my name is Dan and i have epilepsy

[gbpackerfan]

hi there, my name is Dan, im 32 and have had epilepsy for about 10 years. i had a depressed skull fracture at 10 months old from falling and hitting my head on the corner of a small table. I never had any signs of epilepsy during childhood, but at 22, I started having seizures in my sleep, never while awake. I have never had any aura or other sign that one was coming on.
I have tonic clonic seizures, sleepwalk, have postictal confusion/ amnesia and have done some very strange things while in a postictal state. I just wanted to introduce myself and maybe share some stories and experiences. I take dilantin daily, but for me, i feel that following a regular sleep schedule helps. this is probably because i seem to only have seizures after working long hours or trying to change my sleep schedule.

 

[Treu Rivers]

I've only ever had nocturnal seizures. I understand completely.
Mines were caused by a car accident 14 years ago and and began to show themselves 5 years ago. I wake up in different places in the middle of the might, I fall out of the bed, I've fell in the shower. I go right back to sleep after the seizure....whether it be grand mal or one of my smaller seizures (I call dreamers because I dream that I'm trying to notify someone that I'm seizing but I can't talk but I'm trying) all the while I'm seizing.
Do you agree that nocturnal seizures are scarier because my MD says that I can die in my sleep if I have a severe enough seizure?
I'm afraid of sleep....I've even woke up choking but it's always when I don't know that I've fallen asleep. I think I was about to seize and woke up choking.
This is very new to me....I've never had health problems until 5 years ago, I barely catch colds.....it's kind if a slap in the face to me.
Thanks for sharing.

 

[N Sperlo]

Hey Dan
Welcome. I've had complex-partials while awake, but some tonic-clonic while asleep. One that I know of.
I've done some pretty silly s--- in my sleep. The one caught on camera was doing situps in bed. I made it to about five before my wife pushed me back down. At least that time I didn't slap her like one time before...

You'll meet some cool people here.

 

[cadsgj]

Greetings gbpackerfan, welcome aboard. Me, I do not have seizures in my sleep very often, I am for the most part a day timer. Do hope you enjoy the site.

 

[Zolt]

Hey Dan,

I really hear your worries about changing sleep schedule, it's a cause of greif for a lot of people. Me included. Not to mention that moving the clock will be happening in a couple of weeks. I hate it when that happens, it has provocated seizure in be before.

Sure if someone is at home and doesn't have a busy schedule with work and all, it's not a big deal, but changing the time back/forward has an increase on deaths and accidents and is not good for people on regular medicine.

If we were to move the clock back or forward, which ever time period we are in by just 1/2 hr, then the whole problem would be solved. Just think how happy all the time keepers would be.

Hawaii, Arizon and Canada already do not change their time. All states should do the same.

If anyone on this site lives in a state where it's still happening and feel the same, write your polititions to end this horrible burden on people.

Zolt

 

[gbpackerfan]

thank you all very much for welcoming me and sharing your thoughts and experiences. Rivers, i feel you. i have an older brother and younger sister who both had chicken pox, which i never caught. i never had any health issues, other than the skull fracture which did not give me any issues until my early 20's, until i started dealing with epilepsy. sperlo, i have been 'awake' after a seizure doing some very strange things, with no memory of them. the scariest experience i have had yet, wow. it was about 3am, i was wearing nothing but my urine soaked boxers, and that is when i 'snapped out of it'. i was in the convenience store on the corner by my apartment, yelling at the cashier after apparently throwing a 44oz slushie on the ground, with no idea or memory of how i got there. needless to say, the police arrived shortly after. the officer was very cool after i told him i had epilepsy and thought i might have had a seizure, and let me make a call on his cell phone to my 55 year old mother, who lives on the opposite side of tucson from me. he 'released me into her custody' for the night. when i got home, i hade made a bit of a mess of the place and left the front door wide open. . zolt, i live in tucson, arizona and do not have to abide by dst. my work is on large commercial electronic and life safety systems. to work around customer's schedules and construction deadlines, places me in situations where i have to work some odd hours. this usually does not bother me, unless i work a normal shift during the day and also have to work a night shift the same night. but i am still very afraid of sleep, especially when im very tired. it is a catch 22. i need to sleep so that i am not too tired, but if i go to sleep when i am very tired, there is a good chance i will have a seizure. sucks.

 

[fuzzalo]

i am in the same boat as you mate, well, sort of. im 32 also. let me say if your gunna have a fit then in bed is the right place, but it seems like you have a few stories to tell.

proper rest is the key to staying free of having a fit, and meds too i guess, but if you dont look after yourself, ur body shuts down right ? u know what im on about. anyways, u got a tough break mate, at least you know how yours started i guess. im still in the dark, but hey, life goes on. so what crazy shit have you done in your sleep. i got a mate who sleeps walks like a demon and some of his stories are just down right crazy

 

[Nakamova]

Hi gbpackerfan, welcome!

Like you, I had a head injury when I was young that may or may not have been a factor in seizures that arrived 30 years later. Will probably never know...

If you are still having seizures while on the Dilantin, it might be worth talking with your neuro about upping your dose to provide a better safety margin. Fatigue is the #1 seizure trigger, so doing everything you can to get good quality sleep is key as well.

Best,
Nakamova
(patriots fan!)

 

[fuzzalo]

Hey there Rivers.

Where to start. Everyone is different, but what a lot of us have in common is we can stop breathing for good whilst tip toeing through the meddow with the pixies, if you know what I mean.

And its not a slap in the face, more so a hurdle you have to over come. Don't let it frighten you. The mind is a very powerful thing, and i have trained myself to stay cool, well, until that last 3 seconds before i have a massive seizure ( they are all massive by the way )
I now the feeling of being aware of your surroundings whilst having a fit, sorry, i just say the word fit, coz I can be arsed typing seizures, anyways, I used to be awake whilst having full blown grand mal fits and watching the horror or the people around me whilst I turned blue and almost died several times. If you die, then its just the way it goes. There is nothing we can do, apart from lots of rest , but dont let it rule your life, or make you scared.

As the years roll on I keep upping the meds and having early night. I rocked the boat hard for some years though, taking lots of drugs and partying, as I said, everyone is different, Ive had mine for 15 years , almost half my life, so Im a pro! ahahaha

anyways, any questions hit me up, im here to offer advise , as i already know everything, well so my mother tells me

take care

fuzz

 

[qtowngirl]

hi there, my name is Dan, im 32 and have had epilepsy for about 10 years. i had a depressed skull fracture at 10 months old from falling and hitting my head on the corner of a small table.

welcome dan!
you'll be so glad you came and joined us, best epilepsy site ever
i also fell and hit my head hard on the corner of a glass table, at two years old. i've asked my prior neurologist and current epileptologist about that being the reason and they both dismissed it, said it would have shown up earlier than it did (age 15).
but it is true, there's no way anyone ever REALLY knows, including docs.
myself i fully believed them, but close to three years ago found out about a lesion and MTS, so they turned out right but that's only in my case. until they can PROVE it, it's just their best educated guess.
big hugs! :hugs:

 

[qtowngirl]

Do you agree that 'nocturnal seizures are scarier' because my MD says that I can die in my sleep if I have a severe enough seizure?

that's to take with a bit of a grain of salt. with a severe enough seizure awake one can die too.
good to keep in mind what doctors say (esp. anyone who's not an epilepsy expert)... we've agreed on here that the best is to regularly resource and learn ourselves, a few great sites for that.
'Pubmed' is what doctors use (was told by my doc herself), and the larger epilepsy sites per city/country. it's very followed in countries such as India and Switzerland. always good to keep yourself informed, with factual info and studies they do.

 

[gbpackerfan]

Fuzzalo, I've had quite a few weird experiences. The strangest one I mentioned above. I usually stay inside the house when sleepwalking. I have awoken in the hospital a couple of times, my seizures really freaked out my ex wife. Nakamova, dilantin seems to work well for me, when I don't have any other contributing factors. In my early 20's, I went years with no meds and no issues. I have started having between 2 and 3 seizures a year since my mid 20's, with the occasional fit of 2 or 3 in a week. Every seizure I have had in the past 5 years has had to do with one of two factors. One, sleep deprivation. Two, stress. Although it usually has to do with both that trigger it for me. Qtowngirl, thanks for your input. My neuro strongly believes it to be from my skull fracture, though my EEG's (4) have all come back irregular, he still insists I have an MRI which I have not been able to afford. My current employer has just made medical insurance available to me and I have an appt with my neuro in 2 weeks to get the MRI scheduled.

 

[qtowngirl]

welcome
glad to hear it's a neuro rather than regular doc, they've studied and know epilepsy, to whatever degree. an irregular eeg is 'good' in the sense that it helps begin the 'what's going on' process. regular (opposed to video) EEG's aren't well known for giving the root answer tho, mri's are so key. hugs and i feel for you that you've had to wait, and also for the ability to now schedule. AWESOME! lack of sleep, stress, and alcohol/drugs are the top three seizure causes, and i'm with you on the stress.
here's hoping having the mri and getting some answers relieves it for you, keep us posted!