Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Feeling Helpless and Lost
Thu, 09/23/2004 - 16:44Comments
RE: RE: RE: Feeling Helpless and Lost
Submitted by LeeMc on Tue, 2004-09-21 - 12:03
Hi everybody....Lee here. Isn't it wonderful to know that no matter where we are with this - we aren't alone! Mine is a result of a head injury over 30 years ago - before modern science when it seemed absolutely everything was a guessing game and trial and error. They guessed right on the second set of meds tried and I have been seizure free for almost 30 years.
I got through it by first getting mad. Not at E but at why nobody seemed to care why it was happening to me. Focusing my energy and my anger on getting somebody to get to the bottom of it with me helped. Medicine has changed and so have the docs. There are whole centers now that treat E and what it takes to live with it or get past it. Wish they had been there then but they are here now so find one that treats the whole experience - not just the seizures.
Curve ball - menopause! Now everything is confused again and what used to be a sure thing isn't so sure anymore. Med side effects are also taking their toll or at least contributing. Oh life is still very livable and I plan on living every minute of it - I may just need to make a few adjustments. Going to go to one of those E centers (as soon as insurance will cover it) and find out just where I am today and what options I have - because I am not done living yet!
Thanks everybody for being here when I need you and especially those times when we all need each other................Lee
Hi everybody....Lee here. Isn't it wonderful to know that no matter where we are with this - we aren't alone! Mine is a result of a head injury over 30 years ago - before modern science when it seemed absolutely everything was a guessing game and trial and error. They guessed right on the second set of meds tried and I have been seizure free for almost 30 years.
I got through it by first getting mad. Not at E but at why nobody seemed to care why it was happening to me. Focusing my energy and my anger on getting somebody to get to the bottom of it with me helped. Medicine has changed and so have the docs. There are whole centers now that treat E and what it takes to live with it or get past it. Wish they had been there then but they are here now so find one that treats the whole experience - not just the seizures.
Curve ball - menopause! Now everything is confused again and what used to be a sure thing isn't so sure anymore. Med side effects are also taking their toll or at least contributing. Oh life is still very livable and I plan on living every minute of it - I may just need to make a few adjustments. Going to go to one of those E centers (as soon as insurance will cover it) and find out just where I am today and what options I have - because I am not done living yet!
Thanks everybody for being here when I need you and especially those times when we all need each other................Lee
RE: Feeling Helpless and Lost
Submitted by mexican_fire on Thu, 2004-09-23 - 16:44
Don't feel helpless from a little problem like this. We are all in teh same boat for about 6 months to a year afer we get our diagnoses.
I was jsut diagnosed this May. I have already figured out ways to get around feeling like crap all the time. I go for a bile ride or a walk, or take Dial-a-Ride to the store and meet friends to shop for a few hours, then I get back on teh bus, and go back home. I also read, go to the library for a few hours at least once a week to keep my mind active and growing despite the damage I ahve from the seizures. I like to watch TV, play on the internet, and run a business in my home for people in the church and watch their small dogs when they go out of town. I sew when I am not all shaky, I listen to music, swim, meet friends for lunch or in other locations, do things with my mom, clean the house, water the trees and flowers (when I can remember), do the dishes etc.
I never used to do this sort of thing all the time, but I have to keep active, because the more you sit around doing nothing, the more you think about it, and the more seizures you will have. That is a proven fact, and my neurologist and epileptologist both have told me to get off my keester and find things to do. Just because I can't drive, doesn't mean I can't take walks, go places via public transportation, and ride my bike.
Please don't punshi yourself because you have epilepsy. There are ways to get outside and do things, and you DO NOT have to depend on your famioy and friends to take you places inbetween what they are doing. You can do it when you want via Dial-a-Ride.
There is no reason that you can't get outside and jsut take a walk around the neighborhodd with your kids.
I have a brochure from the Epilepsy Foundation that is a Q&A thing. The question is: Should people with E try to stay calm and quiet and stay at home so they don't have seizures?
The answer to that one is: No, They should be out in the world with other people adn their families doing things. A person who is active and busy is not as likely to have seizures, as the ones who stay hidden in their homes.
For your memory you can always get a large desk blotter and write everything down on it, and take post-its and put them around the house. I do this, and it works quite well. I also have a daily planner small enough to go in my purse, but big enough to write on it.
I don't know how bad or severe your seizures are or what types you have.
I have actually had epilepsy as an infant and child, but it was undiagnosed and misdiagnosed for my entire life. The adoption aganecy never told my parents about it, and they had to have known, and then as I got ready to go to school, it really affected my behavior by the second grade, and my grades were not the best and I missed alot of information the teacher was telling. It was like she was the one who skipped it, not me. That killed me by MS, and HS, because my grades suffered even more, and I went into JC with horrible grades from HS. I even graduated 3 months late, because I failed AMERICAN GOVT., so I had totake it in a 3 month summer course, or be forced to repeat the 12th grade. That was already a mess, because they had placed me in a remedial math class with all the dummies.
WhenI got to JC, I had to take algebra, and my math skills were never there, so I wound up repeating it 7 times, before they finally jsut let me out of it. I did well enough there to move on to state level and went to Youngstown State University in Ohio where I lived, and was there for 5 years, and the last thrree years I was able to get ADA certified and the school got me the accomodations I needed to succeed. I got all Bs the last 3 years with the exception of a D, F, a few Cs, and some As. I graduated with a 2.5 GPA, and I had to work like a dog to get that, so naturally I am proud of it.
I had a teacher for 4 years for various medical classes that constantly gave me a hard time about everything, and he didn't want anything to do with this epilepsy, TMJ, or Migraines, and he put me in one of his classes that had math, but never told me there was, so I didn't do well, and when I got sick of what he was doing, I got the preliminary paper work ready to turn in to start the greivance against him. I didn't get it in in time, and he conspired with anotehr teacher to try and fail me, but since I was doing the works, he coudln't, and this dude was mad. Then I tried to reverse the F he gave me, and he said I didn't fit the criteria. He kept me from graduating, but I als was in a car wreck two weeks before the end of the semester and was out for a week of both work adn school, and still mamged to pull Bs in the optehr two classes.
I moved to Phoenix in December that year, and took one of the the two classes I still needed at The University of Toledo (on-line), and the last one in person at ASU. I got Bs in both.
I went back to Ohio to Graduate that Agust, and and had a huge Tonic Clonic the night before in the hotel room, but still went to graduation as wiped out as possible, and the little added feature was I was in a cast with crutches and had to be pushed up the ramp by some faculty member.
It was a real trip through the air plane, and two air-ports. We stopped twice for some dumb reason.
So, after that, my mom took me back to the neuro I had and he ran more tests, and said that I definately have seizure activity going on. That time it was generalized wave patterns. The nexdt two times were pointing at the temporal lobe. he started me on Neurontin adn it was added to the Tegretol XR that I had been on for almost 2 years from my doc in Ohio, and he increased it to the max, and sent me on my way to the number one clinic in the country that has the numbers 4 and 7 epileptolgists in it, and one of which I have, and he is really a caring and compassionate man and take the time to listen to his patients.
My doc is # 7, and his colleague is # 4. BNI is the #1 facility in the country for neurological disorders in the country, and Johns Hopkins falls in right behind them, followed by the Mayo Clinic.
They did anotehr EEG and it was also abnormal for the temporal lobe. They started me on Topamax--NASTY DRUG--and I was taking these 3 AEDs for abotu 6 months, when they made an admission to the EMU for a VEEG, and removed my meds upon admission to cause me to seize, and they got an eyeful. I started to seize by the 3rd day, and that day I had a whole series of Simple Partials that were on and off all day long, then I had a day where there was nothing, so they did the EEG again, and it was again abnormal with generalized activity, and the 5th day I had an Absence seizure, several of them and a Complex Partial, the 6th day I had a Myoclonic seizure.
I was released very early in the morning on the 9th day, and they gaveme only my Neurontin, and then 2 weeks later gave me Depakoet ER.
I went back in May for the follow up, and got the diagnoses of TLE with other seizure types.
Having had seizure all my life but more so in the last 4 years has caused me to have problems with my memory. I am 31 now.
The hippocampus a structure in teh temporal lobes is the memory center and is in charge of how they are stored, retrieved, made, whether it is short term or long term.
Most people with focal seizures namely the temporal lobes have the most trouble with thsi, since it is located in teh lobe.
Frontal lobe seizures are alot like temporal lobe seizuer in appearance, but the come from a different location. The symptoms vary in that people get on their backs on the floor and make bycling motions with their legs in the air, they run from something, they flail their arms, and thrust their pelvises or make sexual gesters. Some even disrobe and urinate on teh floor. Otherwise the symptomology is exact.
Anotehr way to deal with epilepsy is to become a member of your local EF, or join the national on and beomce a part of their discussion forums.
You can join a local support group and meet otehr people. You can go to counseling to learn better methods of coping and dealing with it that will make it easier on you. They made me go, becasue it had been soemthing that was caused by accumulative brain damage from being abused by my dad, having 3 brain infections, and suffering a sever consussion in that car wreck.
I ahven't driven in 2 years, but I take the dial-a-Ride and I can go anywhere I want, when I want. I also jsut got a card for a discount on Dial-a-Ride for the diabled, so I only have to pay that fare, and not what the general public pays.
I have failed the follwing drugs: Tegretol XR, Tegretol, Chewable Tegretol, Carbamazapine, Carbatrol, Ativan, and Topamax.
I currently take the maximum amount of Neurontin--3600 mgs, and 1000 mgs of Depakote ER.
I have FIVE different seizure types. I have Absence, Myoclonic, Simple Partial, Complex Partial, and Secondarily Generalized Tonic-Clonic seizures.
The last 3 are the TLE. The other two are from who knows where. They are pretty sure that the Absence are left over from childhood, since it was never treated or diagnosed, because of my dad's controlling character, it is still with me.
The Myoclonics are jsut some stray seizrue type that jsut decided to join the party, I guess. They thought they were missing out on something.
The Neurontin is to control the partial seizures, which are stubborn. IT is a drug that has a narrow margin of treatment, meaning it only treats specific thing, not a whole bunch, and in this case it is used in ADULTS to treat hard-to-control partial seizures.
The Depakote is considered a braod spectrum AED and treats every single type there is practically, adn I take it to control the other two types.
Good luck.
Nancy
Don't feel helpless from a little problem like this. We are all in teh same boat for about 6 months to a year afer we get our diagnoses.
I was jsut diagnosed this May. I have already figured out ways to get around feeling like crap all the time. I go for a bile ride or a walk, or take Dial-a-Ride to the store and meet friends to shop for a few hours, then I get back on teh bus, and go back home. I also read, go to the library for a few hours at least once a week to keep my mind active and growing despite the damage I ahve from the seizures. I like to watch TV, play on the internet, and run a business in my home for people in the church and watch their small dogs when they go out of town. I sew when I am not all shaky, I listen to music, swim, meet friends for lunch or in other locations, do things with my mom, clean the house, water the trees and flowers (when I can remember), do the dishes etc.
I never used to do this sort of thing all the time, but I have to keep active, because the more you sit around doing nothing, the more you think about it, and the more seizures you will have. That is a proven fact, and my neurologist and epileptologist both have told me to get off my keester and find things to do. Just because I can't drive, doesn't mean I can't take walks, go places via public transportation, and ride my bike.
Please don't punshi yourself because you have epilepsy. There are ways to get outside and do things, and you DO NOT have to depend on your famioy and friends to take you places inbetween what they are doing. You can do it when you want via Dial-a-Ride.
There is no reason that you can't get outside and jsut take a walk around the neighborhodd with your kids.
I have a brochure from the Epilepsy Foundation that is a Q&A thing. The question is: Should people with E try to stay calm and quiet and stay at home so they don't have seizures?
The answer to that one is: No, They should be out in the world with other people adn their families doing things. A person who is active and busy is not as likely to have seizures, as the ones who stay hidden in their homes.
For your memory you can always get a large desk blotter and write everything down on it, and take post-its and put them around the house. I do this, and it works quite well. I also have a daily planner small enough to go in my purse, but big enough to write on it.
I don't know how bad or severe your seizures are or what types you have.
I have actually had epilepsy as an infant and child, but it was undiagnosed and misdiagnosed for my entire life. The adoption aganecy never told my parents about it, and they had to have known, and then as I got ready to go to school, it really affected my behavior by the second grade, and my grades were not the best and I missed alot of information the teacher was telling. It was like she was the one who skipped it, not me. That killed me by MS, and HS, because my grades suffered even more, and I went into JC with horrible grades from HS. I even graduated 3 months late, because I failed AMERICAN GOVT., so I had totake it in a 3 month summer course, or be forced to repeat the 12th grade. That was already a mess, because they had placed me in a remedial math class with all the dummies.
WhenI got to JC, I had to take algebra, and my math skills were never there, so I wound up repeating it 7 times, before they finally jsut let me out of it. I did well enough there to move on to state level and went to Youngstown State University in Ohio where I lived, and was there for 5 years, and the last thrree years I was able to get ADA certified and the school got me the accomodations I needed to succeed. I got all Bs the last 3 years with the exception of a D, F, a few Cs, and some As. I graduated with a 2.5 GPA, and I had to work like a dog to get that, so naturally I am proud of it.
I had a teacher for 4 years for various medical classes that constantly gave me a hard time about everything, and he didn't want anything to do with this epilepsy, TMJ, or Migraines, and he put me in one of his classes that had math, but never told me there was, so I didn't do well, and when I got sick of what he was doing, I got the preliminary paper work ready to turn in to start the greivance against him. I didn't get it in in time, and he conspired with anotehr teacher to try and fail me, but since I was doing the works, he coudln't, and this dude was mad. Then I tried to reverse the F he gave me, and he said I didn't fit the criteria. He kept me from graduating, but I als was in a car wreck two weeks before the end of the semester and was out for a week of both work adn school, and still mamged to pull Bs in the optehr two classes.
I moved to Phoenix in December that year, and took one of the the two classes I still needed at The University of Toledo (on-line), and the last one in person at ASU. I got Bs in both.
I went back to Ohio to Graduate that Agust, and and had a huge Tonic Clonic the night before in the hotel room, but still went to graduation as wiped out as possible, and the little added feature was I was in a cast with crutches and had to be pushed up the ramp by some faculty member.
It was a real trip through the air plane, and two air-ports. We stopped twice for some dumb reason.
So, after that, my mom took me back to the neuro I had and he ran more tests, and said that I definately have seizure activity going on. That time it was generalized wave patterns. The nexdt two times were pointing at the temporal lobe. he started me on Neurontin adn it was added to the Tegretol XR that I had been on for almost 2 years from my doc in Ohio, and he increased it to the max, and sent me on my way to the number one clinic in the country that has the numbers 4 and 7 epileptolgists in it, and one of which I have, and he is really a caring and compassionate man and take the time to listen to his patients.
My doc is # 7, and his colleague is # 4. BNI is the #1 facility in the country for neurological disorders in the country, and Johns Hopkins falls in right behind them, followed by the Mayo Clinic.
They did anotehr EEG and it was also abnormal for the temporal lobe. They started me on Topamax--NASTY DRUG--and I was taking these 3 AEDs for abotu 6 months, when they made an admission to the EMU for a VEEG, and removed my meds upon admission to cause me to seize, and they got an eyeful. I started to seize by the 3rd day, and that day I had a whole series of Simple Partials that were on and off all day long, then I had a day where there was nothing, so they did the EEG again, and it was again abnormal with generalized activity, and the 5th day I had an Absence seizure, several of them and a Complex Partial, the 6th day I had a Myoclonic seizure.
I was released very early in the morning on the 9th day, and they gaveme only my Neurontin, and then 2 weeks later gave me Depakoet ER.
I went back in May for the follow up, and got the diagnoses of TLE with other seizure types.
Having had seizure all my life but more so in the last 4 years has caused me to have problems with my memory. I am 31 now.
The hippocampus a structure in teh temporal lobes is the memory center and is in charge of how they are stored, retrieved, made, whether it is short term or long term.
Most people with focal seizures namely the temporal lobes have the most trouble with thsi, since it is located in teh lobe.
Frontal lobe seizures are alot like temporal lobe seizuer in appearance, but the come from a different location. The symptoms vary in that people get on their backs on the floor and make bycling motions with their legs in the air, they run from something, they flail their arms, and thrust their pelvises or make sexual gesters. Some even disrobe and urinate on teh floor. Otherwise the symptomology is exact.
Anotehr way to deal with epilepsy is to become a member of your local EF, or join the national on and beomce a part of their discussion forums.
You can join a local support group and meet otehr people. You can go to counseling to learn better methods of coping and dealing with it that will make it easier on you. They made me go, becasue it had been soemthing that was caused by accumulative brain damage from being abused by my dad, having 3 brain infections, and suffering a sever consussion in that car wreck.
I ahven't driven in 2 years, but I take the dial-a-Ride and I can go anywhere I want, when I want. I also jsut got a card for a discount on Dial-a-Ride for the diabled, so I only have to pay that fare, and not what the general public pays.
I have failed the follwing drugs: Tegretol XR, Tegretol, Chewable Tegretol, Carbamazapine, Carbatrol, Ativan, and Topamax.
I currently take the maximum amount of Neurontin--3600 mgs, and 1000 mgs of Depakote ER.
I have FIVE different seizure types. I have Absence, Myoclonic, Simple Partial, Complex Partial, and Secondarily Generalized Tonic-Clonic seizures.
The last 3 are the TLE. The other two are from who knows where. They are pretty sure that the Absence are left over from childhood, since it was never treated or diagnosed, because of my dad's controlling character, it is still with me.
The Myoclonics are jsut some stray seizrue type that jsut decided to join the party, I guess. They thought they were missing out on something.
The Neurontin is to control the partial seizures, which are stubborn. IT is a drug that has a narrow margin of treatment, meaning it only treats specific thing, not a whole bunch, and in this case it is used in ADULTS to treat hard-to-control partial seizures.
The Depakote is considered a braod spectrum AED and treats every single type there is practically, adn I take it to control the other two types.
Good luck.
Nancy
RE: RE: Feeling Helpless and Lost
Submitted by fishfry on Sun, 2004-09-19 - 13:03
Hi, I speak from an usual perspective: I. I have suffered from epilepsy for the last 25 or so years 2. For roughly 23 years I worked with mentally retarded clients, many who had seizures. Over that time I handled more seizures than I can count. While I no longer work-I am on disability-at that job now, it used to be hard to tell where the person ended and the professional began. I guess what bugs me most is while I know so much on the subject, my seizures remain intractable. Of course, I still can do almost anything.