I hate these seizures

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I hate this so much i started having seizures 2 years ago and was diagnosed with juvenile myclonic epilepsy im now 28. Ive lost my job because of it having to take ill health redundancy. No meds have worked ive been diagnosed with clinical depression after attemting suicide because of this. I feel low and so lonely all the time i dont go out anymore i have no confidence and all my so called friends dissappeared when i took epilepsy so i have no friends. I have an amazing bf who has been there through it all no matter how hard its got. He got me a black lab who is 11 weeks old and licks my face until i come round but i hate this i hate these seizures i cant eat or sleep i just feel so alone. Before this i was healthy happy bubbly outgoing and independant but now i dont even leave house alone.

Comments

Welcome LauraWell I agree

Submitted by just_joe on Thu, 2017-03-23 - 12:57

Welcome LauraWell I agree with you. Having seizures is no fun. If you asked a person that has had heart attacks they don't like them either. I know. My partner has 6-7 stents and has had at least that many heart attacks. Does he worry about having another one?? Not really. Kind of like do I worry about having another seizure. NO I don't if I have one I have it. You were diagnosed 2 years ago. You lost a job. Have you looked for another job? If not why not? As for NO MEDICATIONS have worked in order to know if they worked time is a factor. It takes 4 weeks for the therapeutic levels to build in your body and during that time frame is when you might have a side effect. If the medication stopped some seizures but not all then it works and adjustments to the dosages can be made and you then have another time frame so the new therapeutic levels can build in your body. So you couldn't have tried many medications. There are about 60 different medications for seizure control. Seizure meds are not like aspirin where once taken it goes away after a few hours. They build and are there to keep break through seizures from happening if you take a dose late or even forget a dose. I have done both of those things. Do take your medications on time daily. If the RX says 2 times a day those times need to be 12 hours apart unless your neurologist states otherwise.Your BF was smart. Black Labs are great dogs and they can and will help you with your seizures. Mine I got when she was about the age of yours was. She grew up and helped me many times since she knew I was going to have a seizure before I had it. You see they have service dogs now and yes labs are some of the best. Back then I had a papper route Missy would try to move me away from the street and closer to grass in case I had a convulsive seizure. I had friends leave but many of them came back when I asked them WHY. If it was because I had seizures and epilepsy I asked them WHY. They only know about the seizures they see. Which means they do not know they could be having seizures themselves. Some seizures are seconds long. The ones I have today are just that. I still have a seizure every 8-14 days and my GP did not know I had one the last time I had a visit with him. He knew about the same seizures years ago that lasted 5-8 minutes and getting back to normal took another 15-45 minutes and at times hours. It took time and constantly asking my neurologists questions about medications and dosages and possible procedures in order to get the control I have today. You need to get out and do things rather then staying cooped up and thinking you might have a seizure. Believe me thinking about possibly having a seizure can cause them. Stress and worry are triggers. When I was your age We went out on the week ends. Dinner and a movie, Oh and back then we went to a drive end and took KFC or Long John Silver's fish and more for 4. We went to clubs and danced at the disco clubs. You see I have been living and dealing with epilepsy for 50+ years. Do research your epilepsy and types of seizures and medications. I did.. But I also kept that information separate and went about my life as it was. Does a person who has a hearing problem constantly worry about their hearing? Do people that have had heart attacks constantly worry if they will have another one? Or do they take their meds or replace their hearing aid as needed? You can do the same thing. If you have a seizure call your neurologist and ask questions about it. Adjustments can be mad in a phone call with a visit to follow in a few months. If you are out your BF knows you have epilepsy and what needs to be done so 911 doesn't need to be called. Been there done that. At work HR had to call and they checked me out and I signed the forms that I didn't need to go and knew what I needed to do.I hope this helps and you get better control of your seizures and get out with your BF Joe

Welcome LauraWell I agree with you. Having seizures is no fun. If you asked a person that has had heart attacks they don't like them either. I know. My partner has 6-7 stents and has had at least that many heart attacks. Does he worry about having another one?? Not really. Kind of like do I worry about having another seizure. NO I don't if I have one I have it. You were diagnosed 2 years ago. You lost a job. Have you looked for another job? If not why not? As for NO MEDICATIONS have worked in order to know if they worked time is a factor. It takes 4 weeks for the therapeutic levels to build in your body and during that time frame is when you might have a side effect.  If the medication stopped some seizures but not all then it works and adjustments to the dosages can be made and you then have another time frame so the new therapeutic levels can build in your body. So you couldn't have tried many medications. There are about 60 different medications for seizure control. Seizure meds are not like aspirin where once taken it goes away after a few hours. They build and are there to keep break through seizures from happening if you take a dose late or even forget a dose. I have done both of those things. Do take your medications on time daily. If the RX says 2 times a day those times need to be 12 hours apart unless your neurologist states otherwise.Your BF was smart. Black Labs are great dogs and they can and will help you with your seizures. Mine I got when she was about the age of yours was. She grew up and helped me many times since she knew I was going to have a seizure before I had it. You see they have service dogs now and yes labs are some of the best. Back then I had a papper route Missy would try to move me away from the street and closer to grass in case I had a convulsive seizure. I had friends leave but many of them came back when I asked them WHY. If it was because I had seizures and epilepsy I asked them WHY. They only know about the seizures they see. Which means they do not know they could be having seizures themselves. Some seizures are seconds long. The ones I have today are just that. I still have a seizure every 8-14 days and my GP did not know I had one the last time I had a visit with him. He knew about the same seizures years ago that lasted 5-8 minutes and getting back to normal took another 15-45 minutes and at times hours. It took time and constantly asking my neurologists questions about medications and dosages and possible procedures in order to get the control I have today. You need to get out and do things rather then staying cooped up and thinking you might have a seizure. Believe me thinking about possibly having a seizure can cause them. Stress and worry are triggers. When I was your age We went out on the week ends. Dinner and a movie, Oh and back then we went to a drive end and took KFC or Long John Silver's fish and more for 4. We went to clubs and danced at the disco clubs. You see I have been living and dealing with epilepsy for 50+ years. Do research your epilepsy and types of seizures and medications. I did.. But I also kept that information separate and went about my life as it was. Does a person who has a hearing problem constantly worry about their hearing? Do people that have had heart attacks constantly worry if they will have another one? Or do they take their meds or replace their hearing aid as needed? You can do the same thing. If you have a  seizure call your neurologist and ask questions about it. Adjustments can be mad in a phone call with a visit to follow in a few months. If you are out your BF knows you have epilepsy and what needs to be done so 911 doesn't need to be called. Been there done that. At work HR had to call and they checked me out and I signed the forms that I didn't need to go and knew what I needed to do.I hope this helps and you get better control of your seizures and get out with your BF Joe

Welcome LauraWell I agree with you. Having seizures is no fun. If you asked a person that has had heart attacks they don't like them either. I know. My partner has 6-7 stents and has had at least that many heart attacks. Does he worry about having another one?? Not really. Kind of like do I worry about having another seizure. NO I don't if I have one I have it. You were diagnosed 2 years ago. You lost a job. Have you looked for another job? If not why not? As for NO MEDICATIONS have worked in order to know if they worked time is a factor. It takes 4 weeks for the therapeutic levels to build in your body and during that time frame is when you might have a side effect. If the medication stopped some seizures but not all then it works and adjustments to the dosages can be made and you then have another time frame so the new therapeutic levels can build in your body. So you couldn't have tried many medications. There are about 60 different medications for seizure control. Seizure meds are not like aspirin where once taken it goes away after a few hours. They build and are there to keep break through seizures from happening if you take a dose late or even forget a dose. I have done both of those things. Do take your medications on time daily. If the RX says 2 times a day those times need to be 12 hours apart unless your neurologist states otherwise.Your BF was smart. Black Labs are great dogs and they can and will help you with your seizures. Mine I got when she was about the age of yours was. She grew up and helped me many times since she knew I was going to have a seizure before I had it. You see they have service dogs now and yes labs are some of the best. Back then I had a papper route Missy would try to move me away from the street and closer to grass in case I had a convulsive seizure. I had friends leave but many of them came back when I asked them WHY. If it was because I had seizures and epilepsy I asked them WHY. They only know about the seizures they see. Which means they do not know they could be having seizures themselves. Some seizures are seconds long. The ones I have today are just that. I still have a seizure every 8-14 days and my GP did not know I had one the last time I had a visit with him. He knew about the same seizures years ago that lasted 5-8 minutes and getting back to normal took another 15-45 minutes and at times hours. It took time and constantly asking my neurologists questions about medications and dosages and possible procedures in order to get the control I have today. You need to get out and do things rather then staying cooped up and thinking you might have a seizure. Believe me thinking about possibly having a seizure can cause them. Stress and worry are triggers. When I was your age We went out on the week ends. Dinner and a movie, Oh and back then we went to a drive end and took KFC or Long John Silver's fish and more for 4. We went to clubs and danced at the disco clubs. You see I have been living and dealing with epilepsy for 50+ years. Do research your epilepsy and types of seizures and medications. I did.. But I also kept that information separate and went about my life as it was. Does a person who has a hearing problem constantly worry about their hearing? Do people that have had heart attacks constantly worry if they will have another one? Or do they take their meds or replace their hearing aid as needed? You can do the same thing. If you have a seizure call your neurologist and ask questions about it. Adjustments can be mad in a phone call with a visit to follow in a few months. If you are out your BF knows you have epilepsy and what needs to be done so 911 doesn't need to be called. Been there done that. At work HR had to call and they checked me out and I signed the forms that I didn't need to go and knew what I needed to do.I hope this helps and you get better control of your seizures and get out with your BF Joe

Thank You....I HATE seizures

Submitted by DOVE on Sat, 2017-04-01 - 21:37

Thank You....I HATE seizures too. Tears.. I try my best not to say the "H" word....but it so applies! Hate hate hate 'em. And, feel so alone here, like people just do not get it. Thanks for Sharing your feelings.