I totally agree Randy- staying on meds is always good even if you haven't had any seizures in a while!
"Carry on. It is not easy. But it is what we have to do- only we do not have to do it alone."
First seizure: 1993
Officially diagnosed: 1999
Type: Secondary Generalized Tonic-Clonic Seizures
Cause: Unkown, all tests are negative for abnormalities...
Meds: 750mg Keppra 2xday
Hi guys,
GREAT topic, here, and good answers.
I just have one problem with Jess's seizure type is, because you don't just have it by it'self.
They need to do long term monitoring with her, so that they can catch where the activity starts, due to the fact that Secondarily Generalized TCs HAVE to evolve from either a Simple Partial or Complex Partial seizure.
There is no two ways about it. It is secondary to another type of partial seizure, and when the SGTC is the only thing that is seen by naked-eye, all the other symptoms for the SPS or CPS have evolves so fast that all you wind up seeing is the TC part of it.
I can guarentee you that for a fact.
I have a form of TLE called Mesial Temporal Lobe Epilepsy Syndrome, and I have epileptic auras, SPS, CPS, and SGTCs. They have differentiated the two in me, by that long-term monitoring, because I had both typs of convulsive seizures in there. The symptoms of each are the same, but one hits both sides of the brain from on-set, while the other one is secondary from a focus that starts spreading to other places, and they can catch that with VEEG.
I also have JAE or Juvenile Absence Epilepsy, another syndrome that is a life long thing with a genetic trait, and that is where I have the Absences and Primary Generalized TCs.
The Myoclonics I was born with.
The last Primary Generalized TC I had was one week ago today. The last partial seizure I had was on the 23 of December.
I just had to have my Depakote levels increased so now I take 1250mgs of that.
I also take 3600 mgs of Neurontin daily and have for 2 years. She may have to have a VEEG done in order to correctly diagnoses this, so that they can get you on the right meds.
My epilepsy was diagnosed 30.5 years to late, and has messed up my whole life. Sometimes a undiagnoses or a mis diagnoses can lead to further problems with seizure down the road.
I coudn't finish med school which I was 10 months away from doing 5 years ago, and had to go into something else with all the coursework I already had taken. I was studying to be a neuro, and had all my rotations in the local EMU, and I LOVED IT!! I though it was fun to be with those people, and cheer them up, visit with them, and still study.
Now I am one of THEM, and have seen it on both sides now, which is kind of interesting, because the last thing I wanted to be was diagnosed with epilepsy. I was scared of seizures all the way through grade school, and had nightmares for two weeks everytime either one of my two friends had them. My little friend and locker partner, whose name was Shelley had some variant of petite mal and SPS. My friend Christopher had TCs that were out of control, so the whole class got to watch his, and it was just gross.
Nancy
31 years old--born with epilepsy--undiagnosed for over 25 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 concussions, and shingles on the brain.
Initially diagnosed last April, and it was confirmed this March after a 9-day stay in the EMU.
Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.
I have epileptic aura, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures (nocturnal), and a reflex epilepsy as well with Absence and Myoclonic seizures. Myoclonics do occur as regular seizures in me, not just as a result of photic responses.
I failed 7 other drugs.
I take Depakote-1000 mgs and Neurontin--3600 mgs
--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!
GREAT topic, here, and good answers.
I just have one problem with Jess's seizure type is, because you don't just have it by it'self.
They need to do long term monitoring with her, so that they can catch where the activity starts, due to the fact that Secondarily Generalized TCs HAVE to evolve from either a Simple Partial or Complex Partial seizure.
There is no two ways about it. It is secondary to another type of partial seizure, and when the SGTC is the only thing that is seen by naked-eye, all the other symptoms for the SPS or CPS have evolves so fast that all you wind up seeing is the TC part of it.
I can guarentee you that for a fact.
I have a form of TLE called Mesial Temporal Lobe Epilepsy Syndrome, and I have epileptic auras, SPS, CPS, and SGTCs. They have differentiated the two in me, by that long-term monitoring, because I had both typs of convulsive seizures in there. The symptoms of each are the same, but one hits both sides of the brain from on-set, while the other one is secondary from a focus that starts spreading to other places, and they can catch that with VEEG.
I also have JAE or Juvenile Absence Epilepsy, another syndrome that is a life long thing with a genetic trait, and that is where I have the Absences and Primary Generalized TCs.
The Myoclonics I was born with.
The last Primary Generalized TC I had was one week ago today. The last partial seizure I had was on the 23 of December.
I just had to have my Depakote levels increased so now I take 1250mgs of that.
I also take 3600 mgs of Neurontin daily and have for 2 years. She may have to have a VEEG done in order to correctly diagnoses this, so that they can get you on the right meds.
My epilepsy was diagnosed 30.5 years to late, and has messed up my whole life. Sometimes a undiagnoses or a mis diagnoses can lead to further problems with seizure down the road.
I coudn't finish med school which I was 10 months away from doing 5 years ago, and had to go into something else with all the coursework I already had taken. I was studying to be a neuro, and had all my rotations in the local EMU, and I LOVED IT!! I though it was fun to be with those people, and cheer them up, visit with them, and still study.
Now I am one of THEM, and have seen it on both sides now, which is kind of interesting, because the last thing I wanted to be was diagnosed with epilepsy. I was scared of seizures all the way through grade school, and had nightmares for two weeks everytime either one of my two friends had them. My little friend and locker partner, whose name was Shelley had some variant of petite mal and SPS. My friend Christopher had TCs that were out of control, so the whole class got to watch his, and it was just gross.
Nancy
31 years old--born with epilepsy--undiagnosed for over 25 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 concussions, and shingles on the brain.
Initially diagnosed last April, and it was confirmed this March after a 9-day stay in the EMU.
Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.
I have epileptic aura, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures (nocturnal), and a reflex epilepsy as well with Absence and Myoclonic seizures. Myoclonics do occur as regular seizures in me, not just as a result of photic responses.
I failed 7 other drugs.
I take Depakote-1000 mgs and Neurontin--3600 mgs
--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!
Sorry, I'll change that it's a Simple partial seizure that always goes into a secondary generalized tonic clonic seizure. I just forgot to put that part in.
"Carry on. It is not easy. But it is what we have to do- only we do not have to do it alone."
"Carry on. It is not easy. But it is what we have to do- only we do not have to do it alone."
First seizure: 1993
Officially diagnosed: 1999
Type: Secondary Generalized Tonic-Clonic Seizures
Cause: Unkown, all tests are negative for abnormalities...
Meds: 750mg Keppra 2xday
Now it makes sense.
I have SGTCs that come off both SPS or CPS. I got to be one of the lucky ones who got all three types of seizures in that disorder. Some people only have one, some have two, and even rarer some have them all.
I can never get or have ANYTHING that is normal. It always has to be something different.
Like we are taught in medical school WHen you hear thundering hoofs think HORSES NOT ZEBRAS. That jsut means to look for and treat everything that is common, before you start playing around with ruling out the uncommon things, because occasionally you will hear hoofs and it will be a zebra. They just want you to use your head is all.
I am not sure how many of you actually have more than ONE Epiletic syndrome. I have two of them together, which is how I got so many types of seizures.
THe MTLES carries the epileptic auras, SPS, CPS, and SGTCs.
That is a syndrome caused by outside occurances, like all the years of abuse, concussions, broken jaws, brain infections, and scarring. It is a sub-type of TLE.
Then there is my JAE Juvenile Absence Epilepsy, and that carries with is Absence (main seizure type), and GTCs. Same family as JME.
It is inherited and will never go away, neither will the TLE, because it occured after 25 years old.
Then I have the Myoclonics I was born with. My birth mom did stupid things while carrying me. She smoked like a chimney, drank like a sailor, did pot, and some harder drug, and I was born going through drug withdrawal having Myoclonic seizures. The JAE didn't kick in until about 13 years old. But we still never figured out what was causing me to be sick, and I couldn't describe it, because I didn't know how to.
So, I have 6 types all together.
I hate it, I really do, even if I have a big mouth on here, with my medical school knowledge, that I will never get to use anywhere, because I was 10 months away from getting my MD 5 years ago, and had to drop out due to my own health, and couldn't complete it, so I got a degree in Health Care Services. I did that with active and obvious seizures, so don't give up, those of you who are in college or high school, because it can be done, I did it, and under the gun, by some harrassing teachers. I did get about 14 accomodations to help me succeed. I got Bs the last 3 years of school, and I got Bs and Cs in med school, and that is a tough program to get into.
My rotations were done through an EMU since I was studying to be a neuro, and once in a while, they had me in the neuro-trauma unit with those patients.
DON'T LOSE HOPE, YOU CAN ACHEIVE ANYTHING YOU WANT, IF YOU JUST TELL YOURSELF YOU CAN AND BELIEVE IN YOURSELF!!!
Enough of this nonsense, because now this is starting to go nowhere.
Nancy
31 years old--born with epilepsy--undiagnosed for over 25 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 concussions, and shingles on the brain.
Initially diagnosed last April, and it was confirmed this March after a 9-day stay in the EMU.
Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.
I have epileptic aura, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures (nocturnal), and a reflex epilepsy as well with Absence and Myoclonic seizures. Myoclonics do occur as regular seizures in me, not just as a result of photic responses.
I failed 7 other drugs.
I take Depakote-1000 mgs and Neurontin--3600 mgs
--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!
I have SGTCs that come off both SPS or CPS. I got to be one of the lucky ones who got all three types of seizures in that disorder. Some people only have one, some have two, and even rarer some have them all.
I can never get or have ANYTHING that is normal. It always has to be something different.
Like we are taught in medical school WHen you hear thundering hoofs think HORSES NOT ZEBRAS. That jsut means to look for and treat everything that is common, before you start playing around with ruling out the uncommon things, because occasionally you will hear hoofs and it will be a zebra. They just want you to use your head is all.
I am not sure how many of you actually have more than ONE Epiletic syndrome. I have two of them together, which is how I got so many types of seizures.
THe MTLES carries the epileptic auras, SPS, CPS, and SGTCs.
That is a syndrome caused by outside occurances, like all the years of abuse, concussions, broken jaws, brain infections, and scarring. It is a sub-type of TLE.
Then there is my JAE Juvenile Absence Epilepsy, and that carries with is Absence (main seizure type), and GTCs. Same family as JME.
It is inherited and will never go away, neither will the TLE, because it occured after 25 years old.
Then I have the Myoclonics I was born with. My birth mom did stupid things while carrying me. She smoked like a chimney, drank like a sailor, did pot, and some harder drug, and I was born going through drug withdrawal having Myoclonic seizures. The JAE didn't kick in until about 13 years old. But we still never figured out what was causing me to be sick, and I couldn't describe it, because I didn't know how to.
So, I have 6 types all together.
I hate it, I really do, even if I have a big mouth on here, with my medical school knowledge, that I will never get to use anywhere, because I was 10 months away from getting my MD 5 years ago, and had to drop out due to my own health, and couldn't complete it, so I got a degree in Health Care Services. I did that with active and obvious seizures, so don't give up, those of you who are in college or high school, because it can be done, I did it, and under the gun, by some harrassing teachers. I did get about 14 accomodations to help me succeed. I got Bs the last 3 years of school, and I got Bs and Cs in med school, and that is a tough program to get into.
My rotations were done through an EMU since I was studying to be a neuro, and once in a while, they had me in the neuro-trauma unit with those patients.
DON'T LOSE HOPE, YOU CAN ACHEIVE ANYTHING YOU WANT, IF YOU JUST TELL YOURSELF YOU CAN AND BELIEVE IN YOURSELF!!!
Enough of this nonsense, because now this is starting to go nowhere.
Nancy
31 years old--born with epilepsy--undiagnosed for over 25 years. Suffered bad abuse by dad causing repeated head injuries, 3 brain infections, 4 concussions, and shingles on the brain.
Initially diagnosed last April, and it was confirmed this March after a 9-day stay in the EMU.
Diagnosed with a sub-type of TLE called Mesial Temporal Lobe Epilepsy Syndrome with Amygdala-Hippocampal seizures.
I have epileptic aura, Simple Partial, Complex Partial and Secondarily Generalized Tonic-Clonic seizures (nocturnal), and a reflex epilepsy as well with Absence and Myoclonic seizures. Myoclonics do occur as regular seizures in me, not just as a result of photic responses.
I failed 7 other drugs.
I take Depakote-1000 mgs and Neurontin--3600 mgs
--TAKE WHAT YOU CAN DO AND DO YOUR BEST WITH IT!!!!
Great news! I hope....anyway. I was able to find an EEG from the early 90's that might show something that will help me get the treatment I need!! It shows an "isolated spike discharge". I'm hoping this will show my doctors that I really do have epilepsy. I'm not sure what their problem is. I don't know anyone that would actually fight to have epilepsy. Except for someone that actually has it. For some reason, if you don't have previous records, they don't believe that you have been DX'd prior. I just don't understand that. It's not like some other condition where a person might receive chronic narcotics as a form of treatment. All we get are drugs that make you feel absolutely horrible. That sounds like fun to me! lol I've been fighting for a 3rd DX for almost 1 year now. Why won't my neuro believe that I have been DX'd before. I was DX'd when I was 5 and again when I was 28 in the Army and had a seizure while training for a mission. My child neuro is retired and the records were destroyed after 7 years, and the Army doesn't keep records passed 1 year.
Shaun
Shaun
No one left behind!
1*
RLTW
oh Shaun I am so Happy for you. Hopefully this will help you get on the road for proper treatment. It is sad though to hear all of that testing is destroyed. But none the less you have somthing to work with now and that is great. How is your wife doing? WEll talk to you soon take care Tracy
Shaun,
Glad to hear from you again. It's great that you were able to locate an old EEG, now hopefuly, you'll be treated properly.
Randy
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day