Just officially diagnosed..lots of questions!

[Beanogirl]

My neurologist thought I was having simple partial seizures but I was just officially diagnosed last week after staying in the hospital for a few days for a video eeg. They said I am having focal seizures originating in the right temporal lobe (I think.....I'll have to check my paperwork). I'm 18 weeks pregnant so they want to wait to put me on meds until after the baby is born unless the seizures get worse. They said seizures can change during and after pregnancy b/c of the stress, lack of sleep and hormones. Can anyone give me their experience with this? I have 2 children already, 4 & 7 and babysit my 1 year old niece. I've thought about telling my sister I can't babysit anymore b/c I am so scared of having a seizure when she is here. I just feel bad doing that to her. She really can't afford daycare. I'm scared that my seizures will change and I will get hurt or my kids will be scared. I've always dealt with anxiety but lately it is horrible. I don't want to leave the house. I'm not allowed to drive now which is making it hard to get to all these doctor appointments. We have so many new medical bills lately I was thinking about trying to get disability for the added insurance. Not sure if I would qualify but if I can't drive and there is no public transportation where I live how do I get to work? I'm scared all the time. I told the kids we could go outside to play today but while I was making lunch I had an episode. Then the anixety kicked in. Now I don't want to take them outside and they are upset. Those of you with young children how do you do it? This is all new to me so I'm hoping once I get on meds this fear will go away. We have a brand new swimming pool but my neuro told me not to swim alone or alone with the kids. It's so hard for them to understand why mommy can't drive them anywhere or take them outside to swim. I guess I am just feeling sorry for myself. Thanks for letting me vent and any advice you can give would be appreciated!

 

[huskymom]

Welcome :hello:

I am so sorry that all of this is happening to you, and now especially when you are expecting again. It is going to be hard, but just try to stay calm. I know that you are scared and that is normal. Try to keep to your normal routine. Changes to that and being scared can cause more problems. Your kids are small, so they don't understand, but maybe you can find new ways to entertain them. Make puppets, pasta necklaces, just little things. Make a fort in the living room with all the cushions and sheets. You will soon find the best way for you to cope. Let us know how you are doing. Big hugs!!!

 

[Cint]

Hi Beanogirl,

Sorry to hear of your seizure(s) at a time when you're expecting. Hormonal changes can effect the seizures, so maybe the pregnancy has something to do with it.

I have two grown children and when I was pregnant with each of them, I was taking Dilantin. Both turned out fine..... both bright and successful.... my son is law student.
My seizures were/are SP, CP, and TC, so that is why I was on medication while pregnant and had already been in an accident due to my seizure. So you will need to weigh the risks.
You can check out more info on this website: http://www.epilepsy.com/INFO/WOMEN_PREGNANCY

And as far as taking care of your niece, if it does raise your stress level, then maybe you do need to tell your sister that right now you cannot handle taking care of her little girl. You have a lot going on in your life, too. Your health is just as important.

I hope you find some relief soon.

 

[Endless]

Hi, Beanogirl,

Welcome to the forum!

I'm so sorry you are going through this. Being pregnant is hard enough. This on top of it is incredibly difficult.

I can't drive, either. And I'm far too tired to walk the amount that's needed to take the public bus (it can equal 4 miles round trip). I hitch a ride with a neighbor when I can. I have two retired neighbors, both disabled but they can still drive. I try to trade chores for rides when I can. Carrying in and putting away their groceries is a big one. So is watering the flowers on their patio. In the mornings I can also hitch a ride with a neighbor who is on their way to work. Then there's the problem of getting home.... but I always seem to manage.

I can't swim either. But not with someone present, either. I can't swim, period. Kids are remarkably smart. I bet your 7-year-old would understand why you can't be alone with them when they swim if you explained it.

Hang in there. I'm hoping this will all go away after the birth of your baby.

 

[jenp]

Newly diagnosed

Hi Beanogirl,

I was diagnosed in 2004 with complex partial seizures. Mine originate in the temporal lobe too. Before being diagnosed I had a lot of short term memory problems that were concerning me. Once I was diagnosed I was relieved to find out the cause and that it would be treated, but I was tremendously depressed about having "a disorder".

All of the advice & empathy you're getting here is so great, something I didn't have back then. I'd also add that giving yourself some time to adjust to your diagnosis will really help. Reduce stress in every way you can, because stress and not getting enough sleep are two things that create problems with epilepsy. This is one time that giving yourself lots of love and extra care really pays off.

I felt a little powerless at first, because I wasn't able to drive for about three months. It is an adjustment, but trust me it gets better, and you soon get to feel like Wonder Woman again.

Good luck!

Jen

 

[Beanogirl]

Thank you everyone!

I've been experiencing my symptoms for over 4 years but didn't seek help until a few months ago. I thought it was anxiety related b/c some of the symptoms were similiar to my anxiety symptoms.

This isn't how I planned on my pregnancy going. Not that anyone ever plans to hear that they have epilepsy. I am very scared and feel alone. Since my seizures don't knock me out and you can't tell I am having one unless I say something, people don't understand why they scare me.

I'm hoping once the baby is born I can get on medication and go back to my normal life. Right now I feel so lost.

 

[Nakamova]

If people around don't understand why your seizures feel so scary, give them information to make it clear. Ask your doctor for a leaflet, or print out a list of symptoms from the internet. Most people are ignorant of partial seizures, and educating them can make a difference.

And you're not alone -- folks here at CWE understand and empathize with what you are going through. Check in here on a regular basis just to let us know how you are doing!