Hi everyone!

[aprilg]

I am excited to find this site!

I am 32 and have had seizures for 12 years because of a head concussion during a ski accident. I have had less than a dozen grand mals, but have constant partials and auras with a lot of disorientation. My auras seemed to have gotten better the past year. I don't get disoriented very much or have that terrible fear. I just get the chills and know that I am having an aura, then it goes away. My partials tend to happen during my menstrual cycle.

I have three kids and was taking Dilantin with two of them and Lamictal and Dilantin with my last. I learned that my fluctuations in hormones during the last two weeks of pregnancy seemed to dilute my blood of my meds. I had several grand mals one after the other with my first resulting in an emergency c-section. My other babies were planned c-sections two weeks early. All girls are healthy and great. The meds during pregnancy and nursing never affected them. :woot:

I have an amazing husband who is so sweet and supportive. Honestly, I think he takes my seizures harder than I do, especially the grand mals. Maybe because I am unconscious and don't have to see myself shaking uncontrollably. I just wake up with a headache and am really tired for a day or two. I have never had any problems with the seizures and my kids. My oldest knows several numbers to call if I have a grand mal. She knows how to help me when I get disoriented. In fact, she so sweetly shows me where the bathroom is and she giggles when I walk into the wall looking for it.

Life is good. The seizures are a bummer, but life is good. I am just grateful that my condition is so mild. I am looking forward to meeting all of you.

 

[nightfighter]

Welcome to the forum,

Lots of great people and information.

 

[Zoofemme]

Hi Aprilg and welcome to the site THis is a great place that Bernard has provided for us to hang out on, provide each other support, rant, vent, rave, ask questions and pretty much anythig else you can think of regarding E. You will find folks here with various forms of E, folks without E who are a support for a family member, spouse or partnerr, and a few folks who may not have E but are just part of the support network here I hope you enjoy your stay!

 

[epileric]

Welcome April. I've also got partial seizures but have also had less than a dozen grand mal (Tonic/Clonic) seizures.

I used to be on dilantin- remember to brush your teeth & watch for gum swelling.

Meanwhile check out the site, the people are great & very supportive but I also think it's really well set up with rooms for reference (the library), discussing things (the kitchen) or even venting (padded room).

 

[Jan4you]

Hello and hugs to you April ~! You sound soo sweet and so does your family.
You and your hubby have done a great job raising your children.. how old are they?

I was just diagnosed in Feb 2010 with simple and complex partials. Seems I was compensating for them a long time..so was not sure. I am still not sure what is a SP for me...but realize that CP have cost me my job now.

Hang with us.. great support and responses more than any other site for sure~!

Warmly, Jan

 

[aprilg]

Thanks everyone. My husband actually found the site yesterday after I had my first grand mal in 6 1/2 years. We're pretty bummed about it because the partials had recently become very mild and then just auras. I hate to go to the doc and tell her I had a breakthrough. I'd really just rather check my levels and adjust accordingly. I know I am not supposed to be driving, but there is no way I can't drive having three girls. I limit my driving as much as possible and I usually stop driving for a week after I've had a partial just to be on the safe side. I usually have them around my menstrual cycle and they are sporadic for a few days. Do you guys still have a driver's license and drive around? Just curious if I am being wreckless.

Janet, I'm so sorry you had to lose your job because of the complex partials. However, I'm glad to hear you are only having partials instead of a lot of tonic/clonics. The difference between my simple and complex partials is the amount of disorientation. When I have a simple partial I don't really get too disoriented and am completely coherent and they are more than a thought than a space out. Were you able to get a new job? My girls are 6 1/2, 4 and 1 1/2 and I am 32.

 

[epileric]

In Canada I have to go 6 months to a year without a seizure depending what province I'm in. I tend to have partial seizures every few days so I've never been allowed a license.

I do think it is dangerous to be driving 3 girls around even if all you're getting is auras. All of your senses, including time & distance can be distorted during an aura. Aren't you scared of putting the girls lives in danger? Also being on Dilantin can slow your reflexes so watch out for that too.

 

[Jan4you]

Hi again April...

Just being diagnosed I was told not to drive. So with my job as a hospice social worker we work from out cars and travel to our patients. THAT is why I can no longer drive. I found out too that if you have seizures and have an accident its considered a CRIMINAL offense.

So I gave my keys to my sister and canceled my car insurance so I won't be tempted to drive. I did have a partial while driving.. got lost (Jamais vu) and then another time on the freeway I thought the cars were all merging into my lane and freaked out.

Its the hardest being home and stranded. But I have not felt well enough since my hospitalization a few weeks ago (for MS) to walk anywhere. My legs tire out.. and my muscles deflate due to my kidney disease.

They bring up a good point.. are you still driving? Especially with your children?

Jan

 

[aprilg]

I am not on Dilantin anymore, just Lamictal. Because my partials are all during my menstrual cycle I just don't drive at that time or for a week after I've had a partial. And I don't drive very often. Now that I've had a tonic clonic I don't know. I definitely don't want to put my girls in danger, they mean everything to me. It just seems hard to give it up forever.

edit: my husband just reminded me that I am on Dilantin. "You know you have epilepsy when..."

 

[RobinN]

Hi April - Welcome to CWE
Sorry to hear about your recent set back. I hope it will be the last.
Sure glad you found us though. It is great support.

 

[Nakamova]

Hi april --

I drive now (I have seizure control on my meds), but I have driven after a tonic-clonic, I know it's not an easy decision to make. Since your t-c came out of nowhere it seems like it might be best to err on the side of caution. Get your med levels checked and see if they need adjusting.

Since some of your seizures are catamenial, you might want to look into progesterone related treatments for that kind of epilepsy. If your hormones are fluctuating, that could also be making the doses of Lamictal and Dilantin less consistent as well.