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TLA

First seizure yesterday at 31 (in my sleep)

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)

From what I can gather Epilepsy can be genetic i.e can run through a family.

I got diagnosed with epilepsy at the age of 41 with no family background.  As far as I know you are not classed as an epileptic until you have had more than one episode.  The EEG and CAT can show nothing but it does'nt make any real differance as they only show proof positive that you have epilepsy not that you have'nt.  Around 30% show a positive result with the EEG.

It could well be that what you had was a one of, many epi's have the odd one now and again per year  which aint much to worry about!  A lot of epi's have the odd episode then out of the blue they never have another one in there life.

So my advice to you  is to live your life as normal and don't worry about it..

Good life and living Plopdan1

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

Hello,

 

I'm sorry that you went through that!  I was diagnosed with epilepsy almost three years ago at the age of 28.  I only have seizures when I am sleeping.  I went through the standard tests. . .MRI, sleep deprived EEG, blood tests.  Everything came back normal.  I was given the diagnosis of epilepsy because I had "two or more unexplained seizures."  

I have been on the same medication since my diagnosis--just changed doses every now and then (depending on seizure activity). 

I know that scary/confused feeling that you're talking about.  Just last week, I "woke up" to 5 EMTs in my bedroom!  Apparently, I had tried to go to the bathroom (sleepwalking, I guess) and ended up falling in the bathroom and breaking my nose, hurting my forehead, and chipping a tooth.   That is the worst injury I've ever sustained from a seizure.

 I hope that they are able to figure out what is happening with you!  Best of luck to you!

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

Hi,

Just wanted to let you know we are in the same boat this days.  I read your post here and you replied to me with my crazy story.  Looks like we have that "Now what do we do" questions.  We are in the right place. I wrote on another board and it didn't have much info on seizures/epilepsy.  Glad I came on here.  Good Luck and hang in there!

Paige

Cameron: stroke at birth, seizures

Evan: our lil' preemie

http://www.freewebs.com/cameronscourage/

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

Adz - Hi TLA.  The first is always the worst.  It's that whole lack of knowledge thing that is such a pain.  I took my first at 15 yrs 11 mth in a record shop (we had big black flat things called records then), 30 miles from my home village.    The next one was in another shop, the 3rd I don't remember.

Today I help present Epilepsy workshops (volunteer) and work when I can get employment.

I wan't to say hang in there; it is not easy to wait but it is what we have to do.  The next thing is to take control.  Don't be frightened of living with Epilepsy (if thats what you have), keep a diary, record episodes, try and learn from each one (triggers). 

If poss let me know how you get on.  This may not have been of any use to you, sorry.

 

Adz

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

Hi,

 

Im 33, mom of 2 kids, no history of epilepsy in my family. Two weeks ago I had my first seizure while watching a movie at home with my husband, he called 9 1 1 and I dont remember anything untill almost to the ER, they did a CAT and said it was normal and to see a Neuro doc in 2-3 days, so on that Monday morning I set an appt, it was for a little over a week later before they could get me in and I was feeling fine so I took that date, that evening I had my 2nd seizure and my 14 yo son heard it and called 9 1 1 this time they admitted me and did a MRI and EEG, MRI was clear but the EEG showed signs of seizure and epilepsy and some bloodwork came back elevated that supported the seizures as well.  They put me on meds and I seen the neuro doc several days later and he confirmed it was epilepsy.  The evenings get worrisome for me since thats when I had both of them but the meds seem to be working, Im on my 2nd med, the first caused me mood issues.  I guess Im scared it will happen again or I will be alone and not wake out of it.  Good luck with your appt. I hope things go well for you, I know for me 2 weeks out now Im still scared and hope that goes away soon.

Cathy

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

sorry to hear about your sz......i hope it gets better soon.....and yes it does scare the cr ap out of u when u dont know what's going on....i also blacked out from mine and had no clue where i was until i woke up.....take care and god bless

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

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)

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)

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!

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

I have had seizures for 12 yrs now & coming close to the BIG 30...lol ...  I would have my seizures at night when sleeping, no other time. About 5 yrs ago I started having aura’s. I promised that when I had a child that "NO MATTER WHAT" I would take the meds so that it would not have to see them...  5 yrs with a wild child & tired mom w/ no memory, i did find one of the people that saved my life....I am sorry for what you are going through. You are in my thoughts. i am here if you need it.

 

"good or bad - things will never stay the same"

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

Hello. I realize you left this comment a while back but I am interested in your specific story. You talk about having aura's. What do you mean by that? And how have you been doing since you psoted your comment? I am a tired mother of 5 and have no memory. Mixing up names and forgetting things all the time! I just had my 5th seizure in 4 years always in my sleep in the wee hours of the morning. I have asked to be tested and unfortunatley can't get in till November! I would so appreciate any other info. you have about yourself and what you've found as I am still in the lonely "searching for any answers" stage! I've been tested twice and they can't find anything wrong.

thanks,

Jenn

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

UNREAL.  I just logged on to this site as I'm two weeks post-1st seizure.  EXACT same story as yours down to the 2 EMTs and 1 cop standing over me and my confusion.  MRI was clear but my EEG showd irregular brain activity.  In the ER I experienced what could've been 2 seizures: numbness in my arm and wave of nausea.  On Keppra now and fine....just wanting to know why.  No family history.

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

My 10 year old son has had many, many, many EEG's and only 1 has ever showed anything. And that was a very minor spike. He was dx with BRE. Sometimes your brain just has a short circuit but since you have relatives that has E than I would suspect you may as well. Good luck and try coromega fish oil as a supplement. My 10 year old takes that and vitamin b complex, magnesium, and aloe vera juice.

He is on a very low dose of keppra. 250 mg in am and 500 mg in the pm.

Good Luck, wyboemail@yahoo.com

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

I am so sorry to hear what you went through. My son is now 19 he has had epilepsy since he was 8 and he only has them when he going to sleep or sleeping. They done the sleep deprived EEG's and the Cat scans and the MRI but they can find no reason for the epilepsy, just seizure activity in the brain. I can tell you being sleep deprived, worrying and stress will bring my sons seziures on also skipping his meds. One neurologist told me the key to ending the seizures is medication. If my son took his meds like he needs to he could outgrow the epilepsy. You have to keep a check on your medecine levels because if they get low you could have a break through seizure. It is crazy how you just go from never having a seisure to the next day having epilepsy and they can't figure out why. I could talk about this for hours on end. I hope something I wrote today helps you are someone else out there who is struggling like my son. God Bless All!!!

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

I guess i've been having seizures during my sleep for a few years now. Never knew.  I'd wake up during sleep and the best way to explain what happens is this:

 

1) i feel like i can't swallow or breathe like my throat is closed

2) i believe there are involuntary movements of my arm

 

And thats it. Thats usually the last thing i remember..and i must pass out or go into a seizure.  In the beginning, these episodes used to pass. My throat would clear and i'd be ok.  But as time went on/later on,  these episodes wouldn't just clear up. I'd pass out or go into seizures.  I'd wake up dazed..and uncomofortable.  Can't remember if i'm waking up in my bed or on the floor. These "seizures" usually happened only when i drank beer. So i stopped drinking for a while and they stopped. I started drinking non alcoholic beer.  One bottle a day.  No problem. One day i had 4 bottles and had an episode that night.  So just a few nights ago, i had a pretty bad "episode", and i haven't had a drink in months. That was a 1st. So i'm concerned.

I've was tested for epilepsy last year and i was told that i don't have it.  The first doctor i saw (after my father found me out cold on my floor one night) told me that it sounded like Sleep Apnea with seizures.  I've had cat scans, MRI's (with contrast) and nothing's come up.  At the hospital the night my father found me, all the tests they did came back normal. They said the only thing wrong was that my blood oxygen was low.

 

Never had a seizure during the day time or any other time at all..only during sleep.  Which is why i'm hoping it's just Obstructive Sleep Apnea.  I'm gonna try to get a sleep study done and see what happens.

Has this ever happened to any of you people?

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

Thats the same thing that happened to me I woke up and 2 emts and my husband were standing over me...I was transported to the hospital and test were ran they put me on topiramate and I have to go see a neurologist Jan 18 for follow up...so did u dollow up wit a neurologist and if so did he say why it happened also did he continue u on meds....

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

at age 32......

Woke up with EMT's over me and my wife crying.

EEG, catscan, and MRI were all normal.

Had 5 more over the next 6 months.

The last one happened in the hospital 2 hours before my son was born. (almost missed it)

I learned what my triggers were. (lack of sleep, dehydrated, stress, and a unhealthy lifestyle)

Now I get plenty of rest, stay hydrated, eat right, and exercise more. To eliminate stress I got orginized in every part of my life and never take on too much.

I also found a great doctor that listens and got me on the right medication rather than the hack I had before.

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

I think mine also comes from lack of rest ...runnin around here with my 1...2...and 7yr old worryin about xmas...a bday...a gas bill...my deceased moms b.d. and more money woes....and lack of sleep ...I think it all just rolled up together and caught up wit supawomen...but Ill keep ya posted once all my test are ran...take care of urself life is too short

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

My story is similar, but I wasn't asleep. I was laying in bed next to my husband (who was napping), on my laptop, with the tv on and the fan on overhead (i have since learned the flickering is a trigger). I was 31 and taking Ultram, known to lower the seizure threshold. My husband and I had laughed when we read that side effect, strangely. Apparently I started seizing. I don't remember anything until I was fighting with an EMT who was trying to put an IV in. Went to the hospital, they did CT and maybe MR I. I told them I was on Ultram and that probably caused it. They agreed and sent me home. As it turned out, I probably had smaller seizures for years. About 7 months later I was extremely stressed,middle of the day, had just quit my job and was on phone with mother-in-law. I "cried out" and dropped the phone. She thought someone broke into the house. At some point I started to undress myself. I peed. My husband called and I answered the phone. I don't remember any of this. Sirens were coming, he could hear them. I called him "mom" and let him talk to the EMT. I started to come around and was terrified. Went to ER again. This time sent me to neuro. EEG showed nothing but symptoms were clearly epilepsy. Since then I've had EEGs that do show my foci. My epi has gotten much worse, mostly because of major stress. I'm refractory. But my case is unique because I went into status several times and that really messed up my brain pathways. Best of luck. Remember, one seizure does not mean you have epilepsy. But be vigilant.

Tracy L. Karol http://www.TracyLKarol.com

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

My first seizure I had, also in my sleep, happened similar to yours. Although I did not pass out after the seizure. When I came to, I had a pounding headache in my forehead above my eyes, I was extremely nauseated, the side of my tongue was bitten, and my legs were weak and sore and I was confused. I was taken to the hospital in an ambulance. The EEG was normal, blood test (I don't know if they took one), was normal, the dr. did not say anything about anything. They said I had a seizure but they did not tell me why. They sent me home and I was fine. 2 months later, I had 2 more seizures, 2 hours apart in my sleep. I went to hospital again, and they gave me a liquid anti seizure medication, gave me Phenytoin (Dilantin) 3 times a day. 3 pills a day got to be too much meds. had to put it down to 2 times a day. That is still too much pills for me. I get sick when ever I eat food. The dr. never told me why I have seizures or if I have epilepsy. My fiance and I both think I have Nocturnal Seizure Disorder. It is a form of epilepsy and it is not very well understood. In this seizure type, people have seizures only when they are asleep. They have extreme headaches after seizure, extreme nausea, tongue bitten, legs weak and sore, and sometimes they can pee or poop their pants. EEG readings will be normal because the person is having the test done while they are awake. To really find out what seizure you have, you have to go to an epilepsy sleep center and have them stop your meds, and stress the hell out of you. The EEG will show what seizure you have then. Dr.'s have found out that each seizure has its own brain wave patterns. There are over 40 seizure disorders. Sorry for rambling. I hope you find out more about your seizure. Good luck!

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

Hi   all..  i`m Brian , Had epilepsy for about 25 yrs       As for having them in sleep   only recently started having them in my sleep within maybe past 3-5 yrs...  maybe not extremely intense as say  gran-mal or so.. but  others told me  had   and   i remember right be fore falling asleep started feeling it...

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

I had a seizure in my sleep a grande mal.  This was controlled by meds but now I have sleepwalking episodes but because of the past the doctors dont believe me it is very frustrating as I used to be a trucker before the episodes from 1996 to 99 and have no career now at 42. I have not had a seizure for 3 years but they call my sleepwalking seizures ang it costs me driving priveleges over and over even though I have to be asleep for anything to happen,,, Any thoughts helpful. Thanks

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

Glad I'm not alone .. thought I was crazy!  Hi all, was searching up seizures in the sleep .... spent the day in the hospital yesterday after waking up ... I'm pretty sure I had a seizure ... then stumbled around upstairs hitting walls and running back and forth (in sleep or seizure mode) until my kids called for my husband.  Today I am so sore .. but all tests at the hospital came back clear and good ... they listed it as "state of confusion" ...  though after wandering around, I didn't know where I was, what day it was or what my last name was!  Not to mention the severe headache and muscle aches .. from my jaw to my calves!  More than a state of confusion if you ask me .... but I'm in no hurry to be officially diagnosed!  =(

I am 41 years old ..... I've had a few light episodes that fit the descrip of partial complex seizures, but nothing on record to date. 

So what are the doctors saying NOW .... ?  My son is epileptic and got his license back after 3 months.  I would think you could petition the DMV if you've gone so long without an episode.  The paperwork they need is on their website ... it's a medical re-evaluation (I"m not sure what state you are in or I'd send you a link!).  But if you are still experiencing sleep seizures .. I wonder if you need to be on different meds????  Just a thought. 

Good luck!  I KNOW HOW FRUSTRATING it can be!!!!!!!  Hang in there!