Lexapro

There are many of us out there, not just epilepsy patients, who suffer from depression. I've been a sufferer for many years. Many of them have not been a clinical depression, but depression nevertheless.

When I was in high school I was going through a rough period, which many of us do at that age. I had dim lights in my room and I would play the alternative rock music of the time and lay on my bed, not wanting to see the outside world. I just wanted to be left alone. Some days were so tough that I would sit in my dark closet while the music was playing, sometimes until I fell asleep. It wasn't until I started really getting into art (which I would later pursue in college as a profession) that the depression finally lifted. But there were days that hit me later on in my college years that mirrored those days when I was locked in my closet, but the difference then is I had found ways to avoid it from taking ahold of me like it did then.

After college, I didn't see this depression again until my late twenties when I first developed epilepsy. From that day forward the depression grew and grew. Obviously medication for epilepsy doesn't help, but having your life ripped from you by this awful disorder is and has been devastating.

I've been put on meds for anxiety, etc to counteract some of the side effects of the many, many drug cocktails that I've tried over the years but I've never been put on a solid antidepressant. This is mostly because I only just recently agreed to finally see a psychiatrist for my mood disorder. He put me on an anti-anxiety med that I seem to be tolerating well with the new mix of epilepsy drugs that I'm taking, but the depression and severe lack of motivation has never really been addressed. Until now.

I now have a clinical depression. One where I can't find, though I've tried desperately, that outlet to kick the depression. Today I finally agreed or rather insisted that I be put on an antidepressant. I won't start taking it until after my shoulder surgery next week in case I have a negative reaction to it (I don't want any complications on the operating table), but I must say that I have never been so excited about starting a new medication.

The drug is called Lexapro. I've done my homework on its side effects, which seem to be minimal, but I won't know for sure how it'll react to my epilepsy meds until, like I said, after my surgery.

Maybe now, once taking it, I will find a way to live my life again as it was meant to be lived. Not in a chair, wallowing away at how horrible my life has turned out because of epilepsy, but rather refreshed and ready to take on the newest chapter in my life.

Whiplash

Yesterday Sara was in a minor car accident. She was stopped at a red light near our apartment on her way to work and a man crashed into her. She's ok, but she does have some pretty bad muscle pain from her head jolting around. We went to the ER to get her checked out when the pain became too much to bare. 

Sadly, we knew the procedure at the ER far too well due to me being in the ER more times than I'd like to remember. We waited a long while before the doctor could check her out and give her some muscle relaxers and recommended some over-the-counter pain meds. She's sleeping well, but he said the pain will only get worse in the next couple of days. This means I'm going to be her caregiver as opposed to her being mine, which is usually the case.

I haven't had a seizure for what's going on 25 days. This is very unusual, and I'm not used to it. I can say honestly that it has me both worried and relieved. Worried that the "big one" is just around the corner, and relieved that it's possible for me to have gone this long without a seizure. 

I'm not sure what I'm doing different, but I'm grateful that my brain has calmed down this summer. Last summer I was having 3+ a week while trying a new medication, so my doctor at Northwestern switched me to a "last resort" medication called Felbatol. Of course, I'm still taking three other epilepsy related meds with it, but Felbatol was banned in America for awhile because some doctors in the UK believed it could cause liver damage. I haven't had any problems that my doctor told me to watch out for, but on the higher dose he had me on at first caused paranoia and severe anxiety. This is a major reason I'm also taking an anti-anxiety drug. That, and some of my other pills can, and have, caused some psychological damage.

I know of epilepsy patients that don't experience these sorts of side effects but I guess I'm prone to them and have had to learn how to combat them through therapy. It's very hard, but I've managed to stay out of the psych unit of the ER for nearly a year now.

So, hopefully I stay seizure-free for the upcoming weekend where Sara needs me the most. The last thing our small family needs right now are two sick people wandering about, wondering when our luck will get better. For now I'm going to try to be strong, and be the man I know I'm able to be.

Making it Work

This post really speaks to the 1950s in me. In our family, Sara works as the bread winner as I deal my everyday fight with epilepsy. Disability is not fun, it's not a vacation, or any sort of fun free time that many of you wish you could have just as a break from your work life. To put it best... It sucks. I wake up everyday with a pretty clear docket, and go to bed on good days knowing that the only thing I did was not have a seizure. 

Of course, these days are tough, but not as tough as days, which are many, where I actually do experience a seizure. On "seizure days" I walk around the apartment in a fog. The next day I don't remember what I did. I don't remember what I ate, what I said, the list goes on. Basically, it's a lost day... Lost time in my life that I'll never get back. If Sara was home to witness the seizure I ask her questions about what we did that day. Simple things. Things most people take for granted. 

I've been trying to get myself back to work slowly. I've taken on a few small design projects, etc., but now I have to take more than double the time it used to take me to complete a project. That's probably the number one reason I'm on disability. A designer can't miss deadlines, and that's all I seem to be able to do. The projects I eventually finish are a far cry in quality from just a few years ago. I've forgotten a lot about the computer programs that I have to use to design. It's very frustrating and demoralizing.

There is a bit of good news. If you know me, you know that I like music, and that one of my hobbies is listening to vinyl records. I've found reissues of classic albums and go to yard sales and troll eBay for good deals on used records. I have a small collection now. A collection where I'm able to listen to some of my favorite bands from when I was younger, and newer bands that I'm just discovering.

Just a couple weeks ago I noticed that a record shop popped up across the street from my apartment. I worked up the courage to stop in and talk to the owner. It's an online record shop, so he sells on eBay and Amazon. He says that he wants to open a real record shop soon, but for now he's sticking to the online stuff. I told him that I'd like to help out somehow, even if it was just to get me out of the house for a couple hours a week. He thought that was a good idea, and called me a few days later with a loose plan to have me come in and help him grade records. Basically, that's just looking at a used records and defining the condition based on a scale of good to excellent. It seems kind of simple, but like I said before, maybe it will get me out of the house for a bit. My four walls have gotten pretty boring the last couple of years.

There's really no pay. He said that I could walk away with a free record every now and then, and that seems ok to me. I'm basically just testing the waters to see if my brain will cooperate enough for me to hold a job. He's doing me more of a favor, it seems. Plus, I'll be surrounded by vinyl records, which sounds pretty cool.

I need to be able to say that I bring in some financial support for Sara and I, and this seems like a smart first step. He knows about my epilepsy, though I still need to give him the run-down of what to do should I have a seizure. I'm sure he'll be fine with that.

It runs deep in me to be able to support a family, to work. Like I said before, not working has been hell. I know it's necessary for me to concentrate on getting healthy, but my quality of life is pretty low right now. Even doing design projects means I just have to move to the kitchen table to do work on the laptop. Some would call this the greatest commute ever, but I'd really like to be able to say someday that I go to an office everyday and work around people. Don't get me wrong, the cats are great, but human contact is something I need greatly right now. Hopefully by just walking across the street and grading a few records could lift my spirits enough to come back home and go to bed at night knowing I did something with my day.

Defining Epilepsy

Simply put, Epilepsy is defined as, "A disorder in which nerve cell activity in the brain is disturbed, causing seizures."

There are many different types of seizures, and many, many ways as to how a person develops Epilepsy. Take a peek at Twitter and you'll find countless numbers of individuals who suffer from Epilepsy and a lot of them keep online journals or blogs just like this one.

There are, however, epileptic seizures and non-epilepstic seizures. Read up online and you'll find information on this as well.

I suffer from BOTH epileptic seizures and a kind of non-epileptic seizure called psychogenic seizures. Basically, my brain has learned or has been trained to have epileptic seizures, so in moments of stress I can have these psychogenic seizures, as well. Both types of seizures look and feel the same to me. The only difference that I've noticed, or have come to notice is that my psychogenic seizures don't leave me with the same seizure "hangover" or strong postictal feelings that one of my epileptic seizures will leave behind. Plus, psychogenic seizures won't show up on an EEG.

I'm having to define Epilepsy because recently I was told by another Epilepsy patient that I don't have Epilepsy. Quite matter-of-factly, actually. Obviously, I, and some of the best doctors in the world have disproved this claim, but even knowing that there is someone out there, someone who also suffers from Epilepsy would say this to me is very disturbing and sick.

This has caused me great pain knowing that there's someone out there that suffers from the same horrible disorder that would confront a fellow Epilepsy patient; telling them that they don't have Epilepsy. I've heard of, and have experienced discrimination from people who do not have Epilepsy, but not from someone I hoped to gain support and camaraderie from.

My life has been destroyed by Epilepsy. I'll never again be the man that I hoped I'd be before contracting this awful illness. Too many hospital stays, too many EEGs, too many pills and the horrible side effects that go along with them, too many doctors giving me little to no answers on how to treat or possibly cure me of Epilepsy. Just too much pain to be discriminated against in this fashion.

If it were a stranger off the street with no knowledge of Epilepsy, I think I could handle this a little better, but not from someone who I thought I could trust.

There's a chance that the person who said this to me will read this post, and there is a possibility I will have to see this person in the near future, but I promised myself that this blog would be here for me to talk about my struggle... my fight, with Epilepsy. It has taken weeks for me to get the courage to write this, and it shouldn't be that way. This is my forum. A place where I'm free to say what's on my mind, so that's what I'm doing... and I'm doing it without fear.

I'm Tired

Over 8000 views, thank you.

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For the past couple of weeks I've been having an abnormal amount of seizures. My medication has been moved around, but I'm still acclimating. If you know me, you know that my seizures are followed by a sharp emotional flip. Most of the seizures I've been having have been without this emotional flip, but the seizure this past Wednesday has certainly spiraled me down into a deep valley.

Tonight I made an emergency appointment with my therapist to discuss some of the bigger issues in my life with the hopes that they will trickle down to my day-to-day mood since my last seizure.

I didn't realize that my lower mood was caused by the seizure until I listened to a new record I bought last night. I sat and listened and it all became very clear to me. I've been saying to Sara and to myself that "I'm tired," which has been a warning sign, of sorts, in the past.

Last month I went to an epilepsy support group and when I left I felt energized and excited to have found people just like me. On Wednesday, after my seizure, I went to another one of these meetings and I felt lethargic and frustrated. About what, I don't know.

All I can say right now is that I'm counting the hours until I meet with my therapist so hopefully I can have some sort of emotional release. There's so much pent up energy inside of me and I don't know how to sort through it. Maybe she can help.

New Friends

A lot has changed since my last post. I did end up going to the Intense Outpatient Program (IOP) for one session last week. As soon as I got into the first session (one of four that day) I knew something didn't feel right. I guess I thought I would be treated by psychologists, but instead they were all social workers. There were just four patients, for which I thought there would be at least six or seven, and all they really did was give us stapled pieces of paper for us to read aloud to the group... like we all did when we were in grammar school. About 15 minutes into the session, I had a seizure. I turned to the social worker sitting next to me to tell her that I was about to have a seizure, I retrieved my VNS magnet from my pocket and started rubbing it over my chest. The next thing I remember clearly is the patient next to me educating the group that epilepsy patients were once burned at the stake. When I heard this, I bolted out the door in a bit of a confused rage. No one came to check on me.

After 15 minutes in the waiting room, my case worker came to me as she had been told what happened. They has no protocol as to how to deal with people with epilepsy, even though they told me that they've had patients in the past have seizures. They took my blood pressure (of all things) and called Sara. Needless to say Sara was very upset at the lack of concern, and at the lady who said that people like me were once burned at the stake.

We decided that this program wasn't for me. It was a group for depression, not a group for those with depression caused by illnesses. There was an epilepsy support group meeting last Wednesday at the Epilepsy Foundation in Chicago so we thought we'd give that a try. I couldn't believe how supported I felt. Everyone was just like me. They all had similar side effects like rage and depression and we went back and forth around the room sharing stories. It was so much fun. The hour went by so quickly, but it's probably because I was so interested in what everyone had to say. Very enlightening to know that there are people just like me... Epilepsy, depressed, cabin fever, jobless... they were all there, and with a smile.

Now looking at their schedule, there are groups just for men, a group for young adults, groups for family members, and even a social group that does activities around the city. I couldn't be happier at the potential that these groups have for me.

Today was an extra special day because I finally got to FaceTime my pen pal Jacqui from the UK. She also suffers from Epilepsy. It was a nice little conversation, simple and to the point, but it got the ball rolling for future conversations.

What a week.

Looking For Answers

Today I'm looking for answers to my severe mood shifts as of late.

Not many of you know but I have Type 2 Diabetes along with Epilepsy. This is probably caused by my medication causing me to gain so much weight, plus my eating habits as of late haven't been so good. I'll admit that sitting at home all day doesn't exactly lend itself to healthy eating.

Last week when I was feeling severely depressed my glucose levels were at 199, when they should be around 100-110. That most likely lender itself to my bad... extremely bad mood. Admittedly, I don't take my blood sugar everyday, which I should. But now that I know that it's been so high, I have no choice but to monitor it pretty closely. Hopefully, this is one of the main reasons I've been feeling this severe depression.