has any one been diagnosed with epilepsy later in life??

Kylie - posted on 06/07/2011 ( 15 moms have responded )

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hi im 33 and was diagnosed as epilipic 3 years ago while pregnant with my third child- im finding all this extemely difficult. i have my licence back- thank goodness, my husband is back at work and i find myself worried that i may have a seizure at home with our daughter. i have had tonic clonic, complex partial and absence seizures- but for the most part having a tonic clonic seizure scaresx me the most as my daughter is only 3. just want to know how others have coped

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Stephanie - posted on 05/18/2013

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Yes, I was diagnosed at 23, when I started having grand mal seizures. My neurologist feels that I always had it, but it took time for the first one to break through. All I know, is the past 6 years have been a battle to stay seizure free, my longest being a 3 year period from 2008 to 2011. I typically go about 6 months between seizures, except during this last pregnancy when they were fairly frequent.

Both boys were infants when they were around me when I had one. My son, now that he is older, has thankfully not witnessed one.

We just take one day at a time. They are so infrequent (but not under control), that we don't let them consume our day to day lives except I can't give the boys baths alone. I actually wrote a blog post on it:
Being a Mommy With a Seizure Disorder.

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Kylie - posted on 06/07/2013

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congratulations on your pregnancy rachel- and on your 9 months seizure free, i am still unstable but my children are so wonderful especially my eldest who is 11. i was at a party when i had a bad seizure and she gathered all 15 children up and took them outside so the adults could deal with me. my youngest is now 5 and still gets scared when she sees me seizing. i have found that the side effects of the new meds are worse then the seizures so a change of medication is needed again. the older the kids get, you think that things will get better and easier and in some respects they do but others they dont. my eldest starts high school next year and as i still wont have my licence back she will have to catch a train and bus there by her self this scares me!!! having a baby with uncontrolled epilepsy was the hardest part of my life . not being able to look after my baby alone, always having my husband looking over my shoulder - especially as he use to go away from sunday to friday for work- all the things that i took for granted were taken away but we got through it. we are still dealing with it. some people take their meds and that seems to control it- but me unfortunately am still unstable. best wishes with your baby and licence. hopefully you can control yours just remember you can always chat to me even though i cant help out i can listen and share my experience with you . :)

Rachel - posted on 06/06/2013

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I'm turning 30 this month and was diagnosed with epilepsy 5 years ago. Just a few months ago they diagnosed me with Juvenile Onset Myoclonic Epilepsy. It's funny because obviously 25 is no longer juvenile, but hey..I still fit into the diagnoses. Anyways..thankfully we have been able to control the seizures which seem to be caused by stress, sleep deprivation, not taking meds and alcohol. I'm now 5wks pregnant and VERY nervous about it all. Tomorrow I'm actually going to the DMV to attempt to get my license back for the first time in over 2 years! It's been 9 months since my last seizure. I always got paranoid when the 6 month time frame rolled around so this time I waited 3 months.

Lindsey Brian - posted on 10/17/2012

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I'm 31 and I was told you youngest son has absences sezuiers after reading and finding things out about this condition I relized that for years I'd say from the time I was 10 years old I spaced out lots and I'd have people snaping there fingers in my face to tell me to come back from lala land. Even now I still finding my self spacing out but I know whats going on around me I just can't pull my self out of it I don't know if it's day dreaming or somethin differnt but I'm not sure how ti ask my dotor about this does anyone have any ideas and does anyone feel the same way when they are having an sezuire??

Kylie - posted on 05/30/2012

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i was the same when i found out- i didnt want to believe it, i had a new born so sleep wasnt really an option for me lol. im glad you have found a wonderful partner have fun on your island sounds wonderful. take care of you and your little one

Colleen - posted on 05/24/2012

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It's been almost a week since my last seizure, and I'm putting all my faith into the Lord, that He will help me through this. The altitude where we live in South Africa is high, and I've heard on many occasions that this is not good for epileptics, so next week my husband and I will be parking off on an island for 4 weeks. I can't wait :)

The tumor has not returned, however, the surgeon had to leave a portion of my brain behind when he operated. If he had removed it, it would have affected my memory. Apparently there's still a bit of tumor behind - lovely! But apparently it's not that that's causing the seizures, it's the gap in my brain from where the tumor was taken out. It might sound like I'm now worse for wear after the op, but I do remember the petit mal seizures where really playing havoc with my work, it even caused me to have an accident on the highway.

When I look back, there are things that I would have done differently. I was staying on campus at the university I was studying at and when I discovered I had epilepsy, I wanted to deny it. I did everything wrong, I had freedom and I did not want this to control me. So I went to night clubs, I drank, I smoked occasionally, used caffeine and had too much sugar. I took me years to accept that I had epilepsy and I had to respect my body. It also drew me closer to the Lord. I dumped a guy that I dated for 8 years - bad influence on my life and about a year later met a man who was meant for me. Thinking back, I now wished I grew up quicker. I just thank and praise the Lord that He has always been there for me, even when I was at my worst, He still loved me and never gave up on me.

My baby's doing fine, she's quite active and I'm praying for her everyday. :)

Kylie - posted on 05/23/2012

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oh colleen i understand the stress and worry you are going through i had my first seizure while i was 4 months pregnant with my 3rd daughter, all thought we didnt realise what was happening until i was 33 weeks. the stress of it all on you is hard enough but when your pregnant as well its a nightmare. the meds are hard - ive been on the same ones (just uping the dose) for 4 years now and they still arent under control, i have lost my licence again :( which is hard with 3 kids with all the activities they do and my husband doesnt drive) , has the tumour returned? i have heard of this happening- not that you could do anything right now as you are pregnant. i had a mri just after my baby was born and they found nothing - they cant find a cause for mine. im back to the neuro this week for meds to be changed so hopefully i get some relief. i wish you all the luck hunni, keep us posted on how you and your baby are doing :)

Kylie - posted on 05/23/2012

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oh colleen i understand the stress and worry you are going through i had my first seizure while i was 4 months pregnant with my 3rd daughter, all thought we didnt realise what was happening until i was 33 weeks. the stress of it all on you is hard enough but when your pregnant as well its a nightmare. the meds are hard - ive been on the same ones (just uping the dose) for 4 years now and they still arent under control, i have lost my licence again :( which is hard with 3 kids with all the activities they do and my husband doesnt drive) , has the tumour returned? i have heard of this happening- not that you could do anything right now as you are pregnant. i had a mri just after my baby was born and they found nothing - they cant find a cause for mine. im back to the neuro this week for meds to be changed so hopefully i get some relief. i wish you all the luck hunni, keep us posted on how you and your baby are doing :)

Colleen - posted on 05/21/2012

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I discovered I had epilepsy when I turned 19. I'm now 32 and pregnant with my first child.

I have tried almost everything to control it. At first I was having petit mal seizures, which increased frequently. The doctors discovered a non-malignant tumour that was causing them. I had this removed. A year later I was in a stressful job and had my first grand mal seizure. Since then I've had about 3 a year. Last year October, I had the VNS implanted. It has not helped yet, however, I heard that it can take a year or more before your body accepts it.

I fell pregnant in January and am now 4.5 months pregnant. Since I've fallen pregnant I've had 5 grand mal seizures. I'm really worried for my baby and I wish these operations I've had and medications I'm taking will start working.

Dawn - posted on 04/21/2012

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I'm glad I found your stories. Being a mom with epilepsy has been difficult, but I have so far been very blessed to not have any problems with my seizures as a mom. I have a blog on which I address my epilepsy and its challenges, as well as raising my twin boys. Here are all my posts about epilepsy: http://dawnwhispersandshouts.blogspot.co... What we did for emergencies (my sons are almost 3) is a phone mounted on the wall with photos on speed dial buttons. One time I had a seizure at home alone with them but at that time we didn't have the phone in place. Everything turned out fine, but it forced us to address it more thoroughly. They make practice phone calls occasionally and they know first to always call Daddy. I hope my blog can be helpful to someone!

Helen - posted on 02/07/2012

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thanks so much for sharing your stories. I was feeling down

because I had a seizure and wake up to my daughter cry and saying that she was sorry. I felt so bad, like I was an unfit mother. Now knowing that I'm not alone make me feel so much better.

Kylie - posted on 08/26/2011

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thank you very much, its reasuring to kow that im not the only one- im only just starting to talk about it now, up until recently, only close family knew i even had epilepsy. i have started to tell a few people- at first it was only because i am scared that i will have a seizure and they wont know what is going on! I was in denial. i really thought that it would go away my neuro said that it was possible and i just wanted it to. i have now accepted the fact that i may have it for the rest of my life. i have had some set backs lately with seizures returning quite frequent. hopefully we have them under control again.

Janae - posted on 08/22/2011

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I started having seizures 2 years ago at 26 years old, and doctors have not found any particular cause. Just a few months after the seizures began, I found out I was pregnant. I was terrified for the baby's safety, but to my surprise I did not have any seizures through the entire pregnancy! My son is now 9 months old, and I have been able to exclusively breastfeed him even while on medication. What a blessing to be seizure-free for so long!

However, 2 months ago my seizures returned. It was SO scary! I was up in the middle of the night nursing my son (he was 7 months old at the time), and all of a sudden I got that weird feeling and I just knew that a seizure was coming. When I woke up, I was on the floor, but I had managed to get my son safely in his crib before blacking out. It was terrifying! What if I hadn't been able to get him back into his crib? I could've dropped him or fallen on him or who knows what!!! I felt like I was a danger to my own child!

My neurologist increased my meds, and for a while it seemed to be working. But last week I had another seizure. Again, I was home alone with my son (now 9 months old) when it happened. We were playing on the living room floor when I felt the seizure coming, so I was able to move away from him before blacking out. When I awoke, he was still playing with his toys on the floor, blissfully unaware that Mommy had just had a seizure.

Our home is pretty well baby-proofed, but it terrifies me to think that something could happen to him while I'm blacked out on the floor. Being a stay-at-home mom means I'm alone with him a lot, and it is scary. But all I can do is be prepared and be as safe as possible. I never give him a bath without my husband there, and I don't drive anywhere of course. At least I get a few seconds of warning time before I black out.

Epilepsy definitely adds a unique layer of difficulty to motherhood! But I know there are lots of moms out there who deal with it, and I just wanted to share my own struggles with someone who understands!

Melanie - posted on 07/29/2011

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I was diagnosed at 18. (now 26) I was pregnant with my 1st at te time. I found i get warnings like a burning smell / feeling in my nose. I makesure im sitting on the floor and that my children r safe, just by a quick glance. Not everyone gets a long enough warning i knw. My epilepsy has got loads better im not on meds any more ( 2yrs) and im fit free for 5yrs. Since then ive had 2 moe kids and nothing.

Julia - posted on 06/09/2011

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I am 27 was diagnosed with seizures when I was 22, which my dr told me is considered later than most. I have only had them in my sleep (luckily) so I try not to sleep during the day. Mine have been controlled with medication for several years. I have a 14 month old and so I do get nervous about having a seizure at home without anyone there with me. Thank goodness my doctor keeps a close eye on me and is very responsive to any concerns I have with having seizures.
My husband calls me a couple times a day (not just to check up on me but to talk). When my daughter gets old enough I will show her how to use the phone to call Daddy, Grandma (who lives near by), and or 911 if she sees something going wrong with Mommy. But for now, people just call me every once in a while.

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