You Guys are SOOOO Lucky!

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I am a 58 year old who was 14 when my nocturnal seizures started (1973). I got stuck on Dilantin until I grew up, got married and became pregnant. Then Tegretol. The internet JUST celebrated its 25th birthday. So when I was young and really needed a chat room/support it wasn't available! So I raised my family, drove my kids around and kept taking that 800 mg Tegretol and going to this old fart Neurologist who refused to take me off meds. Fastforward to 2016, 3 years post menopause. I came to the realization that I was getting too old to feel sedated and would someday need to take other meds...found a younger neurologist asked for a newer medication. Told him I haven't had seizure activity in 20 some years. So start KEPPRA 750 mg a day. Soon to be dropped to 500 mg a day. GOOD LUCK GUYS, BE VIGILENT, NOBODY CARES ABOUT YOU BUT YOU!!!

Comments

Welcome JillySorry you had a

Submitted by just_joe on Mon, 2016-08-08 - 21:55

Welcome JillySorry you had a neurologist that to yo uwas an old FART. But was it him only or did you really duscuss things with him? Understand that neurologists went into specialities back in the mid 80's.I started having seizures bout the wame age you did but my diagnosis wasn't made until 1964. When we moved to Dallas I was 20-21 so I was the one that chose the new neurologist. Oh and yess I do know about tegratol but add dilantin and phenobarb too it and the coctail was whicked. I went to N.M. in the early 80's and was back in Dallas in 94. I wenr back to the same group of neurologists. But Doc had changed his speciality to Parkinsons. He did intorduce me to hte next available neurologist that specialized in epilepsy. They all wanted to try and get me seizure free. The reason they did was not just because they wanted me on meds but because they wanted their patients questions answered. Like all the other neurologists before them. It took lot of years and many questions and a lot of trials to get where I am todat. I too went a few years without seizures only to have one. You see there is a difference between no seizures and no seizure activity. One of my docs retired and another took his place. My last neurologist was answering questions I had in the early 80's. So OI got answers fropm all of the neurologists or their assistants. Without questions they will always thnk everything is fine. Unless they are specialists they do not know about all the procedures and medications.Kind of like a person is put on a medication because it was made for their type of seizures an they find out they were moved to another medication whc was created for another type of seizure. Well seizure meds are created for certain typse of seizures. After approved they ar then testes to find out the other types of seizures theey can treat, After they have that information the testing starts to see the other types of medications they can be coupled with.There are people like me that can say they are controlled but will still have seizures. The procedures have all been checked and I am not a candidate for sergury because the scar tissue causing my epilepsy is in more then 1 lobe in the left side of my brain. You see questions were asked and Doc looked at everything from procedures to medications and coupling of medications. It took asking questions to get the answers. It also took neurologists looking for my answers. The new neurologist started you on 1/3rd of my dosage both morning and night.It takes having a good relationship with your doctors and always asking questions to get results. So without knowing what you did other then calling the neurologist an old fart I can't and won't put the onis on him/her alone...Oh and yess I know about no computers. I know what it took to get my questions answred. back then just like many today the neurologist or doctors talk to the parents about th diagnosis when we manted an answer. Mom couldn't answer th questions I had. Oh and back then there were party lines. Today the young people think a party line ios a number to call to find out where a party is

Welcome JillySorry you had a neurologist that to yo uwas an old FART. But was it him only or did you really duscuss things with him? Understand that neurologists went into specialities back in the mid 80's.I started having seizures bout the wame age you did but my diagnosis wasn't made until 1964. When we moved to Dallas I was 20-21 so I was the one that chose the new neurologist. Oh and yess I do know about tegratol but add dilantin and phenobarb too it and the coctail was whicked. I went to N.M. in the early 80's and was back in Dallas in 94. I wenr back to the same group of neurologists. But Doc had changed his speciality to Parkinsons. He did intorduce me to hte next available neurologist that specialized in epilepsy. They all wanted to try and get me seizure free. The reason they did was not just because they wanted me on meds but because they wanted their patients questions answered. Like all the other neurologists before them. It took  lot of years and many questions and a lot of trials to get where I am todat. I too went a few years without seizures only to have one. You see there is a difference between no seizures and no seizure activity. One of my docs retired and another took his place. My last neurologist was answering questions I had in the early 80's. So OI got answers fropm all of the neurologists or their assistants. Without questions they will always thnk everything is fine. Unless they are specialists they do not know about all the procedures and medications.Kind of like a person is put on a medication because it was made for their type of seizures an they find out they were moved to another medication whc was created for another type of seizure. Well seizure meds are created for certain typse of seizures. After approved they ar then testes to find out the other types of seizures theey can treat, After they have that information the testing starts to see the other types of medications they can be coupled with.There are people like me that can say they are controlled but will still have seizures. The procedures have all been checked and I am not a candidate for sergury because the scar tissue causing my epilepsy is in more then 1 lobe in the left side of my brain. You see questions were asked and Doc looked at everything from procedures to medications and coupling of medications. It took asking questions to get the answers. It also took neurologists looking for my answers. The new neurologist started you on 1/3rd of my dosage both morning and night.It takes having a good relationship with your doctors and always asking questions to get results. So without knowing what you did other then calling the neurologist an old fart I can't and won't put the onis on him/her alone...Oh and yess I know about no computers. I know what it took to get my questions answred. back then just like many today the neurologist or doctors talk to the parents about th diagnosis when we manted an answer. Mom couldn't answer th  questions I had. Oh and back then there were party lines. Today the young people think a party line ios a number to call to find out where a party is

Welcome JillySorry you had a neurologist that to yo uwas an old FART. But was it him only or did you really duscuss things with him? Understand that neurologists went into specialities back in the mid 80's.I started having seizures bout the wame age you did but my diagnosis wasn't made until 1964. When we moved to Dallas I was 20-21 so I was the one that chose the new neurologist. Oh and yess I do know about tegratol but add dilantin and phenobarb too it and the coctail was whicked. I went to N.M. in the early 80's and was back in Dallas in 94. I wenr back to the same group of neurologists. But Doc had changed his speciality to Parkinsons. He did intorduce me to hte next available neurologist that specialized in epilepsy. They all wanted to try and get me seizure free. The reason they did was not just because they wanted me on meds but because they wanted their patients questions answered. Like all the other neurologists before them. It took lot of years and many questions and a lot of trials to get where I am todat. I too went a few years without seizures only to have one. You see there is a difference between no seizures and no seizure activity. One of my docs retired and another took his place. My last neurologist was answering questions I had in the early 80's. So OI got answers fropm all of the neurologists or their assistants. Without questions they will always thnk everything is fine. Unless they are specialists they do not know about all the procedures and medications.Kind of like a person is put on a medication because it was made for their type of seizures an they find out they were moved to another medication whc was created for another type of seizure. Well seizure meds are created for certain typse of seizures. After approved they ar then testes to find out the other types of seizures theey can treat, After they have that information the testing starts to see the other types of medications they can be coupled with.There are people like me that can say they are controlled but will still have seizures. The procedures have all been checked and I am not a candidate for sergury because the scar tissue causing my epilepsy is in more then 1 lobe in the left side of my brain. You see questions were asked and Doc looked at everything from procedures to medications and coupling of medications. It took asking questions to get the answers. It also took neurologists looking for my answers. The new neurologist started you on 1/3rd of my dosage both morning and night.It takes having a good relationship with your doctors and always asking questions to get results. So without knowing what you did other then calling the neurologist an old fart I can't and won't put the onis on him/her alone...Oh and yess I know about no computers. I know what it took to get my questions answred. back then just like many today the neurologist or doctors talk to the parents about th diagnosis when we manted an answer. Mom couldn't answer th questions I had. Oh and back then there were party lines. Today the young people think a party line ios a number to call to find out where a party is

You Guys are SOOOO Lucky!

Comments

Welcome JillySorry you had a

Submitted by just_joe on Mon, 2016-08-08 - 21:55

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