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Old 06-20-2014, 06:51 PM
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No seizures or meds for 15 years then bang :-(


Hi Everyone,

I was born with fluid on the brain in 1986 and this caused me to have my first seizure the day after I was born! I had regular nocturnal gran mal seizures throughout my childhood and was medicated until I took myself off them at around age 15, around 2 years after my last seizure!

I remained seizure free until Wednesday just past when whilst at home with my 3 year old and 4 month old had my first ever daytime seizure! My 4 month old was luckily fine in her jumparoo whilst my 3 year old sat crying by my side! I'm absolutely devastated and have never had to deal with daytime seizures and I'm now scared to be on my own with my girls.

My doctor has advised it may be due to my antidepressants seroxat although also advised not to just stop taking them but I can't bare to take another one for fear of having another seizure! I'm awaiting an appointment with the neurologist but in the meantime I'm just a paranoid mess! I feel sick all the time like I'm just waiting for it to happen again!

Thanks for taking the time to read this

Stacey xx
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Old 06-20-2014, 08:46 PM
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Hello,
StaceyJane seizures can stop and restart at anytime in a person's life.
Your life is not over just because your seizures started back.
There are people who have seizures all the time and live a fullfilled life.I've had seizures for 50 years and I refuse to sit back and wait for my next seizure.
You may not have another seizure you'll have to wait and see.

I go out in the world live my life and if I have a seizure so be it.
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Old 06-21-2014, 12:06 PM
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Wow pretty harsh website! I didn't say my life was over because I'd had a seizure! Think I'll find another site for info and support
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Old 06-21-2014, 12:11 PM
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Hi StaceyJane,

I'm very sorry to hear you seizures returned now as an adult, especially while you're raising your own children now. My seizures started when I was 23 years old, just out of college and just married. We had two children and they have witnessed many seizures over the years, and yes, it can be very scary for the whole family, but educate them about seizures and re-assure them that mommy will be okay. Until you see your dr., have your mother or some family member be with you during the day to ease the paranoid feelings.

Hang in there.
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Old 06-21-2014, 05:13 PM
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Hi Cint,

Thanks for your reply! I'm just looking for some advice really! Does one seizure justify going back on meds??? The chances of another one happening....Other peoples experiences of taking anti depressants whilst not being on meds??? I do really worry about my children as my husband is out working all day and I'm at home with the darlings! I have briefed my 3 year old on what to do if it happens again!

I'd also like to hear if anyone else's has completely changed when returning after years! I went from being a nocturnal epileptic to having a daytime seizure the other day! I also seem to have started jerking quite badly whilst sitting trying to relax!

I completely understand that there are people with a lot worse cases of epilepsy than me Belinda! All my female cousins on my dad's side have epilepsy and one of Them is quite mentally challenged due to the damage done! This doesn't change the fact that I am completely freaked out by the fact that I had a seizure in Wednesday for the first time in 15 years in front of my unprepared 3 year old!

Thanks again for everyone's time
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Old 06-21-2014, 07:14 PM
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The return of seizures could be due to taking the antidepressant, but it is difficult to say at this point. They will do more blood work and another EEg, I presume. Have you had any menstrual problems or low blood sugar, as these could also cause seizures for some women?
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Old 06-21-2014, 09:56 PM
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Hi StaceyJane,

Welcome to CWE.
I'm sorry to see that your seizures returned after 15 years & the fact they were in front of your child must've been scarey.

I have a similar story, I had my 1st seizure at 9 months old, I took tonic clonics on a regular basis (often a few times a day) until I was about 3 years old. I was taken of medications when I was 7.
I went through the rest of child hood & all my teens seizure free but after being 21 years seizure free my seizures returned in 2002 when I was 24.
When my seizures returned I started to take mainly simple/complex partials & only had a couple of tonic clonics.

My neurologist tried me on a combo of anti epilepsy medications, but we still had trouble controlling the partial seizures. In 2009 my neurologist suggested I think about brain surgery so I was referred to a epiologist who I saw in 2010. That same year I had pre surgery testing & I had surgery on my left temporal lobe in March 2011.

At the moment my seizures are under control & I just have the odd funny feeling but I can cope with that as they don't affect my life & are nothing compared to my seizures pre surgery.

I hope you can get some answers.
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Old 06-22-2014, 02:15 PM
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Hi CQ,

I went to my GP a few months ago to say that I thought I was having little panic attacks! I would get this overwhelming feeling of fear come over me! A funny taste in my mouth, a feeling that I was in a dream sort of! I'm now thinking I may have been having simple/partial seizures!

I'm so glad that you now have your seizures under control (long May it continue)! I'm desperately hoping that it was a one off due to the seroxat I was taking! I have become extremely aware of my body jerking/twitching regularly! But I don't want to become a paranoid mess over it all! I'm looking forward to seeing the neurologist to get some advice with moving forward fit free!
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Old 06-22-2014, 04:24 PM
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Originally Posted by StaceyJane View Post:
I would get this overwhelming feeling of fear come over me! A funny taste in my mouth, a feeling that I was in a dream sort of! I'm now thinking I may have been having simple/partial seizures!
When my seizures returned I would get an aura which was always the same thing, I had like a dream that would pop in my head, I felt like I needed to go to the toilet & my head sometimes felt a bit strange. The dream I had was always the same type of dream but I only ever remembered what it was when I actually had the aura or simple partial.

Although my seizures are well under control at the moment , I do get the odd funny feeling. I will either get a funny feeling in my head or a feeling somethings not right then I will hear a strange noise. They probably only last a couple of minutes but the noise always feels like it lasts longer then it does.
I am not to concerned about these funny feelings as they don't affect my life & my specialists at the epilepsy clinic are monitoring them.

Hope things get better & the seizure was a one off.
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Last edited by CQ:); 06-22-2014 at 04:27 PM.
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Old 06-27-2014, 07:09 PM
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Dear Stacy
My wife seized from about 12 to 14. Had no seizures after age 14. I met her when she was 16. (She took her meds once in while). When 24 nursing our third child I witnessed her first seizure after 10 yrs.

For better or worse in sickness and in Health we have had 8 healthy morally sound brave and generous children. Today our 16 yr old baby finished his homeschooling year capping off my wife's 24th yr of homeschooling.

When the seizures started we started working on figuring it out. Often we limited meds to the least likely to give both defects and we prayed
a lot.

We also got frustrated and quit working together, quit good doctors, and at time withdrew from family and each other

Now on vimpat and zonigran and battling high acid from mix of Keto diet and zonigran . She has partial complex and I have never been happy with the approach the medical field by law and necessity seems to work.

It is scary but we are trying a new approach together. Never give up trying to figure it all out.

Personally, when I was on antidepressants it was too hard on my wife for me to be ill. Counseling with someone I trusted and with a different frame of mind I was able do well without the meds. Up and down some but able to keep the family together and often to excell

Advice: stay open minded, listen a lot, keep journal , stick together. An experience note: children that experience required usefulness can be outstanding in what most would consider devastating circumstances

Relax

What is most pressing for you now?





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