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First seizure yesterday at 31 (in my sleep)

Thu, 05/22/2008 - 16:51

I am new to this site and not sure where to post this so I hope this is a good area, where people read this and can offer some advice.

Yesterday morning around 5am my husband was woken by the sound of me apparently choking.  He turned on the light and my body was in a seizure (muscles all stretched out in arms and legs, head back, eyes rolled back in my head) and turning blue, also foaming at the mouth.  He called 911.  By the time they arrived (about 7 minutes by his estimate) I was out of the seizure and in a heavy sleep.

When I woke up, I freaked out because there were 2 EMT's in the room trying to talk to me and I had no idea what was going on.  I was in a very confused/scared state and passed back out within 30 seconds.  I'm told that they got me out of bed and walked me down the stairs to a stretcher waiting, then transported me by ambulance to the local hospital, none of which I remember.

They ran a few tests at the hospital and decided to transport me to the city an hour away for further testing.  I had a CAT scan and EEG done.  The good (?) news is that both came back clear, no tumors and no signs of epilepsy on the EEG. 

So now what?

I am going back in about 2 weeks (waiting for the appointment) to have a second EEG done, this one where I have to stay awake the whole night before so that I am extremely tired for the test.  If that one doesn't show any epileptic signs I'm not sure what's next.  It's "only" one seizure but one too many for me!

I have an aunt, uncle (brother and sister), and cousin who had epilepsy in their younger years that they outgrew so I guess that is why the dr's are doing further testing, because of the possible genetic link.

Anyone have any thoughts for me, advice?

Comments

Re: First seizure yesterday at 31 (in my sleep)

Submitted by toni2 on Fri, 2008-06-13 - 02:41

hi,

i just pretty much posted my story in a different discussion (see the one about the 32 y.o. with new generalized onset seizures), but just wanted to let you know i have almost the exact same story as you do above, but I'm a 1 1/2 yrs later. And, the sleep deprivation eeg was the only test i ever had come back positive.  Best advice would be to make sure you have a neurologist you can trust (don't be afraid to switch) & absolutely DO NOT DRIVE right now. I didn't follow my own advice and had a second seizure 3 weeks after the first one. I was really lucky that i didn't have the seizure 10 min earlier because i would have been driving my car. It wasn't until the 2nd seizure that they decided to put me on meds.

And, it's definately quite an adjustment, but  -pending no more serious episodes- life pretty much gets back to normal. good luck!

 

 

hi,

i just pretty much posted my story in a different discussion (see the one about the 32 y.o. with new generalized onset seizures), but just wanted to let you know i have almost the exact same story as you do above, but I'm a 1 1/2 yrs later. And, the sleep deprivation eeg was the only test i ever had come back positive.  Best advice would be to make sure you have a neurologist you can trust (don't be afraid to switch) & absolutely DO NOT DRIVE right now. I didn't follow my own advice and had a second seizure 3 weeks after the first one. I was really lucky that i didn't have the seizure 10 min earlier because i would have been driving my car. It wasn't until the 2nd seizure that they decided to put me on meds.

And, it's definately quite an adjustment, but  -pending no more serious episodes- life pretty much gets back to normal. good luck!

 

 

Re: First seizure yesterday at 31 (in my sleep)

Submitted by mandi b on Fri, 2008-06-13 - 14:50
My story is very similar to yours - if that makes you feel any better, I don't know - but apparently many of us start our journey with epilepsy this way - - - at age 50 at 3am I also woke my husband while having a seizure. He thought I was having a stroke or heart attack.  I bit my tongue and left the bed bloody. By the time the paramedics came I was speaking to them and was quite argumentative (but I remember none of this) and wouldn't go with them until I went to the bathroom first).  I remember nothing until I was being wheeled into the emergency room and the nurse/doctor was asking my name, did I know where I was (I did) and did I know the date and who the president was (I did).  I had a CT (which I didn't remember having) - then a 2nd one , which I was very uncomfortable/claustrophobic I guess.  Nothing was really found - except perhaps a slight old injury scar - perhaps an old stroke scar ?  I had an EEG before I was discharged and here is where they found my problem - activity in my left temporal lobe - which is what they will now call epilepsy.  I was put on Dilantin at that point.  I have not had another seizure in 5 years - I continue to take daily meds because after yearly EEG's I am told that now I have activity on both sides of my brain (I'm told that is "mirroring" - typical) - but now I'm taking Topamax, don't like it - might be switching to something else - but I am thankful to have not had any more seizures).  I didn't drive for the first 3 months following the seizure (according to the law of my state) -   but my neurologist says that my medical history does not stop me from driving now because my seizures are controlled (having had only one and I take my medicine faithfully).  She says I will probably never know what caused me to develop epilepsy at age 50 - most people never know a cause.  It makes me crazy every day trying to think of something I did.  Being from the generation I am from, I specifically never did hard drugs because I was afraid to permanently affect my brain in fear of something like this - - - and then I got something anyway !  Maybe it was during labor from one of my 3 children, or during surgery because 2 were delivery c-sections, or that gall bladder surgery, or that time I ran smack into the telephone pole on my bicycle, or the time I got too drunk, or the time I was so sick with the flu and was throwing up so hard I thought I was throwing up my brains !  Geez, can I try to come up with a reason ?

Re: First seizure yesterday at 31 (in my sleep)

Submitted by jkhilfiker on Fri, 2008-06-13 - 14:55

Hello!

I just joined here, and find it comforting to read other people have gone through somewhat similar things to me!  I agree with a lot of the things I have found written below.  I have had two tonic-clonic episodes, both in 1997 if I remember right!  Both scary, and both while I was in the bathroom, the second time, in the shower!  I was fortunate my dad and sister had stayed with me the night before.  It is a scary situation, but one that is usually able to be controlled.  Definitely find a neurologist that listens to you.  It is your body, and they don't always know what it is "telling" you!  Good luck!

Hello!

I just joined here, and find it comforting to read other people have gone through somewhat similar things to me!  I agree with a lot of the things I have found written below.  I have had two tonic-clonic episodes, both in 1997 if I remember right!  Both scary, and both while I was in the bathroom, the second time, in the shower!  I was fortunate my dad and sister had stayed with me the night before.  It is a scary situation, but one that is usually able to be controlled.  Definitely find a neurologist that listens to you.  It is your body, and they don't always know what it is "telling" you!  Good luck!

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