The long story of why I'm here

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So, after lurking for days, I feel like I owe you guys a little explanation. Let me warn you now, brevity is not my strong suit - sorry. You might want to sit down and grab a snack :pop:
OK, so, if you're still with me, that's a good sign. Back in 2003 I had an episode of weird behavior, totally unlike myself. I was a straight A nursing student at the time, married with 1 son. I've struggled with depression pretty much all my life, and I have diabetes, but that's about it for major issues. This behavior occured right after starting a new treatment for the depression. The doc I saw at the time thought it could have actually been a seizure, something I'd never had before and have no family history of (that I know of, there are some gaps on my father's side). So I had an EEG, it was "abnormal". I didn't get a copy of the report, (something I always do now), but it mentioned the L temporal lobe. I was unconvinced. I had the EEG repeated at the local hospital - showed the same thing. I went to see a neurologist who put me on Trileptal, "as a precaution", she said. As I'd never had any typical seizure symptoms, and nothing since that one episode.
Maybe about 6 months to a year later, I saw another doc. When I explained why I was on the Trileptal, he asked a lot of questions etc. I'd still had not so much as a twitch at that point, and he thought the behavior had actually been an episode of mania brought on by the new depression Tx, which I guess has been known to happen. I had stopped the Tx shortly after the episode due to other side effects anyways. He said that if he brought in 10 "normal" people off the street, who had never had seizures in their life, and did an EEG on them, about half would be "abnormal" in some way. We stopped the trileptal.

Flash forward to this March, 6 years later. I'm still married, have 2 more sons, working as a nurse on the nightshift. I'vd been having some trouble sleeping during the days, and this 1 particular day, I had actually slept the night before, but was way behind on sleep the few days before that. My oldest had a dentist appointment at 8AM. On the way home, I didn't feel particularly sleepy or anything, my blood sugar was fine- everything seemed fine. Then, the next thing I know I'm in the middle of an intersection w/this big truck coming right at us. My first thought was "why is this guy pulling in front of us?" (He was making a L turn) Then I looked up and saw that we were running through a red light. I managed not to hit him, but scared the crap out of my son, myself and the guy in the truck. We left actual skid marks on the road. Well, my first thought was to just get the Hell out of there, before someone thought I was a drunk driver or something. It didn't start sinking in until we were almost home. I had totally "blanked out". There was no warning, I hadn't fallen asleep, it was just Boom, there we were, like time skipped a beat.

I got pretty scared and upset. The fact that my son had been in the car w/ me was really freaking me out. I had practically forgotten about the EEG and everything from '03, but it all came back to me then. And also the memory of when I rear-ended a car on the highway, totalling my car, while 7 months pregnant w/ my oldest. (this would have been in '01, before the original EEG or anything) I wasn't really hurt, but did start to go into early labor, which they were able to stop at the hospital. The accident never really made sense to me, it was like, one second I'm driving along, the next second there's this car 10 feet in front of me. But it got pretty much written off as "distracted pregnant lady rear-ends someone, happens every day". I did get cited in the accident, but thank God, no one in the other car was hurt. And I was on a nasty stretch of highway, where there's practically an accident every day, so nobody thought much about it. I'll admit, it did nag at me, how the whole thing happened, but I was defensive and even a little embarrassed, I just wanted it to "go away". And it pretty much did. We paid the fine, got a new car, my son was born a couple months later. He had some serious complications at birth and in his first couple months, totally un-related to the accident. There was a time I thought we might lose him, so that was pretty much the only thing on my mind. The accident was all but forgotten.

Until that day last March. I let it all out to my PCP, almost like it was a confession. She pulled up the old EEG on her computer. Then proceeded to tell me I have epilepsy, I need to see a neurologist, and I can't drive for at least 6 months. Just like that. It was like someone pulled the rug out from under my feet. I'm practically a soccer mom here! I'm driving my kids somewhere at least a few times every day! Not to mention that my job is 35 miles away and I work the night shift! There's no public transportation around here either. Then I wasn't even sure if it was SAFE for me to work. My boss took me off the schedule until she got a letter from my PCP, which, thankfully, came in right away. It said I have absence seizures that wouldn't effect patient care, and it was safe to work. Yeah, if I could just GET THERE! My family depends on my income. My husbands job takes up a lot of time but doesn't pay nearly as well as mine.

So, of course, no neurologist can see me until late May at the earliest. I feel like I'm stuck in purgatory here. I'm not even sure I DO have epilepsy, and here's why-
-The EEG says it's in my temporal lobe- but little absence seizures aren't usually a symptom of TLE.
-From the research I've done, I guess it's very rare to have absence seizures in an adult, especially if not accompanied by other types of seizures.
- I've never had anything like a seizure besides these episodes, which are like 6 years apart. Neither my husband, nor anyone else has ever noticed me just staring of
into space for a few seconds ie: having absence seizures.
-Maybe I'm just a bad driver?
Or maybe I'm just in denial. Any thoughts?
 
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Hi Crystalblue, I'm sorry it took so long for them to diagnose properly. Epilepsy isn't black & white, you can read as many books, & speak to as many consultants as you can find, however, many people still find that their epilepsy doesn't fit in with the 'norm'.
I think most people doubt their diagnoses, I know I did.
I was a student nurse when I was diagnosed & I know working in a hospital can be quite hard, & people will always question whether you are capable. Don't let them question yourself, you are more than capable, don't ever forget that!!!
You will feel much better once you speak to your neuro I'm sure.
Hope you manage to get some answers to your questions.


Oh & I'm sure your a brilliant driver! :woot:
 
Yes, I agree with Becci90. Epilepsy isnt all cut and dry, generic, one size fits all and it does NOT fit into a neatly generally labeled box tied with a pretty bow.

Everyone one is different but you will learn to see the commonalitys with us too. and they may be surprisingly similar.
 
Hey Crystalblue, welcome to CWE!

With epilepsy there's very little that's predictable. (For instance, many people get "juvenile myoclonic epilepsy" when they are adults.) So it's hard to know whether you've experienced an isolated incident, or something that might be escalating. For that reason cutting out driving would be the safest choice until you get more info from your neurologist.

Have you been placed on any medication? Were you given any treatment instructions by your pcp? Have you considered what triggers might be involved? (Since you've been working the nightshift, I would guess fatigue might play a role). There are things you can do to be proactive while waiting to see the neurologist. And keep agitating for an earlier appointment -- sometimes you can get in when there's a cancellation.

I hope you get some answers soon.

Best,
Nakamova
 
Welcome to CWE Crystalblue

What I've read about absence seizures -- the reason why they are rare in adults is because true absence seizures are a type of generalized seizure, where the whole brain experiences activity. In adults generalized seizures tend to show up as tonic-clonics.

Complex partial seizures can mimic absence seizures by causing loss of awareness, memory, or an inability to interact with others, but the activity is limited to part of the brain, like the temporal lobe. Chances are, if you are experiencing space-out seizures, they're of the complex partial variety.

Does that clear up some of your confusion about TLE and absence seizures?
 
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Welcome CB

You've pretty well described my seizures.

I've never heard that adults rarely get absence seizures but I get them quite frequently, except I don't know that I've had them. I need someone else to tell me what I've done that I don't remember doing or I'll come out of it & have walked past something that was way up ahead of me when I last saw it (supposedly) 2 seconds ago.
 
Hi. Thanks for the advice. Yes, I have cut out driving since the near miss. I am loath to do it, but could never forgive myself if I hurt anyone out there on the road. My PCP did not start me on any meds, she just gave me an information sheet, told me a neurologist would be getting in touch w/ me and sent me on my way. Thanks so much for listening to me. You guys are great!
 
Hi, Crystal,

Your journey through doctor-land is a familiar one. Misdiagnosis, blind alleys, wrong meds, waiting for doctors..... I've gone through the same things. I'm finally in with an epilepsy specialist who really knows his stuff. I get a little frustrated sometimes because he's far too busy and it's hard to get the help I need from him sometimes, but overall things are much better for me now than before I started seeing him.

My long story: First my primary care doc said I needed to see a neurologist. She called the neurologists office and got my appointment moved up from a month and a half away, to about 2 weeks away. That neurologist didn't work out - gross misdiagnosis (and gross incompetence, in my opinion). '

I went for a second opinion to another general neurologist and again my pcp got it moved up. THAT general neurologist recognized the seizures, and referred me to a seizure specialist, who is my current epi. My epi is a doc it usually takes months to get in to see, but that second general neurologist called the epi's office and had my appointment expedited. My first appointment with the epi was in 3 weeks. My epi knew inside of 5 minutes exactly what was wrong with me, and had a plan in place before I left. Whew! It hasn't been a short road to getting the right drug, but I'm on my way (I hope!)

Your primary care physician may be willing to do the same and make a call to the neurologist and get your appointment moved up. It's worth a shot, anyway.
 
OH my dear how I feel for you and all that you are struggling with.

Guess what? My husband had absence seizures as an adult..along with complex partials and mostly generalized clonic tonic.

Oddly we were discussing getting marriage on the couch when I asked him what he thought..and he turned his head.. and was still for awhile..staring.. and I took it as it was NOT interested in my question. Then later I could tell by his eyes he was having a seizure.

Now..fast forward.. and I was just diagnosed with temporal lobe seizures.. as I have lesions on both temp lobes. I too was driving and got lost.. time was distorted ..then felt weird all night until I just crashed and fell asleep. I woke up thinking it was morning and it was only a few hours later..still dazed and confused.

When I met with the neuro I swear in one breath..one sentence he told me not only do I have temporal lobe seizures I would NOT be a candidate for BRAIN surgery.. I should not be driving.. and get his.. I have MS!!!

So now I am not driving.. as its a criminal offense if you are involved in an accident and I did not want to risk a charge. I drive for my job as a hospice social worker traveling from patient to patient.

My husband also got worse.. had 2 brain surgeries and the VNS.

Who knew.. we'd BOTH end up with epilepsy~!

Hope you get the answers.. and in the mean time.. know you are not alone.. and remember we care ok hon??

Warmly, Jan
 
OH my dear how I feel for you and all that you are struggling with.

Guess what? My husband had absence seizures as an adult..along with complex partials and mostly generalized clonic tonic.

Oddly we were discussing getting marriage on the couch when I asked him what he thought..and he turned his head.. and was still for awhile..staring.. and I took it as it was NOT interested in my question. Then later I could tell by his eyes he was having a seizure.

Now..fast forward.. and I was just diagnosed with temporal lobe seizures.. as I have lesions on both temp lobes. I too was driving and got lost.. time was distorted ..then felt weird all night until I just crashed and fell asleep. I woke up thinking it was morning and it was only a few hours later..still dazed and confused.

When I met with the neuro I swear in one breath..one sentence he told me not only do I have temporal lobe seizures I would NOT be a candidate for BRAIN surgery.. I should not be driving.. and get his.. I have MS!!!

So now I am not driving.. as its a criminal offense if you are involved in an accident and I did not want to risk a charge. I drive for my job as a hospice social worker traveling from patient to patient.

My husband also got worse.. had 2 brain surgeries and the VNS.

Who knew.. we'd BOTH end up with epilepsy~!

Hope you get the answers.. and in the mean time.. know you are not alone.. and remember we care ok hon??

Warmly, Jan
Wow. I'm so sorry all that got thrown at you like that. God...
I guess you and your husband were really made for eachother though. At least you'll never have to deal with him not "getting" epilepsy, or how it can make you feel. That's cool that you're a hospice social worker. I'm a hospice nurse. Thank God I don't have to travel from patient to patient though. I work in our inpatient unit. It's actually acute care for people on our hospice service. So I get to do hospital level work, withou actually having to work in the hospital. It's the best nursing job I've ever had. And boy do we appreciate our social workers!
Thanks so much for listening to my tale of woe. It really dose make a difference knowing I'm not alone. I'll keep you in my thoughts, and your hubby too!
 
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