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Posted 5/1/2005 11:23 AM (GMT 0)
Hi everyone!!!

Well, I'm from Toronto Ontario Canada and I was diagnosed 2 years ago as having epilepsy. I was 41 and been driving truck/transport for some 22 years when out of nowhere I started having complex partials. Thank gawd I wasn't driving at the time it started. Needless to say, when I finally agreed with my wife to see the family doc, he yanked my license el pronto. The laws in Ontario dictate that I can "never" have my class "A" license (transport) ever again for the simple fact that I have a history of a seizure disorder. Under certain circumstances however, I may re-apply for my "general".

At the start of my epilepsy I started by having 3 to 4 complex partials on a daily basis. On the most part I felt them coming through an aura which I best describe as some kind of de-ja vu feeling. During these seizures, I would continue what I was doing but was not aware of my environment and would lose control of my saliva which would end up all over the front of my shirt.

Originally the docs put me on Dilantin and after a year of constantly raising the level of Dilantin in my system, I continued having complex partials and had my first grand mal which put me in the hospital. I had fallen forward onto a hard floor overtop my arms and was banging my face all over the floor and the side of a brick wall. You would've thought that I got beat up by a football team. They then switched me to tegratol and it seemed to be working quite well as it reduced my complex partials next to none but a year later I just recently had another grand mal and my complex partials are back albeit only 1 or twice a week.

Since driving transport was my main source of income and my way of making a living I applied for ODSP (Ontario Disability Support Program) and was denied as I was not considered a "disabled person". My seizures are back and it appears that no employer wants to touch me.

There, I did it.

Zigman
Posted 5/1/2005 3:09 PM (GMT 0)
Welcome aboard Zigman. I'm from just outside Ottawa (Gatineau). While doing a Google search on another medical condition, I came across this site. My initial reaction to reading some of the questions and concerns being expressed was one of surprise and awe. The candor and genuine concern of people wanting to help others inspired me to log onto the site. If by sharing my personal experience I can be of help to anyone - great.

I was 32 years old when I had my 1st elipectic seizure (tonic clonic). Boy what an experience !! At one moment I'm discussing a file with a colleague. The next thing I remember is looking up at him and asking him why HE looked so white !! He then asks me if I knew where I was and what had (just) happened. It's at that moment that I experienced what I like to call my own personal tsunami of information overload. The smells, the sounds - I'm in a hospital !! Before I could even ask what was going on, the wave of pain registered its presence - the tongue on fire, my head as if in a vise. Looking back on it now, I realise just how wonderfully complex yet at the same time how simple and straightforward the human body is. I now know that my head had for the first time experienced a thunderstorm of sorts with the flash of a lightning bolt where a spark was all that was ever needed to keep things humming along (no pun intended) just nicely thank you very much.

Well, the usual barrage of questions then followed. 'Were you in a traffic accident?'; 'Were forceps used at birth ?' (as if I would have remembered); 'Did you fall from a tree?' (yeah, right). In any event, things got off to a rocky start with Tegretol being prescribed. A week later, I'm an emotional basket case, crying for no apparent reason, covered in hives, sweating profusely (and it's the dead of winter !!). Luckily for me my family physician tells me to stop taking the drugs and to see him the next day. He refers me to a neurologist and Dilantin 425mg daily is prescribed. So too is a CT and MRI scan and blood work (AST ALT). Here's the first piece of advice I can offer. Get yourself one or more doctors you feel completely comfortable with, who'll answer ALL your questions (there are NO stupid questions), someone you can trust. When you find them, make them a promise. Tell them that you'll keep your end of the bargain and do what your told. (I take my meds religiously - at specified intervals throughout the day - every day - all year long). In this way, your doctors will quickly realize that they're dealing with a straight shooter and they'll be more apt to bend over backwards if and required.

It's been 20 years now and I've had three other seizures since that fateful day. My last 2 seizures happened while I was sleeping. Where better that in the safety of one's bed to have one of these things. Yes, I (and my doctors) are concerned about the long term side effects. In my opinion it all boils down to attitude. This might sound a bit too simplistic, but I believe that if you look at the glass as half-full instead of half-empty, you'll be better off in the long run. Sure, the liver is taking a kicking. Then again, I know some folks whose livers are in just as bad shape due to their drinking !! I''ve definitely prefered being essentially seizure-free for 20 years than having toyed with reducing my meds and possibly getting frequent flyer points in ambulances.

Take care of your gums and teeth too. See your dentist at least twice a year. Insist on seeing a specialist and having your gums thoroughly cleaned if they start to bleed excessively when flossing.

In the last few years, I've noticed that I search for words when I speak. Not quite as articulate and fluent as I was in my younger days. Not slurred speach mind you, just 'hesitant' is all. Mind is still as sharp as ever and it can be frustrating at times. Then again, it's also frustrating when an ignoramus cuts you off on your way to work. Just remember, these are frustrations only and not some crisis that's life-threatening in any way.

Finally, excessive hair growth. The odd hair off the top of my nose gives my wife a great excuse to use her tweezers (ouch !!).

Remember, some famous people were epileptic. Take care all. Best. Dave2.
Posted 5/1/2005 4:08 PM (GMT 0)
Thank you so much for the warm welcome.

I have a question about tegretol if I may?

When I was first diagnosed 2 years ago, they started me on dilantin and after about a year they had increased my dose to 800mg a day but I was still having complex partials and had my first grand mal. The side effects I was experiencing with the dilantin at that level was like I was in a drunken state. I would literally trip all over myself and even fell a few times trying to walk around the house. Needless to say my head was a real space case. Anyway, my neuro took me off dilantin and put me on tegretol. I'm currently taking 600mg which I suspect will increase as I just had a second grand mal from the first one a year ago and my complex partials are back. What I have noticed about the tegretol is that I'm forever dropping things, I smoke and can't seem to hold on to a cig if my life dependent on it. Another thing I've noticed is that I get anxiety spouts. I have never had a problem like these till I started the tegretol. Have any of you ever experienced anything similar to these on tegretol and were you able to control the side effects through supplementary meds or what have you?

Zigman
Posted 5/1/2005 4:42 PM (GMT 0)

Hi Zigman-  welcome to HW :-)

I have been on both Dilantin and tegretol too.  When I first was diagnosed in my 20's with complex partials and generalized seizures in my sleep, I was put on tegretol.  I couldn't walk straight and my eyes had the strange side effect of jiggling back and forth.  I couldn't see worth a dam and reading was impossible.  It was a struggle to stay awake let alone be coordinated.  I too was anxious and in fact cried in front of people that I never would have  done so before.  I felt like an idiot! When I called my neuro to ask if this was normal and if this was going to go away, he said the meds were causing the side effects.   I destroyed several relationships with friends that I felt were due to the med side effects.  I eventually got off it.  What a relief!

As far as Dilantin-  I was put on it after my seizures became uncontrolled many years later...and had to gradually increase the dose over several weeks  After several weeks (I felt like a zombie the whole time), I began to have feelings of paranoia and feeling like people were out to get me, spys were watching me, people plotting to kidnap my children.  I felt like I was being poisoned and was sickly- didnt feel good.  My neuro called me to tell me to get a blood test to check my blood level of Dilantin and found I was in a toxic range.  No wonder I felt sick!  I felt normal immediately when my dose was decrased to a normal range!

Glenda :-)

Posted 5/1/2005 8:29 PM (GMT 0)

Hi Ziggy and Dave, I'm Randy from Hamilton, Ont.

I can't offer you any help but I can share my experiences with you (similar to yours) and hopfully you can get something out of it.

Driving:

I've had EP since 1979 controlled by medication so reported at that time to the "Ministry of Transportation" that I was controlled by medication, no questions asked and I didn't lose my licence.

I must have slipped through the system because in ALL cases you must go seizure free for 2 years even if controlled by meds.

 

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 48) but after my disability insurance runs out.

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

Long term use of dilantin:

It is documented that it is hard on the liver, causes abnormal hair growth (where you don't want it), and/or overgrowth or softening of the gums.

I also want to say that I've been on this drug for 25 yrs and I have my blood monitored weekly and my liver is in good shape.

I see the dentist every 3 months(because of the dilantin he wants to see me every 3 mos.) and my gums show no sign of dilantin use.

I do however have unwanted hair growth (legs, arms, chest, back,)  but bald on the head. (I don't know if thats hereditary or from the drug)My arms and legs are like Robin Williams.

I've noticed other side effects such as stigma (sp) (eyes), paranoia, profuse sweating, poor co-ordination and bad gait, erectile disfunction, to name a few.

I also take pheonobarb and the only effect I get from that is drowsieness and getting tired. 

I have a lot more to say but I'll save it.

Randy

Posted 5/1/2005 8:37 PM (GMT 0)

ZIGMAN,

Since you don't qualify for ODSP, try CPP-Disability, you should qualify for that. I qualified with no questions asked.

Randy

Posted 5/2/2005 10:46 AM (GMT 0)

RanMan said...
ZIGMAN,

Since you don't qualify for ODSP, try CPP-Disability, you should qualify for that. I qualified with no questions asked.

Randy


Hi Randy

When I applied for the ODSP I was denied because I was not considered to be a "disabled person". Under the ODSP, a "disabled person" is to "have a substantial physical or mental impairment that is continuous or recurrent and is expected to last one year or more." I was told that epilepsy is not a "substantial" impairment.

As for CPP, the wording is a little different...

"The CPP definition states that a disability has to be both "severe" and "prolonged", and must prevent you from being able to work at any job on a regular basis."

"The law defines a severe disability as one which prevents you from doing your former job, or any other job, on a regular basis. A disability is prolonged, when it is expected to last at least one year or is likely to result in death."

Is epilepsy considered to be both severe and prolonged, and prevents one from being able to work at "any" job on a regular basis?

Zigman
Posted 5/2/2005 11:37 PM (GMT 0)

Zigman'

In some cases epilepsy can be severe enough to disable you from working for a prolonged period or temporary but it's different for everybody. All I needed was a medical from my Doctor and I qualified, no problem.

In some cases (MINE) the meds can cause problems with co-ordination (manual dexterity) and gait, along with other side effects. It gets worse with age.

My fist(and only)seizure happened when I was 21 yrs. old. After several tests at the hosp. I was put on a coctail of dilantin and pheonobarb. I've only had one seizure since 1979 but my anual EEG's and MRI's show epeleptic activity in the left tempral lobe.  I worked for 29 years after that. Now I'm on Disability Ins. and medical retirement. I have doctor backing.

Since my meds have effected my learning ability for new tasks (documented by Health Canada) I had to be let go and put on medical retirement. I'm not as sharp as I used to be, I was a Manager of Administration for the Government of Canada.(maybe that's why the Government is so screwed up. hehehe)

Randy


Posted 5/3/2005 2:15 AM (GMT 0)
Randy,

Thank you so much for taking the time to respond.

In all honesty I messed up with the ODSP.

I was diagnosed with epilepsy in Feb of 2003 and put in my application for ODSP in June of 2003 which was too early. I had very little supportive documentation and four months into my epilepsy was too early to make a proper assessment of my situation. At this time I was only having complex partials and was just starting the medication. All I had was doctor's notes saying no driving, no heights and no operation of machinery. And of course I had no documentation as to the effects of the medication in relation to seizures or side effects as it was not known yet. All of this was reflected in their decision to deny my application.

From this time on however my health situation became worst. After months of taking Dilantin and raising the dosage to where even the pharmacist questioned it, I continued to have complex partials and had my first grand mal in Nov of 2003. By this time the Dilantin was making a mess of me to a point that I would fall not from seizures but poor coordination. My wife said that you would have sworn I was drunk all the time. It was at this point that both my family doc and nuero told me that I needed to be on some kind of disability and so I applied to appeal the decision in front of the tribunal. And here is where I made my second mistake. My sister-in-law who has done work as a paralegal said to me "Oh don't worry, I'll prepare your case, I know all the paper work and will do it for you for a small fee" and so I agreed. Come time for the tribunal however, I find out that she did absolutely NOTHING and I was left to appear by myself. I was a complete mess and had no idea what to do let alone prepared. I went into a depression and didn't go.

Since then my nuero slowly switched me to tegretol and it seemed to work at first until recently. I'm having complex partials again and had another grand mal this past April 10th. In fact I had a complex partial while writting this post this morning and after a few hours of sleep I was able to resume writting. With the tegretol I'm forever dropping things and I'm always "nodding off" no matter how much sleep I get. And then there are some days where I get anxiety attacks and have an overwhelming feeling of "fear" which I can't explain.

I'm seeing my nuero tomorrow and I'm worried sick cause my seizures are back and it appears that tegretol isn't working either and is only messing me up as the Dilantin did.

BTW, I called the legal clinic today and it looks like I might be able to re-apply to the tribunal through a proper lawyer. I'll let you know how everything turns out.

Again, thank you so much for your time and God bless.

Zigman
Posted 5/3/2005 3:16 AM (GMT 0)
HI Zigman, welcome to the club. I hope you find this site helpful. Welcome & take care Tracy
Posted 5/3/2005 10:20 AM (GMT 0)
Thank you Tracy!! Even though I'm a newbie, I feel at home already :0)

Zigman
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