Feeling a bit downhearted...

CDC funded page

Not a CDC funded Page

As a young girl I would get petite mal seizures almost daily. This went un-diagnosed for years, as my parents just thought I was a daydreamer! My seizures eventually progressed into what was then called grand mal seizures, and I had my first one after a night of sleep deprivation at age 14. I was not tested for epilepsy at that time, it was not until I had yet another grand mal seizure at school a few months later that I was sent for testing and then diagnosed with epilepsy. I took medication for years and then as I reached my early 20's, stopped taking it as I was TERRIBLE at taking it, I would forget to take it more often then not and figured it was not good to be taking it like that, in addition I had seen a neurologist and he had advised that he was going to take me off the medication next visit as it was not good to stay on the drug I was on for a prolonged period.

I went almost 20 years without having any type of seizure and then a couple of months ago I had 3 grand mal seizures in one day, one I had just before getting into the tub (scary!!), fortunately I passed out on the floor instead, when I awoke I stumbled to my bed to lye down, where I had yet another, my husband heard/found me. My husband had never witnessed me have one before, and called 9-11, when it stopped I don't remember anything except waking up completely confused and my husband told me not to get up, I had a seizure and the ambulance was on it's way, my mom was standing at the foot of my bed as well....to wake up and not know where you are, what happened, and to have two paramedics all of a sudden sitting at your bedside asking what happened what you remembered, is not a nice thing to experience. They took me to the hospital where I had yet another seizure, they gave me a CT scan, the results came back fine, and they started me to on medication again. I went from being completely fine to having to cope with a number of life changes again! I had to take a week off from work because I had bit my tongue so bad, it was swollen and bruised. When I returned to work I discovered I was having trouble reading/writing...it has gotten better but it's been so overwhelming. I have been having side effects from the new medication (shaky, dizzy, and severe restless legs), and although I have been fine (no seizures), I fear that the new medication is not working and I could have a seizure again at any given moment. I am embarrassed and feel as though my husband sees me differently now as he has never seen that happen to me before. I have had my drivers license taken away so any bit of independence I had has been taken from me. I think daily of what could have happened and it makes me sick, what if I had of gotten into that tub, what if I had of been driving and took someones' life? In addition to everything I have developed aspiration pneumonia due to inhaling something while I was having one of the seizures, and have been experiencing complications due to that over the past month and a bit. I try to remain positive but it's hard, I know others have it alot worse, and maybe I am just having a pity party for myself right now. I have a very supportive family which helps, but I am still so saddened that they have started again, it's not easy. Guess I am just in need of support from others who are afflicted with the same medical condition. Anyways, thanks for listening.

Comments

So sorry to hear about your

Submitted by Tcultrera@shaw.ca on Mon, 2014-07-07 - 17:47

So sorry to hear about your reoccurrence of seizures. I am 36 and recently diagnosed with temporal lobe (partial) seizures. I know how you feel about the independence being taken away and my husband has treated me with kid gloves since my last seizure. It's just so hard to feel normal. Just letting you know you are not alone and someone else feels your pain. Good luck with everything. I hope it gets better.

Epilepsy is not an easy thing

Submitted by Anonymous on Mon, 2014-07-07 - 21:36

Epilepsy is not an easy thing to live with. I also have had it since childhood. Being adopted at the age of 2, it was not disclosed. My parents said the same thing about daydreaming. I still have seizures and am about to turn 50. I have gran mal seizures and have taken meds over the years, sometimes the way i was supposed to and other times when i thought i should, and also stopped them because they were not giving me the results I wanted. I also lost my license due to them and felt dependent on people for rides, thought i was inconveniencing people and felt bad for myself. Went to a neurological specialist about 20 years ago, and had surgery, He told me he was going to remove the part of the brain that he knew the seizures originated from. He removed my short term memory, After being discharged from that hospital and going home and being told everything went well, i got an abscess on the inside of the cranium and it burst over the brain. To make a long story short one surgery turned into four. I went on disability for a while, that was a nightmare in itself..I still take meds, and still have seizures, not everyday but enough to where it's annoying when they do happen. A supportive family is so important, my kids always stood by my side,and told on me when I wasn't telling the doctors the truth. Good luck to you and keep your chin up. Take care

My parents and teachers

Submitted by just_joe on Tue, 2014-07-08 - 12:35

My parents and teachers thought I was day dreaming when in reality those day dreams were absence seizures (petite mal). So I do know what yo uwere going thru. It wasn't easy since teachers were writting me up and I had strict parents soooooooooo I got in trouble when they got the notice. I was one of the best students in class and my scores on tests were among the top 5 in class. Yeh I was day dreaming..LOL I can also say I have been blessed since I have not had a convulsive seizure since 1970. I als o know when I am in a seizure and know which seizure I am in which is more then many people know. I understand your feeling I too have had them. It isn't easy to deal with and I do know that others want to treat you gingerly. "Lets not do this or that because it might cause something to happen. Been there done that, However I was in school and I told the teachers and coaches I wanted to be treated like everyone else. I told them that I may have a seizure now and then but that doesn't mean I need special care. I looked at things differently since seizures to me were just blips in time. I wanted to live my life. A seizure is seconds or minutes in a day. Hey my life has been long so those blips are nothing in the life time I have lived. i do has family and friends around me and at times they can tell when I am in a seizure since most of mine are partial seizures. The newer medications also cut the time in the seizures and time to focus (get back to normal) down. What most people do not think about is all the other kinds of seizuresAs for pitty parties we all have them. What would my life have been if I didn't have epilepsy? Oh and there are many more questions we all have asked from time to time. I fear that the new medication is not working and I could have a seizure again at any given moment. hile I never went the length of time you did without a seizure I did go 3+ years and was studing for my drivers license which I never took the test for because I had a seizure. So I have never driven except in an emercency, It hasn't been easy and I do know what it is like having to deal and live with epilepsy. You didn't mention the name of the medication or the dosages you are on. When you started taking it also could give some of us information as to whether your shaky, dizzy and restless legs could be side effects. The side effects generally go away after 2-3 weeks on the new medication. Your neurologist generally sets up an appointment in 1-3 months to find out what you are experiancing. At that time he will generally raise or lower the dosage, It does take time to get the dosages set but the medication can and should lower the number of seizures you are having. Also understand that medications set at 2 times a day those times should be 12 hours apart and the reason is because medications lose their strength as time goes by and dosages get weaker. If taken at 7 am and 10 pm the hours between 7 & 10 pm the dosage is weak and you could have breakthru seizures because the level is low. I would suggest you get the my epilepsy diary and use it. They have a video that tells you how to use it and what it can do to help your neurologist get you seizure free. Oh and I use the note pad to write down what happened in the seizure. I also knot anything that might have triggered the seizure. If your husband sees something that happened in your seizure it would also be a place for him to note anything different. You give your neurologist permission to use it and he can get into it and view the grasphs and with that information and what you answer to his questions he can come up with different procedures, medications and dosages. I hope this helps and your seizures get undercontrol or you stop having them completelyJoe

My parents and teachers thought I was day dreaming when in reality those day dreams were absence seizures (petite mal). So I do know what yo uwere going thru. It wasn't easy since teachers were writting me up and I had strict parents soooooooooo I got in trouble when they got the notice. I was one of the best students in class and my scores on tests were among the top 5 in class. Yeh I was day dreaming..LOL  I can also say I have been blessed since I have not had a convulsive seizure since 1970. I als o know when I am in a seizure and know which seizure I am in which is more then many people know. I understand your feeling I too have had them. It isn't easy to deal with and I do know that others want to treat you gingerly. "Lets not do this or that because it might cause something to happen. Been there done that, However I was in school and I told the teachers and coaches I wanted to be treated like everyone else. I told them that I may have a seizure now and then but that doesn't mean I need special care. I looked at things differently since seizures to me were just blips in time. I wanted to live my life. A seizure is seconds or minutes in a day. Hey my life has been long so those blips are nothing in the life time I have lived. i do has family and friends  around me and at times they can tell when I am in a seizure since most of mine are partial seizures. The newer medications also cut the time in the seizures and time to focus (get back to normal) down. What most people do not think about is all the other kinds of seizuresAs for pitty parties we all have them. What would my life have been if I didn't have epilepsy? Oh and there are many more questions we all have asked from time to time. I fear that the new medication is not working and I could have a seizure again at any given moment. hile I never went the length of time you did without a seizure I did go 3+ years and was studing for my drivers license which I never took the test for because I had a seizure. So I have never driven except in an emercency, It hasn't been easy and I do know what it is like having to deal and live with epilepsy. You didn't mention the name of the medication or the dosages you are on. When you started taking it also could give some of us information as to whether your shaky, dizzy and restless legs could be side effects. The side effects generally go away after 2-3 weeks on the new medication. Your neurologist generally sets up an appointment in 1-3 months to find out what you are experiancing. At that time he will generally raise or lower the dosage, It does take time to get the dosages set but the medication can and should lower the number of seizures you are having. Also understand that medications set at 2 times a day those times should be 12 hours apart and the reason is because medications lose their strength as time goes by and dosages get weaker. If taken at 7 am and 10 pm the hours between 7 & 10 pm the dosage is weak and you could have breakthru seizures because the level is low. I would suggest you get the my epilepsy diary and use it. They have a video that tells you how to use it and what it can do to help your neurologist get you seizure free. Oh and I use the note pad to write down what happened in the seizure. I also knot anything that might have triggered the seizure. If your husband sees something that happened in your seizure it would also be a place for him to note anything different. You give your neurologist permission to use it and he can get into it and view the grasphs and with that information and what you answer to his questions he can come up with different procedures, medications and dosages. I hope this helps and your seizures get undercontrol or you stop having them completelyJoe

My parents and teachers thought I was day dreaming when in reality those day dreams were absence seizures (petite mal). So I do know what yo uwere going thru. It wasn't easy since teachers were writting me up and I had strict parents soooooooooo I got in trouble when they got the notice. I was one of the best students in class and my scores on tests were among the top 5 in class. Yeh I was day dreaming..LOL I can also say I have been blessed since I have not had a convulsive seizure since 1970. I als o know when I am in a seizure and know which seizure I am in which is more then many people know. I understand your feeling I too have had them. It isn't easy to deal with and I do know that others want to treat you gingerly. "Lets not do this or that because it might cause something to happen. Been there done that, However I was in school and I told the teachers and coaches I wanted to be treated like everyone else. I told them that I may have a seizure now and then but that doesn't mean I need special care. I looked at things differently since seizures to me were just blips in time. I wanted to live my life. A seizure is seconds or minutes in a day. Hey my life has been long so those blips are nothing in the life time I have lived. i do has family and friends around me and at times they can tell when I am in a seizure since most of mine are partial seizures. The newer medications also cut the time in the seizures and time to focus (get back to normal) down. What most people do not think about is all the other kinds of seizuresAs for pitty parties we all have them. What would my life have been if I didn't have epilepsy? Oh and there are many more questions we all have asked from time to time. I fear that the new medication is not working and I could have a seizure again at any given moment. hile I never went the length of time you did without a seizure I did go 3+ years and was studing for my drivers license which I never took the test for because I had a seizure. So I have never driven except in an emercency, It hasn't been easy and I do know what it is like having to deal and live with epilepsy. You didn't mention the name of the medication or the dosages you are on. When you started taking it also could give some of us information as to whether your shaky, dizzy and restless legs could be side effects. The side effects generally go away after 2-3 weeks on the new medication. Your neurologist generally sets up an appointment in 1-3 months to find out what you are experiancing. At that time he will generally raise or lower the dosage, It does take time to get the dosages set but the medication can and should lower the number of seizures you are having. Also understand that medications set at 2 times a day those times should be 12 hours apart and the reason is because medications lose their strength as time goes by and dosages get weaker. If taken at 7 am and 10 pm the hours between 7 & 10 pm the dosage is weak and you could have breakthru seizures because the level is low. I would suggest you get the my epilepsy diary and use it. They have a video that tells you how to use it and what it can do to help your neurologist get you seizure free. Oh and I use the note pad to write down what happened in the seizure. I also knot anything that might have triggered the seizure. If your husband sees something that happened in your seizure it would also be a place for him to note anything different. You give your neurologist permission to use it and he can get into it and view the grasphs and with that information and what you answer to his questions he can come up with different procedures, medications and dosages. I hope this helps and your seizures get undercontrol or you stop having them completelyJoe