Introducing Myself

[dawn9100]

Hi Everyone!

I've been a member for a few years now, but this is actually my first post. I've learned a lot from you all over the years - THANK YOU!

I had my first seizure at around 19 years old, and up until I was about 36 I only had a seizure once every 2-3 years. It didn't impact my life very much.

But the last few years, I've started having more and more. Sometimes I'll have 2 in a day, 2 in a week, 1 a month, or maybe I'll go 90 days, and then get hit with one. They are very random, and we haven't been able to find much success with medication.

My periods always seem to be related in some way. Either during, right before, or right after. Currently I'm taking briviact, and depo provera (the birth control shot), and I have a VNS device, and it does seem like I'm having fewer seizures, but still too many that I could think about driving...

I got a divorce in January, so currently I'm living with my 22 year old son, he moved back home after my divorce, worried about me living alone.

Well, these days he and I are kind of starting to get on each others nerves... he wants to get out there on his own, because he doesn't like "my house rules". I don't blame him... he's at the age where kids want to get out there and learn about the world - it's what he's supposed to do.

But then there's me, sinking deeper into isolation and depression because I never get out of the house (I work from home also), I pretty much lost all my friends in the divorce, and I don't have a great method for getting out there to make some new ones.

Do any of you have any advice to share? Have any of you managed to be able to set up a comfortable life that doesn't involve driving? Anyone living alone, comfortably?

As a first step, I'm working on re-arranging my finances a little, to free up a little money so maybe I can utilize Uber and Lyft a little more often... the public transportation system here (in the Phoenix area) is really only acceptable for short trips. Anything more than 20-30 miles ends up adding way too much time to the commute. One thing I've considered is buying some type of electrically powered golf-cart that would allow me to drive on the sidewalks down to the grocery store, and be able to bring a few things back with me. Does anyone do anything similar?

I know I owe it to my son to try to get myself out of this funk, and stop "waiting" to get my drivers license back, but instead come up with a new plan, that doesn't involve driving. So I'd really appreciate any suggestions.

Thanks,
Dawn

 

[Nakamova]

Hey Dawn welcome (officially) to CWE!

My periods always seem to be related in some way. Either during, right before, or right after. Currently I'm taking briviact, and depo provera (the birth control shot), and I have a VNS device, and it does seem like I'm having fewer seizures, but still too many that I could think about driving...

Sounds like you and your neuro are taking all the right steps. Maybe you could try an anti-estrogenic diet to see if it helps mitigate any spikes that could be triggering your seizures? More info here: https://www.livestrong.com/article/234882-anti-estrogenic-diet/

I work at home and I live alone. I am currently able to drive (I know that makes a huge difference) but when I first developed epilepsy I deliberately moved to a walkable area with easy access to public transportation. I walk just about everywhere. I recommend that you look into neighborhood groups (volunteer, activity, cultural) that will connect you with others. Consider joining a listserve like this one: https://nextdoor.com/city/phoenix--az/ -- I've joined my local one and it's a terrific resource.

 

[dawn9100]

I have never even heard of an anti-estrogenic diet!!! Thank you so much!!! I have a feeling that is going to help with the gap... I'm still really hoping the Depo is going to help, but maybe that will help while I'm adjusting to Depo! Thanks so much!!!

 

[Porkette]

Hi Dawn,

Just like you I have never been able to drive and I also had seizure right before and after my period, this is happening because the estrogen level is increasing during this time and estrogen causes more excitement in the nervous system which can sometimes lead to seizures, while at the same time the progesterone level is decreasing and it's the progesterone that helps calm the nerves. As crazy as it sound I found eating nuts a few days before and after my period helped reduce the seizures because there's progesterone oil in nuts.

I've found that taking the bus is one way to get back and forth to work and into town and they also have a program called "gadabout" where people who have physical disabilities or elder people who can't drive anymore can call this group and they will come and get you and take you where you need to go and you have to pay them $2 or $3.00 for each way. It comes in very handy. You may want to check with your local bus company to see if they have a program like this in your area. I wish you and your son the best and May God Bless the Both of You!

Sue

 

[valeriedl]

I was diagnosed with epilepsy when I was 27, 14 years ago, and I had to move back home with my parents. There's no public transportation where they live, or where I live now which is next door, and if I were to call a cab it would cost a fortune! I've never gone even close enough seizure free to be able to drive.

Most of my friends lived 45 minutes away when I moved home plus they had family's and jobs so it was really hard to get together. If we did my mom would usually drive and come with me and it's really not too much fun having your mom hanging around when you're with your friends. I pretty much lost all of them, even the ones near by. I do still have one good friend who lives far away and she calls and tries her best to get together as often as she can. I'd love to try to make some new ones but it's just so hard. I hate it when I do get out and meet people and they'll say "Let's get together sometime, give me your phone number" but then I never hear from them! Talking with people on CWE has helped but I know it's not the same as being with an actual person.

When my husband and I started dating we got together a lot, he had a good job and we were able to do things. But he lost his job after we were married and works night shifts now and doesn't make nearly as much as he did before. So he's sleeping when I'm awake and I'm sleeping when he's awake plus we really don't have much money to do things. Our 'dates' are usually going to the grocery store or dr's offices!

I'm not sure what your 'house rules' are but as long as your son isn't coming home drunk or anything like that then you need to let him go out. If he's not going to be coming home for some reason just have him call or text and let you know so you don't worry.

I know it's quite a bit difference with me because I'm the one with epilepsy and he's not but my parents gave me things to do around the house. Cleaning, cooking and things like that. They told me that this was my 'rent' since I didn't have a job. They'd even give me money every week for doing things that way I had money when I did go out. As long as I did them they didn't have problems with me going out and doing things. I had to check in with them though every so often so they knew I was ok. I know they were scared to death when I started spending nights at my husband's house but they knew they had to let me do it because I was almost 30 not 13.

I don't know how much stress you have been going through lately but stress can be a huge seizure trigger for people, it is for me.

 

[Topcat]

Hi Dawn. I live in Phoenix so I know that if one doesn't have a car here it stinks.
The bus schedule has gotten worst. And it's bad to have to wait out in the heat.
I usually go up to use the main route north of me. People might think it's crazy because I go to a grocery store several miles from me when there is one just about a mile from me.
But this way I don't need to make a transfer.
I sure wouldn't get a cart to drive on the sidewalk. What would happen if you had a tonic clonic seizure while doing that? Sounds like you could drive right off into traffic.
I live alone about once a week my sister is nice enough to come over to give me a ride but other than that I'm on my own.