Epilepsy: Independence, Identity & Other Musings

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Independence. A word I dreamed of when I was too ill to go anywhere on my own. I yearned to sit in a coffee shop by myself, go to the mall, or most of all, take the bus to where ever my heart desired. I ached to be my own separate unit again, one that did not have to depend on someone to take me from point a to point b, and did not have to rely on my parents for rides to see my friends.

Our culture is based on being strong and independent. You must grow up, go to school, obtain a degree and find a good paying job so you can provide for yourself (and in the future, your family). Since I have been taking a break from school, I have been living in limbo and was stuck in a dependent lifestyle. Since it is so engrained in us to be independent, it was weird for me to tell people that I couldn’t take the bus anywhere by myself, and my list of activities where somewhat limited. This made me feel like somewhat of an inconvenient friend. Not that any of my friends said that, it was more so my head that told me that. Wow. Why am I getting so depressed? I actually have good news!

The past few weeks have been great! My seizures have gotten under control, and all those paragraphs were a dark rant up to this exciting news. I am now able to take the bus by myself, go to the coffee shop by myself, and go shopping alone. Point blank: I can do stuff by myself without having my mom or a friend nearby. I have been celebrating little victories every day. I have taken public transit at least 5 times now, which is amazing! I have also sat in the coffee shop and read my book, gone shopping, and chased after the bus. It sounds silly, but it felt so great! After I got on the bus I plopped down on a seat and sent the bf a text: “Just chased after a bus in gawd knows how long! Feels great”.

As I am able to do more and more by myself it feels like I am gaining pieces of myself back. I always knew who I was, but I was drowning in the epilepsy, and I was entrenched in the fear of seizures and who I was as a person living with epilepsy. I just celebrated my birthday and I feel like I am starting a new chapter in my life. Starting to regain my health is amazing, and I couldn’t ask for a better birthday gift. I feel like 2013 will be a really good year for me. I have learned so much in 2012, and I can just take what I’ve learned and tuck it into my back pocket for future reference. I also want to remember to stick by the epilepsy community, even though my seizures are better controlled now. Just because I am doing better in my health as of right now, I think it’s important to stay active in this community, because it’s a very warm and welcoming community. Everyone has shown me so much support through my tough times, and I want to be able to return the favour.  Hope you’re doing well! Love you all! xox

Back in Action Baby!!! 50th Post!!!!

Hey Guys!

So, I’ve been kinda MIA for the last week or so. Sorry ’bout that. I guess it’s been a combo of writer’s block and dealing with some other things. Usually I’m churning out ideas like there’s no tomorrow but I guess I’ve needed a  mental break. Oh well. I’ll tell you what I’ve been doing during my mental break. I’ve been doing workouts in my living room and holy geez! My thighs, legs, EVERYTHING! ACHES! Holy *&%^! I was also pretty stressed on Monday because of the Boston Bombing, and I accidentally clicked on some pretty graphic images. For those of you don’t know me well, I can be sensitive at times. So, I decided to just cuddle under a blanket and I ended up watching the Katy Perry documentary, “Part of Me”. It was actually really good! I’d never really paid much attention to her before but now I’m listening to her non-stop! Something about pop music is so inherently addictive.  You might think “Oh how ignorant! Watching a Katy Perry documentary on the day of the Boston Bombings!” But you know what, I need to take care of myself. Especially with seizures, managing stress levels is essential.

I also found a good post about how to keep your shit together when you’re depressed. Since my post about depression resonated so much with so many people I thought I’d share it! Not written by me, but I thought it was cool! Check it out people! http://www.diycouturier.com/post/47249603128/21-tips-to-keep-your-shit-together-when-youre

I also made the most AMAZING smoothie this week! It’s a Banana Chai Smoothie, and it basically consists of lots of spices and a Banana! It’s perfect if you don’t really like to eat a huge lunch, because it’s super filling! I put Peanut Butter in mine, so it thickens it up a bit. It’s pretty tasty to have after a workout or just in between doing this and that. If you like spicy food you will LOVE it. I guarantee it! Shout out to my friend Kat for giving me this recipe!http://www.choosingraw.com/banana-chai-smoothie/

Hope you’re all doing well! xox

katy-perry

Alternative Ways of Dealing with Seizures

There are so many alternative ways of treating seizures in addition to medication, it’s amazing. Do they all work? Of course not! But some may work for individual cases, and that is worth exploring.

I used to be sceptical of alternative approaches of fighting seizures. Since it wasn’t a little pill, what good was it going to do? Yet, after trying medication after medication, where my seizures weren’t going away, I began to broaden my horizons of what ‘medicine’ could mean to healing the body.

I’ve tried countless alternative methods of helping with the seizures: bio-wave feedback, acupuncture, massage, meditation, listening to calming music, to name a few. For this post I am only going to focus on a few of these techniques, or else it would be a very long blog post! None of these techniques are ‘cures’ for the seizures, but they make my symptoms feel less intense.

Listening to Music
The other day I got out of the shower and into my house coat and I didn’t feel quite right. This was probably because the shower is a stand alone shower so there’s less room for the air to come in and out. Some times too much heat makes me feel a little seizure-y, so I always make sure to take quick showers. Anyways, I wrapped myself up in my bathrobe and lay flat on my bed. I felt kinda dizzy (pre seizure symptoms) so I slipped on my ipod and listened to one song, over and over again. Somehow, listening to that song really helped. It just calmed me completely and I was able to get on with my day. I didn’t need to take an emergency seizure pill and feel groggy the rest of the day. In fact, I felt much much better.

Touching Pressure Points on the Face
This is actually meant to relieve stress, but since most of my seizures are caused by stress, it’s a great way to help me decompress if I feel like I am too tense. I was taught this by my acupuncturist: What you do is press (or tap) with two fingers above your eyebrows for fifteen seconds, then you move to your temples, and then you move to the fleshy bits below your eyes, and then you tap in the crevasse area under your nose. The last two parts are your chin for fifteen seconds, and then you tap the space between your collar bone. It sounds crazy, but trust me that I have done this when I have been completely stressed out, and afterwards I was like a deflated balloon. For a visual, visit this website: http://successwitheft.com/how-to-do-eft-emotional-freedom-technique/

Touching Pressure Points on the Thumb

My Acupuncturist taught me that if I apply firm pressure to the meaty part of my thumb (you know the part of your thumb where it looks like a drumb stick) it can help stop seizures. I wasn’t so sure about this technique at first. Sometimes I don’t even get enough of an aura to be able to control my mind and thoughts to be able to think in my mind “Okay, I will push the meaty part of my thumb right now!” But one night I was seizing up a little bit in bed, so I rolled over and applied firm pressure to my thumb with my other hand. The seizure feelings dissipated as quickly as they came. Okay, let’s take this a step further. Last night I didn’t have one of my medications because I wasn’t able to refill it in time. Every time I felt a seizure coming on- BAM I applied strong pressure to my left thumb with my right thumb for about thirty seconds or more. The seizure melted away. If it wasn’t a medication thing it would have stopped, but I was doing it through the night. Each time though it stopped the seizure! My acupuncturist told me that touching the thumb there is connected with seizure control, which is why it works. Cool, hey?

Massage

I’ve only tried massage once for seizure control, but baby it worked like a charm! The day before I had my massage I had a really weird aura, and the day I had my massage I was really concerned about having a seizure because I had a big event that I was hosting. Needless to say, after the massage, I was so much more relaxed, and it staved off the seizures that I was expecting for a few more days. I am planning a little trip in a month and I am definitely going to get a massage before my plane ride, since I am so sensitive to the pressure of the airplane. For some dumb reason the change in pressure of the airplane causes me to seize. So my game plane is to get a massage right before my flight and to take a couple of ativan as I board the flight. Not necessarily the ideal method, but I don’t like it when stewardess’ call 911 when I have a seizure! I have to pay for it every single time. 😦

Alternative Diet

My diet is kind of like a weird version of the Atkins diet. Except I’m not dieting. I eat a lot of protein, very few carbohydrates, no caffeine, and I am slowly trying to cut out sugar. (Cutting out sugar is the hardest!) I’ve read that altering your diet can be beneficial to lowering seizures, so I’m trying to see if this will help. Eliminating caffeine from my diet definitely has helped, and I think having less sugar will help, because I’ll have less high and lows in my energy swings. I mean, don’t get me wrong. I love sugar! It’s always weird being the one at the table saying that you won’t have any cake or pie. Just in the long run, I think it will help with the seizures. I’m not following the Ketogenic Diet to a T- (as I’m not on a diet) bit if you’re interested in the Ketogenic Diet, check out this link!

http://www.epilepsyfoundation.org/aboutepilepsy/treatment/ketogenicdiet/

My Epilepsy

Here is a wonderful poem from Astrid over at Astrid’s Words. I wanted to share this poem with you because it reflects where I am at in my journey, and she happened to put it together so nicely in poetic form. Please check out her poem, and explore her blog. Love you all! xox

Astrid's Words

As frustrating as it can be

I have to accept that it is a part of me

Wherever I may want to go

It is something that will show

My epilepsy

I have often tried to deny

I have often needed to rely

Help is a word I use

Help is something I cannot refuse

To me, many cautions apply

This is not the end of my life

It is something to live with, a strife

I will still be able to succeed

As long as I choose to proceed

Epilepsy, not the center of my life

These are words that were written when I looked upon my life with the aim to accept having Epilepsy. I looked upon how I felt about it, how it had been affecting my life and, also, how I wanted to move forward. One of the things that helped me to continuously move forward…

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Epilepsy and Depression: Two Taboo Subjects In One Go

So I’m going to hit you with two taboo subjects in one go: Epilepsy and Depression. Not really the most fun of my blog subjects, but hey it has to be done. I am well versed in both subjects, so I think I will be able to give a personal as well as a researched angle to the table. Please see the links below for more information.

Disclaimer

Okay, before I get going, let me just clarify a few things. First of all, I am not a doctor! I am just a young person doing research and speaking from my own experiences! I am only using two sources for this because this is a blog post, not a research paper! If you are having any difficulties with seizure control or depression, I urge you to see your neurologist.

Personal Tidbit

Last year, my seizures were extremely out of control. I could barely leave my apartment. When I did, I would have crying spells, and would have to leave class early. I denied that there was an issue though. I was going through a rough patch and that was it. People cried from time to time. I acknowledged that the individual episodes were a big deal, but I couldn’t see that overall the seizures were surmounting to a huge problem. I stopped going to the gym because I was exhausted. Essentially, a buried my head in the sand and tried to get all of my school work done, even though it was a struggle to get out of bed, and on some days I couldn’t even get to class. Thankfully I’m in the type of program where teachers tend to be more compassionate, and I had an advocate to speak on my behalf. I was furious when my mom brought up the idea that I might be depressed. There is no way that I could be depressed. Depression is something that happened to ‘other people’. Man, looking back on myself, that is the oldest trick in the book. Depression can happen to everyone. Furthermore, Depression can happen to people with Epilepsy; we are not immune to it!

Depression and Epilepsy-What is the Prevalence?

According to Kanner (2006), “Mood Disorders (MD) are the most frequent psychiatric comorbidity in patients with epilepsy (PWE) with a prevalence of 20-50%; the higher prevalence rates have been typically identified in patients with poorly controlled epilepsy”.

According to Asztely, Epilepsy continues to be underdiagnosed and undertreated. Like Kanner, Asztely also agrees that depression is also related to poor seizure control.

Depression During a Seizure

Depression can occur before a seizure. So, not immediately before, but maybe the night before or something like that. I’ve had that happen before. I was in my first year of university, and for some reason most of my close friends had gone home for the weekend. I was alone in my room, and when I slipped into bed that night I had this overwhelming feeling of sadness, like “I’m all alone”. It sounds lame, but when I woke up it was painful to walk. I ended up going to the doctor, and as  it turned out I sprained all my ribs on one side from a seizure in my sleep. Who knew that could happen?

Depression After a Seizure

If I have a cluster of seizures, it is extremely probable that I will feel very depressed afterwards. I will feel tired, sad, and even angry. If I fall, bang my head, or have to go to the hospital, I can’t help but feel sad. It’s natural. I will generally need a few recovery days if the seizure was intense, as my muscles can clench, and now that the seizure is over, it’s hard to walk around, because my muscles are so sore. Fear of having more seizures can make it difficult to go out, which can also add to the low mood. If  my seizures are not well controlled, I will be dealing with a dull sense of depression as well as the seizures, because my life has to be monitored extremely closely.

Failure to Treat Depression in People with Epilepsy

According to Asztely (2008), people with Epilepsy are not treated for their depression due to the belief that it could reduce their seizure threshold. Like I said, I’m not a doctor! So if you’re looking for more information, please check out the following links. If you think you might be suffering depression, please notify your doctor. Love you all! xox

For More Information Please Visit:

http://epilepsy.med.nyu.edu/living-with-epilepsy/related-disorders/depression-and-epilepsy#B

http://onlinelibrary.wiley.com/doi/10.1111/j.1528-1167.2007.01395.x/pdf

http://onlinelibrary.wiley.com/doi/10.1111/j.1600-0404.2008.01088.x/pdf

baby piggy

Tonic Clonic Seizures: I Really Need Your Help!!

So today was kind of a weird day. It started off normal, as these types of days usually do. I woke up to a gentle seizure, and although I was disappointed, I got on with my day and had breakfast and took my medications along with my iron pill. I drove around a bit with my for a bit, and at one point, she stopped for gas and asked me if I wanted to come with her to get some groceries. I figured ‘May as well just sit in the car. I’ve already had a couple seizures today.’ My mom told me that she’d get the groceries as quickly as possible so I wouldn’t be waiting in the car for too long. My seizures generally last for about a minute, so neither of us were too concerned.

I’d left the radio on, just to keep me company, and because I like the music on it. I was feeling “off” though. Some of the songs made me feel like I could go into that “seizure head space”. Basically everywhere I looked was triggering, so the music was just extra triggering. When one of my favourite songs, “Some Nights” by Fun, came on, I fell into a seizure. It wasn’t my normal seizure though. Both legs were pulsing non stop, and both hands were shaking, My face was funny, and I would have grabbed my emergency seizure medication if a) I had thought to have grabbed it and b) if I could have got my hands under control. I had motor control to turn the radio off, to see if that would stop the seizure, but both legs kept pulsing and shaking like crazy, and my hands were barely under control, so I turned it back on. I had my seat belt on, and I wondered if being constricted was making it worse so I managed to undo my seat belt but it did nothing. I reclined my seat but I just continued to shake and shake and shake. If I had been in a standing position I would have been toast.  It must have lasted at least twenty minutes. My seizures never last that long, so when my mom finally came back, I was barely able to explain to her what happened, because my tongue was all swollen. We went immediately to the hospital where I was treated.

Anyways, my point of this story is: Does this sound like a Tonic Clonic/Grand Mal Seizure? I have had about three of them in my life so I am not very familiar with them. I’m going to tell my neurologist about this, but I was just wondering if you have any thoughts? Oh, another important point, gross but crucial i didn’t wet myself as it says on the list of symptoms on clonic tonic Seizures. If you have any questions, feel free to ask. Love you all!  xox

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Young Filmmaker Gets Recognition for her Short Film on Epilepsy

Epillepsy-Watch it here!

I was scrolling through facebook this morning and came across this link. It’s a short film created by Ingrid Pfau, an Alabama School of Fine Arts alumna. Pfau’s sort film, intentionally spelt “Epillepsy” is a personal story about living with the condition, and it  has been named runner-up at The Neuro Film Festival in San Diego.

Ingrid Pfau, a 2007 Alabama School of Fine Arts and 2012 UAB alumna, won $500 and a trip to the screening in San Diego at the festival, which is presented by the American Brain Foundation to raise awareness and raise money for research into brain and nervous system diseases. Anyways, check it out! I totally related to it, and if you don’t relate to it, I’m sure it will give you a better understanding of what it’s like to live with epilepsy!

Love you all! xox