Getting worse

Melissa - posted on 12/09/2008 ( 4 moms have responded )

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I also have epilepsy but was not diagnosed until after my pregnancy at 17 (my 1st seizure was at 15). I now have a healthy 10 yr old son. He suffered 1 seizure at 7 from a high temperature. I dont drive as I'm too afraid. I have grand mal (tonic clonic seizures) myoclonic and extreme photosensitivity. The epilepsy gets worse as I get older. The photosensitivity only developed a couple of years ago. Im wondering if theres any1 else out there whos epilepsy is changing or increasing as time goes on?

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Lady Heather - posted on 07/30/2010

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Yup, mine have changed from myoclonic to these weird partial ones that just make me see funny and feel gross and dizzy. I'm super photosensitive. Even patterns and stuff can cause seizures. But I rarely have the big twitches like I used to. I don't know. In a weird way I kind of preferred them to this feeling like my brain is going to tear itself apart.

I wouldn't say mine is increasing though. Just different.

Sherilyn - posted on 03/24/2009

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Hi Melissa, I Am 25 and have had Epilepsy all my life and now where it has been changing alot esspesally over the last year. I don't know if it is due to the pregnacy or if I am out growing my seizures. I have not had a Grand mal seizure for over 8 months now. and I keep getting these Staring spells and not remembering them. But I hope it makes you feel better knowing that you are not the only parent with seizures that are changing and is scared all the time. Right now I am so happy I can't wait for the baby to come but at the same time I am so scared because of my health, I don't think I could have this child unless I had my fiancee with me.
But at this time in our lives Mid-20 anything can happen it all depends how we take care of ourselves.

hope this helps!!

Sharon - posted on 03/20/2009

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Hey Melissa just thought Id share a little of my story with you and maybe you will be able to identify parts of it, but hopefully it will give you hope too.



I had my first seizure (grand mal) at 21 and was diagnosed with Epilepsy straight away. It took about 6 months for seizures to be controlled and I sailed along for a couple years with only occassional myoclonic jerks. Unfortunately when I went on the Pill my epilepsy spiralled out of control and I was back at square 1 except the original meds weren't working anymore even when off the Pill.  So after a lot experimenting and juggling doses my Dr's came up with a combination that got my seizures controlled. During all this though I also learnt a lot about what triggered seizures for me too; hot/cold temp change in the shower early in the morning, late nights (blah blah), light streaming in through verticle blinds, and of all things...lavender!   



Then I got pregnant... twice! I have a 2 year old and a 1 year old... yes that was a surprise!  I remained pretty healthy for both except the last couple of months of pregs and the "break" in between.  I had about 12 grand mal seizures over that period which was quite frightening but the more seizures I had, the more I was being blessed with an awareness that they were coming on.  This meant when I was 8 months pregnant with my little girl I managed to put the Chef's knife I was using, safely on the bench and call out to my husband just before I fell.



I haven't had a seizure for just over 12 months and I am no expert, but it can be a bit of a rollercoaster with this condition.  Anyway Melissa what I really wanted to say was I don't believe you have to 'sentence' yourself to thinking that things will only get worse.

Michelle - posted on 01/09/2009

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I am 33 and I have to say YES mine have changed, BUT For the better....... when I was born I had seizures. and Have suffered soo many, I also have Grand MAL. My poor parents have been through soo much with me and my seizure... BUT I have been so undercontrol for over 12 years. YES 12 years. I do get this small type of seizure when I am sick, or stessed, or tired. They are very very diffrent from any I have ever had... I feel almost like I am out of my body, and watching and hearing what is going on, everthing is at a diffrent sound, its really weird and freks me out when it happens My husband and I have 3 children together and are presently trying to have another. Preg. has never affected my seizures, so I have to say I have gotton better I take 100mg of Dilantian 4 times a day on really bad days sick or somthing I have to take it 5 times

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