diagnosed with epilepsy in 2008 at age 38

[petero]

after two grand mals, one at work, one w my folks and brother

since then I'd guess I've had maybe a handful or two of what I'd now recognize as major seizure events
I got sober in 2003 which may have been masking some sleep seizures, what I then just assumed were hangovers considering I now still have a few hangover quality events
I've never had the bitten tongue, blood in the mouth thing... but have had severe head and body aches
I've had some issues coping with the possibility I've had epilepsy for a long time and was never diagnosed
on diagnosis I was prescribed 500mg of Dilantin which I've taken since
and recently I entered into a state sponsored hospital system which is low-cost because I've never had health insurance
upon getting into this system I was prescribed also levetiracetam, which had a bad effect on me
it may have been responsible in part for a severe seizure episode that wound me up in the ER after a substantial "hangover" sleep seizure

can anyone acknowledge sleep seizures as having this hangover sort of effect? it is definitely not as funny as these "Hangover" movies purport
I've never participated in a sleep study...

at the most recent ER trip I also recall very bad events, in and out of consciousness, they said I was having absence seizures, a psychotic seizure period...
all I remember is it being probably, well yes definitely, the most horrifying experience of my life
I recall interactions with hospital staff, doctors, a police officer, some colors, a black and ultraviolet room, being put under some sort of hypnosis (?), searing pain like I've never known to exist (they gave me morphine it turns out- although in retrospect my giving consent to this is still not clear)
my mom was with me, advised my going to the ER and was with me the entire time except for the ambulance trip and during a 20 minute span during check-in
my timeline of events during about 8 hours total is not clear at all
I recall maybe ...10 to 20, 30, minutes total during this time
there's no way to tell because I recall these blocks of events which each took I don't know how long
but these blocks of events are very clear
and will probably haunt me for the rest of my life

in retrospect, being in a post-ictal and I guess seizure cluster state, I can't imagine how it could be rationalized that an ER would be the best place for me - noise, lights... (this is the city hospital, weekend, very busy, noisy, clamorous)

has anyone else had nightmarish recollections during seizures?
I remember the first two grand mal episodes that led to my diagnosis and these resulted in quite restful sleep (first at home, second at a small county hospital room bed and then home to sleep)
during this ER trip I recall many interactions with people as I stated

since then my life has been a nightmare
I've had severe paranoia, being shuffled through a clumsy (to say the least) hospital system to get my membership in order, I've seen hospital staff and doctors around town (I think? although I'm quite sure) which frightens me
it feels like they've been monitoring me based on these invasive interactions during my seizure clusters and post-ictal state
I try to rationalize that they live here too, and that I'm bound to run into some of these people, but this seems to be more than just happenstance
and why would it evoke fear and panic?
I've felt that they tinkered around with something at the ER and that something went very wrong
but I can not confirm anything through my mom nor through hospital records

I believe it would be comfortable approaching some of the people/staff/doctors (?) I've seen around town if running into them didn't feel so contrived, and if I had something more to confirm this
I'm very shy and not very social either, making it hard for me to approach people anyway - (maybe social shyness is a result of undiagnosed epilepsy while growing up?)
I feel like it would make me look like a nutcase "hi- do you work at the hospital? I have epilepsy - did you treat me while I was in the ER?"
nutcase
people don't understand epilepsy anyway
I don't understand epilepsy

are these things common?
post-ictal hallucinations? medical interactions during post-ictal state? during seizure clusters?

I'm thinking that once I got to the ER the noise and clamor made me freak out
I remember some timespans where I was just ... utterly lost ... I couldn't see anything but white pain - screeching noises - voices from I don't know where - 'bubble people' doctors/staff who were interacting with me
I rarely recall my mom being there
I've suspected that they f***ed up a seizure cycle and it has left me in some sort of limbo since
I'm prestty certain I had another sleep seizure a couple weeks ago now, which, after the initial pain and recovery, did help me feel a little better
but not much and not to any enduring span

anyone?
I'll probably add more to this later to clarify things but I just want to post this for now

 

[Nakamova]

Hi petox1970, welcome to CWE!

It sounds like you've been through some terrible experiences and are still suffering from the after-effects. Here's my take on some of the things you mention: I very much doubt that the doctors and hospital staff you see around town are monitoring you. Trust me, those people are overworked as it is, and they are not going go out their way to keep an eye on you. You mention having severe paranoia, and think that it is the paranoia talking here. Paranoia and other symptoms you mention -- hallucinations, fear, anxiety are symptoms of temporal lobe epilepsy. Do you know if that's been part of your diagnosis?

If you do have TLE, and aren't being properly treated, it's possible for the symptoms to progress. I'm sorry that the Keppra didn't work out for you -- it seems to be problematic for many people, especially in the way it affects mood. Is the Dilantin helping? If you are experiencing nocturnal seizures and paranoia then it may not be ideal -- you should schedule an appointment with your neurologist to re-evaluate treatment.

I hope you can feel more confident about your care. I know ERs can be horrible places, and not every emergency responder is trained in epilepsy. I hope the nightmarish experience you recall is just that -- a nightmare. For you own peace of mind you might want to ask the hospital for a transcript of the care you received. In addition, ask you mother for her memory of the time you spent there -- it may help give you answers and some perspective.

Best,
Nakamova

 

[bazpa]

petox1970

I don't know too much about all this, but I will say after three and a half years of afeeling drained, and waking up feeling like I was up all night and hit by a bus, I finally got my answer-epilepsy. I took a 25 minute drive on the freeway on my way to work. The last thing I remember was seeing 3 cars coming at me. I had never had this symptom before, but always knew when I was going to have a episode before, and would pull over. I almost always had this in the morning, and did not know why I woke up so many times at night. Slept through the night for the first time in years the second night I took meds! Anyway, for whatever reason I did not know I needed to pull over. After people calling 911, and finally I did realize I had to pull over, the next thing I knew sirens and flashing light were coming towards me. I only remember bits and pieces of the ordeal, and was too out of it to really be too scared. The next thing I remember is the officer peering through my window. I rolled down my window, and he yelled at me, asking if I realized how many 911 calls had been made. I was having such a hard time thinking, and talking I think I just shook my head no. I was then told to turn my car off, take out the keys and give them to him. It seems like a dream, and I was having such a hard time just turning my car off, and such it seemed like it took me a long time. Then I was asked if I had been drinking-had been smoking weed ect. I find this odd now as I was dressed up, hair done, fresh make up ect, and I can smell a beer or pot on somebody 20ft away! They looked in my purse and asked me what several things were. I pretty much think I was about to be arrested, when my eyes rolled back in my head, and they called paramedics, and my husband and daughter. They were being so mean, that my daughter told them to leave my mom alone-that something was wrong. After the paramedics came I refused medical treatment, and have no idea why. I swore I did not sign anything, but found the medical release a week later in my car. I then insisted that my family take me to work(I work with family), but could not function. They were trying to touch me and get me to sit down, which agitated me, and I yelled at them. (I do not remember this) I finally agreed to go home. They then got me into my Neurologist. I slept for hours, remember very little about the day, and the whole thing felt like a dream. After seeing the doctor, I realized that these were happening every night, and thats why I would find myself outside at 3 in the morning and not remembering how I got there. I had 4 weeks of feeling wonderful-like I came out of a nightmare, but then hives, seizures, depression, agitation ect with the keppra. They keep increasing, and I keep feeling worse. I think the side effects are worse than the seizures. Yes now that I think about it-waking up after a night of seizures is a lot like a hangover! best of luck

 

[petero]

ya- before being diagnosed once I woke up hunched over in the bathroom with a small pool of blood under my hunched-over head
my CSI-ing and eventual recollection led me to figure I'd needed to go to the bathroom in the middle of the night (which I barely recall other than needing to quickly be awake)
then next thing I knew was opening my eyes to the bloody floor - and I still have a scar above the bridge of my nose from the towel rack
that was really something fun
I'd thought I might have been abducted or something ridiculous - but considering the absurdity of the circumstances...

 

[bazpa]

It is such an odd feeling to have no memory. I am thankful that I do not feel pain! Actually to me, it is like I go away, and nobody-including myself exists. I just don't like the after affects.

 

[petero]

It is such an odd feeling to have no memory. I am thankful that I do not feel pain! Actually to me, it is like I go away, and nobody-including myself exists. I just don't like the after affects.

when I'm at home I'm beginning to somewhat enjoy the aura feelings, or at least to be able to recognize and contemplate these things as an effect of seizures - not so much fun when I'm out somewhere because there's not the same feeling of security