VENT a little

Diseases & Conditions Epilepsy
1
I know everyone is different. But, I have changed meds 3 times in a year. I'm now changing dr's. I don't feel like anything is working for me.
I am constantly tired. I could sleep 70% of the day. I'm dizzy. I'm confused. I've stopped myself from driving because of this so now I'm just sitting at home all day which to me is adding to the sleep. Depression is kicking in. If not already here.
I dont know if it is the meds or if my seizures are coming on full force and making me feel this way. Which is why I'm changing drs.  I'm all kinds of confused on what to do. confused  
Sorry I know this is long. But I was wondering how you stay focused all day. I dont know where I'm going with this. I guess I'm just wanting to know if anyone else is out there like me.
I cant tell the difference between meds and seizures. I dont feel like myself anymore and its very depressing. I just feel so out of it.
I guess I just needed to put this down on "paper".
Thanks guys for letting me vent a little. redface
2
AngelEyes
I can so empathise with your dilemma as a matter of fact I have been on a "epileptic rollercoaster" my self over this past year which has involved med changes, increased seizure activities, depression and anxiety (on massive scales which were new to me) all of which have resulted in three months off from work (I am back now but it has been rough). The dizziness is a killer the worst part is walking into door jams (that is something that I am very good at) those things hurt and as far as the sleepiness is concerned my neuro keeps saying that it is a combination of seizure meds which I was on very high doses and depression. I would like to lend a bit of advice to you....you are not alone now it may seem like you are at times but you arent. This site will help you take in information from people that have been there and if they havent been there then there are a whole bunch of people that will listen but please vent it will only help you.
Oh by the way I found this site about 8months ago (and I was having a very bad time I just simply did not feel right) and my first post was something to the effect of what you have delivered here.
I shook alot (my nerves were shot), I had very very bad headaches, blurred vision, seizures (I have grand mals) but you know I got up out of bed everyday at my normal time unless I was post ectal of course (when 7:00am rolled around I was up I did not always stay up but I was up otherwise I just wanted to sleep all the time) and I tried to maintain my schedule as close to normal as I could and I believe that helped a lot. Since I am not driving at the moment I worked myself up to getting outside, then eventually walking someplace and then riding a bike which got me out of the house and built my confidence up, as insignificant as this all sounds it is hard to do at first (so dont let that discourage you) but it gets your blood flowing and it does get easier.
Steve
3
Hey Angel, Vent any time.....it is so frustrating and when you cannot tell what things are seizure and what are meds you do not know what to change!!

Glad you are going to a new doc and I hope he can help figure it out!! Hang in there...
Ginny
4
Thanks y'all for the reply. I dont mean to unload like this but I dont have too many other options. My mom pushes me back to work and there is no way for that.
I couldnt imagine what people would say if I just stared at them when they started talking to me. Or if I just ran into a wall for no reason. There is no way I would ever tell a future employer that I have epilepsy. Not unless I was forced to. Last time I told I lost my job.
Thanks again!!
5

Angeleyes-

The bitterness runs deep when everything which seemed normal before is turned upside down, which is what happened when I lost my job due to my epilepsy.  I think the thing that ran through my mind at first was- how could this happen to me?  It's hard for me to remember if I was more shocked or angry about it.  Mostly, it saddened me that in the blink of an eye, people I thought were my friends/colleagues were treating me differently when they found out about my epilepsy. 

The meds I was put on made me feel like I was drunk and loopy- I just couldn't think straight or even make simple decisions.  I can really identify with how you are feeling.  I have had 10 medication changes in the last 3 years and am sick of it.    The headaches, incoordination, muscle weakness, memory loss,... shall I go on? ...YOU have every right to want information- Something that can give you an idea of where you are going.  Your doctor has to be someone you trust and you know is working for you.  If it isn't working that way, then it's time to look for a new doctor.

Like others, I discovered this site searching to be part of a community who was familiar about epilepsy.   And, like you, I too wanted to know if there were people like me.  And, yes, there are A LOT.

Steve- You aren't kidding when you used the term "epileptic rollercoaster" to describe how things have been for you the last year.  I think rollercoaster is the perfect term to use to describe many of us that are going through similar turmoil.

Angeleyes, there are always days when I say to myself, "why me?".  But then, I also remember that life looks a whole lot different now than it did before, and I have learned to appreciate things I didn't before.  I hug my kids a little harder, tell my husband I love him more, take more long walks.  And after reading others' stories, I now know that I am one of MANY. 

Hang in there, Angeleyes, you are not alone.  Don't EVER give up.  (((HUGS)))

Glenda  :-)   

 

complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d

6
 
I want to say I'm too hard-headed to give up. But living a normal life and then BAM! seizures again. Life upside down. I cant think, sleep, I walk into walls, I topple over just standing still. Oh the loopiness of drugs. My family doesnt understand bc they have never been here. My husband watches me everyday and somewhat sees what I do so he sortofkindofbutnotreally understands somethings.
 
Yeah, my job, told me that when I got out of the hospital, that they couldnt hold my position. My vision was all screwed up with my seizures. It was pretty bad. My neurologist was not concerned and told me to go to an eye dr. There was nothing wrong with my eyes. I never had a prob before. So anyway. My job didnt want to hold my position for me. Said they had a responsiblity to the client to "get the job done". Therefore I've now been unemployed for 11 mths.
 
OK. Enough for tonight.
 
 
 
 
7
HUGS ((((Angeleyes))) It is tough for others to understand what we go threw. After a TC I am like mush for 10 days. SOrry about your job. It just stinks. I hope a new med combo will help you. Take care and feel good, Tracy

 

8

Angeleyes, Maybe you can get something out of my experience with the work situation:

Re: that employment thing:
 
I've had EP for 25 years and wanted to make this comment;
 
"If a qualified person is not hired or is terminated from employment as a result of a seizure condition, it is considered a form of descrimination and a violation of your Human Rights" resulting in a hefty fine or  jail time to the employer as per the Canadian Human Rights Act.
 
The employer must provide adequate work accommodations and/or special needs required to do the job.
 
My bosses thought that I was putting it on so I wouldn't have to do certain things.
Through my employer (Government of Canada) they finally sent me to a "neuro/psyc" to examine me and DOCUMENT what I can/can't do.
 
I don't know where you're from but I'm from Canada and we have the right to request this type of exam, in MY case it was my employer that requested it.
 
As a result of it being documented, my employer sent the results to "Health Canada" and since the job was being illiminated, the report showed that "as a result of the long term use of the meds, I could not learn new tasks "and requested that I go on DISABILITY and then medical retirement.
 
That proved to my employer that I was telling the truth all along  and NOT FAKING IT.
 
                     ALSO
 
Did you know that it is a proven fact that epilectics are generally better employees? So employers should be more than willing to hire an epileptic. (unless it's really severe)
They have better attendance because they think they're being watched by their superiors who are expecting them to take lots of sick days.
 
They work harder and have a better production rate for the same reason. Everyone is just waiting for you to screw up.
But they're still outcasts, Everbody thinks the're different but actually they're more compssionate.
 
We have to continue to do more to educate the public about epilepsy or seizure conditions because we're still viewed as outcasts or bad people (possessed by satin).
 
The general public are basically SCARED of us, if we have a seizure in front of them, they will be embarrassed and won't know what to do.
 
 
Randy (Ontario, Canada)

Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
20mg-Celexa/day

9

I tried contacting 2 seperate lawyers on this and neither would talk to me about it. 1 wouldnt even call me back.

My employer even held my ck until I quit. Yeah I was pissed. Me and my mom had it out with the HR which just happens to be the daughter of the owner. It was just a huge mess. Finally with all the stress it was making me have more and more seizures and my eyes were starting to do real funny things I gave up. Shouldnt have nono   But I did.

I think that one worked out for the best. I'm now staying home. Trying to get my head on straight. As soon as the meds kick in and I know I'm not having seizures left and right I'm going to get a PT job just to help out with bills. If sometimes down the road I feel up to a FT job I will. I miss working. Staying home sucks. I get too bored. eyes  

 

Topamax - 100 MG
Zonegran -  200 MG