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New Here: First Seizure Questions: Adult onset?

Hi, New here: A little background 1st:
I had my 1st seizure about a few weeks ago. My husband called 911 when he woke up to hear me making sounds and struggling. He said I was jerking, eyes rolled back, moving everywhere, not responding, no clue he was there. I didn't respond to 4 paramedics, an ambulance ride. When I came around I didn't know where I was and my tongue was bit up. I couldn't hardly talk. My blood sugar was very low and I had a headache on the left side of my head. I did not know where I was which caused hyperventilation. With not one around, not memory of what happened. My husband was still at home waiting to come and have someone stay with the kids. Once we were all settled and my husband could get there and tell what happened, I got the full work up. MRI, EEG you name it they did it. I stayed at the hospital for 2 days. My EEG spiked and I had a seizure with that. So Complex Partial Seizure left frontal lobe with secondary generalization. I did a sleep study, results soon. On Depakote, no driving for 6 months. I have had simple partial seizures after the hospital visit.
My son has seizures as well and on Depakote/Tegretol. He had a stroke at birth so they say my seizure and his seizures are not related. His is due to brain injury at birth. The Dr. feels that I am under stress...well yea stay at home mom to a boy that had a stroke, not to mention other stuff. The Dr. said stress triggers seizures. They said I could be having tiny seizures in my sleep then the big one the other day.
Questions:
Many of my friends are asking me if adult onset seizures are common? I forgot to ask the Dr.
Will this be the last big one? Or more to come? If I have another one the 6 month driving starts over so did some of you not drive for a year?
I am depakote and they will raise it up to the right dose for me gradually. I am bit overweight anyway....I heard it makes you gain??
If my sleep study comes back saying I have sleep apnea which caused the seizure, won't a cpap machine help and I really don't have a seizure disorder??
Thanks for reading!

 

Comments

Re: New Here: First Seizure Questions: Adult onset?

First: You will be ok!

Second: You have to be honest with your neuro and yourself. Most triggers are related to lack of sleep or insuffient diet. If all your tests come back negative(ie MRI, Cat scan, EEG, blood work) your meds should help. However, you might have to change meds before they fit you. Different meds for different folks and or conditions.  Seizures are a side-effect of something and it sounds like diet and sleep, with anxiety could be contributing.  I would spend as much money as you can afford, make your sleep #1!  Bed, pillows, etc.  Small price to pay for your health and happiness.

Third: This website is the best thing for your health, emotions, and family awareness.

Forth: The more pro-active you are, the better you will feel physically and spiritually.

Remember, everyone is here to help and create awareness, which leads to action and then holding yourself accountable. Good luck and I share your feelings.

 

 

 

Re: New Here: First Seizure Questions: Adult onset?

Adult onset in my case as well (in my 40s). 

 suggestions: start keeping a diary of your seizures and a list of questions for your neurologist. if you dont already have a good calendar, get one where you can make sure to write down your drs. appointments, dose changes, EEGs and other tests. and get a medalert bracelet in case it happens when you are out on your own.

i have lost my driving privileges for 1 year (though they haven't given me an 'official' diagnosis of epilepsy, i have fainted about 14 times). 

Also new to this group but have not had any responses to my first message, so maybe i am in the wrong community here.

Re: New Here: First Seizure Questions: Adult onset?

well hello fellow license looser. I too can't drive anymore, do to the fact I drove my car over a 35 ft. embankment and thru 3 lanes of traffic after seizing. But it is for the best. I was doing good and was 7 months seizure free, until this past thrusday. Now I have to start all over, with only 2 days under my belt.

Re: New Here: First Seizure Questions: Adult onset?

 

sorry to hear about that awful accident and truly hope no serious injuries occurred. still a bit confused about the definition of seizure free and whether that means absolutely no dizzy spells (simple partial) or just the ones that impair consciousness (complex partial and worse)?

Re: New Here: First Seizure Questions: Adult onset?

I seem to only have Grand-Mal seizures, and when I have them, boy do I. I have (of course) been wrote off as being epileptic since I have had no tumors show up or have had any other test come back saying otherwise. But I still wonder how common it is for an adult to wake up one day and just start seizing.

Re: New Here: First Seizure Questions: Adult onset?

1) In my case, the process was probably a bit gradual. Starting about 15 yrs ago, I had really occasional dizzy spells, triggered for example by smell or just randomly hit me. Then the 'fainting' started about 3 years ago, and that was at first many months between, then a couple months apart, until last Nov-Dec. I had 3 in a one month period, so they finally got me started on AEDS (though this is officially a trial since they haven't given me a diagnosis yet).

2) From what I understand, there are many others who just suddenly as an adult experience seizures, even tonic-clonic ones. In the forums, there are many postings by new-to-this adults who have just recently had their first seizure, out of the blue. Some of them have already got neurologists and AEDs, some are still struggling to have their symptoms recognized and taken seriously.

Have you got a friend or family member who supports you in this?

Re: New Here: First Seizure Questions: Adult onset?

I'm 38, but had my first seizure when I was 19 - a grand mal that came out of nowhere. I've probably had about 10 or seizures since then - all grand mal.

When I was in college I was taking a shower in my apartment and next thing I knew paramedics were standing over me and I had somehow knocked the shower tiles out and I could see the shower plumbing. Another time I was driving a friend home unexpectedly when all of a sudden I had a seizure behind the wheel and he realized what was going on and steered me off the road. If it weren't for the fact that he needed a ride home at the last minute, I may not be typing this right now.

A year and a half ago I had one after being seizure free about 8 years, while at work. It was grand mal, but not as severe as some of the others I've had. A week ago, at a job I've had for almost a year, I had probably one of the worst grand mals I've had. I'm told that they had to replace the carpet in my cube because I gnashed on my tongue so hard I was bleeding all over the place. My lips were so swollen and scarred that they looked like I went a few rounds in a prize fight.

What is really scary is that this last one I had I was about 30 minutes away from leaving work and picking up my kids at the daycare. I think I've given up hope on ever driving my kids anywhere unless I absolutely have to. I am scared out of my mind. Of course Texas prohibits you from driving for 6 months if you just had a seizure. I totally understand this and will not even think about driving a car during that time.

I've had EEGs, Catscans, the works,  but all I get is results saying that the readings show that I obviously have a seizure disorder and have epilepsy. Nothing ominous like a tumor or anything thank God.

I've been on Dilantin, then was switched to Tegretrol, then Carbatrol (which I am on currently and have been for the last 10 years). My neurolgist however feels that I may be better off being switched to Keppra. So now I am on Carbotrol AND Keppra and within a year I'll just be on Keppra.

I'm glad I found this forum and am not the only one going through this. I realize I am "lucky" compared to the folks who have to deal with these on a daily basis, but it scares me shitless. The worst part was when my 5-yr old son was crying the other night to my wife because he was afraid to be home alone with me as he was afraid I was "going to be sick again".

 

Re: New Here: First Seizure Questions: Adult onset?

Hello,  I too did not get a response, but continue to read the other entries.  I live in California, and have been siezure free for 3 months.  After taking a full driving test, I have my driving priveleges returned.  I have taken a couple of small drives , but still am a little nervous.  I am controlled on lamicatal, and other than a few minor "Odd spells" seem to be siezure free.  I am also keeping a diary , and my neurologist is pleased as most people do not.  I am lucky because, I have a lot of support at home and with my work colleagues.  Do you find since your seizure you have days when you cannot focus as much as you used to?

Good luck to everyone,

 

Jan

Re: New Here: First Seizure Questions: Adult onset?

Thank You for your reply! I needed a little reassurance and some answers! Thank You. I have been looking on here at other posts and it seems like several of us have had our 1st seizure as an adult in our sleep, waking up and not knowing what happened, then on meds, not driving. Looks I a found the right place for support and questions. Thanks!

Paige

Cameron stroke at birth seizures

Evan our lil preemie

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

Re: New Here: First Seizure Questions: Adult onset?

I have to say, it was nice (sad as that sounds) to read about someone else experiencing something similar lately.  I posted my story as well which I'm sure you read (First seizure at 31...)

 

Re: New Here: First Seizure Questions: Adult onset?

I am defenetly in the sleep problem catagory,with sleep deprivation/extream tiredness as the #1 trigger!

same thing..adult onset with seizures during sleep

Re: New Here: First Seizure Questions: Adult onset?

I had my first seizure 14 months ago while asleep.  My husband wittnessed it and then another about 3 weeks ago.  I am on Keppa now.  So strange to be going through this.  Do you ever feel that you have had other smaller seizures and not really known about it?  Have you had an EEG done at a sleep center to monitor your REM and sleep patterns? 

Re: New Here: First Seizure Questions: Adult onset?

Hello,  Thank you for posting.  I too am new to the site .  I am 59 and had a seizure in the middle of a dress shop in April.  My husband had the worst of it having to watch and not know what was wrong.  I have been told this is an adult onset condition.  I have had all the tests and am taking Lamactal as a precaution.  I have been told that there is a good chance I will seize again.  I work full time and am feeling much better.  I do seem to have some vacant moments though.  I am not sure if that's just my age though.  Please let me know if you have similar experiences.  I am sorry you all have this problem, but it is comforting to know I am not alone.  Thanks for listening,  Jan H

Re: New Here: First Seizure Questions: Adult onset?

i hope you feeling better paige......... take care and god bless

Re: New Here: First Seizure Questions: Adult onset?

I have a cold, had one for a few days now and today I fell asleep in the recliner and woke unable to move my limbs, I was shaking, I couldn't open my mouth and I barely understood my surroundings.  I tried to speak but couldn't; it felt like my jaw was wired shut.  It lasted about 45 seconds, then started again.  It happened three times each shorter than the last, all in about a total of 2-3 minutes.  Then I fell dead asleep and woke wondering if it was really a dream.  I don't think it was.

 

I'm a nurse and in my head while this was happening I thought I'm having a seizure but I also know I shouldn't have been concious enough to say I knew I was in the middle of a seizure.   I definately wonder if anyone else recalls knowing a seizure was happening right in the middle of it happening.

D~

Re: New Here: First Seizure Questions: Adult onset?

DonnaC74,

I began having seizures 2 years ago, 80% of the time I am aware I am having one.  I can not control what my body does.  My thoughts are usually there, but I can't stop what is happening.  I have been able to speak during minor ones, but most of the time I can not. I do let out a moan/cry from the squeezing that is occuring to my insides, that I have no control over.  I have had seizures while sleeping and have woken up to find myself uncontrollably jerking and am to tired to stay awake, but remember the next morning that I have had one, mostly because I am sore from the muscles tightening.  As far as I know there are only a couple of types of seizures that people are unaware they are having them.  I'd bring it up to your doctor. 

Disneymom

Re: New Here: First Seizure Questions: Adult onset?

I have to reply to you because I am a nurse also and was always taught that there is no way you could be concious and aware of a seizure happening but I am going to tell you that I laid on my couch and can swear to you I felt one of my seizures but could not respond to it.  I was in extreme pain.  It started like excruciating shocks coming out of my brain and through my body.  My husband said it looked like just my regular ugly grand mal seizures but I bawled afterward because I was terrified.  I never experienced a sensation like that and never want to again.  I hate epilepsy as it is but this is not getting any better.

Re: New Here: First Seizure Questions: Adult onset?

OMG! I am so happy you posted. I have been having seizures since Feb 09. New Adult Onset, yet to be diagnosed. I am so tired of hearing from Doctors who are unfamiliar whith the various types of seizures that because I remember parts of the seizure or sometimes continue to function while an arm is twitching or my brain is buzzing or I'm having weird surging sensations through my body that it is not epilepsy and is psychogenic. I don't buy that because life is wonderful! (except for this)

I was initially diagnosed with narcolepsy, but all testing was negative so the label Idiopathic hypersomnia was applied. The neurologist told me that temporal lobe epilepsy is often misdiagnosed as narcolepsy...then he tells me he doesn't know what is going on.

All my tests so far have been normal but from what I am reading, that seems to happen a lot with temporal lobe epilepsy.

I am tired of waking during the night to the smell of burning and thinking my house or barn is on fire!

Kinda of long winded...rick mercer rant, but thanks, I feel much better now.

Re: New Here: First Seizure Questions: Adult onset?

in all but the worst of my seizures I am  able to see and hear and i do realize what is going on, I am not allways able to recall details or respond.

Re: New Here: First Seizure Questions: Adult onset?

I had my first seizure in my 30's also.  In fact, it has been my only big seizure - I was diagnosed with temporal lobe epilepsy about a year ago, and those seizures have been fairly mild and had in the past been attributed to psychiatric symptoms (bipolar disorder).  Anyway, just to say that I don't think it is all that unusual for seizures to start in adulthood.

As to the sleep apnea/seizure connection.  I also have sleep apnea, which really suprised me when it was diagnosed, as I really don't snore much and thought I slept through the night just fine. (In fact, my sleep apnea is moderate to severe)  Being treated for sleep apnea might stop your seizures, but the apnea  might just be one of several triggers.  It is definately worth being treated for it, though, because you will feel better.  It took me a while to get used to the mask, quite a while, actually, but it has been worth it.

Depakote increases your appetite.  Watching what you eat can help with the weight gain, but that is easier said than done.  If it becomes a real problem, you might be able to change your medication.  Talk with your doctor about that.

I hope some of this rambling might help somewhat.

 

Re: New Here: First Seizure Questions: Adult onset?

Hello: my husband has his first seizure Dec. 19th.  He's 63, and he had a horrible chest cold at the time.  He took a cold medication with Tylenol and also an Extra Strength Tylenol.....and went to bed.  I found him at 4 am on the bathroom floor in what I thought was a seizure.  911 brought him to a local hospital, tests were performed over the next few days but nothing was diagnosed as a cause.  Doctors weren't sure if it was a stroke or a seizure.  No anti-seizure meds were prescribed at that time.  He stayed home from work the following month, and by the end of the month he felt great, relaxed, looked wonderful, etc...but then exactly one month later, he had another seizure around midnight...he went to bed feeling fine and then just started seizing again...back to the hospital, more tests, no diagnosis....here's what I'm wondering...i see lots of people say that they had colds when they had their first seizure, and lots of sites saying that having a cold makes you more suseptible to seizures...and I'm thinking, what if it's the cold medication that triggers the seizure?  Evidently, from wnat I'm reading, once you have a seizure a pattern for future seizures might be set.  Did  you take cold medication before your first seizure?  Marie M, Los Angeles, CA.

Re: New Here: First Seizure Questions: Adult onset?

I thnk it is the cold virus itself, because my husband, who rarely gets sick, also had gotten a cold just before both of his seizures.  It just started with a runny nose & the sniffles, but after a couple of days of that he had the two grand mal seizures at night.  The rest of us just got a regular cold.  I happened to mention it to a couple of friends, and it turns out that one of them also knows someone who only has seizures when she gets a cold.  Given that viruses can lodge themselves in the human body for long periods of time, sometimes indefinitely, and can be triggered by other health issues, I wonder if there is not a combination of facotrs at work here to lead up to a seizure.  Is the cold an indicator of an impending seizure or part of the cause?  If it is an indicator that the immune system in under stress, it would seem like there would be other indicators as well.   I do know one person who has herpes and only has outbreaks when she is getting a cold, maybe the same thing is going on with the seizures.  Or, if the cold is the cause of the seizures, what kind of virus is really causing the cold symtoms?  How could it be idenified?  I don't know the answers to these questions, but noticing that the seizures were preceeded by a cold is, I think, very important.  BTW, my husband does not generally take cold medicines, and had not taken any before his two seizures.    Let us know if you find any more info, and maybe you could post the websites where you found something.

Re: New Here: First Seizure Questions: Adult onset?

I'm 37 and I had my first seizure just after New Years '09.  I had just watch on the news the night before that John Travolta's son had died from having a seizure and hitting his head.  I remember thinking how tragic and sad that was.  Little did I suspect that the very next morning I would be passing out in the bathroom and having my first seizure.  Lucky for me my husband was there to catch my fall.  I awoke to him frantically on the phone with 911 and have no recollection of the seizure.  I also had a cold at the time but was not taking and cold medication.  I had extreme back pain due to a strained back and probably a bit sleep deprived.  At the ER I also learn I was  dehydrated.   At the hospital they did a CAT scan which showed nothing.   I was informed that I should not drive until further notice and was advised to see a neurologist.   Weeks later I had a MRI (also showed nothing) and an EEG.  My EEG showed an abnormality in my left temporal lobe.   And I was diagnosed with having a low seizure threshold, and the neurologist described my seizure as a complex partial seizure with a secondary generalization.  I don’t believe the cold virus is a direct cause of a seizure.    I believe having a cold, being dehydrated, exhausted and possibly lack of oxygen due to passing out, was the "perfect storm" to trigger a seizure.   I believe there was an unknown pre-existing condition in my brain that cause me to have a seizure.

I have noticed trouble keeping my train of thought at times and my short term memory not being as good as it used to.  I was prescribed the generic form of Keppra, which caused me to be extremely mood, low energy, rash and depression.  After that experience I am reluctant to take anymore AED's.  I'm feeling good and taking better care of myself.  Making sure I'm hydrated, taking my vitamins, eating healthy and getting my sleep and exercise.   I realize I am taking a risk by not taking the drugs.  I'm also looking into getting a second opinion as well as other sources of treatment. 

I hope we all continue to search for anwsers and find out how to manage the situation we are all in. Good luck with everything.  Syl

Re: New Here: First Seizure Questions: Adult onset?

My name is Jason, im 24 years old, I have kind of a long story but i will make it short, most of my life i have been a very healthy and fit guy. I went through phases of drinking heavily, being in a hard rock band , smoking pot for a while but never to extreme ammounts. Through most of my years as a teenager i can remember rarely i would have these moments where i would almost "Lose time" in my head. Like a split second or two and kinda jerk slightly. Nobody ever noticed and i never thought it was an issue, i figured it was normal. A few years later i moved out on my own and did not eat well and drank heavily. one day going to work after a night of drinking wine with my girlfriend i blacked out at 8am driving 50mph and crossed over into oncoming traffic luckily hitting a palm tree in the median before hitting the other lane. The only thing i remember is waking up in the ER with a neck brace and a backboard with my parents next to me. The woman who called 911 told my parents she was holding me as i was having a seizure with a red froth bubbling from my mouth! My Liscense was suspended for 6months and i was put through an EEG for 3 days, and diagnosed with JME. 1000mg of Depakote a day they put me on these god for saken horse pills and i felt like i was never going to be the same

 I moved back in with my  parents and eventually recovered, and decided to make a change and become an EMT \ Fire Fighter. I went through the program, eating and sleeping relatively well and getting plenty of exercise. Never had a dizzy spell that i can remember, even standing outside working hard in 95 degree heat in full fire gear for 5-6hrs. (I live in Florida) I took myself off the medication before i even went in the program, i have not taken it since. But over a longer period of time i have seemed to pick up anxiety problems and its almost like my anxiety works against me with my JME.

 The most natural way to battle JME that I have found is to be the penacle of health. Eat right, Sleep well, dont drink, and take care of your body. The only time i truely felt like i was back to normal was when i was going through the fire accademy. My thoughts were stronger, I could FOCUS on reading material and taking tests, (not ALL the time, but far better than most). I took myself off the medication about 2yrs ago and havent done any since, but i feel like it is starting to creep up on me again, i started smoking again and i dont sleep and eat as well as i used to, im just scared my JME and Anxiety will group up on me at a bad time being a fire fighter. Im not on the job yet but am about to be. Anyone experience anything similar at all??? My girl saw my eyes roll not too long ago and she started crying, she didnt know what it was and it happened just for a split second so i had to tell her.....im just really scared right now and i dont know what the hell to do about this, i hate medication, and i feel like i can beat this without it. Has anyone done it? Or Experienced this? I am very concerned. I know it was long, but it at least makes me feel better venting this out :)

 

-Jason

Re: New Here: First Seizure Questions: Adult onset?

Hi Jason, I hope you are doing well.  From what I have read, getting a lot of exercise is really key to warding off seizures and minimizing their duration.  We, too, are looking to beat this without the meds--they are so, so bad!!  Check out the Mayo clinic website for some ideas about diet, stress and stuff to avoid (like caffiene, alcohol, aspartame in gum, etc).  I know that in some places doctors are using the Atkins diet, no kidding, to treat epilepsy in kids.  It keeps the blood sugar very low, and the body gets its energy from buring fats.  Not everyone can do it, because you have to eat a lot of proteins and fats and very few carbs, but the ketones that develop as your body burns fats for fuel see to alleviate or inhibit seizure activities.  ANyhow, do post if you find other useful therapies, as I know we all would love to know.  I will do likewise.  We are going to try accupuncture.  My husband is also taking liquid electrolytes twice a day, as they seem to normalize brain activity and stabilize brain patterns.  Also, he is taking a lot of B vitamins to help with the normal enzyme functions in the brain.  These are two cheap and easy to take supplements that have no side effects.  Your anxiety is probably linked to the seizures, so going after it would seem like a way to handle both...  I know my husband used to smoke pot a lot, mainly as a stress-reliever, and I think it could be part of the problem, but other people are using it to treat their seizures.  I wish some med clinic would do some better studies on it regarding seizures and seizure treatment, as it seems a better understanding of how it works both negatively and postivlely is important.   Anyhow, good luck with your anxiety and your seizures and finding a way to de-stress.  Let us know what works.

Re: New Here: First Seizure Questions: Adult onset?

Hi Jason... I have been on Depakote for the past 5.5yrs and for about 9mths now have been having severe side effects from it. I was on 1500mgs daily and have taken it back slowly to 750mgs. I find it totally smashes my thought processes and concentration, creates nausea and recently I've gotten the ringing in the ears. All of this creates extreme anxiety and stress which in turn leads back epilepsy. I have tried switching to Lamictal but that gave me even worse side effects. I have also tried Tegretol - yuk!

I'm currently not driving which is a problem as I have 2 small children but I don't trust my concentration at the moment.

I have recently started seeing a counsellor to discuss all of my issues relating to medication, anxiety and life in general (we recently moved to USA from Australia) and that is helping. She also suggested I get to a neuro who specializes in Epilepsy to help me transition to another medication safely. That might be something to consider.

There are mixed messages about smoking pot with epilepsy. Some people swear by it but it totally makes me anxious and paranoid and that is one of my triggers so I avoid it totally. You are totally right about keeping fit and healthy and it having a good effect on E. Good luck with your issues. You are doing a great service by becomming a fire fighter - hang in there!

 

Re: New Here: First Seizure Questions: Adult onset?

Hi, I am writing because my husband had his first known seizure last October--back-to-back grand mal, lasting over 7 minutes.  Was disoriented, dizzy, imbalanced, and totally confused for several hours.  Then he had the second one, 5 minutes long, a couple of days ago, but came out of it better.  It was very horrible to witness, and I am really having trouble with the doctors in our town.  All they do is repeated CT scans, but on the AAN website I see that they recommended protocol for first time seizures is a EEG within the first 24 hours to pinpoint the part of the brain where they begin.  The doc here just wanted to write a prescription for dilantin and send us on our way.  I have researched all the drugs and my husband and I agree they are too seriously bad in their overall effects for him to take them unless there were absolutely NO other alternatives.  We have ad a heck of a time trying to find a good sleep specialist, a neurologist who is not a drug pusher, and someone who will take a look at my husband's total health situation.  Generally his is in good health, but he has an old back injury from getting hit by a car and it re-aggravates from time to time, including right before both of these seizures.  And although he has not been diagnosed with sleep apnea, he does snore, stop breathing, and breath in a really constricted way at night--enough so that I wake suddenly aware that he is not breathing and jostle him and he takes a big breath.  He also has recurring ear infections and is scheduled for a mastoidectomy next week, but the CT scan showed no spreading of the ear infection or erosion of the bones that would suggest any correlation to the seizures.  We have recently found that two of our close friends also had adult onset of grand mal seizures, and like my husband, only in their sleep.  One was diagnosed first with epilepsy, but then changed to sleep disorder.  I wonder if my husband has been having smaller seizures before this, in his sleep, but we do not know.   He used to be a regular pothead, and drank a lot, though he does not drink hardly at all for the last few years.  However, I have read that even one or two drinks can trigger a seizure in someone who has any history of heavy drinking, as the brain chemistry is all set on withdrawals, even if the person was not considered an alcoholic.  ANd as for pot--does anyone really know how it affects the neurotransmitters?  It seems that in a healthy person, long-term frequent use of pot makes them suspeptible to seizures and over time greatly increases the likelihood they will develop seizures as the neurological activity in the brain is altered and more unpredictable.  BUt in people who did not use it and who already started having seizures, it seems that medical marijuana might act as an anti-seizure med, perhaps in a homeopathic (like treats like) kind of way and by reducing stress.  Does anyone know more about this?  Our doctor won't even realy discuss it or do the research to give us any answers, but I feel strongly that it is important to know.  Oh, I forgot to mention, my husband's seizures started as partial complex seizures which then rapidly became secondary generalized tonic clonic (grand mal) seizures.

It seems, too, that there IS some residual effects of the seizures, in spite of the fact that the doc said they would not last, and the CT and blood work being normal.  He is more forgetful, started dong this thing with his lips (kind of like the lip-smacking he did while going into and comiing out of the seizures) and seems more aggitated than he used to be.  Have any of you experienced it?  How are all of you doing now?  Please keep writing on this blog if you can, as it is so helpful and supportive of everyone!!

Has anyone tried accupuncture for their seizures or had any luck with that or other therapies?  I would very much appreciate any feedback and discussion from the folks who read this blog.  Thank you all and I am gald this is a here for people to communicate about these matters.

Re: New Here: First Seizure Questions: Adult onset?

Hello, new here.  My younger sister just had a new onset seizure at the age of 27.  Scariest thing I have ever witnessed.  All of these stories sound so eerily familiar.  My sister was under a tremendous amount of stress, not sleeping well, and she has a history of back problems including a recent steroid injection in her back about 6 days before her seizure.  She had 3 grand mal seizures within 5-6 hrs (first one was unwitnessed while she was sleeping and she had bitten her tongue pretty baddly).  I am scared for her and feel teriible that she will most likely lose her license.  She had negative blood work, MRI, and head CT, EEG showed some abnormailites.  Now diagnosed with epilepsy for lack of any cause for the seizures and was started on keppra.  Any advice for a new onset seizure sufferer in adulthood?  

Thanks for all of your stories.....it's nice to hear she is not alone!

Re: New Here: First Seizure Questions: Adult onset?

I'm 55 and I think I had my first sez at 24. I say think because last weekend my wife and I went back home to vist family.My father is dead and my mother is in a home due to dementia.That night we took my sister out to dinner and all of a sudden she starts remembering me having sez at night when I was a kid.Endinding up under the bed screaming and kicking not knowing where I was you know the routine. A word was never said to me so I could tell the doc about it when they got bad at 24.I'm going to call my brother and see what he says.Before I say anything to my doc.Baybe my parents where ashamed of me they never did give any incorgment once we found out.A little old school here?I'm pissed but what good will it do now?

Re: New Here: First Seizure Questions: Adult onset?

Hello, my situation is very similar. Diagnosed same way, after grand mal in morning discovered by husband. However, there was someone around to watch the kids so that was lucky. As far as will there be more?, I had simple/complex after and still. I didn't think I would have anymore grand mals, but after a year (almost to the day) I had another, and a month later, another. But these were classified as "provoked " since I was getting very little sleep with a newborn. If there seems to be no reason for your first seizure I think the doctors always send you away with "it could be your stress threshhold, you might not have anymore"..but if your having the simples now, that's when I was "diagnosed". Didn't drive after the first one for 6 months. After my 2nd and 3rd a year later, I chose not to drive until they were under control, but also thought I was not allowed. But, recently at my neuro's appt. He said I could've been driving all that time since it was "provoked" . The doctors always seem to give mixed messages, and contradict themselves. I think many of us with epilepsy have to figure alot out ourselves. Not much info is given via dr.s. Atleast that's how I felt, sent out the door with this huge new thing to wrap my head around, filled with worry and uncertainty, insecurities, fear...etc.

Hang in there. Do some more reading. Ask lots of questions, even when dr. seems extremely disinterested.

Thats all I can offer. Don't have any info on sleep apnea and such. -k8

Re: New Here: First Seizure Questions: Adult onset?

Hey everyone.  I am 23 years old and I had my first seizure on June 25, 2007 (I think).  I was home alone, and I found myself acting very strange all of the sudden and feeling quite wierd.  I was doing things that just didn't make sense and I don't know why.  The man I was dating at the time came home to find me still acting a little strange.  He was a bit worried so he took me to the Emergency Room where they ran test after test after test.  Each and every single one came out just fine.  Nothing at all was abnormal.

My second was July 26, 2008; almost exactly a year later.  This one was caught on camera in my office.  I, again, started to feel wierd.  So I sat back in my chair at my desk.  The next thing I know, I woke up in one of the tanning beds drizzled with blood.  I went back into my office and called my boss and told her I didn't know what happened and that I'd woken up in the tanning bed covered in blood.  She told me to sit tight and she'd be right here.  She took me to the ER, but not before she had to pull over twice so I could throw up.  My parents arrived at the hospital with me, so my boss left to come back to the office to watch the cameras.  She called me and told me that I'd fallen out of the chair and had a seizure.  I was stunned.  I couldn't believe it.  She said I'd gotten up from the ground after I'd stopped seizing and stumbled into the tanning bed.  I don't remember any of it.  Every single test, again, was perfectly normal.  The blood work, EKG, EEG, CT Scan, etc. everything was just as it should be. 

Just a couple days ago (Monday, May 18th 2009), I had yet another one.  This time, thank goodness, I'd been in the middle of a conversation with a friend.  The last thing I remember is telling him that I felt really wierd all of the sudden.  Not 30 seconds later, I hit the floor and began seizing violently.  He immediately called for an ambulance and they transported me to the ER.  And once again, every test was just as it should be. 

I don't know what to think of all this.  I'm not going through withdrawls from drugs or alcohol.  I haven't had any major life changing events (other than the seizures) to disrupt my life.  I wasn't in a car accident.  I haven't been struck in the head (or anywhere for that matter)...  I don't know why this is happening.  Anybody have any insight? 

Re: New Here: First Seizure Questions: Adult onset?

Your story sounds pretty similar to ours. I woke up one morning to banging in the other room. Found my wife have a tonic clonic on the ground and I had no clue what was happening. I called 911 and they took her to the ER.

After a bunch of tests (MRI was the main one that found it) she was diagnosed with periventricular heterotopia (PH) on the right ventricle only which can cause seizures. Her first seizure ever was last month and she is 26 so she also has adult onset. I don't think adult onset is that uncommon. Supposedly PH usually starts causing seizures in the teenage years.

Doc has started her on Lamictal and Keppra and she has been seizure free for the last month so that is good. We are trying to get at least 8 hours of sleep a night and are not drinking much alcohol at all.

Just know you are not alone in what you are going through. This is a great forum to learn about epilepsy.