Complex Partial seizures. Deja vu then blackout.

morkys

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My frequency of blackouts is a bit random. The first time I really blacked out in my life was some time in March or April 2011. About a year later in 2012 my next blackout was in the week of March 28th, then one later in the summer and my last 100% for sure known blackout was Aug 25, 2012. I may have had an episode in December 2012 but I don't know for sure. If it was, it was brief and I was sitting leaned back in a chair.

So how frequent have you had episodes and how long have you gone between episodes?

Have you been on medication? Which medication made you feel unsafe to drive?

Are you doing any other treatment to prevent the seizures instead of medication?
 
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jyearta

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I just wanted to share my exper.----being that taking meds. is concerning you.

I had seizures all my life, was not diag. until I was 18 that is when I was put on meds.

My seizures were mild, they progressed over the years, I had my one and only grand Mal the night before my husband got me to a Dr.

I telling you this cause I'm concerned that your seizures will too increase in the amt. intensity and so on.
 
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Hey morkys,

My frequency has been pretty random. I started having seizures in 1985, 4 of them in the span of 5-6months. Then they stopped. Nothing, not a peep or anything until 2008. Had 3 or 4 in a month, then nothing until 2010 while I was on anti-dpressants (fun story - should share sometime). I had 3 or 4 in the span of a month. Once I was off those, I was clear until Apr 2012 when I was minding my own business driving home and I had a big one where I blacked out. My truck was not happy that day.

I had another one in May of 2012 that we think was chemically induced. I then didn't have anything going on until just three weeks ago, I was in the doctors office relaying my entire story and how frustrated I was -- Had a seizure right there. Was totally weird. Haven't had one since. I'm rethinking medication since I had the one 3 weeks ago...which reset my clock...again. However I'm due to see a new Neurologist on the 15th. So I'll see what he says.

So far I'm not taking anything because they are so spread out it, but that could change after my appointment this Friday.

Medication I tried that made me feel unsafe to drive was Kepprea at 1000Mg a day. Oye felt like I was coming off the tail end of a night of bar hopping.
Another medication I tried was Lamictal. That had me raging like Arnold at a bench press competition. --I'm hearing his voice now..."RUN! Get to the choppa!"

Anyway, I'm not closed off to medication, I'm just cautious because of the reactions I had. To me right now, it's just feels like it's too much side effect issues to gain back driving when you look at how spaced out my episodes are. Also if the side effects can't allow me to drive safely anyway; I'll deal with Chevro-leggin it around town.

I could totally be held up in ego and pride, I realize that, but damn-it I just want a doc to look at that and go, "yeah that makes total sense." Just so I know I'm not crazy.
 

morkys

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I just wanted to share my exper.----being that taking meds. is concerning you.

I had seizures all my life, was not diag. until I was 18 that is when I was put on meds.

My seizures were mild, they progressed over the years, I had my one and only grand Mal the night before my husband got me to a Dr.

I telling you this cause I'm concerned that your seizures will too increase in the amt. intensity and so on.
My seizures could increase in frequency AND severity over time. I am aware of that, although I didn't think it was likely. Thank-you for pointing out the possibility. It is interesting that I didn't have a seizure until I was 41, so that is a little odd. I know somebody here at my work who had grand mal at 16-17. Been on meds since that time period and no seizures in 15 years.

Hey morkys,

My frequency has been pretty random. I started having seizures in 1985, 4 of them in the span of 5-6months. Then they stopped. Nothing, not a peep or anything until 2008. Had 3 or 4 in a month, then nothing until 2010 while I was on anti-dpressants (fun story - should share sometime). I had 3 or 4 in the span of a month. Once I was off those, I was clear until Apr 2012 when I was minding my own business driving home and I had a big one where I blacked out. My truck was not happy that day.

I had another one in May of 2012 that we think was chemically induced. I then didn't have anything going on until just three weeks ago, I was in the doctors office relaying my entire story and how frustrated I was -- Had a seizure right there. Was totally weird. Haven't had one since. I'm rethinking medication since I had the one 3 weeks ago...which reset my clock...again. However I'm due to see a new Neurologist on the 15th. So I'll see what he says.

So far I'm not taking anything because they are so spread out it, but that could change after my appointment this Friday.

Medication I tried that made me feel unsafe to drive was Kepprea at 1000Mg a day. Oye felt like I was coming off the tail end of a night of bar hopping.
Another medication I tried was Lamictal. That had me raging like Arnold at a bench press competition. --I'm hearing his voice now..."RUN! Get to the choppa!"

Anyway, I'm not closed off to medication, I'm just cautious because of the reactions I had. To me right now, it's just feels like it's too much side effect issues to gain back driving when you look at how spaced out my episodes are. Also if the side effects can't allow me to drive safely anyway; I'll deal with Chevro-leggin it around town.

I could totally be held up in ego and pride, I realize that, but damn-it I just want a doc to look at that and go, "yeah that makes total sense." Just so I know I'm not crazy.
I see your situation is anything but simple too. In my case, I would have to say that I am probably at risk of falling into depression or manic depression. I have been lucky most of my life avoiding depression. Also dealing with a back injury that is affecting my work abilities. So much to deal with. It's all very frustrating but I will wade through the stuff. There is an Eplilepsy Support group in Toronto and I will likely join and see what I can find out there.

I am seriously considering going on medication. I will almost certainly go on meds sooner or later, I just want a bit better diagnosis and understanding of my particular situation. I hope that a better understanding of my particular situation could result in more accurate prescribing of meds. I realize however that it may just be a try and see what works type of deal. Frustrating. I may ask to see another neurologist.
 
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I surrendered my license do to epilepsy. I totalled 2 vehicles due to seizures, and no one but the vehicles were hurt. I wouldn't have been able to cope if I hurt or killed someone. The crappy part is that you will never know when or where you will have one. I guess you just have to decide what you need to do. Stay tuff -Jeff
 

morkys

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Yep. The main problem is that since my seizures are so infrequent, I could literally go years without driving since I could be on a medication and not have a seizure for months. Then if I have a seizure after months of no episodes, and the medication I am on does not work, then the clock resets again, and maybe we try another medication. Could go on for a long time. I am hoping for a little more control on the ability to reduce the incidence of seizures. Again, I imagine there isn't alot I can do except try meds and see what happens. I have not been driving since the first week of October 2012 as my licence was suspended. I won't drive again until given my licence back. If you have a licence suspended for criminal reasons, you must surrender it. I only keep my licence for identification. I was told by the Ontario Ministry of Transportation that it is fine to keep it if it's a medical suspension, but it's not valid for driving, and I am to follow the directive not to drive, which I am doing.
 
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I feel your pain Morkys because I'm in the same boat. I keep asking my Neuro's this question, "How do we know it's the meds working and not just time? Since they are so spread out, doesn't it make sense to make adjustments to the driving restriction rather than the meds?" Those two questions trip them up. Of course there is no way to know with frequencies that span years. You almost need a time machine.

I of course do not want to cause accidents or, heaven forbid, fatalities; but it's got to come down to some understanding by the Neuro that when you say, "no driving for x months/years..." when your frequency is 1 event every 2 or more years; it's going to cause some heart ache on the patient functioning at everyday tasks.

I'll step off the soapbox now. =) Sorry, I just get frustrated trying to find common ground with Neuro's that won't listen.
 

morkys

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I had a seizure on Wednesday at work. Complex partial without loss of consciousness. I know it was a complex partial because it affected my memory. First time that has happened. Previous complex partials were blackouts. Going to see my family doctor and start talking about this again. I figure though that my neurologist should prescribe, unless my family doctor will communicate with neuro while we try meds.
 

morkys

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I have been prescribed Tegretol. I start taking it tomorrow. I read this on the Health Canada website:

March 17, 2008

Dear Health Care Professional:

Subject: New Safety Information for the anti-epileptic drug TEGRETOL*
Novartis Pharmaceuticals Canada Inc., following discussion with Health Canada, would like to inform you about new safety information in the Product Monograph for TEGRETOL* (carbamazepine).

The TEGRETOL* Product Monograph has been revised to include the following safety information in the WARNINGS section:

Serious and sometimes fatal dermatologic reactions, including Toxic Epidermal Necrolysis (TEN) and Stevens-Johnson Syndrome (SJS), have been reported with TEGRETOL*. Should signs and symptoms suggest a serious skin reaction such as SJS or TEN, TEGRETOL* should be withdrawn at once and alternative therapy should be considered.

The risk of SJS and TEN exists in all patients, but these reactions are generally very rare. However, in some Asian countries the risk is estimated to be approximately 10 times higher than in Western countries.

In studies that included small samples of patients of Han Chinese ancestry a strong association was found between the risk of developing SJS/TEN and the presence of HLA-B*1502, an inherited allelic variant of the HLA-B gene.

The HLA-B*1502 allele is found almost exclusively in individuals with ancestry across broad areas of Asia. Therefore, physicians should consider HLA-B*1502 genotyping as a screening tool in genetically at-risk patients. HLA-B*1502 genotyping must never substitute for appropriate clinical vigilance and patient management.

Until further information is available, the use of TEGRETOL* and other anti-epileptic drugs associated with SJS/TEN should be avoided in patients who test positive for the HLA-B*1502 allele.Retrospective case-control studies in patients of Han Chinese ancestry have shown a strong association between the development of these severe skin reactions and the presence of HLA-B*1502, an inherited allelic variant of the HLA-B gene. The prevalence of this allele is negligible in Western Caucasian populations but is approximately 5-10% in Han Chinese, and ranges from <1% to over 15% in other Asian ethnic populations.
I am Caucasian.
 
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My first experience with this was in 2005 on a blisteringly hot summer day. I was working outside on a balcony of a building where we were installing solar panels. I was on a scaffold and all of a sudden, I felt like I was daydreaming un-intentionally. I was remembering or daydreaming without wanting to. It had a deja vu quality to it. I got down off the scaffold and sat down. I went downstairs in the building and had diarhea and I through up. I went back up stairs and drank lots of water. Coworkers and I suspected heat stroke or food poisoning. I worked the rest of the day but didn't do anything significantly physically exerting.

Various times in 2009 -2011 I felt deja vu while cycling or driving. Instead of passing out, the feeling increased to a great degree and became uncomfortable. I did not pass out or black out.

In Feb or March 2011 I was in the shower and anxious thinking about rushing to a city council meeting, and I was also under other stress financially etc. I felt a strong deja vu and woke up moments later at the bottom of the shower. Scraped chest and fat lip. I broke off the diverter valve (the knob you pull out to divert water from the bath tap to the shower head).

March 29 2012 I was at work standing at a counter looking at some paperwork and had the deja vu feeling and woke up moments later on the floor. I hit my head on a filing cabinet.

One day later that summer I was sitting on the toilet. Felt the feeling of deja vu. Got off the toilet and sat against the wall. Woke up fallen sideways, glasses fell off.

Aug 25 at around 10-11 am I was sitting on the toilet and felt the deja vu. Went to get up to go lie down and moments later I woke up with bent scratched glasses and a black eye.

Possible episode Dec 21 leaning back in a chair.

So far, all tests regarding heart are fine. All EEG and MRI, CAT scan etc are negative for eplilepsy. The neurologist and I both feel that, despite negative tests, I probably have eplilepsy and am experiencing Complex Partial Seizures.

Going to see family doctor and look into medication. I need to drive and do physical activities at work so it's affecting my life. Not sure what I will do from here on out. Going to look at second opinion and other tests but likely have to seriously consider medication if I want to drive. Either that or significant changes in diet.

Anybody else experience seizures the way I describe? What have you done?
Deja vu or out of body feelings is what I describe my feeling leading up to my 3 previous episodes. It's been 2 months since my last episode and I have been skiing, playing hockey, snowmobiling put not driving. Pissed off over not being able to drive, I have a plumbing business and I have to pay someone to drive me to jobs.
Here is my story:
First episode 5/09 misdiagnosed as heart failure gave me a pacemaker, 8/10 second episode no idea it was epilepsy several EEG etc, third episode 12/12 brought to ICU at hospital with status tonic clonic seizures still nothing showed up on EEGs. Prescribed Dilantin and released, not sure I'm being treated properly getting second opinion from different Neuroligist on 3/13.
 
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I totally agree we do not want to hurt anyone with are decision to drive but I see so many people on the road that cant drive for no medical reason that still do. Another big factor that deters me is the liability that I would be left with and the harm this would cause my family. Maybe we can get some type of device that would monitor are state of conciseness like they already have for sleepy drivers.
Good luck.
 

morkys

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Anybody else here on Tegretol? I guess I should re-read the posts...lol. My neurologist and fam doctor have started me two weeks ago and I am on my way up to 400 mg a day. From looking at other folks are the interweebs...it seems like a low overall dose.
 

qtowngirl

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hey morkys,
yes that it is a fairly low dose for tegretol... but everyone's different. it's a matter of finding the dose that works for you. it's common to play around with doseages until you feel best, many times a high doseage is too much and the side effects aren't liveable. for ex: i got out of the surgery unit with a prescription for vimpat 200 2x. not happening! i have found that anything over 100 2x is too much. causes a bit of vertigo, spaciness, eyes go glassy and vision is affected. staying at this dose i feel better and my partials are still lessened. it's all a matter of finding what you're comfortable with.
i have been on tegretol (carbamazepine) for over nine years, no problems whatsoever. having surgery this year and need to stay on at least one drug, out of four i've tried i'm thinking tegretol will be my choice.
note tho: it has concerns with bone thinning so if you go on it, be sure to have a bone scan done every couple of years. i did at year 8 and i was fine. it's a bonus too, not everyone gets to find out what shape their bones are in! was a relief in my 30's.
 

morkys

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Fair enough. I guess I'll take it a step at a time. I had my first two week blood test on Friday and see the doctor today. Do you know what your blood type is? I am type O.
 

EdJudy

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I get the same thing

About 15 years ago I was setting at a light. I told my wife that there was a wreck up the road. I was leaning to the left looking out the windshield. I got this overwhelming deja vu feeling. Then I awoke to my wife yelling at me. I was a little confused and sweating. So I drove to the hospital. I am sure that wasn't a good idea now, but I was still in better shape than she was. I went through several months of test from EKGs, Heart, Sugar, and several more. They found nothing but a few thousand dollars a piece. One doc told me it was stress from work to find a new job. So I did, and it wasn't that.
I was lucky enough that the woman doing my physical for my new job was a chiropractor. She happened to ask me if I had ever passed out. I walked her through the stories of the dozens of times I had passed out. She told me if I wanted to fix the problem come see her. I did a few days later when it happened again. She found the second and third disc down in my neck was twisted. She adjusted my neck several times and the more she adjusted it the less it happened. I try to go see her every few months now. The last few times I only got the deja vu without passing out. The last time I passed out was two years ago.
So you may want to have your back and neck checked.
Hope this helps
God Bless
Ed
 

morkys

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I've had mri and ct scan for back and brain and nothing like that showed up. I'll keep what you're saying in mind, but, I have to ask, is there any event or disease that you can attribute to causing your 2nd and 3rd vertebrae to be "twisted"? I've been on tegretol for over a year now and no seizures. Closest I have come is I have an actual de ja vu which scares or worries me, but it doesn't "feel" like the seizure deja vu, its an actual deja vu. I am actually doing something that reminds me of doing it in the past, but I don't feel the aura. I have low back problems that I am tending to. Hope you keep feeling better.
 

Ventman

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My first experience with this was in 2005 on a blisteringly hot summer day. I was working outside on a balcony of a building where we were installing solar panels. I was on a scaffold and all of a sudden, I felt like I was daydreaming un-intentionally. I was remembering or daydreaming without wanting to. It had a deja vu quality to it. I got down off the scaffold and sat down. I went downstairs in the building and had diarhea and I through up. I went back up stairs and drank lots of water. Coworkers and I suspected heat stroke or food poisoning. I worked the rest of the day but didn't do anything significantly physically exerting.

Various times in 2009 -2011 I felt deja vu while cycling or driving. Instead of passing out, the feeling increased to a great degree and became uncomfortable. I did not pass out or black out.

In Feb or March 2011 I was in the shower and anxious thinking about rushing to a city council meeting, and I was also under other stress financially etc. I felt a strong deja vu and woke up moments later at the bottom of the shower. Scraped chest and fat lip. I broke off the diverter valve (the knob you pull out to divert water from the bath tap to the shower head).

March 29 2012 I was at work standing at a counter looking at some paperwork and had the deja vu feeling and woke up moments later on the floor. I hit my head on a filing cabinet.

One day later that summer I was sitting on the toilet. Felt the feeling of deja vu. Got off the toilet and sat against the wall. Woke up fallen sideways, glasses fell off.

Aug 25 at around 10-11 am I was sitting on the toilet and felt the deja vu. Went to get up to go lie down and moments later I woke up with bent scratched glasses and a black eye.

Possible episode Dec 21 leaning back in a chair.

So far, all tests regarding heart are fine. All EEG and MRI, CAT scan etc are negative for eplilepsy. The neurologist and I both feel that, despite negative tests, I probably have eplilepsy and am experiencing Complex Partial Seizures.

Going to see family doctor and look into medication. I need to drive and do physical activities at work so it's affecting my life. Not sure what I will do from here on out. Going to look at second opinion and other tests but likely have to seriously consider medication if I want to drive. Either that or significant changes in diet.

Anybody else experience seizures the way I describe? What have you done?
Started having my deja guys seizures in 2010. The first one while driving, in the year following I totaled our car and thought we had better find out what was up. I have a strong deja vu, some dizzyness , some nausea then black out. Doctor put me on 500mg. Dilantin. Starting to have small breakthrough episodes in the mornings. My doctor has added Levetiracetam 500mg twice daily. Hoping to cut down on the breakthrough episodes.
 
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