Newbie - 1st Seizure in 25 Years

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I am in my early 30's and just had my first seizure in 25 years. When I entered elementary school way back in the late 80's it was noticed immediately by my teacher that I was experiencing something odd. Long story short, I had a habit of banging the back of my head against any nearby surface and this was diagnosed as petit mal seizures. By age 7 I was doing regular EEG's and by age nine I was told I no longer had epilepsy because I had "grown out of it."

Life went on, high school involved no lack of controlled substance abuse and college involved working 30-40 hour weeks while acing 18-22 credits a semester. I worked hard, I played hard and I never once suspected epilepsy might come back.

While in college, my older sister passed having a grand mal seizure. She developed her symptoms later than I and had fairly regular seizures from age 15 on. Before she turned 30 we lost her.

So, Wednesday morning I had a seizure while sleeping in bed with my husband. I was awoken by EMT's (he called 911) and confused as heck. Went to the hospital, anticlimactic. Now I have an appointment with a neurologist Monday morning. I have no idea what to expect. Kinda freaking out and thought I'd learn what I can.
 

Porkette

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Hi crunchywheat,

Welcome to CWE! I'm sorry to hear that your seizures started up again. Hopefully it won't happen again.
I've had absence (petit mal) and complex partial seizures for 45 yrs. and one thing I learned is sometimes when a woman starts to go through Pre menopause it can change the seizures, especially if it's temporal lobe seizures. My seizures started to increase when I went through my change but then I started the cbd oil medical marijuana and that stopped a good amount of the seizures. I also started to have seizures in my sleep and my Epileptologist did a sleep study on me along with a e.e.g and e.k.g. and she found I was have 1-2 seizures in my sleep day after day and I didn't even realize it.
Cut yourself back on the carbs and starch foods and you may want to start eating nuts of any kind because they have progesterone oil in them and that helps calm the nerves. I know it sounds crazy but it has worked great for me. I wish you the best of luck and May God Bless You and Your Family!

Sue
 
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Hi Sue,

Thank you for the words of wisdom and support! Blessings to you and yours as well sister :).
 

Nakamova

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Hey cw, welcome to CWE!

Unfortunately epilepsy can manifest in weird and unpredictable ways (as you are well aware). For some people it can go into remission and reappear much later. Sometimes changes in metabolism or hormones can play a role (for instance, pregnancy can sometimes bring on seizures). Though often there's no explicit or obvious cause, you might find it helpful to make some detailed notes about how you've been feeling over the last few months/weeks/days. Anything from fatigue to dietary/metabolic factors to hormones to environmental stressors can potentially push someone over the "seizure threshold", especially if that threshold is lower to begin with. I hope your new seizure is a one-off due to some isolated short-term factor.

The neuro will probably schedule an EEG and an MRI. Since you have both an individual and a family history of seizures, it's likely that they will suggest a period of medication especially if the EEG results are positive. Definitely ask a lot of questions tomorrow -- it can help to write them down first, and have someone with you to write down the answers as well. Don't leave the appointment until you feel comfortable with the info the neuro provides.

And definitely feel free to check back in here -- CWE members have a lot of collective experience and anecdotal wisdom to share, and are a great source of support. This forum is also a great place to vent!

Best,
Nakamova
 

txtiger

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Welcome to CWE, crunchywheat! I'm sorry you had to find this forum, but it is a good source of information, advice, and support. I would just echo what Nakamova said, think about anything over the past few weeks/months that could have triggered your seizure: stress, fatigue, hormonal changes, anything. Everyone's triggers are different, and, hopefully this won't continue, but if it does, it may take a while to identify yours. Ask questions and write down what the doctor tells you.

Again, welcome!
 

Sabbo

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Hello, & welcome to CWE! This truly is a great site for info & support. Everyone is right--anything can trigger seizures. I've even had days where a complex partial occurred 2 hours after I took a medication dose--& I was just sitting around! Make sure you ask the doctor A LOT of questions.
I have had epilepsy since childhood. I'd often complain of getting a weird feeling in my head (later diagnosed as simple partial seizures AFTER I suddenly had 3 or 4 tonic clonics when I was 14). Seizures can be strange. I haven't had any more tonic clonics, but about 18 years ago, I suddenly began having complex partials, too. Those, unfortunately, haven't stopped.
 

CQ:)

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Hi Crunchywheat

Welcome to the forum. Your story is very similiar to mine.

I'm 40 & I had my 1st seizure at 9 months old and took tonic clonics until I was about 3 1/2. I was kept on medication until I was 7 but slowly weaned off the meds as my parents were told I'd 'outgrown' the epilepsy. I spent my childhood & all my school years seizure free.

I was 21 years seizure free until I started having seizures again one day in 2002 when I was 24. My Mum had rung me but I wasn't makng sense so she called a neighbour to check on me who confirmed I wasnt my usual self and they called an ambulance and I was taken to hospital. My parents live 30 mins away so my Mum met us at the hospital & at 1st they didnt know what was wrong until I had a tonic clonic then they realised the epilepsy had returned. I stayed in hospital overnight and was sent to a neurologist the next day.

The neurologist did an EEG, confirmed my epilepsy had returned & put me back on meds. He also organised an MRI, the MRIs I've had all showed scarring on left temporal lobe. After the seizures returned the meds controlled the tonic clonics but I still took a lot of partial seizures and my neuro couldnt find a med that could control the partials so in 2009 he suggested I think about surgery.

I saw an epiologist in 2010 then went through the pre surgery testing and in late 2010 found out I was a candidate for left temporal lobe surgery. I had my surgery on March 2011 and was 2 years seizure free but started having funny feelings again in 2013. I had a VEEG in 2015 which confirmed these funny feelings are partial seizures. I am still taking partial seizures but they have reduced alot since my neuro adjusted my meds.

I hope the seizure you had was a one off and good luck with your neuro appt.
 
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Thank you all so very much for your replies! I went to my first neuro appointment today and now realize it will be weeks/months before I really know what's up. Now I'm just trying to get back into the swing of work and put up a good front for those around me.

This may be an odd remark, but this experience has really reawakened my love for people. It is absolutely amazing to me the amount and depth of support I received from ya'll on this forum, my coworkers, clients, friends, and my family. Humanity IS still primarily good and whole and holy cow am I thankful.
 

knothing

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Hi crunchywheat,
I had a fall at age 4 and had grand mal's for days but once the brain swelling went down they stopped. It all seemed good my whole life until my late 30's. I had a weekend of work and put in over 70 hours from Saturday to Thursday. I was drinking so much caffeine that it had little effect. Then on Thursday afternoon a grand mal after 30+ years.
The seizure threshold was crossed and 6 months later another and then more occurred until finally got on the correct medication to have a level of control. I discovered after years of trying to learn about epilepsy 2 things.
1 - I had been having deja vu seizures my whole life but thought they were like everybody else deja vu's. So basically I had epilepsy but was unaware
2 - Through CWE I found several people that started having seizures in there 30's. It was almost like at some point our brains lower the threshold for seizures for many that had seizures prior in life (I know of 8 people where this occurred)

So I get how bizarre this feels (except I have no memory of the issues as a kid). You might want to think about everything in your life to see if you were having seizures and didn't know. Also back in school I was always accused of staring of but I don't ever remember doing that and it might have been another type.

Humanity is still overall kind is what I discovered as well.
 
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Hi Knothing,

Thank you so much for the reply! I've been doing a ton of thinking back on my life and while I haven't pinpointed anything that seems like it should have been a symptom I for sure just have this feeling that I should have seen this coming. Between my family history and personal history I was an idiot to believe I "outgrew" anything. I just feel glad that I did have 25 years to tear it up and travel all over before it came back.

Thanks again!
 

knothing

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Your not an idiot, you went with what people you trusted thought and for 25 years it was correct or so it seemed. And don't let yourself think for 1 minute that those 25 years were all you had to 'tear it up and travel all over'. This is only a speed bump in life and you can still live a life.
 

CQ:)

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Between my family history and personal history I was an idiot to believe I "outgrew" anything. I just feel glad that I did have 25 years to tear it up and travel all over before it came back.

Thanks again!
Crunchywheat

You are definetly not an idiot, my parents had been told i'd outgrown my epilepsy when I was a child. But my Mum was always cautious that the seizures may return especially when puberty hit.

It was through this forum that I learnt that your epilepsy is sort of like cancer as it can go into remission.

I did have a break from here recently while dealing with some issues but I've learnt so much from this forum over the years especially when I 1st joined so I'm sure you'll find how amazing it is once you settle :).
 

txtiger

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Hi Knothing,

Thank you so much for the reply! I've been doing a ton of thinking back on my life and while I haven't pinpointed anything that seems like it should have been a symptom I for sure just have this feeling that I should have seen this coming. Between my family history and personal history I was an idiot to believe I "outgrew" anything. I just feel glad that I did have 25 years to tear it up and travel all over before it came back.

Thanks again!
Don't think that your seizures will permanently keep you down. Now depending on what you mean by "tear it up", some of that may need to change (even though mine are controlled, I still try not to stay up too late), but your traveling days certainly aren't over. You still have a lot of life to look forward to.
 
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Thanks to you CQ and txtiger! Tearing it up is really just a reference to traveling 120-200 days each year for my job and working 16+ hour days. Nothing as exciting as it sounds :). So far staying positive is working, had my EEG yesterday and it was just as anticlimactic as my last appointment. Looking forward to a diagnosis that helps me understand if my lifestyle direction needs to adjust.

Thanks again!
 

albenelu

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Hi there and sorry to hear your seizure came back. Mine came back, huge grand-mal 32 years later (I am now 52).Yikes.
 

Cint

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My 85-year old mother had a terrible 12 minute Tonic/Clonic seizure while in the hospital while they were getting ready to do the 24/7 EEG thing. She had been out with my brother and sis-in-law that afternoon and had a CP, so they called 911. Later that night, the fools at the hospital finally decided they needed to do an EEG after the MRI. Finally she was diagnosed with Epilepsy at 85. She is taking Vimpat, but cannot remember much about where she once lived.

My point being: SEIZURES can strike the YOUNG or the OLD! Or in between!
 

Sabbo

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The simple partials that I have originate where there is scar tissue in my brain due to being a forceps delivery. A little while after the EEG, the doctors did a CT Scan, & saw the scar tissue.
I just wish they could figure out what caused the complex partials to start! Those have been very dangerous for me. Once, I nearly fell onto the commuter train tracks during a complex partial. I've also burned myself--second & third degree--at least 9 times during seizures of this type. Breakthroughs occur despite my dosage of 400mg/day Topamax & 30mg/day Zonisamide.
 
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