I need a seizure buddy

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Ok, so I titled this silly I know...saying I need a seizure buddy, but I didn't know what else to say because thats kinda what I need. Here is my story in a big nut shell. I am a 59 year old woman and had a ruptured brain anerusym in Sept. 2004 that was a miracle I survived, then another anerusym was found and I had surgery for, three months later. Brushing death so close, I thought I recovered very well. I had killer headaches that didn't go away but who wouldn't after two brain surgeries and I had and still have, what I called 'funny feelings', at random times. I went back to work part time at 3 months after surgery and on to full time. My work environment before I had my annie was very demanding due to short staff but I had done very well performance wise and had earned rewards, etc. Long story short. My 'funny feelings' I was having turned out to be simple partial seizures and I was continuing having mirgraines. My job went south big time and I was pretty much forced to retire. That was a big blow to me. I felt like saying the word seizure was the worst thing I couldv'e done. That seemed to be the catalyst to why my job went away.

Fast forward 11 years to now. I am still having migraines and the simple partial seizures. Summer of 2013 I was driving home from my son's who lives in another state. I was on the freeway when I felt one coming on, the next thing I new I was on the other side of the freeway in the field. I had passed out, driven across head on in the other side of the freeway and went thru the wire fence into a hay field. Wrecked my vehicle. This was the first and only time I had a seizure where I passed out. The paramedics came but didn't see anything wrong with me. The police didn't either and I didn't tell them. I have such a phobia about telling people about my seizures now after losing my job. It has taken me a couple of years to get to grips with that. I am now finally more open with my seizures. Well sort of.....this is the reason for my coming to you today. From my accident on the freeway I was pretty shook up about the fact I could have hurt someone else so I did not drive for a year. I have not had another 'big' seizure since.

ok now to the present. Since 2004 my life has changed. Yes I am very blesssed that I survived, I have no outward signs of ever having had an anureysm or having seizures. I look healthy. But on the inside I get depressed because I still have the migraines and I still have the small seizures. I see a great nurologist whom has hounded me to get onto this site for some time. LOL and I am on several meds for migraines and seizures. I have been very good at keeping track of my seizures and have been good at telling my husband when I am having one. But a few weeks ago I mentioned I wanted to start driving to see my parents more often, by myself. They live 125 miles from our home. My husband didn't think that was a good plan at all, thinks I shouldn't drive the freeway. I feel so defeated. Like I am losing everything. I am driving now, within the city. No, I don't want to do anything to ever hurt another driver/car. My husband is mad at me because he knows I am not telling him when I'm not feeling well now, when I have migraines or having feelings. He is right I'm not. Having the anureysm in 2004 still defines my life, by still having migraines and seizures from it. I am so tried of living this way.

Any wise advise from you would help. I know you guys have and are going thru the same crap. And I know I am just being a big cry baby today. sorry. See I just need a seizure buddy today.

Thanks. Barb

Comments

Welcome to the club BarbFunny

Submitted by just_joe on Fri, 2015-03-06 - 17:54

Welcome to the club BarbFunny feelings and migraines are types of seizures. Been there done that. I had been written up for day dreaming in class for well over a year before I had a grand mal seizure. After the diagnosis those day dreams were basically absence or simple partial seizures even focal seizures. I learned to live with epilepsy and how to control my epilepsy and it all started with accepting the fact that I have epilepsy and will have seizures. I treat those seizures as blips in time which they are. Those blips in my life are a minimal ammount of time in the things I have done. If my life were an hour those blips would all add up to about a second or maybe 2. Do I drive? NO Have I ever driven? NO I do know how to drive and would in case of an emergency. I control my epilepsy . I don't let epilepsy control me. It hasn't been easy but I have been doing it for 50+ years. It all startes with accepting your epilepsy. By doin some of the things you say you have started doing you are starting in the right diresction. Please do yourself a favor and tell your husband when you have had a seizure. It can help if he knows about the seizures you have along with the times you take your meds and the dosages you take just in case you are in an accident. Yup he can inform the doctors at the hospital. he can give them your doctors name and the medications. If they don't know and you end up in one they may not know you have epilepsy or the doctor you have and without your medications you could start having them while in there. You are still doing something that can hamper you controlling your epilepsy. You are letting epilepsy control what you say or do and what you think you can do or can't do. I see people post they are losing their independence because they can't drive or do some other thing. By saying that they let epilepsy control them. I can't drive because I have epilepsy. Or I can't drink because I have epilepsy. I can't go ut and have fun with my friends because they go to bars or clubs. I still don't drive. I drink a glass of wine now and then or a beer. I went everywhere my friends did. If I went to the clubs the bartenders knew I could only have 1 drink with alcohol. So all the others even if a friend bought it was like theirs only without alcohol. You might know them as Shirley Temples. Oh and I also drank near beer. It look just like beer but no alcohol. It wasn't tht tasty but I was out to have fun and I did. You stated you need a seizure buddy...... And you only say seizure..... Does your neurologist treat you for epilepsy or seizure??? There are many seizures and several things can cause them. So what causes your seizures is it a beng thingy or a reaction to a medication you have to take that one side effect is a possiability of causing seizures? Or is it Epilepsy? To get further down th path in the right direction start using epilepsy. If people hear that they might ask what type of seizures do you have. When they ask by all means answer. they can help more if they know. You might have a firend come up and ask you what medication you are on because they have a friend that has a son or daughter that was diagnosed. It helps you and may help others. Oh and by using the word it can cause you to get away from the stigma associated with epilepsy. Also to help you do some research. start that with using your search engin "famous people that had epilepsy" You like your neurologist which I think is good. I have been with the same group of neurologists since 1970. My first neurologist in the group retired. The second one moved over into a speciality Alzh. So I got the next. In that long period of time I hae had about 10 different neurologists. Most of them ha answered calls I had made wanting information. Yup Doc was answering questions I had back in the late 1980's. SO ask questions yo uwant answers to when you see your Doc, answer his questions adn plese don't hold back any seizures. If you ar estill having seizures then ask him if your medication dosage need to be increased or decreased, (too much medications is just as bad as too little) IS there another medication that will work better then this one? Is there a medication that we could couple with this one that might reduce the number of seizures I am having? I hope this helps and you get answers and assistance you need and get seizure free Joe

Welcome to the club BarbFunny feelings and migraines are types of seizures. Been there done that. I had been written up for day dreaming in class for well over a year before I had a grand mal seizure. After the diagnosis those day dreams were basically absence or simple partial seizures even focal seizures. I learned to live with epilepsy and how to control my epilepsy and it all started with accepting the fact that I have epilepsy and will have seizures. I treat those seizures as blips in time which they are.  Those blips in my life are a minimal ammount of time in the things I have done. If my life were an hour those blips would all add up to about a second or maybe 2. Do I drive? NO Have I ever driven? NO I do know how to drive and would in case of an emergency.  I control my epilepsy . I don't let epilepsy control me. It hasn't been easy but I have been doing it for 50+ years. It all startes with accepting your epilepsy. By doin some of the things you say you have started doing you are starting in the right diresction. Please do yourself a favor and tell your husband when you have had a seizure. It can help if he knows about the seizures you have along with the times you take your meds and the dosages you take just in case you are in an accident. Yup he can inform the doctors at the hospital. he can give them your doctors name and the medications. If they don't know and you end up in one they may not know you have epilepsy or the doctor you have and without your medications you could start having them while in there.  You are still doing something that can hamper you controlling your epilepsy. You are letting epilepsy control what you say or do and what you think you can do or can't do. I see people post they are losing their independence because they can't drive or do some other thing. By saying that they let epilepsy control them. I can't drive because I have epilepsy. Or I can't drink because I have epilepsy. I can't go ut and have fun with my friends because they go to bars or clubs. I still don't drive. I drink a glass of wine now and then or a beer. I went everywhere my friends did. If I went to the clubs the bartenders knew I could only have 1 drink with alcohol. So all the others even if a friend bought it was like theirs only without alcohol. You might know them as Shirley Temples. Oh and I also drank near beer. It look just like beer but no alcohol. It wasn't tht tasty but I was out to have fun and I did. You stated you need a seizure buddy...... And you only say seizure..... Does your neurologist treat you for epilepsy or seizure??? There are many seizures and several things can cause them. So what causes your seizures is it a beng thingy or a reaction to a medication you have to take that one side effect is a possiability of causing seizures? Or is it Epilepsy?  To get further down th path in the right direction start using epilepsy. If people hear that they might ask what type of seizures do you have. When they ask by all means answer. they can help more if they know. You might have a firend come up and ask you what medication you are on because they have a friend that has a son or daughter that was diagnosed. It helps you and may help others. Oh and by using the word it can cause you to get away from the stigma associated with epilepsy. Also to help you do some research. start that with using your search engin "famous people that had epilepsy"    You like your neurologist which I think is good. I have been with the same group of neurologists since 1970. My first neurologist in the group retired. The second one moved over into a speciality Alzh. So I got the next. In that long period of time I hae had about 10 different neurologists. Most of them ha answered calls I had made wanting information. Yup Doc was answering questions I had back in the late 1980's. SO ask questions yo uwant answers to when you see your Doc, answer his questions adn plese don't hold back any seizures. If you ar estill having seizures then ask him if your medication dosage need to be increased or decreased, (too much medications is just as bad as too little) IS there another medication that will work better then this one? Is there a medication that we could couple with this one that might reduce the number of seizures I am having?   I hope this helps and you get answers and assistance you need and get seizure free Joe    

Welcome to the club BarbFunny feelings and migraines are types of seizures. Been there done that. I had been written up for day dreaming in class for well over a year before I had a grand mal seizure. After the diagnosis those day dreams were basically absence or simple partial seizures even focal seizures. I learned to live with epilepsy and how to control my epilepsy and it all started with accepting the fact that I have epilepsy and will have seizures. I treat those seizures as blips in time which they are. Those blips in my life are a minimal ammount of time in the things I have done. If my life were an hour those blips would all add up to about a second or maybe 2. Do I drive? NO Have I ever driven? NO I do know how to drive and would in case of an emergency. I control my epilepsy . I don't let epilepsy control me. It hasn't been easy but I have been doing it for 50+ years. It all startes with accepting your epilepsy. By doin some of the things you say you have started doing you are starting in the right diresction. Please do yourself a favor and tell your husband when you have had a seizure. It can help if he knows about the seizures you have along with the times you take your meds and the dosages you take just in case you are in an accident. Yup he can inform the doctors at the hospital. he can give them your doctors name and the medications. If they don't know and you end up in one they may not know you have epilepsy or the doctor you have and without your medications you could start having them while in there. You are still doing something that can hamper you controlling your epilepsy. You are letting epilepsy control what you say or do and what you think you can do or can't do. I see people post they are losing their independence because they can't drive or do some other thing. By saying that they let epilepsy control them. I can't drive because I have epilepsy. Or I can't drink because I have epilepsy. I can't go ut and have fun with my friends because they go to bars or clubs. I still don't drive. I drink a glass of wine now and then or a beer. I went everywhere my friends did. If I went to the clubs the bartenders knew I could only have 1 drink with alcohol. So all the others even if a friend bought it was like theirs only without alcohol. You might know them as Shirley Temples. Oh and I also drank near beer. It look just like beer but no alcohol. It wasn't tht tasty but I was out to have fun and I did. You stated you need a seizure buddy...... And you only say seizure..... Does your neurologist treat you for epilepsy or seizure??? There are many seizures and several things can cause them. So what causes your seizures is it a beng thingy or a reaction to a medication you have to take that one side effect is a possiability of causing seizures? Or is it Epilepsy? To get further down th path in the right direction start using epilepsy. If people hear that they might ask what type of seizures do you have. When they ask by all means answer. they can help more if they know. You might have a firend come up and ask you what medication you are on because they have a friend that has a son or daughter that was diagnosed. It helps you and may help others. Oh and by using the word it can cause you to get away from the stigma associated with epilepsy. Also to help you do some research. start that with using your search engin "famous people that had epilepsy" You like your neurologist which I think is good. I have been with the same group of neurologists since 1970. My first neurologist in the group retired. The second one moved over into a speciality Alzh. So I got the next. In that long period of time I hae had about 10 different neurologists. Most of them ha answered calls I had made wanting information. Yup Doc was answering questions I had back in the late 1980's. SO ask questions yo uwant answers to when you see your Doc, answer his questions adn plese don't hold back any seizures. If you ar estill having seizures then ask him if your medication dosage need to be increased or decreased, (too much medications is just as bad as too little) IS there another medication that will work better then this one? Is there a medication that we could couple with this one that might reduce the number of seizures I am having? I hope this helps and you get answers and assistance you need and get seizure free Joe

Here is another buddy. I

Submitted by Anonymous on Sat, 2015-03-07 - 13:42

Here is another buddy. I sure know what you are talking about. I was going into surgery for my seizures and they found a brain aneurysm on the other side. I had to have emergency brain surgery so that it would not erupt (thank you Lord) but i sure wasn't expecting it. Migraines were unbelievable for me years ago. I was placed on topamax but now i am on a form of it but a different kind (extended-release) called trokendi xr. What you wrote sound so much like me it was unreal. I went back to work after the brain surgeries but once the gran-mals continued i was also kicked out the door quickly. I had to give up the driving back then because of both the gran mals and complex partials. They came on out of nowhere somtimes and other times gave me a de-vujis. It broke my spirit for years to give up driving, not working BUT it will come back. Talk to your doctor about the following meds vimpat and aptiom. I truly thank God for these because i have not had one seizure in 8 months and i am finally driving again after 15 years. Your seizure buddy got it back. It can happen. grace and peace.

I was on Keppra ans Doc

Submitted by just_joe on Sat, 2015-03-07 - 15:46

I was on Keppra ans Doc coupled it with Vimpat... We both know that I may never be compleytely seizure free. But he knoows I want to try to get there. All of the seizures I have now are seconds in length. Most of that is due to the Keppra. The Vimpat has helped recuce the number of seizures to 1 every 8-14 days and at times longger Hey a few secomds now and then is a blip on time expecially when those seizures used to be 5 minutes long and the focus time was an additional 15-45 minutes/