Can I have my life back?

[peachy]

Hi. Just found out after a car accident that I caused, that I have epilepsy. I guess I had a seizure because I have no idea what I did wrong to cause it. Lets just say I'm lucky to be alive. I am still very emotional about the whole thing. I have complex partial seizures. Right now, I am still having many seizures a day. Nothing is working (Rx). I can't figure out what triggers them. I am a single mother and a teacher, junior high kids to boot, and I'm supposed to avoid stress. Yeah, right! I'm not sure how much longer they will let me teach with uncontrolled seizures. They are short (most 5-15 seconds, some 30 but rarely). I'm tired and irritable. My poor girl, who is 13! I can't drive for three months from the last seizure, which was an hour or so ago. I don't know that I've had the seizures, so I can't keep track. Just increased Keppra xr dosage, that's not working. Taking trileptol. I am facing the fact that I will need to tell 200 students my problem which I'm resistant to do. I am considering a 2nd opinion. Tests are pretty conclusive, right? EEG's both showed proof enough for the Doctor. MRI was normal. Not sure what to do except cry, which is common now, but was rarely common before. I just want my life back!

 

[Meetz1064]

Hi, hello and

how do you do? It's very nice to "meet" you!!:bigsmile::bigmouth:

First off, I understand how you feel down in the dumps, but look at it this way: Things are going to be rough for a while, but it will get better, and it really could be worse.

Consider the fact that it could be something as simple as FOOD that could be triggering your seizures. Keeping an E journal will help you figure that out...and it's not as hard as you think, although it is fairly detailed.

While I wish you luck with telling your students, while don't you send a private message to Skillelfer? She's also a teacher here, with seizures, but she has tonic clonics. She's been where you're at right now. She could probably give you some really good ideas.

Let me know if you want that list of what to put into the E journal. I have it...I just didn't want to overwhelm you with the first post.

Don't forget to check out all the nooks and crannies here....Mr B has built us an AWESOME home. Lots of information here, and friends to make.

Take care, and good luck.

Meetz
:rock:

 

[McGill]

Peachy, here are a list of companies which can help you if you run out of money to pay for your Rx: http://www.coping-with-epilepsy.com/forums/f23/when-you-cant-afford-medication-1452/index3.html

First, Greetings from Canada. You can have your life back, believe me!!

Prescibing Rx is an art, not a Science, and it may take some time. As Meetz mentioned, there are plenty of peolpe who can help you with contacts to different resources. The above link is on this site. :agree:

 

[carlasmoore]

Hang in there! 2nd opinions are always welcome and recommended...It's not an easy road but keep the faith..we are all here for you, if you need to let off steam or just chit chat...take care, Carla

 

[Nakamova]

Hey Peachy, welcome to the site!

A diagnosis of epilepsy just means you have had more than one seizure. It's not the end of the world (even though it may feel that way right now). I know it can be very hard to adjust to -- the doctors, the meds, the unknowns -- so I would recommend that you ask your doctors a lot of questions (and take notes on the answers), try and keep a full journal (to potentially isolate any seizure triggers), and be proactive about taking care of yourself. If your meds aren't working, keep after your docs to find some that do. If you need support, ask your friends and family or even a therapist to help out. And we're here at CWE if you need to vent, chat, share or find information.

Re: the crying -- Keppra affects moods, so you can possibly blame that, and should mention any mood changes to your docs. (Though there's nothing wrong with crying for crying's sake. We've all had those moments).

Best,
Nakamova

 

[dfwtexas]

Hi, welcome to our group. I got diagnosed at age 47 and thought it was the end of my life too. It takes some time to accept, understand and get on with your life. I take Keppra too....be patient as it can take some time to adjust your meds, mine have been adjusted several times.
I work, I drive...I have a life!

 

[RobinN]

Peachy - I too would rather not have to think about this on a daily schedule. No going backward though.

I have learned that nutrition can play a huge role in seizure activity. Not something you will hear about in a conventional doctors office, but with adequate research online, you will see that there is good references to back it up. Not a quick fix, which most people want. They want to be able to turn around and forget that it ever happened. Rare that can happen though, due to side effects and eventual break through seizures.

I think finding the root cause is extremely important because the quality of life will be far better in the long run. Not an easy journey... but worth trying. Journal, and consider all that you can improve in your lifestyle.

 

[knothing]

Welcome to this site. I imagine the stress of being a single mom and being a teacher is something you have dealt with for some time. The new stress of having no control is the big stress in your life. Losing freedom to drive where you want and when you want is very stressful and frustrating, I know because I am still dealing with that. Losing control is hard to deal with but with patience and practice you can get past that.
My job is not the same as being a teacher but I had to have the talk with my boss and he was understanding as to my condition and the issues that I may have that could impair my work. Being a teacher you are more than likely part of a teachers union and that might be the first place to look to see how you are protected. Then you may have to deal with the school administrators but I know growing up I had a few teachers with physical impairments and they managed through all the issues (kids being mean and such). None ever lost their job due to their physical problems.
Based on the age of your kid you might want to look into a change in hormones. There could be a chance that you have hormonal changes that are creating the seizure. I sure that the site has threads containing information about that. Seeing how I am a guy most of these I would not be reading. I'm not saying hormones don't affect men but women do have several 'unique' issues.
Just remember doctors are a tool that you can get to work for you but sometimes it is hard to find the right tool.

 

[Loudmouth]

Welcome to CWE, and hi from another single mum with E. I also have CP seizures, and atonic seizures too. My children are 11, 7 and 5. I know how it feels to 'have the rug pulled from under you' with getting a diagnosis of epilepsy. I had to give up my career as I was working as an on-site architect, and in the UK, if you have ONE seizure after the age of 5, you are never allowed on a building site again. However, I now volunteer once a week at my children's primary school to help with the reading. I'm sure that you can continue with your job, but what age do you teach (I'm English, I don't know what ages junior high covers). Would it be less stressful to consider teaching younger children? I am looking to start re-training next year as a special needs teaching assistant (primary). If I can get my seizures a little more under control lol.

 

[matchu]

spread the word, being a teacher you can inform a new generation about epilepsy so it is not so foreign to them. I get that all the time... stop stressing over things... I always respond, you show me where that switch is and I will turn it off. It feels as if others just believe we choose to be this way. Humans can be very ignorant to other peoples feelings, and if they can't see the illness it is not there.. just stop doing it... I may just snap one day when I hear that... lolonder:

 

[moonchild1970]

Welcome. I hear you. I just got dx this past Aug. myself. I also feel scared, lost and all alone. But I found my way here and it is getting better slowly.
Let us know if you need to talk. We are here for you.

 

[McGill]

Peachy, what matchu said is true. you can take some time when the children are restless and ask them what they know. You'll be surprised at this. Also make certain that they know what to do in case you DO have a seizure as well as the teachers (if you haven't already done so.) I also had students try to push the envelope on me, but they were caught and disciplined accordingly.

 

[matchu]

I am an advocate for epilepsy and non epileptic activity disorder and have some things I am working on. You may be able to use the epilepsy month as a learning tool for your students. I figure I will start by raising awareness then move on to raising money. I am an artist and want to have a gala showing all types of arts from artist that struggle with mental disorders.

 

[alivenwell]

Welcome to CWE! It does sound like a lot of stress is happening especially with school starting now. It's an extra risk to also be in an institutional place like a school with a potential swine flu epidemic looming in the background.

As precaution, it may be a good idea to use hand sanitizer. And, don't worry about your kids...they'll handle this. I took my son to a private driving instructor when he turned 16 years old.

I totally agree with teaching students about epilepsy. Maybe a local Epilepsy Foundation will provide you with assistance and information that can be presented to the students. We had an English teacher who had to hook up to a dialysis machine every day. He made a point of educating all students about it.

I have a very wonderful active dog who takes me for a walk and runs with my kid. She has an incredible ability to manipulate all of us. The walk every day is a great stress buster for all of us. I never realized that until we acquired her.

 

[Belinda5000]

Peachy,
welcome to CWE. I'm 47 years old I was diagnosed with epilepsy when I was two.Stress is a major factor with some people and there seizures it is with me.
It can take awhile to get the right combo for your meds sometime.
I've never been controlled, but that doesn't mean you wont be.It takes patience and do what your neuro tells you to and pay attention to what your doing before u have a seizure to figure out what ur triggers are.

Belinda:twocents:onder:

 

[dfwtexas]

peachy,
how have you been doing this week?
jenn

 

[little fruitcake]

Peachy, Glad your here with us. This is a soft place to land.

 

[Rhea]

Hi Peachy! Welcome and get comfortable. It might be a long bumpy ride, but once you get going in the right direction, it smoothes out. I just got through the stage you're in now- so you're not alone! That's helped me a lot. I was a teachers aide for preschool and special needs. I had to give it up because of the driving. But, someday I will try to be back. Yes, you can teach a whole new generation about epilepsy and disabilities in general. If you treat it as a fact and nothing to get scared about your students will too. If they see you accept it and live a full life despite E. they may be able to handle problems a little better in their own life because of your example. Just keep pushing on and LIVE! Life will change but it will go on. Good luck, and check in here often. It's helped me tremendously!!!

 

[skillefer]

Hi! I also teach middle school. don't you just love 12- 14 year olds?? They do have a unique sense of humor That and the she said she said is so much fun to deal with.

I also have a 2 1/2 month old, and have helped to raise my hubby's three younger siblings. I can totally understand stress.

Believe it or not, this isn't the end of the world. Think of it like diabetes. It's something that you can treat, and learn to deal with. You might have to make some lifestyle changes, but it will be for the best. For example, 7 hours of sleep minimum, 6 small meals a day (small as in will fit on a dessert plate and a protein with every carb), and finding a way to unwind that works for you (yoga, exercise, walking, reading, praying, etc...). If there's ANY history of diabetes in your family make sure that you keep careful control of your blood sugar. Low blood sugar can trigger seizures. As can lack of sleep, too much caffeine, too much stress, OTC decongestants, flickering lights, etc....

As for the teaching part....since I have tonic clonics ( you know, the ones they love to show on tv with the biting of the tongue and falling down and thrashing about) I tell all of my classes about my seizures at the beginning of each semester. Trust me, it's a lot less scary if they know ahead of time what's happening. Yours sound really short. Mine last several minutes and can be very violent. I've had kids cry because they didn't know what was happening and they thought I was going to die. Because mine are obvious and visible, I educate my classes. You'll be surprised when kids come up to you and sheepishly say that they or their relative has them too. It's not that uncommon.
Also, wear a medic alert bracelet, just in case you ever have to be in an ambulance. Let the school nurse know about your medical condition so that she'll know how to respond. Now, my district has a set protocol for seizures...so because I didn't want an ambulance called, I had to get a letter from my neuro stating what I had and what steps to follow if I had a seizure at school. If you change meds or dosages, let the school nurse know.
always keep a spare lesson plan at hand just in case you have to be gone. That has saved my bacon so often when I had seizures at school. And no, they can't fire you if you do...they have to abide by the ADA.
You said you have a 13 year old...see if DMV in your state will allow her to have a provisional drivers license. A friend of mine has seizures. Her son has a provisional license that allows him to drive in case she has one while driving. Luckily she has auras so she knows ahead of time when she's going to have a seizure. she pulls over to the side of the road and tells her son to take over. Her son was stopped once. He showed the cop the provisional license, and the cop told him to go ahead and drive home and take care of his mom.

ask questions. You're new to this and nobody who has this expects you to be an expert. And more importantly, remember you aren't alone. We're here for you. so feel free to vent, ask questions, etc.

 

[Loudmouth]

So middle school is the equivalent of yrs 7/8/9 in UK. That makes sense to me. So theoretically, that's where my eldest would be if we lived in the US.