Coping With Epilepsy

When you are first diagnosed with Epilepsy it can be hard to know what to think. It could be overwhelming, cause confusion, make you afraid, and all sorts of reactions. When you first learn of this diagnosis it can be extremely hard to figure out how to navigate your new reality and what’s worse often it feels as if we must figure it out alone.  So to help you cope with your new or maybe even old diagnosis here is how I made peace with my diagnosis in a way that lets me live a full life. 

1. Create Your Own Support Network

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You may feel like you are alone right now, but you don’t have to be.  Try being open with a few close relatives or friends that you think you can trust to be understanding, open-minded, and empathetic.  Only you know who these people will be and it is okay to be picky. In fact, you should be picky. Epilepsy is often misunderstood and many people can be insensitive and cruel without realizing it.  I relied heavily on a friend I met in Junior High and we are still friends to this day. She was the friend that understood, didn’t judge, pushed me out of my comfort zone, and most importantly knew what to do if I had a seizure. Having her in my life made me feel normal.  The other was my mother for obvious reasons. The rest of my family was supportive but I relied more on mom for the support I needed on a bad day.

Is your family or friends not supportive or maybe even accusing you of faking? This is heartbreaking and I am so sorry. That must really hurt to not have their support right now. My suggestion to you is to try and connect with others in your area or online with a similar diagnosis. Facebook has a few epilepsy support groups and your neurologist may know of any local organizations or support groups that meet regularly that may be able to give you a bit of what you are missing.  

Another thing to consider is many who accuse loved ones of faking are just grossly misinformed about what epilepsy is and what seizures look like. Many think it’s what you see in the movies when it is anything but that. See if they would be open to having a discussion with you where you present information about epilepsy to them. The Epilepsy Foundation is a great resource to use for this sort of thing. You can look up questions together. You can show them what seizures look like. For help with this just see my post A Beginners Guide to Seizures.  Of course, there is always the option of taking them with you to the Doctor’s office so they can get the information from a reliable source.  If they don’t come around I am sorry and I urge you to find someone who will get it, even if it means making some new friends. 

2. Find Your Escape

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I am not going to lie to you Epilepsy is hard. There will be times that everything seems hopeless and that you may even wonder what the point of breathing is. Epilepsy and Depression sadly often go hand in hand. It can be isolating and if you aren’t careful you may find yourself so consumed with what you can’t do that you lose your ability to be happy. This is why you need to find your escape or what others may call your happy place. 

A place or thing you can retreat to that makes your heart feel warmer and help you reconnect with who you are and can help you forget your trouble even if it is only for an hour. For myself, I retreated to the world of books or writing a poem or story. While in these fantasy worlds I didn’t have to worry about seizures, medication, or doctor’s visits. It gave me a brief reprieve and if I hadn’t done that I may never have gotten through the hard times. 

So what makes you happy? Is it a place, taking a walk, baking, scrapbooking, or whatever. Whatever it is that you enjoy doing or being at use that. Use that as your escape. Make it the thing where you are allowed to forget your crappy diagnosis and when the next seizure might strike for just a short while. 

3. Have Something To Strive For

It’s important you don’t give up on your future. It’s good to hold on to your goals and dreams. I won’t lie to you and tell you it will be all honky dory, but you have to keep trying. It will be hard. In fact, you will probably have to work about 50 times harder than everyone else. You will face unfair circumstances and setbacks completely out of your control, but keep trying. 

As a teen, I knew I wanted to write, have a family, drive, play in the ocean, do something with my life that meant something. For a while, it seemed it would never happen. My family went on vacation as a teen and I got to play in the ocean. My doctor may have disapproved, but we took precautions. I was attached to a flotation device and always in my parent’s sight so they could easily look up and see I was fine. My brother on a couple of occasions and my friend I mentioned earlier on another were there in the water with me and I was safe the whole time. 

My point is that just because you have been dealt with this sucky hand in life doesn’t mean you can’t have the life you want. It may take you longer. You may have to take some extra safety precautions but you can do it. If an Olympic athlete was able to become a pro with epilepsy why not you? If Lil Wayne and Prince were able to make their music dreams come true with this diagnosis why, not you. Don’t let this stop you. If anything let it be the reason you try harder!

4. Take it a Day at a Time and Be Ready

Lastly, you need to know it’s okay to have bad days. It’s okay to take a couple of days after a tonic-clonic seizure to recover. It’s okay to be grouchy some of the time. It’s okay to still try and live your life, but also be ready. 

If you are going out to live life be sure someone going with you or you are meeting knows what to do if you have a seizure. If seizure control is a real problem for you it may mean being open with potential employers even though you aren’t legally required to disclose anything. This is a personal choice only you can make and be warned it isn’t uncommon to face discrimination in the workplace after you have a seizure there or if you choose to be open about it. Just know that if you can provide proof of discrimination in the US at least you might have grounds for a lawsuit. 

Also, be prepared for some of the scarier medical options out there. Be prepared to have a few tests run. Don’t be afraid to ask about surgical options or even dietary options. Medication isn’t right for everyone and there are options out there. They may seem scary, but if at the end of the day if your seizures improve or you find control isn’t it worth it?  

Don’t be afraid to drill your doctor with questions and ask why they want to do something. If you feel your doctor isn’t listening to you then it’s okay to seek a second opinion. This battle will be so much easier if you have a doctor with a good bedside manner who knows how to listen to their patient. 

HOW TO TELL IF YOU SHOULD FIRE YOUR DOCTOR!

This journey won’t be easy but it can be done. If you want to be open with your new or old diagnosis and help spread awareness check out some of our cute epilepsy awareness wear here! 

Living With Epilepsy

Epilepsy is one of those invisible illnesses and because of that, it can be hard to understand what someone who lives with it on a daily basis goes through. It can be especially hard for someone to understand how hard it is for those with epilepsy if the person with this condition is able to lead a productive life. To help show the hardships of Epilepsy I am going to share a bit about my journey and its impact on my everyday life.

I had my first seizure at the age of 2 in a shoe store. My mother has regaled me with that story many times, although I myself have no memory of it. It was because of this seizure that for a time I was put on the medication phenobarbital. A seizure medicine that most doctors avoid today because of the nasty side effects. I don’t have any memory of the time I was on this medication but I do know how taking this medicine affected me. This medicine caused me to fall woefully behind my peers and learning became very challenging. I remember struggling in school and trying so hard and not seeing the results I wanted from my hard work. My hard work and studying produced C’s and B’s and rarely did I achieve an A. This, of course, caused me to have a low self-esteem at such a young age I felt I must be stupid. I had no way of understanding that my falling behind my peers wasn’t my fault. I had no memory of my hardships at age 2.

I managed to stay seizure free for some years before I was officially diagnosed, but it wasn’t till years after my diagnosis that we began to suspect I had been having absence seizures all along. I am told that there were times they would look at me and say it looked as if I had checked out and then all of a sudden I was back. At the time we didn’t know such seizures existed, but its impact on my life was great. I missed homework assignments and key information during lectures at school. We think this is part of the reason I struggled so much in school. I was simply not getting all the information and was doing my work with less information than anyone else. It also had an impact on my relationship with my grandmother.

When I was a child I would often go to my grandparent’s house for a couple weeks in the summer while the rest of my family would go on a church mission trip that I was too young for. It was during one of these visits that my grandmother began to become very irritated with me. She thought I was ignoring her. When she yelled at me (only once, she had real patience) I was clueless. I didn’t understand why she was angry or why she thought I was ignoring her.  It was new information to me. She died from cancer before I was officially diagnosed with epilepsy and we now believe I had been having seizures while there. I wasn’t ignoring her I just wasn’t there during some moments when she was talking to me.

I was officially diagnosed with Epilepsy in 8th grade. The year before I had been bullied and this year seemed to be going much better. It was at this age that I met my good friend who I am still friends with today. We’ll just call her Brianna for now. (This is not her real name. I am changing it for her privacy.) This seizure problem wasn’t what I needed at such an awkward age. I was already insecure and add a seizure problem to that and the feeling is indescribable.

I was left with an intense desire to be normal. I tried to downplay my seizure disorder. It was awkward having to inform all my teachers and the school of my problem. It was all made worse as we began to experiment with different anti-seizure medications. Many of them had horrible side effects. Many of them caused me to become dizzy to an extreme. Often the room was spinning or I was seeing double or triple.  So reading a simple textbook proved to be an extremely difficult task. My hands were constantly shaking. It was because of this that I could no longer enjoy origami or learn how to knit. My hands were just too shaky for me to do any of that.  Even painting my nails was challenging.

Some of the medications had an effect on my mental state as well. Many of these drugs caused a deep depression. I went from a girl that loved playing with her cousins at family reunions and holiday parties to isolating myself in a room by myself. I just couldn’t motivate myself to go hang out with people I cared about even though I really wanted to. It made it difficult for me to process new information and retain it. Because of this, my grades dropped to C’s, D’s, and F’s. I was trying but I just couldn’t remember anything. So eventually I gave up. While on a drug called Topamax often nicknamed Dopeamax I found myself unable to communicate.

This was made clear through my writing. My writing was of a mature girl with a wide vocabulary, but when I actually spoke I couldn’t even tell you the plot to a movie I just watched. It was like being trapped in my own head and was maddening. I felt trapped and there was a time I even became suicidal. What we didn’t know then is that it wasn’t uncommon for those with Epilepsy to experience Depression or even suicidal thoughts.  I didn’t want to give my family anything more to worry about so I kept these dark feelings to myself. It is truly a blessing I am still alive today and that I never followed through on my dark desire to die.

Things became more difficult socially as well. From having to constantly explain what epilepsy was to trying to tell someone what a seizure was a like. A question that we struggle with because many of us don’t remember our seizures and the ones you can remember are very difficult to describe in a way that would give someone a good understanding. I also dealt with a fair share amount of stigma as well. I had someone tell me I must be possessed. Someone else told me I must not really believe in God and then continue to try and convert me. This was annoying as by that time I had given my heart to God and had been raised in the church.

It meant I couldn’t participate in a lot of activities others take for granted. If I wanted to go swimming in a lake with friends I first had to convince my parents it was going to be okay. Many epileptics are told not to swim in dark water, but I have always refused to let my condition dictate my life. I couldn’t scuba dive on vacation because it was too dangerous. There was a lot I was told no to and it was a bit like living in a bubble. It was especially hard on me when I watched all my friends learn to drive and I was stuck being a pedestrian as those with uncontrolled seizures are not allowed to drive by law. How long you have to be seizure free varies from state to state.  It was hard when at 6 months pregnant with my oldest child my husband wouldn’t let me pick him up from a work-related trip ( my seizures were well under control at that point). I instead had a friend drive. I loved the time with my friend, but it was a reminder of worse times in my life and having that decision taken from me broke my heart. This is a distant memory now and we worked that issue out and became stronger from it.

Having epilepsy made finding a job difficult. My first job at 16 I was doing well. It was at a movie theater that no longer exists. I was often scheduled during busy shifts and they seemed to appreciate my work at the concession stand, but then I had a small seizure at work. Everything changed. I suddenly was scheduled during dead hours on the creepy side. I was followed everywhere, even to the bathroom, and gossip began to circulate. Some I had begun to make friends with suddenly ignored me. I walked off the job one day when all the mistreatment became too much. My walking off the job was preceded by me crying in a closet for an hour.  Trying to figure out whether to disclose your condition is equally challenging. By federal law, they aren’t supposed to ask or allow something like that to affect their hiring choice, but when I didn’t have controlled seizures I did share this information.  I lost jobs because of it and even was given a job I wasn’t qualified for because of it.

Having this condition before legislation was passed to protect people like me with a pre-existing condition caused me a great deal of debt. It was one reason that for some time I didn’t continue in my education to get a bachelor’s degree. My medications often cost hundreds of dollars. There was even a point in time that I would pay over a thousand dollars for medication. When I lost insurance from work finding suitable insurance was impossible. All companies said they would cover everything except my epilepsy. Because of this problem living on my own was impossible and I lived with my parents until I met my husband. With medical debt and the student debt from earning an associate’s degree finding my own place wasn’t affordable.  While legislation has helped many like myself there was a period of about a year where my husband and I had no insurance as we were one of the few that fell in between the cracks. It was during this period I went without meds and was basically a ticking time bomb. I was fortunate and didn’t have any seizures but just the same I avoided driving during this time. Fortunately for me, I was pregnant during this year and one of the chemicals released in the body during pregnancy is known to help control seizures. We believe my pregnancy and breastfeeding actually kept my seizures at bay. I even continued to pump breast milk for some months after we discovered my baby couldn’t drink my milk.

The worst of it all is living each day wondering. Wondering why paramedics are staring at you and why you’re on the floor. Waking up and wondering why you are on the floor and your tongue is sore. Wondering why you are in a hospital bed. Wondering why your lying in a bathtub with the shower on and only realizing a few hours later what happened. Then awkwardly telling someone you had a seizure. Wondering if it’s your fault as your child seizes in your arms. Wondering what life would be like if you didn’t have to choose between seizure control and depression. Wondering when your next seizure will be. Wondering if the next seizure will be the one that kills you. Yes, by far the worst is all the wondering you can’t help but do.

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A Beginner’s Guide to Seizures

A Beginners Guide to Seizures

 

When most people think of epilepsy or seizures they think of those big seizures that they see in movies or television (a very inaccurate picture by the way). You know the scene where some actor or actress falls to the ground, starting foaming at the mouth, and begin to shake on the ground. While this does represent one kind of a seizure it is important to know there is more than one kind of seizure and if you aren’t informed and know how to spot them then you may not be able to get the help someone may need. So below is your quick guide to seizures. We will save the kind you probably already know for last.
 

Absence Seizure

The absence seizure is by far the hardest to spot. (Note the person in the video is not me. I found this on YouTube) We theorize I had been having these for years before I was officially diagnosed. We had no idea I was having them. A person having this kind of seizure mentally checks out for about 15 seconds. It is not unusual for a person with these to have over 100 in a single day. When you add all those up you can understand why this might be a problem. There is all this lost time you can’t account for. Because of this kind of seizure my school grades suffered tremendously. I missed key parts of the teacher’s lesson, homework assignments, and teacher’s even thought I was ignoring them on occasion. I went from a B student to barely being able to maintain a D. I was missing so much of my classes that I just couldn’t keep up. I would literally cry over the homework I couldn’t comprehend or be in tears when I found out I was missing a whole slew of assignments. So if you look at a person and their eyes just seem empty, like they aren’t there, and seconds later they are back to “normal” it is possible they are having absence seizures. Ask them if they have seizures or if they heard what you said. It’s possible they aren’t aware they are having them and you could be the reason they go get checked out and receive the help they need.

Simple Partial Seizure

The simple partial seizure can throw someone off when they see one. During this one the person having the seizure is conscious and in many cases can talk well enough to tell you what is going on. They may be a bit shaky, sweaty, and their emotions may even be altered a bit. Afterward, it isn’t unusual for them to be tired. They will most likely just want to go home after one of these and unless this is a first seizure for them it shouldn’t be necessary to call 911. Instead, call a family member or friend who can come pick them up and take them home. The epileptic’s first priority is always resting as seizures are often exhausting. They will talk to the doctor at their earliest convenience and any tests or changes that need to be made will be made. The above video shows an actual simple partial seizure.
 

Complex Partial Seizure

Complex partial seizures look similar to the simple partial but affect a larger portion of the brain. Because of this the person having this kind of seizure isn’t really conscious. They may continue to stand but mentally they aren’t there. When I had these I was often confused afterward and emotional. I would usually a need at least 24 hours to recover. The above video shows a complex partial.
 

Atonic Seizures(Drop Seizures)

This one doesn’t long about 15 seconds. It is just a brief loss of muscle tone which causes you to fall or for your head to drop. Thinking back on it I had these and didn’t realize it. I just chalked it up to my clumsiness. Just make sure they are okay and help them back up.

 

Clonic Seizure

Clonic seizures as seen in the video above are known for their rhythmic jerking. This would be the main symptom and this kind of seizure is much rarer. These can typically last one to two minutes. The jerking here is more regular and sustained than a myoclonic seizure. For this make sure there is nothing in the way they could hurt themselves on and when the seizure ends roll them onto their side. Call a loved one or friend to come to get them. This person will know whether a hospital trip is necessary or not.

Myoclonic Seizure

Myoclonic seizures are very brief and are the short contractions of a muscle group. Like the arms as pictured in the video above. Just wait patiently for the seizure to end, check to make sure they are okay when it’s over, and contact a loved one or friend to come to get them.

Tonic Seizure

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These seizures are characterized by a stiffening in the body. They don’t usually last long and don’t usually need first aid unless they lose consciousness. You will want to make sure that someone who knows about their condition knows, but if they are an adult they may very well be able to handle things on their own. Although if you ask how you may help they won’t mind.

Tonic-Clonic/Gran mal Seizures

These are the seizures you may be more familiar with. The video above pretty much covers it all. The person may be very tired and will want to sleep after. Please don’t call 911 unless absolutely necessary as stated in the video. Doing so when it is not necessary will just keep them from getting the rest they need!
 
There is your crash course on seizures. Hopefully, you are more prepared to spot one and help if necessary. November is Epilepsy awareness month. Share this to spread awareness and wear purple in November to show support! Warriors with A Pen will be selling Epilepsy Awareness Swag in the near future! Please like our Facebook page or keep an eye on our website to be the first to know when they are for sale!