Tired of looking for a "Bright Side"

[EoUnus]

Well it's been nearly 4 years since I was diagnosed with epilepsy. I was trying to make the State Championship winning varsity football team as a sophomore, and pushing through the daily fatigue. I figured a great way to distinguish myself would be to bust heads with the biggest senior on the team. Well the daily fatigue wasn't exercise, it was viral encephilitis/meningitis, and the busting heads wasn't distinguishing myself, it was some pretty good concussions.
My first seizure was in the middle of an end-practice team meeting.

The only thing I can remember from 8th grade to 11th grade is that my hospital's ICU has really REALLY good key lime pie. I couldn't remember joining the football team, my girlfriend, my life. Well my girlfriend was still there, I was still on the football team (equipment manager) and I've had a chip on my shoulder ever since.

I've been on multiple medicines/combinations of medicines. Although I admit to hating/not taking my medicine, it never worked even when I took it. My seizures aren't that bad, but every six months is enough to keep you from being "normal" in Texas.

Well to cut a long story short, I'm sitting here in college after watching a friend have a seizure for the first time (I learned a lot). With the possibility of surgery coming up for me, I'm getting tired of joking with paramedics, explaining to teachers/friends, not driving, doing post-seizure experiments like trying to write my name, etc.

I need to blow off some steam because unlike Football/Weightlifting/Golf getting angry doesn't improve my performance with epilepsy.

 

[RobinN]

Hi EoUnus - Welcome to CWE.
It sounds like you began having seizures about the same time as my daughter. She was 14 ready to begin high school. She is a competitive figure skater and was training for the for some of the local competitions. Life changed drastically one day.

What a rough time to be hit with something like this. High School is tough enough when all is going well. The medication did a number on my daughter which I take has also been a problem for you.

I have learned a lot about how nutrition (or lack thereof) can lead one on the road to episodes called seizures. As my daughter heals, her seizure threshold is also improving. GI issues can contribute to seizures. Another approach we have done is neurofeedback (EEG biofeedback) This has trained the brain to be more stable in the process. I highly recommend this therapy prior to any surgery. Research is showing positive results even with brain injuries.

You are right getting angry doesn't help much, but it is surely understandable. I admire the fact that you were able to get through HS and end up in college. My daughters first two years were not positive to put her on the path for a four year college. She will have to begin at a community college. This allows us a couple more years to work on the cellular level to heal.

I wish you all the best. You have landed in a very safe spot on this forum to blow off steam. There are literally thousands in similar situations, who have signed up with CWE that understand your predicament.

 

[Endless]

Dear EoUnus,

Welcome! I'm sorry you have seizures, but if you have to have them, this is a great place to hang out, with great people and lots of support.

Well, I agree with you. You have a right to be angry, but it doesn't help much. Usually. The only time I find anger useful is when in the past I've been sad or apathetic about something, then moving into anger gives me the energy to take positive steps. But on the whole and over the long run it just uses up energy that could be spent doing something else.

I don't know what kind of seizures you have or what meds you are on, but both epilepsy and meds can cause anger, just in case the situation isn't enough already to make you mad. You may want to mention to your doc how you are feeling, so he/she can be aware of the situation.

When you read the strings in here you'll hear a lot of stories about people who relate to your situation. Their lives were one thing, then the seizures hit and now their lives are something else altogether. Not exactly what they thought their lives would ever be. And they are either sad, or very pissed off.

I'm in that situation, too. I have doubts about whether I can go back to my old career and be able to handle it. And the meds have taken away some of my talents and abilities I cherished most - creativity, my once highly organized and efficient nature, and the ability to write and weave a story, and the ability to read people's personalities at a glance. Now I'm kinda the opposite. And the seizures suck. And the meds suck. Sometimes all I can see is the suckiness. Then the clouds part and I have a good day with few or no seizures, and see a glimpse of what life can be if we keep working at it.

You are still in college and have time to discover who and what you want to be. And it sounds like you have a good doc who is looknig at all options for you.

You are so much more than football. I can tell you are a really neat guy - from how supportive you are to your roommate, to how brave you are going off to college even though you have seizures, to how determined you are and that you haven't given up. And yes, how mad you are getting at the situation. I admire your spirit. But channel the anger and use it to change your situation for the better, whether that be surgery, exploring and finding your purpose in life, helping others, or something else positive. I have high hopes for you and I know you can do it.

In the meantime, this is a great place to rant. Everyone here is supportive and frankly wonderful. And we understand, because we've all been in a similar situation at one time or another.

So hang in there. I'm really glad you found us.

 

[alivenwell]

Just a quick question...since you sound athletic, do you drink sports drinks or keep electrolytes in your system? With warm weather coming up, you may want to make sure that you prevent dehydration.

I've been encouraged to lift weights because some medications cause osteoporosis. Lifting weights helps prevent some of that.

 

[monsters_mommy0519]

i have the same memory loss issues, i was diagnosed when i was 10, and from about 13 down i can only remember a few things in my life, and like you, one of my most recalled memories is the delicious soft pretzels and vanilla shakes the hospital had..lol...but i guess there was a period where i didnt even know who my mom was, i was told i woke up in the middle of the night and i started screaming and crying for my dad to "tell that lady to get off my bed, i want my mom" and it was my mom sitting there, i had to re-learn all my friends,(well the ones who were willing to stay my friend) except one, who had been one of my best friends since i was about 7. even now, after seizures idk where i am even if im in my own room, and sometimes idk who my parents or friends are, the only person i havent forgotten is my 10 month old son, and sometimes after the seizures i think hes here at my house when hes with his grandma, so ive allways had the memory problems. it stinks i know.
keep ur chin up hun

Winnie

 

[400ex]

I developed seizures when I was 16 while in Drivers Ed. I was devistated when I found out I had to drop the course because I couldnt drive for a full year! I also found out that I couldn't do any more contact sports (football) and had to be careful doing what I loved most at the time, ATV Motocross!

It certainly changed me quite bit as far as what I do. But as a person I think I am the same old me. While my seizures don't come quite often, my last documented seizure was May 07, I am starting to develop some spells/issues right now at 22 years old and what ever it is (might not be seizure related but may be) is starting to take control of my life.

I am in a 4 year State College as well going to school is tough as nails when you have E and have to take those meds that cause memory loss but you can always get by! so far I have been doing pretty well besides 2 semesters.

Keep your head up! We have long lives ahead of us, we have better days then worse days... It may certainly not look that way but we tend to outweigh the bad more then the good.

 

[droolmonster]

there isn't a bright side. I got sick when I was thirteen. Stopped me from playing basketball. The worst part of it was, I was in FAM(I think that's what it was called), I was good, but it was my own insecurity. My dad was mad at me, but I just felt terrible.

I was having seizures all the time and sick on the medication.

I have a cousin who is one of those adventure types, and she took me rock climbing. Imagine having a seizure doing that! But I didn't.

I'm a Buddhist. An atheist, but also a Buddhist. Buddhists say that life is suffering. That always cheers me up, to know that life is suffering. Then I'm surprised when something good happens.

My advice is to find something, anything, that you love. For me it's art. But I still miss basketball.

 

[epileric]

No reason to get excited,
The thief he kindly spoke.
There are many here among us
Who feel that life is but a joke.

Bob Dylan
-All Along the Watchtower.

 

[droolmonster]

No reason to get excited,
The thief he kindly spoke.
There are many here among us
Who feel that life is but a joke.

Bob Dylan
-All Along the Watchtower.

I thought that that was Jimi Hendrix? Unless they both did that song. If so I've only heard Hendrix.

Aaahh... Hendrix. Left-handed, and one of the major pioneers of the electric guitar, looking upon it and seeing what it could REALLY do.

 

[epileric]

Bob Dylan wrote it, Hendrix re-did it with an electric guitar (better in my opinion) then Dylan started playing it that way.

Regardless, after hearing Hendrix play it this morn, I thought those lines were just perfect for EoUnus's post.

 

[Endless]

Epilepsy SUCKS. But, there are little things that I think life has delivered to me as a result that have made me a better person, and for that I'm grateful. It's not that I'm a Little Mary Sunshine all the time. I complain just like everybody else. I'm just hoping my path eventually takes me out of the shadows.

Epilepsy has...

- Humbled me. I used to be really lucky in the brains department. Now, not so much. I have to ask for help to count out pills and figure out the right bus to ride.

- Taught me grace. Before I couldn't accept help. Now I can, and can actually ask for it. I am more patient, kinder in the moment, because lord knows I'm way towards the imperfect end of the scale right now, and it's everyone else that's needing to slow down for me.

- Brought my friends closer. I thought my friends and family wouldn't want to help, or couldn't help. But I'm finding it makes them feel good to help me. I found out that all these years they felt burdened by what they felt was owing me - me always helping them, without them having the chance to return the favor.

- Made me treasure the parts of my health that are good. What I have makes life pretty awful sometimes, but odds are it probably won't kill me. Every day I am alive and on this planet is a good day. (It beats the alternative)

- Made me a more compassionate person. I understand a whole new part of life, along with the very heavy burden some carry.

Yep, epilepsy sucks. I complain, lose hope, kick the disorder around like everybody else on here sometimes does. I struggle every day, and today is no exception. But I also have a vision of where I can be: with a disease that affects me but doesn't own me. With a heart that has grown more compassionate and open as a result. And hopefully with seizures well under control. All but that last one may take the rest of my life, but keeping my eye on the prize is what keeps me going.

And thanks to everyone in here for whining with me, comforting me, giving advice, and sharing your stories and knowledge, and letting me share mine. The load seems easier when we are all carrying it together.

I still reserve the right to use the word "SUCKS" on a regular basis.