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[Anne B.]

Hello All,
I just found your support group and am in great need of being able to connect online with others like me suffering from epilepsy.

I'm 43 and have had a very hard time not feeling isolated in this. At first my husband left me, my kids were impatient with the memory loss, my in laws hate me for ruining their sons life with my disease and I had to quit work, ministry I had built since 2012 helping abused women and I've been through losing the license to getting it back but not feeling safe or up to going out by myself anymore. I also have migraines, an autoimmune disease and e.p.i. I went from being a 150 pound runner to a 210 bald (from helmet glue test they do) and i feel alone. Would anyone consider sharing their story with me and being a friend in this?

 

[Heavy Kevy]

Hi Anne B.
I grew up with and, I’m still friends with another Anne. Who has a last name begins with B. We call her “Anne B”
Anyway. This chat forum has been very helpful for me. Unfortunately it has not been very active recently.
You have been through a lot. Shame on the people that have abandoned you.
When I first started posting here I was amazed at the number of seizures and other things they were coping with. The thought of having multiple seizures a day, week. Eventually having over 100 was incomprehensible.
It’s been 17 years since my first seizure started, and 60 is only a couple years away.
I had another surgery just over a year ago. They removed another part of my brain.
My seizures have been greatly reduced in frequency and intensity.
Best of luck to you!

The only way to have a friend is to be one.
~ Ralph Waldo Emerson

 

[Anne B.]

Thank you so much. I can't imagine the surgery you been through and how you've survived this disease for these years. I've only had it 5 years and feel hopeless and like I can't leave my house and all kinds of stuff. My last seizure was 2 summers ago they tell me, I dont remember it and since then my memory is very bad. They almost wanted to check me for dementia at age 43! I finally said I wasn't up for yet another appointment. I will do the test if it gets worse. I hope you are healing OK from everything and that God blesses you too.

 

[Sabbo]

Hello Anne, & welcome to CWE! This is a GREAT place to find information, and even just vent when nobody around you understands. I've had epilepsy since I was a kid, but it wasn't diagnosed until I was in my freshman year of high school, after I had a few grand mal seizures (none since). I recall that I'd sometimes complain of "weird feelings" in my head since I was 5, but nobody could understand what they were until I had one during an EEG after those grand mals. That is when they realized those "feelings" were simple partial seizures! Approximately 25 years ago, I began to have complex partial seizures, too. These seizures have been very troublesome for me as I have NO aura before they occur. Thanks to that, I have injured myself many times, including SEVERE burns (2nd & 3rd degree) at least 7 times. I had made the choice NOT to drive while in high school, when I only had simple partial seizures because I had one right before class the day of my final behind the wheel practice. When the complex partials began, I was GLAD about the choice I made, DESPITE it leaving me fully dependent on others.

I have a BS in Economics & Information Systems, & an Associates in accounting, but thanks to the complex partial seizures, wasn't able to work. When I tried to after completing my degree, very dangerous things happened twice, so my family said don't do it. Once, I nearly fell onto the train tracks at our commuter station--thankfully, someone caught me. Another time, I had just exited my office in downtown Chicago, & collapsed onto the sidewalk. I "came to" at the hospital.
I have tried EVERY AED out there. I'm currently taking 500mg Zonisamide and 300mg Xcopri/day. I have noticed that every time I started a new AED, if I'm not allergic to it, my seizures lessen for a short time, but soon I begin having breakthroughs.

 

[Anne B.]

Thank you for welcoming me and for sharing. I can't believe all you've been through, it's hard stuff and support is becoming a big key for me.

 

[Bernard]

Hi Anne, welcome to the forum.

Everyone's journey with epilepsy is different, but most everyone here has had to deal with difficult times. We can empathize with your situation.

 

[salcyxn]

Hello All,
I just found your support group and am in great need of being able to connect online with others like me suffering from epilepsy.

I'm 43 and have had a very hard time not feeling isolated in this. At first my husband left me, my kids were impatient with the memory loss, my in laws hate me for ruining their sons life with my disease and I had to quit work, ministry I had built since 2012 helping abused women and I've been through losing the license to getting it back but not feeling safe or up to going out by myself anymore. I also have migraines, an autoimmune disease and e.p.i. I went from being a 150 pound runner to a 210 bald (from helmet glue test they do) and i feel alone. Would anyone consider sharing their story with me and being a friend in this?

Hi Anne!
Admittedly I just logged in today after 3 whole years of epilepsy… I’m 19 years old and I’ve been dealing with seizures since I was 16. So, I haven’t had the chance to go through a lot of the struggles you have yet. I get the isolation though. That’s one good thing in all of this crazy- the fact that despite our different lives I can say that I’m here and I can relate to your experience. Epilepsy turned my life upside down the same way it’s turned yours. It’s awful that the people who should have been there for you in your darkest moment left when it got too rough. Without other people I’m not sure how I would have coped. I recall that the day after my first seizure I had a breakdown, but my friend was there to comfort me. I hope you are able to find someone, somewhere, who is able to bring you even a small bit of comfort. It’s hard to say when it gets better. I know I’ve started to do better, but things aren’t always so linear. I think finding ways to cope makes the unknowing easier. As I said earlier, I’ve not logged on in quite a while, but in the short time I spent on here I found comfort in the stories of others. I hope that you too can find comfort in the stories of strangers. Different lives, ages, medications, etc, but all with this shared feeling of loneliness. It’s nice to know that despite everything, there are people out there. Whether they’re beside you holding you while you cry or on a different continent telling you simply that they understand- loneliness is the biggest thing we have to overcome. I know I have, and I have faith that you can too.

 

[suebear]

Hello All,
I just found your support group and am in great need of being able to connect online with others like me suffering from epilepsy.

I'm 43 and have had a very hard time not feeling isolated in this. At first my husband left me, my kids were impatient with the memory loss, my in laws hate me for ruining their sons life with my disease and I had to quit work, ministry I had built since 2012 helping abused women and I've been through losing the license to getting it back but not feeling safe or up to going out by myself anymore. I also have migraines, an autoimmune disease and e.p.i. I went from being a 150 pound runner to a 210 bald (from helmet glue test they do) and i feel alone. Would anyone consider sharing their story with me and being a friend in this?

Good morning Anne,

Welcome to the group, you're in a great place as we all go through different issues with epilepsy and can share many steps on how we have found the best way to care for it with our little things. I have been dealing with epilepsy since a child, and it's been a rollercoaster to say the least. went through three surgeries to bring me to where I am today. I'm thankful to get to the point where I am with the many trials and errors for medication, as I think we might have found something that's started working after the recent increase.

What I can say after years of dealing with many seizure issues I decided to be particular with those I speak to and trust. There are those I will let into my life and those I will not. You are in the right area as many members can give you great information. Welcome again to the group!

 

[Sabbo]

Epilepsy DOES turn a person's life upside down. Constantly changing doses or trying new meds to lessen the number &/or severity of the seizures. It makes it feel worse when family members start to treat you like you're unable to do things when the only issue is that you may have limitations on how you do some things. I used to LOVE cooking, but since the complex partial seizures began, I don't open the stove if alone in the house. Thankfully, my husband helps by cooking a lot, too. Now that both our sons are gone, whenever we cook, we freeze at least half of it so we're not eating the SAME thing for more than 2 days.

The inability to work outside of the house is definitely what I dislike the most about having epilepsy. I'm sure that if I had continued to only have simple partial seizures, I probably would have been able to work. I used to live on campus while completing my BS & took the commuter train home weekly.

I recall looking forward to driving in high school, but as I said before, chose NOT to drive because of the simple partial seizure right before class. At the time, I didn't even know an epileptic could have an IL license if seizure-free for 6 months. I found out about that later. The issue, though, is who would inform the DMV of a person's epilepsy if that person wasn't truthful about how often/severe their seizures are?

 

[Bernard]

... The issue, though, is who would inform the DMV of a person's epilepsy if that person wasn't truthful about how often/severe their seizures are?

The risk isn't the DMV, it's your insurance denying all claims if you have an accident and someone gets hurt.

 

[Plasticmask]

Hello All,
I just found your support group and am in great need of being able to connect online with others like me suffering from epilepsy.

I'm 43 and have had a very hard time not feeling isolated in this. At first my husband left me, my kids were impatient with the memory loss, my in laws hate me for ruining their sons life with my disease and I had to quit work, ministry I had built since 2012 helping abused women and I've been through losing the license to getting it back but not feeling safe or up to going out by myself anymore. I also have migraines, an autoimmune disease and e.p.i. I went from being a 150 pound runner to a 210 bald (from helmet glue test they do) and i feel alone. Would anyone consider sharing their story with me and being a friend in this?

Welcome to the group!
I don't recall how long it's been since I found/joined this group. I'm VERY glad that it exists though.
I'm confident that you'll find whatever you're looking for, here. The people here are SUPER.

 

[Sabbo]

I also do not recall when I joined this group. I recall being on another group/forum AGES ago. I had even printed out many of the discussions I was involved in when that group was closing down for some reason. I was VERY happy to find CWE since this is my main outlet, as far as connecting with others. Most of the friends I have work, so they're very busy, & calling them wouldn't be possible. Going ANYWHERE is dependent on when someone can take me, and often for how long.