decrease migraines. I feel a lot better since being on magnesium. Vitamin D is good for reducing depression as well. This is from my personal experience so make sure the doctor gives you the ok before adding anything to your treatment plan.
Istg i hate having myoclonic seizures A year ago, its about to be 2 On my 13th birthday i just woke up from a nap and i was going to do what my mom asked my legs felt weak and i had a light headed and collapsed on the floor (i can just call it me falling to the floor and little bit passing out) It happened 3 times and my Dad found out my arms were twitching and tell me to sit down, and my mom was crying and i was little scared and confused and i had to go to the hospital for a FEW HOURS it still happens and a few months later untill December 2022 i got stiffed when it got worse during a school morning, and it happened 2 times in February 2023 and it hurts... No doctor couldn't found out what it was up until may 15 2023, i was diagnosed with myoclonic seizures and my mom was crying and scared and i was scared aswell and shocked Good thing i now have treatment for my seizures and they work so far... Sorry i had to vent about my story 😭💀👍
It's ok, please feel free to share your story here. I developed epilepsy at the age of two due to a traumatic brain injury. I am 45 now and it has been a challenge living with epilepsy for 43 years. I still at times need to vent when I am dealing with the side effects of my medication or I'm having a bad day. I'm happy they found out what was happening and that treatment is going well for you.
Sleep deprivation is a seizure trigger for many. I myself have not experienced myoclonic seizures. I have had tonic-clonic, complex partial, and simple partial seizures.
Is raising of hand and feet is jerking?..I really want to know some examples of myclonic siezure ...my son is taking 2yrs of his medicine but sitll having a siezure..huhu...
@@maureenmacasa8677 I am not a doctor so I can't diagnose. When he raises his hands or feet, do they stiffen up or are they brief? If you are able to, record it on your cell phone and show it to the doctor. He or she will be able to make a diagnosis when seeing it directly. There are a couple of different types of seizures I can think of that people do that, but I don't want to suggest it is something and then it is not. If you cannot get it on camera, write down in a journal the date and time it happened, what symptoms took place, and how long did it last. That way you can provide to the doctor the information. It can take a long time and trying different medications before someone can get their seizures under control. Mine didn't get under control until my brain stopped growing around 25 and I started having them at 2. Please do everything you can to stay strong and take care of yourself so you can be there for your son. As a mother with two chronically ill children myself, I can empathize how hard it is to see your child not doing well. If you have any questions, you can email me at info@defeatingepilepsy.org.
Am here to figure out what i have. Even typing is challenging. My fingers go limp. My hand jerks and the phone falls out of my hand and some days whats even scarier is that i almost collide with a passing vehicle when am riding my scooter or a bycycle. My hand or entire arm just jerks and i swerve to one side and i cant control knowing this is happening to me. I feel like a threat to the society as well as myself.
I would consult with your doctor to see what options you have. I am not a doctor, but what you are describing could be a seizure. I would have the doctor schedule some tests to confirm a diagnosis. You are not a threat to yourself or society, I can understand that this is scary when you are not one hundred percent sure what is going on. Please keep a journal and write down when you can what happened, at what time, and the date. If a family member can record it on a cell phone so the doctor can watch it, that will be very helpful for them. I have had epilepsy for 43 years now, and I can say there are times it still scares me when I am not doing well. Please stay strong and see the doctor as soon as you can.
Hi, I would talk and explain to the doctor what is going on. I am not a doctor so I cannot make a diagnosis. It could be a number of things. When you are experiencing symptoms, write down the date, time, and what you experienced. Keep a journal so when you go to the doctor, you have everything in order to show him or her.
Hello. Thank you for a very informative video. Do you think there is a connection between SPATA5 and myoclonic seizures? My 2 year old granddaughter was just diagnosed with SPATA5. She has many seizures all day. She’s on Levetiracetam and Divalproex DR She still has many seizures a day. Any information would be appreciated. Thank you.
Hi Colleen, yes there is a link between SPATA5 and myoclonic seizures. I found an article through the National Institute of Health explaining about SPATA5 and the different seizures associated with it. Here is the link: www.ncbi.nlm.nih.gov/pmc/articles/PMC5838984/ . I hope this helps. If you need anymore information or have questions, please let me know.
@@DefeatingEpilepsyFoundation Thank you for the quick response. I read all of that and didn’t understand most of it. I did see where there are myoclonic seizures in SPATA5 patients. We are afraid we won’t be able to get these seizures under any kind of control. It pains me to see my granddaughter going through this. My daughter is following her doctors orders but I’m having doubts. The doctor said there are only 31 cases of this. How could they know how to treat this without knowing enough about it? My granddaughter has been going to All Childrens Hospital in Tampa Fl.
@@colleengilroy624 sadly any type of rare condition, it takes many studies before they find treatment. In some situations they don't find a treatment, they end up just managing symptoms. I can't imagine how painful it must be for you, your daughter, and everyone seeing your granddaughter go through this. I checked the hospital and it is through John Hopkins which is an excellent hospital. They do a lot of research and they may come across something that can help. Is there another doctor in the clinic that can give a second opinion? My sons go to Children's Hospital of Los Angeles for a different condition and I found once I found a doctor on the team I felt was best for my sons, I requested that my sons see him. Sometimes getting to know the other physicians helps. I found that doctors who listen, are willing to answer questions, and involve the parents in the care plan really care and are trying their best. If the current doctor is doing that and helping your daughter find all the resources she needs, then sadly he may not be able to do more. If the doctor does not answer questions or is demanding, that is a red flag and that is when you want a second opinion. The benefit of being at a Children's Hospital is along with the specialist, they will have social workers, psychologists, physical and occupational therapists, child life specialists and more there. They will be able to put together a plan to do everything to help your granddaughter. You are welcome to keep in touch if you need anymore information or any way I can help. You can email me at info@defeatingepilepsy.org.
@@DefeatingEpilepsyFoundation Again, thank you for responding so quick. This does relieve some of my anxiety. I’ll pass this along to my daughter when I see her in the morning. I truly appreciate your advice and heartfelt concern. I wish you and your sons well ❤️
@@colleengilroy624 you are welcome. I'm glad that I could help in some way and please do not hesitate to contact me if you need anything. Thank you so much for your support.
Not necessarily. A lot of times it depends on how the person developed epilepsy. If someone has progressive myoclonic epilepsy, they are more likely to have a shorter life span because it really takes a toll on the persons' quality of life.
I was diagnosed with Myoclonic seizures when I was diagnosed with stiff-person-syndrome. I recently to go to the ER because I couldn't stop after three hours I called the ambulance. The doctors in the ER had no clue what that even meant. She kept looking for epilepsy type symptoms and she told everyone that Iwas faking it. Because every muscle wasn't moving. Not a clue. They did give me something to sleep and that solved i5. I woke up ten hours later. They said I needed a bone scan and she came to get me and a nurse said I needed a pill first. That was true but 2 hours later and I just left the hospital with the IV still in my hand. And they never hooked it up. Too busy treating illegals.
Meri baby 1.5 month ki hai...meri baby zyadatar soti rhti hai...ya jagti bhi hai to zyada nhi roti..gumsum leti rhti hai...jab bhi soti hai to kaibaar uski body ekdm se akad jati hai and rone lagti hai....aur fir uske baad kuch seconds k lie unconscious type jo jati hai...fir normal ho jati hai...please mj guide krein me kya krun...mj bhut darr lagta hai aise apne baby ko dekhkar...
Hi...just saw your video and it really interest me...My 18 year old daughter starting twitching 3 weeks ago , the head falls forward sometimes backward, her hands jerks , her eyes and she gets week in her legs sometimes and fall, what do you suggested? she had a MRI done and EEG and to see a doctor in 2 months time at the hospital,that's the appointment she got October 27th. Is it wise to bring the result to a regular doctor even though the results are normal because she haven't been diagnosed yet.
I would keep records of everything and make sure that the primary doctor and specialist are communicating. The reason is if they officially diagnose her with epilepsy, you want the primary doctor to know about any treatment the specialist is doing or if he in time prescribes medication. Since she has not been diagnosed yet, I would keep a journal of how she is doing so if she has any episodes before her appointment, you have record of everything. It can take time to make a diagnosis. I have had epilepsy for 42 years now and there have been times my MRI and EEG's came back normal despite having numerous seizures in my life. I hope they are able to find out what is going on soon so your daughter gets the care she deserves.
@@janetcummings4418 thank you so much and many blessings to you and your family. You are very welcome and any time you have a question please let me know. Our email is info@defeatingepilepsy.org and you are welcome to reach out any time. We are here to help.
Is there more more information on information on negative myoclonic seizures? These are annoying. I have the jerky ones and they are annoying enough but random dropping stuff or knocking stuovse is really Gerrrrrr
Hi Rachel, I found a peer-review journal article on negative myoclonic seizures. Here is the link: www.ncbi.nlm.nih.gov/pmc/articles/PMC5548311/. I checked another presentation we have on myoclonic epilepsy and it did not mention the negative myoclonic seizures. Even though I have been battling epilepsy for 42 years now, I find I am learning so much not just from research, but from our supporters. I will do some research and put together a blog article and video on them. Thank you for bringing this to my attention. I want to make sure that the information our community needs gets to them. Thank you for your support.
@@DefeatingEpilepsyFoundation anything to help. It’s really a misunderstood condition. I spent like four hours yesterday writing a post for someone on Reddit. That was just curious wondering what it felt like to have a seizure and then I just kind of automatically told him what to do in a seizure situation end stuff like that. Apparently, I also mentioned all the common misconceptions out of habit about what you should do. Try to write how to put the recovery position into place lol not sure how well that came out. I try to spare information where I can.
It’s weird. This has been a thing for most of my life. Didn’t have any seizures since I was 4 until I was 22, and then my brain decided it was gonna start up again and then they figured out that nope, id been having focal seizures for years and such. The first TC seizure was kinda what started it all again. Doctors where I was going to school decided it was PNES… no abnormal EEG findings… luckily the neurologist at my home town was like, “nope, those are definitely not PNES since my mom could describe them. My friend who observed the seizure in the town I was going to school in was totally blind and I guess because I have Asperger’s and am legally blind they thought it was just anxiety. I’ve wondered since how many people are misdiagnosed since the EEG doesn’t show anything when not actively in a seizure?
@@coffeecat086 I'm sorry you have been through so much. It can be easy to misdiagnose epilepsy if the EEG comes back normal. I have had epilepsy for 42 years now and I have had plenty of normal EEG's and abnormal EEG's. I'm glad your neurologist realized it was not PNES and you were able to get the care you need. Thank you again for bringing this to my attention. I am going to see what I can find so I can write about it for our blog and make a video for it.
Hey there! I'm also suffering from myoclonic epilepsy since 8 years. sometimes my EEG reports also comes normal but still I'm taking medicines from past 8 years. My question is that this type of epilepsy is curable or not? Should I take the medicines for lifetime or it is curable cause from last 8 to 10 months I've not faced any jerks or something also. So please can you give me some suggestions or answer to my question.
Epilepsy is not curable and you should follow any treatment plans that your doctor has put in place for you. If you are not having any jerks or seizure activity, it means the treatment that your doctor has put in place is working.
sure it is comment just like they said in the video, but it does not mean it's likely that you have when tourettes if you have epilepsi, especially myoclonic.
@@suadacorovic8021 My most recent seizure was a grand mal about 6 months ago and apparently I was twitching in my sleep a lot before it happened. I'm thinking this could be what was going on.
Whilst jerking and going off one on recently I shouted “cornflake” for absolutely no reason at all. Then I went stiff for a while on the armchair and went classic stare. It goes hazy and family have to explain the before and after and inbetween. It’s so so strange. I feel exhausted afterwards. I’ve never been diagnosed with Tourettes but the more this goes on, the weirder it gets. I’m still not medicated properly because my schizophrenia messes everything up. My poor brain lol. But we do have a laugh about it, well, I do, then they nervously join in. I prefer “cornflake” and “toffee crisp” to the awful profanities that sometimes have come out of my mouth as a middle aged woman! Good luck and warmest wishes to everyone affected by this condition x
My baby is 1.5 month old. During sleep generally she is used to get tight eg her hands will go up along with head...her eyes goes up and cries very loudly after the relaxation of muscles. This tightening frequency is increasing now
I have juvenile myoclonic epilepsy with tonic seizures wish my parents would have learned this stuff when I was a kid
I feel the same way. I have had epilepsy now for 44 years and I had to do my own research to understand what I was dealing with. If I would have had access to this information earlier in life, there are so many things I would have done differently.
I was recently diagnosed Myclonus Movements which are both Positive-jerks or Negative-loss of tone. Plus, I have been and once again, by a third opinion, suspected to have NocturnalFrontal Lobe seizures. The neurologist, a Sleep Medicine doctor, prescribed me Carbamazapine. It worked for my sleep seizures but exacerbated my Myoclonus. After some six months, i had to VA ER due to both legs dropping on me. I couldn't walk for a short period of minutes. Then waa weak. A past neurologist prescribed me Depakote for migraines. That cause dystonic head turning and leguscle spasming. I could deey muscles moving with no control. I had similar reactions to any antidepressants, including seratonin medications of several trials. Some I reacted within first or secind dose, some a week. All of them I had dystonic, tonic or hyperkinetic reactions. I will be starting Keppra within days, waiting for my prescription to be filled. I was never depressed. I was in severe nerve pain from nerve damage in my cervical spine and bone reconstruction surgeries, four total in Army. VA gave me antidepressants that caused reactions but only a VA Sleep doctors spotted that Sleep Study movements were not fitting the Sleep Disorder category I had been in for a decade. I was getting CPAP for over ten years. All that changed to Myclonus Movements and possible ADFLE. I waiting for results of my gene test.
I hope you get the gene test soon. I'm glad the sleep doctors at the VA spotted something. When it comes to your migraines, ask your neurologist about magnesium. My neurologist told me it helps to decrease migraines. I feel a lot better since being on magnesium. Vitamin D is good for reducing depression as well. This is from my personal experience so make sure the doctor gives you the ok before adding anything to your treatment plan.
just realising at 21, time to call the doctors tomorrow
I hope everything works out. It can be very difficult to diagnose epilepsy depending on the situation. I hope you are able to get the care you need.
Istg i hate having myoclonic seizures
A year ago, its about to be 2
On my 13th birthday i just woke up from a nap and i was going to do what my mom asked my legs felt weak and i had a light headed and collapsed on the floor (i can just call it me falling to the floor and little bit passing out)
It happened 3 times and my Dad found out my arms were twitching and tell me to sit down, and my mom was crying and i was little scared and confused and i had to go to the hospital for a FEW HOURS
it still happens and a few months later untill December 2022 i got stiffed when it got worse during a school morning, and it happened 2 times in February 2023 and it hurts...
No doctor couldn't found out what it was up until may 15 2023, i was diagnosed with myoclonic seizures and my mom was crying and scared and i was scared aswell and shocked
Good thing i now have treatment for my seizures and they work so far...
Sorry i had to vent about my story 😭💀👍
Damn long ass story 💀💀💀
It's ok, please feel free to share your story here. I developed epilepsy at the age of two due to a traumatic brain injury. I am 45 now and it has been a challenge living with epilepsy for 43 years. I still at times need to vent when I am dealing with the side effects of my medication or I'm having a bad day. I'm happy they found out what was happening and that treatment is going well for you.
@@DefeatingEpilepsyFoundation thanks for understanding me
And I’m so sorry you had to suffer with these types of seizures… I know how that feels…
@@theratlord3 you're welcome.
I have myclonic epilepsy too , i will begin to feel it when I wake up early or don't have enough sleep
Sleep deprivation is a seizure trigger for many. I myself have not experienced myoclonic seizures. I have had tonic-clonic, complex partial, and simple partial seizures.
Is raising of hand and feet is jerking?..I really want to know some examples of myclonic siezure ...my son is taking 2yrs of his medicine but sitll having a siezure..huhu...
@@maureenmacasa8677 I am not a doctor so I can't diagnose. When he raises his hands or feet, do they stiffen up or are they brief? If you are able to, record it on your cell phone and show it to the doctor. He or she will be able to make a diagnosis when seeing it directly. There are a couple of different types of seizures I can think of that people do that, but I don't want to suggest it is something and then it is not. If you cannot get it on camera, write down in a journal the date and time it happened, what symptoms took place, and how long did it last. That way you can provide to the doctor the information. It can take a long time and trying different medications before someone can get their seizures under control. Mine didn't get under control until my brain stopped growing around 25 and I started having them at 2. Please do everything you can to stay strong and take care of yourself so you can be there for your son. As a mother with two chronically ill children myself, I can empathize how hard it is to see your child not doing well. If you have any questions, you can email me at info@defeatingepilepsy.org.
@@M-R-Amal this happened to me 2 times when I went to sleep late and got up early
Am here to figure out what i have. Even typing is challenging. My fingers go limp. My hand jerks and the phone falls out of my hand and some days whats even scarier is that i almost collide with a passing vehicle when am riding my scooter or a bycycle. My hand or entire arm just jerks and i swerve to one side and i cant control knowing this is happening to me. I feel like a threat to the society as well as myself.
I would consult with your doctor to see what options you have. I am not a doctor, but what you are describing could be a seizure. I would have the doctor schedule some tests to confirm a diagnosis. You are not a threat to yourself or society, I can understand that this is scary when you are not one hundred percent sure what is going on. Please keep a journal and write down when you can what happened, at what time, and the date. If a family member can record it on a cell phone so the doctor can watch it, that will be very helpful for them. I have had epilepsy for 43 years now, and I can say there are times it still scares me when I am not doing well. Please stay strong and see the doctor as soon as you can.
I have aame jerks what are causes do I need to see doctor
Hi, I would talk and explain to the doctor what is going on. I am not a doctor so I cannot make a diagnosis. It could be a number of things. When you are experiencing symptoms, write down the date, time, and what you experienced. Keep a journal so when you go to the doctor, you have everything in order to show him or her.
Good video
Thank you!
Hello. Thank you for a very informative video. Do you think there is a connection between SPATA5 and myoclonic seizures? My 2 year old granddaughter was just diagnosed with SPATA5. She has many seizures all day. She’s on Levetiracetam and Divalproex DR
She still has many seizures a day.
Any information would be appreciated. Thank you.
Hi Colleen, yes there is a link between SPATA5 and myoclonic seizures. I found an article through the National Institute of Health explaining about SPATA5 and the different seizures associated with it. Here is the link: www.ncbi.nlm.nih.gov/pmc/articles/PMC5838984/ . I hope this helps. If you need anymore information or have questions, please let me know.
@@DefeatingEpilepsyFoundation
Thank you for the quick response.
I read all of that and didn’t understand most of it. I did see where there are myoclonic seizures in SPATA5 patients.
We are afraid we won’t be able to get these seizures under any kind of control. It pains me to see my granddaughter going through this.
My daughter is following her doctors orders but I’m having doubts. The doctor said there are only 31 cases of this. How could they know how to treat this without knowing enough about it?
My granddaughter has been going to All Childrens Hospital in Tampa Fl.
@@colleengilroy624 sadly any type of rare condition, it takes many studies before they find treatment. In some situations they don't find a treatment, they end up just managing symptoms. I can't imagine how painful it must be for you, your daughter, and everyone seeing your granddaughter go through this. I checked the hospital and it is through John Hopkins which is an excellent hospital. They do a lot of research and they may come across something that can help. Is there another doctor in the clinic that can give a second opinion? My sons go to Children's Hospital of Los Angeles for a different condition and I found once I found a doctor on the team I felt was best for my sons, I requested that my sons see him. Sometimes getting to know the other physicians helps. I found that doctors who listen, are willing to answer questions, and involve the parents in the care plan really care and are trying their best. If the current doctor is doing that and helping your daughter find all the resources she needs, then sadly he may not be able to do more. If the doctor does not answer questions or is demanding, that is a red flag and that is when you want a second opinion. The benefit of being at a Children's Hospital is along with the specialist, they will have social workers, psychologists, physical and occupational therapists, child life specialists and more there. They will be able to put together a plan to do everything to help your granddaughter. You are welcome to keep in touch if you need anymore information or any way I can help. You can email me at info@defeatingepilepsy.org.
@@DefeatingEpilepsyFoundation
Again, thank you for responding so quick. This does relieve some of my anxiety. I’ll pass this along to my daughter when I see her in the morning.
I truly appreciate your advice and heartfelt concern. I wish you and your sons well ❤️
@@colleengilroy624 you are welcome. I'm glad that I could help in some way and please do not hesitate to contact me if you need anything. Thank you so much for your support.
If you are diagnosed this from a result of an accident is it absolutely certain that the individual could have a shorter life expectancy?
Not necessarily. A lot of times it depends on how the person developed epilepsy. If someone has progressive myoclonic epilepsy, they are more likely to have a shorter life span because it really takes a toll on the persons' quality of life.
I was diagnosed with Myoclonic seizures when I was diagnosed with stiff-person-syndrome. I recently to go to the ER because I couldn't stop after three hours I called the ambulance. The doctors in the ER had no clue what that even meant. She kept looking for epilepsy type symptoms and she told everyone that Iwas faking it. Because every muscle wasn't moving. Not a clue. They did give me something to sleep and that solved i5. I woke up ten hours later. They said I needed a bone scan and she came to get me and a nurse said I needed a pill first. That was true but 2 hours later and I just left the hospital with the IV still in my hand. And they never hooked it up. Too busy treating illegals.
Meri baby 1.5 month ki hai...meri baby zyadatar soti rhti hai...ya jagti bhi hai to zyada nhi roti..gumsum leti rhti hai...jab bhi soti hai to kaibaar uski body ekdm se akad jati hai and rone lagti hai....aur fir uske baad kuch seconds k lie unconscious type jo jati hai...fir normal ho jati hai...please mj guide krein me kya krun...mj bhut darr lagta hai aise apne baby ko dekhkar...
Hi...just saw your video and it really interest me...My 18 year old daughter starting twitching 3 weeks ago , the head falls forward sometimes backward, her hands jerks , her eyes and she gets week in her legs sometimes and fall, what do you suggested? she had a MRI done and EEG and to see a doctor in 2 months time at the hospital,that's the appointment she got October 27th. Is it wise to bring the result to a regular doctor even though the results are normal because she haven't been diagnosed yet.
I would keep records of everything and make sure that the primary doctor and specialist are communicating. The reason is if they officially diagnose her with epilepsy, you want the primary doctor to know about any treatment the specialist is doing or if he in time prescribes medication. Since she has not been diagnosed yet, I would keep a journal of how she is doing so if she has any episodes before her appointment, you have record of everything. It can take time to make a diagnosis. I have had epilepsy for 42 years now and there have been times my MRI and EEG's came back normal despite having numerous seizures in my life. I hope they are able to find out what is going on soon so your daughter gets the care she deserves.
Wow...42years...I wish the best life for you with continuous blessings and thank you for replying.
@@janetcummings4418 thank you so much and many blessings to you and your family. You are very welcome and any time you have a question please let me know. Our email is info@defeatingepilepsy.org and you are welcome to reach out any time. We are here to help.
same problem . my MRI and EEG report are normal but still having those serious jerks
@@skyaesthetic9002 I really can't understand why those episode. why?
Is there more more information on information on negative myoclonic seizures? These are annoying. I have the jerky ones and they are annoying enough but random dropping stuff or knocking stuovse is really Gerrrrrr
Hi Rachel, I found a peer-review journal article on negative myoclonic seizures. Here is the link: www.ncbi.nlm.nih.gov/pmc/articles/PMC5548311/. I checked another presentation we have on myoclonic epilepsy and it did not mention the negative myoclonic seizures. Even though I have been battling epilepsy for 42 years now, I find I am learning so much not just from research, but from our supporters. I will do some research and put together a blog article and video on them. Thank you for bringing this to my attention. I want to make sure that the information our community needs gets to them. Thank you for your support.
@@DefeatingEpilepsyFoundation anything to help. It’s really a misunderstood condition. I spent like four hours yesterday writing a post for someone on Reddit. That was just curious wondering what it felt like to have a seizure and then I just kind of automatically told him what to do in a seizure situation end stuff like that. Apparently, I also mentioned all the common misconceptions out of habit about what you should do. Try to write how to put the recovery position into place lol not sure how well that came out. I try to spare information where I can.
It’s weird. This has been a thing for most of my life. Didn’t have any seizures since I was 4 until I was 22, and then my brain decided it was gonna start up again and then they figured out that nope, id been having focal seizures for years and such. The first TC seizure was kinda what started it all again. Doctors where I was going to school decided it was PNES… no abnormal EEG findings… luckily the neurologist at my home town was like, “nope, those are definitely not PNES since my mom could describe them. My friend who observed the seizure in the town I was going to school in was totally blind and I guess because I have Asperger’s and am legally blind they thought it was just anxiety. I’ve wondered since how many people are misdiagnosed since the EEG doesn’t show anything when not actively in a seizure?
@@coffeecat086 I'm sorry you have been through so much. It can be easy to misdiagnose epilepsy if the EEG comes back normal. I have had epilepsy for 42 years now and I have had plenty of normal EEG's and abnormal EEG's. I'm glad your neurologist realized it was not PNES and you were able to get the care you need. Thank you again for bringing this to my attention. I am going to see what I can find so I can write about it for our blog and make a video for it.
Hey there! I'm also suffering from myoclonic epilepsy since 8 years. sometimes my EEG reports also comes normal but still I'm taking medicines from past 8 years. My question is that this type of epilepsy is curable or not? Should I take the medicines for lifetime or it is curable cause from last 8 to 10 months I've not faced any jerks or something also. So please can you give me some suggestions or answer to my question.
Epilepsy is not curable and you should follow any treatment plans that your doctor has put in place for you. If you are not having any jerks or seizure activity, it means the treatment that your doctor has put in place is working.
@@DefeatingEpilepsyFoundation thank you so much for replying and yaa of course it's working...
Can i ask?? What medicine you take? My son also have a myoclonic seizure.. so many medicine but still myoclonic seizure
If it is common for Myoclonic seizures to be confused with tics, does that mean people are more likely to have Tourettes if they have Epilepsy?
sure it is comment just like they said in the video, but it does not mean it's likely that you have when tourettes if you have epilepsi, especially myoclonic.
@@suadacorovic8021 My most recent seizure was a grand mal about 6 months ago and apparently I was twitching in my sleep a lot before it happened. I'm thinking this could be what was going on.
Whilst jerking and going off one on recently I shouted “cornflake” for absolutely no reason at all. Then I went stiff for a while on the armchair and went classic stare. It goes hazy and family have to explain the before and after and inbetween. It’s so so strange. I feel exhausted afterwards. I’ve never been diagnosed with Tourettes but the more this goes on, the weirder it gets. I’m still not medicated properly because my schizophrenia messes everything up. My poor brain lol. But we do have a laugh about it, well, I do, then they nervously join in. I prefer “cornflake” and “toffee crisp” to the awful profanities that sometimes have come out of my mouth as a middle aged woman! Good luck and warmest wishes to everyone affected by this condition x
…
My baby is 1.5 month old. During sleep generally she is used to get tight eg her hands will go up along with head...her eyes goes up and cries very loudly after the relaxation of muscles. This tightening frequency is increasing now
Same problem my son is doing night time daily
@@cutebabyn6394 my baby got detected with epilepsy