Expecting an epilepsy diagnosis and scared

[Kansas Educator]

I am 53 years old and recently had an abnormal MRI (chronic infarct, according to the radiologist) and an abnormal EEG due to some "odd episodes" I have been having. As I think back about it, I have been having odd episodes since my 20's that I always attibuted to something else. I am now awaiting an appointment with a neurologist who I feel like will likely diagnose me with epilepsy based on the two abnormal tests and my symptoms. I'm scared as I am required to drive to appointments with my job and I am only 4 years away from retirement. I am worried too about adjusting to the medication they will likely give me as I am so medication sensitive. For those of you that worked at the time of your diagnosis, did you take time off work to adjust to the medication? I think that I mostly just need encouragement as I'm scared to death.

[Belinda5000]

I am 53 years old and recently had an abnormal MRI (chronic infarct, according to the radiologist) and an abnormal EEG due to some "odd episodes" I have been having. As I think back about it, I have been having odd episodes since my 20's that I always attibuted to something else. I am now awaiting an appointment with a neurologist who I feel like will likely diagnose me with epilepsy based on the two abnormal tests and my symptoms. I'm scared as I am required to drive to appointments with my job and I am only 4 years away from retirement. I am worried too about adjusting to the medication they will likely give me as I am so medication sensitive. For those of you that worked at the time of your diagnosis, did you take time off work to adjust to the medication? I think that I mostly just need encouragement as I'm scared to death.

Kansas Educator,
There's no use in getting upset until you've been told that you have epilepsy and than you /if it happens you'll deal with it.
There are a lot worse things that could happen to you than epilepsy.
And you'll have ppl here to support you.If it epilepsy you'll have go certain amount of time seizure free before u can drive again.
I hope it isn't epilepsy.
Belinda

[Meetz1064]

hello, and how do you do? I am glad to see that you have found your way to CWE! Mr B has made us quite the happy home here. Lots of nooks and crannies to be investigated, and people to meet, and information to learn.....

Anyway, it IS pretty daunting to face a diagnosis of good old E. I've had the blessed *sarcasm* thing for 43 years now, almost exactly. I haven't let it stop me yet. DON'T let E stop you, either. IF you are dxd with E, you will simply have to find a way around things.......and, your employer will have to work with you because of the ADA....the American Disabilities Act.

In the meantime, is there a way that you can find someone to help you with the driving that you have to do? Besides, just because your EEG is abnormal doesn't mean that your license is going to be revoked.

Check out this link for some good starting information to help you out. And kick up your heels and stay awhile. I think you're going to like it here. I've got to go get ready for work now.

http://www.coping-with-epilepsy.com/...lepsy+101.html

Take care,

Meetz

[skillefer]

Hi Kansas! Welcome to CWE. I'm a teacher out in California. I was Lucky (?) and dignosed when I was young. However, I've had several seizures in the classroom, and my school admin and staff have been fantastic. As to getting used to meds. I'd say try to start the meds if you can on a weekend. That way you can see if they have a noticeable effect on you. If you can't wait to start meds on a weekend, then I would suggest that you take a day off and start the meds on that day. Also, you might want to ask the neurologist to write out a protocol for how the school should respond if you have a seizure. My neurologist wrote a letter stating that EMS was NOT to be called unless I had a seizure that lasted over 5 minutes. My hubby was to be called instead. Also, you may find that you have to fill out an accomodations form. (I have to fill one out for my hearing.... ) It's a form, filled out by your doctor that basically says that certain accomodations are medically necessary for you to perform your job. And, as to whether you will lose your license or not, that depends on what kind of seizures you have, how well the meds work, and what state you live in. My state, California, is a mandatory report state. My doc MUST contact DMV if I tell him I've had a seizure. I used to live in Iowa. And they werent' a mandatory report state...at least not back then....so my doc and I could decide whether or not I could drive. Anyway, hope this helped. Check out the Epilpesy 101 thread that Bernard linked to. Feel free to ask questions, vent, or just chime in.

[Kansas Educator]

Thank you all so much for your words of encouragement. I am trying to stay positive until I get the final word from the neurologist -- I just hope they get me in soon so I don't have to wait and wonder. I have felt for awhile that something was wrong and it took me a lot of courage to even go to the Dr. to check it out and, frankly, did not expect the eeg and mri to be abnormal. So I'm working hard to keep from freaking out and encouragement from all of you is a big help!

[Crazy Monkey]

Hi Kansas

Welcome to CWE

Try not to worry too much, I know that it is easier said then done!!!!

I was diagnosed at a young age when the word epilepsy meant nothing to me, so I didn't have to go through the worry and thought process. I feel lucky in a way because this means that I have always lived my life the same way, I have always watched out for triggers and been wary to use a kettle or climb a step ladder and I have never ever been behind the wheel of a vehicle. I have uncontrolled absence seizures which happen every hour despite taking meds, I am lucky in that I do not get any strong side effects from my meds, I just get tired mid afternoon. If you have to start taking anti ep meds, hopefully you won't get any side effects either.

Good luck with your appointment, with a bit of luck you might not get diagnosed with epilepsy, but if you do, its not the end of the world, a positive attitude will help you through this.

[jgbmartin]

Hi KE!
I am newly diagnosed this year. As far as the meds, there are several different ones around...and doses vary widely as there are individuals. Some people have no problems ....and some people have to change meds due to adverse effects. Check out the basis info and meds info on the site...but remember that you haven't seen the doctor yet and you may not have epilsepy. I had MRI and EEG and the doctor's office called me the next day and told me that MRI was ok but EEG showed seizure activity and said the doctor wanted me to come in that day to talk to him about it and get prescription. Remember epilsepy means that you have had more than one seizure...and I couldn't tell if you had a seizure...but seizures vary greatly too. If you are diagnosed as having seizure disorder, then you can discuss medication. I take Keppra which is a newer drug that seems to have fewer side effects on majority of people. My only problem is I get drowsy from it. Keep us posted...we are a friendly sort and there are a lot of different experiences since there are so many variables to our seizures.
And, yes I work full time and drive.
Jennifer

[alivenwell]

I'm definitely not a morning person because of the meds. It's possible the school will temporarily adjust your schedule to accommodate adjustment until you feel better. Frankly, I'd not recommend driving, either at this time.

I knew a lady who was in her 60s. She did not take medication, and she ended up in a car accident. She hit her head pretty hard. For at least 2 days, she had seizures and medication pumped into her system through an IV. Fortunately that was the extent of the damage. No other cars were involved. I encouraged her to take our local van transportation service because her age allowed her to ride for a reduced fee.

[Homer Taylor]

Hello
Youir greatest source of comfort will be this site and the experiences of those who traveled the same road.The possibilty of an adverse diagnosis is a cause for concern.I went through the same thing when enterring the job market=='whst will they think'.=='how will this affect my job performance'=='will I have a seizure on the job'=='will I be able to drive?'All of these guestions and many more plague the mind.This is what went thru my mind:there are alot of people that are far worse than I am,everything happens for a good reason,find a course of action that will see you through,get competent doctors and a plan for treatmeant,know that most people(95%)are understanding,decent and care,you can always find transportion if needed,and never ever give up.
God bless my friend.You are not alone1

[alivenwell]

After my pregnancy, I had a major adjustment to medication. I sent my kid to a daycare so I wouldn't have a seizure while handling him. I went back to work. They did reflect a somewhat negative attitude toward me, but I worked anyway.

It's an individual decision. Maybe since you're close to retirement, and you know your medication will cost a lot, you may want to see if they'll give you a good retirement package that has good drug benefits. Or, as my one friend did, take a 'sabbatical leave of absence'.

[Kansas Educator]

Wow, I am so impressed with all the encouragement I have received so far from all of you.
To explain my story a bit more, I have had three "drop attacks" starting in my 30's with gaps of maybe 5-8 year between. Then, I have also had two recent episodes (this summer) where I suddenly had an odd feeling come over me, felt like I was going to pass out or be sick followed immediately by feeling like my left side was numb and drooping. They lasted maybe 30 seconds and I was aware and conscious the entire time.
Still waiting to hear about a neurology appointment and am hoping it will be this week.
Thanks again for all of your encouragement.

[brain]

K E!

Welcome to CWE! And no need to worry, in fact
I was born with this and have had it all in my life
and I'm still here! If I die - I'd die laughing! And
it'll be all CWE Member's fault!



(You ought to read some of their witty postings
in the lounge and lemonade stand and you'll just
laugh your seat of your pants off!)



If you were ever diagnosed for a fact that you do
have Epilepsy - so what, You can say "I have Epilepsy,
but Epilepsy doesn't have me!"

It's just a few adjustments in life that have to be made,
but hey, everyone's got to make adjustments in life
anyway - no big deal ... but still one biggest adjustment
we all want is ...

To win the major lottery!

[Kansas Educator]

I have been waiting to get in to see a neurologist my PC Doc recommended after an abnormal MRI and EEG. Well, they had a cancellation today with his partner who is also supposed to be very good so I am going at 12:15. Keeping my fingers crossed for some answers. I'll let you all know!

[skillefer]

Good luck!

[Bernard]

Hi KE, welcome to the forum.

Epilepsy has it's challenges, but it's not a death sentence. The important thing is to get seizure activity under control. When it's controlled, it really won't impact your life at all. Getting there can sometimes be quite a journey.

[drarvindr]

Hi KE.
Im a doctor from india. I was diagnosed with epilepsy when i was 13 so i guess i'm luckier than you are right now. As far as the driving rules go , most countries require that drivers go seizure free for 2 years before they get behind the wheel. I'm sure you can sacrifice that time if you know that driving and seizure activity is a one stop ride to somebody getting hurt. In india drivers are required to fill out a license application with the question " are you an epileptic?" if you say yes - no license. i guess 2 years is better than never. Ask your co workers to carpool with you for a while. The doctors usually give you a low dosage of the drug and then titrate upwards to see what works best with you. DON"T SKIP MEDS. Have someone annoy you every day and ask you whether you took them. I skipped meds for a month and the seizures came back. Once they get under control there's no cause for worry. you are just like everyone else. As regards to your "drop attacks" , i had similar episodes when i was diagnosed. The attack you had when your left side went numb is more than likely a simple partial seizure , but i can't say without a history or examination. An epilepsy diagnosis is not the end of the world. Even before you've been diagnosed you've been introduced to a whole new world of people who are caring and supportive ( viz. this forum). And you'll be able to brag to your class that you share a diagnosis with julius caesar and Napoleon! All the best.

[Kansas Educator]

Thanks for the encouragement, Doctor. You are right on the mark about what I found out at the neurologist. I am now on 500 mg. Depakote ER which I take at night. I started a couple days ago. The only problem I'm seeing is that I am really tired and wondering how hard it's going to be to work tomorrow.

[Bernard]

Depakote turned my wife into a zombie. She couldn't handle the side effect at all. Sometimes it is hard to find the right balance of seizure control and tolerable side effects.

[Kansas Educator]

Well, I feel a little zombie-like today but, since I've only just started on the medication, I'll give it more time and see what happens. If it doesn't improve, I'll definitely contact my neurologist.

[brain]

PS: Dopey-kote as I called it, did just that...
same with Depakene...



Almost to imply "How fitting for "Halloween" - to
be a Zombie"?

But really - one needs to give it time for it to work
for everyone reacts medications differently, and
what didn't work for others, may very well work
for you - PLEASE KEEP THAT IN MIND!