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Posted 11/8/2005 5:02 PM (GMT 0)
So, how many people here have been on meds for a long time with no total control of their seizures? I've been taking tegretol (tried others) for over 12 yrs. and still have them. I have fewer than I did and over time my Dr. has raised my dosage to the max. I honestly don't think I'd take more if I could because of what it's done to my head. From reading your posts, I gather that you all have problems with memory and concentration. After all that's the object of these meds: less brain activity, less seizures. I noticed early on my problems but it was bearable then. Now it's become so much worse I wonder if having frequent seizures is the better. I stay on my meds for now because I have a 2 yr old daughter who means the world to me and if something were to happen to her because I lost consciousness I don't know what I'd do. When she's old enough I'll probably reduce my intake if it means getting my sanity back. I'm not at all who I used to be. I'm too dependent on other people, I've become a hermit and have very little self-esteem which is bad for my marriage and my daughter. How do you guys get through it without going nuts????
Posted 11/9/2005 2:34 AM (GMT 0)
Thanks MandiAnn I guess I just need support from people who have some idea of what I'm going through. It's much easier to get a "slap in the face" from one of you than from someone who hasn't got a clue. I know I need to try some other med. but the idea scares me. It's not exactly an easy thing to do in my situation (not that it's ever easy). I'm not usually so negative about it. It's just been a hard few months and when things get hard I tend to dwell on the past (what I remember of it) and that doesn't help anyone.
Posted 11/9/2005 5:24 AM (GMT 0)

Molly,

Please don't change or reduce your meds without checking with the Doctor. Keep in mind, it usually takes a few months for your meds to stabalize in your system. It also takes several tries and different dosages of meds before the right coctail of meds can be found to suit you.

PS: even driving becomes an issue:

Re: use of meds, Here's my story, better safe than sorry:

I've had EP since 1979 that is now 95% controlled by medication. 

I drove without a problem until Dec/02 during an incident in a parking lot(I just came off the highway).

Now my blood levels are being checked each week but the Ministry of Transport has tightened up the rules in this area in an attempt to reduce traffic accidents so that is making it more difficult to get it back. But if I do get it back (which I don't think) I still won't drive and risk the lives of others. I think that is the more resposible way to handle it and set an example for others.

It's just like driving drunk-you're taking a major risk.
At first I felt that some of my freedom was taken away but I've gone more than 2 years without it and I'm starting to accept it a little easier.

Carreer change due to seizure condition:

Music runs in my family and starting from age 9 I was playing drums and guitar with proffesional bands. Up until age 21 (1979) I was a singer/songwriter, music teacher and a studio musician. My only dream in life was to make a good living with my music. (I also developed Ulcerative Colitis at the same time, the Docs. say the two are connected)

Well, all that had to come to a stop. I was sitting at my desk at my P/T job when I had my first seizure. All I remember from that point on was waking up in the ambulance on the way to the hosp. After going through several tests and then seeing a neurologist, the tests showed that there was epileptic activity in my lower tempral lobe. He then persribed Dilantin and Pheonobarb (still on today) and the seizures were under control. I was even able to keep my drivers licence.

One major problem though, the pills were severely messing up my co-ordination. I walked like a drunk, slurred my speech, my own family was embarassed to be seen with me.

Since my co-ordination was so bad, I could no longer play guitar or drums and I had to give up teaching.

I was so depressed, I could no longer fulfill my dream, now what was I going to do.
I had to make a career change. I was putting in job applications all over but I had no other experience.

Finally I got hired on by the Federal Government as a courier and mail clerk. I worked my way up to Administraion Manager for the Unemployment Insurance Office for 21 years and then 9 years with Veterans Affairs.
My condition was getting worse with age, no seizures but the meds were blocking my learning ability so I couldn't take on extra duties.
As a result of this, my employer(The Government of Canada)
put me on medical retirement last year (I'm oly 4VIEW IMAGE but after my disability insurance runs out.

I had to learn to live with my disability and work around it.

 

Randy



Posted 11/9/2005 4:37 PM (GMT 0)
I wouldn't do anything without talking to my neurologist and driving is no longer an issue. It shocks me that so many people with seizures ARE driving. Denial seems to be human nature.
I was only having petit mals a few days a month (kind of like a menstrual cycle) until age 19, when I was on my way to work and noticed someone following me. She looked nuts and kept waving at me so, I was afraid to pull over. She followed me all the way to work and when I walked to her car, I realized I knew her and told her I was sorry I didn't recognize her. She started yelling at me, asking how I could hit her car and drive off like that. All I could think was, "What the hell is she talking about?". She explained that the day before I had side-swiped her car and showed me where. I looked at my car and low and behold, there was a mark of paint that looked a lot like the color of her car. I was in shock and couldn't talk. I just gave her my ins. info. and went to work where I had all day to sum up what must've happened. I remembered having a seizure on the way to work but before I had never lost consciousness. I could always get from one place to another or hear what people were saying I just didn't always register it until after the seizure. I couldn't have done it! I would have known! DENIAL! OOPS! (first mistake)
A few days later I was driving to a friends house when I had an aura. I was about to make a right turn off a busy st. so I thought I could pull over after the turn. OOPS!(2nd mistake) The next thing I knew my car was a bit elevated on what used to be the sign of the local hospital and I looked behind me to see that I had taken out a bus stop on the way. Thank God nobody was in it. That's when I started my tegretol and things actually went good in the beginning. After a few months I quit having seizures and got my license back but another few months went by and I started having them again. It's just been trial and error for the last 11 yrs. and I still have them less frequent but more hard-core.
So, if you are driving with seizures: Don't wait for the second kick in the butt! What if there had been someone in that bus stop? I don't think I could've lived with that.
A lot of you have them every day. I was never that bad. Just a few days a month I'd have them throughout the day. And that's why I wonder: Would I rather feel really crappie for a few days a month or pretty crappie (due to meds.) all the time? There needs to be a red-faced icon with flared nostrils and smoke coming out his ears!
Posted 11/9/2005 5:06 PM (GMT 0)

Hi Mollymom-

Welcome to HW.  As I was reading your post, I was thinking- boy, I know what you mean.  I've had seizures for 25 years despite all the meds.  After various combinations of 8 medications over the years, I too was wondering if all I had to look forward to was the same routine of worry and despair.  I just had a left temporal lobectomy 4 months ago and I've got my fingers crossed that my seizures will finally be under control.  So far, so good.   I've got to stay on my meds for at least a year, maybe forever, to maintain the control.  The consequences, as you mentioned, are my memory and concentration aren't the same.  In addition, after the surgery, I now have a persistent headache too.  Of course, I'm hoping all the med side effects and headaches get better, but I'm willing to deal with it if there's a chance of having no seizures.

It's absolutely essential to have as much support as possible to cope with this problem.  Although my family and friends that don't have epilepsy are loving and caring, they don't truly know what I go through.  That's why I get support here. 

Like Ranman and MandiAnn said- just work around your "disability", spend as much time loving your little daughter, and I've learned now- there's always hope.  Get support. And Believe in Yourself Mollymom.      Hugs,    Glenda :-)

Posted 11/11/2005 3:33 AM (GMT 0)
I've never been able to take any medicine for any long period of time.  Lamictal is the only exception, everything else works until I become immune to it/tolerant of it in what I think is less than 6 months.  I don't know if this is what you mean.  It's like my body forgets that it is a foreign object in me and just treats it as a part of it that does nothing.

I have been one to change meds on my own.  Actually I've  had some doctor's who have said to go ahead.  I've been on almost all anti-seizure meds and some of them don't know what to do with me.  But be careful.  Never stop one suddenly.  And at least tell your doctor what you did and why and how and if it helped.  You might want to find out how long to take a smaller dose before you know if it is helping.  For example if you lower a dose and feel better within two days and have seizure control, how do you know if the medicine is in your blood from the higher dose.  Knowing if a lower dose will work takes time, I think.  And don't do more than one change at a time.  My advice anyway.

You asked if anyone of us has had extended length of time with  no control.  I have but I've had control over tonic clonic.  When I have times of no control it is either what I think is myoclonic seizures and what are non-epileptic seizures.

Uhura

Posted 11/18/2005 11:30 PM (GMT 0)
Molly
I always want to reduce my meds,

Post Edited By Moderator (~Jennifer~) : 11/18/2005 4:48:11 PM (GMT-7)

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