Seizures Without Explanation

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My son had his first seizure at 18. Just out of the clear blue. Labs and scans were done, everything comes back normal. EEG was normal. The doctor didn't just throw my son a meds after one seizure. Which I was happy with this decision. A year of quiet and then it starts up again. Now they've increased and started happening in his sleep. Only happens at night or a little bit after waking. However, they have progressed into first myoclonic seizures followed by tonic- clonic seizures. He is 22 now. We saw a Neurologist for the first time last year. He quickly diagnosed my son with JME because of the age of onset, muscle jerks and so on. I feel this diagnosis was rushed. We are on anti-seizure meds now. Recently tried to wean from one med to another it sent him into a seizure. I've decided to further investigate this mysterious attack on my son. It's so difficult to watch someone go through this.

Comments

JME is often found in late

Submitted by Amy Jo on Fri, 2018-01-26 - 16:25

JME is often found in late childhood/teen years, everything you write sounds pretty typical (our child has had myoclonics with other seizure types but not JME although our child's epilepsy is genetic). Please know that most people don't know why they get epilepsy but there are increasing advances in genetics of epilepsy that do explain many types of epilepsies; JME is a genetic epilepsy.It is huge shock to a person and their families to get a diagnosis of epilepsy. There aren't a lot of clear definitive answers or tests although for JME the EEG is more helpful for a clinical diagnosis. It's frustrating and there can be a long period of adjustment/acceptance. I would suggest that you learn more about JME. Have you seen the info on this site to start? https://www.epilepsy.com/learn/types-epilepsy-syndromes/juvenile-myoclonic-epilepsy

Anybody at any age can get

Submitted by just_joe on Sun, 2018-01-28 - 16:44

Anybody at any age can get epilepsy. Epilepsy does not discriminate. It has been that way for thousands of years. There is and has been a stigma associated with it which doctors and other people are trying to get rid of. You might want to get rid of it if you know about the stigma.Most docs do not prescribe meds after one seizure. So his first known seizure was when he was 18 no meds prescribed. He was fine for a year then other seizures started. <<All it takes to diagnose Epilepsy is 2 seizures. Which what you have posted he has had more then 2. The first seizure that you KNEW of was when he was 18. Could he have been having seizures prior to that?? Highly possible since some seizures look like the people in them are daydreaming. I have some where my right hand feels weirs for a few seconds. You wouldn't know I had one if we were watching each other. Have you ever seem a muscle twitch???He saw his first neurologist last year and was diagnosed with JME and was prescribed meds.. You now think the diagnosis was quick.. Neurologists do listen to the patients and the people that are with them. If you told the neurologist about the different types of seizures he has had and what happened in them his diagnosis would be about right. I say that because you can research the different seizures and types of epilepsy they can fall in.We tried to wean him off one med another but he had a seizure. <<Sure hope the neurologist was wanting you to do that and knew it was being done. Now have you ever read about seizure meds and the therapeutic levels in the body?? Do you even know what therapeutic levels are? Understand that too much medications is just as bad as too little. Meaning your son could have seizures if the dose was to small or have a seizure if the dose was to large. It takes time for the therapeutic levels to build in the body and just as long to leave the body. Each medication has it's own levels. Some medications start stopping seizures faster then other meds. They stay in the body 3-4 weeks after the last pill is taken. So the neurologist did what they had done before with other patients. Each person is different. Do you eat drink and do everything the person next door does or are your dosages for colds the same as they are for your kids? It is just like eating foods. For some people Italian food is great but to others it gives them gas rapidly. Do you drink everything like others do. Is your coffee black or with cream?Now you decided to further investigate this MYSTEROUS ATTAK. <<< What MYSTERIOUS ATTACK??? Mam if you THINK IT IS DIFFIULY TO WATCH Have you ever been in a seizure of any kind?? Do you know what it is like looking at family members that do not know what to do? What it is like seeing family counting your pills after being asked if you took your pills? That isn't a nice thing to see after answering them especially if you keep track of your pills and can tell them when they need to be ordered.You can do what you want because that is your decision. But your son needs his questions answered and his health is his concern too since he is not a child and an be considered an adult.At 20 I moved to another state and had meds to last 6 months, So I found a neurologist and set up an appointment which was done when I was 21. OH and Mom went and she answered Docs questions. But the neurologist was mine and he asked me questions. He had files filled out by neurologists in California along with their diagnosis. Guess what Mom didn't need to come to my meetings anymore since I was an adult. Mom did talk to Doc and has talked to a few others since as one leaves another takes his place. I have been a patient of that same group of neurologists since 1971 and as they started specializing I was moved over into the neurologists that specialize in epilepsy. If I were you I would follow the neurologists instructions and research the different types of seizures your son might have since he can have several different seizures. You might also want to research triggers, different syndromes and read things in the LEARN section. OH and they do have a 24/7 help line you could call for answers. I believe the number is 1-800-332-1000I hope this helps and he gets the assistance he needs.Joe

Anybody at any age can get epilepsy. Epilepsy does not discriminate. It has been that way for thousands of years. There is and has been a stigma associated with it which doctors and other people are trying to get rid of. You might want to get rid of it if you know about the stigma.Most docs do not prescribe meds after one seizure. So his first known seizure was when he was 18 no meds prescribed. He was fine for a year then other seizures started. <<All it takes to diagnose Epilepsy is 2 seizures. Which what you have posted he has had more then 2. The first seizure that you KNEW of was when he was 18. Could he have been having seizures prior to that?? Highly possible since some seizures look like the people in them are daydreaming. I have some where my right hand feels weirs for a few seconds. You wouldn't know I had one if we were watching each other. Have you ever seem a muscle twitch???He saw his first neurologist last year and was diagnosed with JME and was prescribed meds.. You now think the diagnosis was quick.. Neurologists do listen to the patients and the people that are with them. If you told the neurologist about the different types of seizures he has had and what happened in them his diagnosis would be about right. I say that because you can research the different seizures and types of epilepsy they can fall in.We tried to wean him off one med another but he had a seizure.  <<Sure hope the neurologist was wanting you to do that and knew it was being done.  Now have you ever read about seizure meds and the therapeutic levels in the body?? Do you even know what therapeutic levels are? Understand that too much medications is just as bad as too little. Meaning your son could have seizures if the dose was to small or have a seizure if the dose was to large. It takes time for the therapeutic levels to build in the body and just as long to leave the body. Each medication has it's own levels. Some medications start stopping seizures faster then other meds. They stay in the body 3-4 weeks after the last pill is taken. So the neurologist did what they had done before with other patients. Each person is different. Do you eat drink and do everything the person next door does or are your dosages for colds the same as they are for your kids? It is just like eating foods. For some people Italian food is great but to others it gives them gas rapidly. Do you drink everything like others do. Is your coffee black or with cream?Now you decided to further investigate this MYSTEROUS ATTAK. <<< What MYSTERIOUS ATTACK??? Mam if you THINK IT IS DIFFIULY TO WATCH Have you ever been in a seizure of any kind?? Do you know what it is like looking at family members that do not know what to do? What it is like seeing family counting your pills after being asked if you took your pills? That isn't a nice thing to see after answering them especially if you keep track of your pills and can tell them when they need to be ordered.You can do what you want because that is your decision. But your son needs his questions answered and his health is his concern too since he is not a child and an be considered an adult.At 20 I moved to another state and had meds to last 6 months, So I found a neurologist and set up an appointment which was done when I was 21. OH and Mom went and she answered Docs questions. But the neurologist was mine and he asked me questions. He had files filled out by neurologists in California along with their diagnosis. Guess what Mom didn't need to come to my meetings anymore since I was an adult. Mom did talk to Doc and has talked to a few others since as one leaves another takes his place. I have been a patient of that same group of neurologists since 1971 and as they started specializing I was moved over into the neurologists that specialize in epilepsy. If I were you I would follow the neurologists instructions and research the different types of seizures your son might have since he can have several different seizures. You might also want to research triggers, different syndromes and read things in the LEARN section. OH and they do have a 24/7 help line you could call for answers. I believe the number is 1-800-332-1000I hope this helps and he gets the assistance he needs.Joe

Anybody at any age can get epilepsy. Epilepsy does not discriminate. It has been that way for thousands of years. There is and has been a stigma associated with it which doctors and other people are trying to get rid of. You might want to get rid of it if you know about the stigma.Most docs do not prescribe meds after one seizure. So his first known seizure was when he was 18 no meds prescribed. He was fine for a year then other seizures started. <<All it takes to diagnose Epilepsy is 2 seizures. Which what you have posted he has had more then 2. The first seizure that you KNEW of was when he was 18. Could he have been having seizures prior to that?? Highly possible since some seizures look like the people in them are daydreaming. I have some where my right hand feels weirs for a few seconds. You wouldn't know I had one if we were watching each other. Have you ever seem a muscle twitch???He saw his first neurologist last year and was diagnosed with JME and was prescribed meds.. You now think the diagnosis was quick.. Neurologists do listen to the patients and the people that are with them. If you told the neurologist about the different types of seizures he has had and what happened in them his diagnosis would be about right. I say that because you can research the different seizures and types of epilepsy they can fall in.We tried to wean him off one med another but he had a seizure. <<Sure hope the neurologist was wanting you to do that and knew it was being done. Now have you ever read about seizure meds and the therapeutic levels in the body?? Do you even know what therapeutic levels are? Understand that too much medications is just as bad as too little. Meaning your son could have seizures if the dose was to small or have a seizure if the dose was to large. It takes time for the therapeutic levels to build in the body and just as long to leave the body. Each medication has it's own levels. Some medications start stopping seizures faster then other meds. They stay in the body 3-4 weeks after the last pill is taken. So the neurologist did what they had done before with other patients. Each person is different. Do you eat drink and do everything the person next door does or are your dosages for colds the same as they are for your kids? It is just like eating foods. For some people Italian food is great but to others it gives them gas rapidly. Do you drink everything like others do. Is your coffee black or with cream?Now you decided to further investigate this MYSTEROUS ATTAK. <<< What MYSTERIOUS ATTACK??? Mam if you THINK IT IS DIFFIULY TO WATCH Have you ever been in a seizure of any kind?? Do you know what it is like looking at family members that do not know what to do? What it is like seeing family counting your pills after being asked if you took your pills? That isn't a nice thing to see after answering them especially if you keep track of your pills and can tell them when they need to be ordered.You can do what you want because that is your decision. But your son needs his questions answered and his health is his concern too since he is not a child and an be considered an adult.At 20 I moved to another state and had meds to last 6 months, So I found a neurologist and set up an appointment which was done when I was 21. OH and Mom went and she answered Docs questions. But the neurologist was mine and he asked me questions. He had files filled out by neurologists in California along with their diagnosis. Guess what Mom didn't need to come to my meetings anymore since I was an adult. Mom did talk to Doc and has talked to a few others since as one leaves another takes his place. I have been a patient of that same group of neurologists since 1971 and as they started specializing I was moved over into the neurologists that specialize in epilepsy. If I were you I would follow the neurologists instructions and research the different types of seizures your son might have since he can have several different seizures. You might also want to research triggers, different syndromes and read things in the LEARN section. OH and they do have a 24/7 help line you could call for answers. I believe the number is 1-800-332-1000I hope this helps and he gets the assistance he needs.Joe

There is NOTHING rushed about

Submitted by mereloaded on Sat, 2018-02-03 - 19:28

There is NOTHING rushed about diagnosing a patient that is having the worse type of seizures for FOUR years. To be quite honest the Denial and waiting all this time is adverse to health and makes epilepsy much much worse, with irreversible damage. treatmemt helps with the symptoms. Denial is not helpful. There is no more proof needed than having epileotyc seizures of the worse kind for half a decade. Honestly I don’t get why do you think his diagnosis is not appropriate.