I am A Fatigue Fighter: Battling Side Effects of Anti Epileptic Drugs

550131_425393197537643_1221104998_nAs a person living with epilepsy, I not only fight seizures, but I fight fatigue. And I fight fatigue with a mighty vengeance, baby. You’re probably wondering why I’m so fatigued. Well, I’m on a lot of Anti Epileptic Drugs (that’s just a fancy way of saying medication, but I kinda like Anti Epileptic Drugs. It sounds fancy!) and a common side effect of all of them is fatigue. So I can easily have a solid eight hour sleep and still feel tired throughout the day. It’s not the kind of tired where it’s like “Oh, a little coffee could cure this!” It’s the kind of tired where you feel like you could fall into bed and sleep for hours. And hours. And HOURS. But the thing is, sleep does absolutely nothing to fix this side effect. In my opinion, it just makes it worse, because you’re throwing off your sleep cycle even more. I’ve found that the cure for this is constant activity, even if the activity is meditation. So yesterday, I took my theory to the test.

I woke up bright and early to the most obnoxious alarm. I rolled over and turned it off and was somehow meditation_2able to hop out of bed. I had a to-do list to complete so I had to get moving! Usually I stay in my pj’s for about an hour while I eat breakfast in bed and listen to my white noise (as prescribed my biowave feedback doctor) and cruise facebook. Oh my gosh I can’t believe I am telling you my morning routines! Oh well. Anyways, I got dressed, put my laptop on my desk, and opened it up. Since it was Valentine’s Day I sent a little message to my boyfriend, who was already hard at work. Then I said good morning to the ‘rents, and decided to follow through on my New Years goal of meditation. I set up my yoga mat (parallel to my bed) and meditated for twenty minutes! Twenty minutes! Go me!!

Then, to keep the energy levels up, I turned on Songza and listened to this playlist http://songza.com/listen/bigchampagne-s-ultimate-chart-BigChampagne/. There is something about dancing alone in your room that is both liberating and ridiculous. It did its job though! It kept the energy levels up! I remember when I would be studying for exams and I couldn’t take it anymore I would take a little dance break in my room. Ha. It’s funny what memories come back to you. (Gosh, that makes me sound old. That was only a year and a half ago). I’m technically still a student! Just on medical leave!

Since my energy levels were still up, I took my little dog for a little walk. We didn’t go out for long thought because the weather was crapola. We still got it accomplished!

The last thing on my list was to make cupcakes. I figured that since it was Valentine’s Day, it would be a nice thing to do.

cupcakes-on-cupcakes
A random pic

I was talking to my cousin on Facebook a couple of days before, and let me tell you, she is a fabulous baker. She had made a facebook status “Cupcakes In The Oven” and I couldn’t resist commenting. I love cupcakes. There is something about them that are so cute and delicious- needless to say. Since I have gotten in touch with her,  it made me wish that I was with her, baking. So even though we couldn’t bake together (due to distance), she shared the recipe with me so I could try it out myself. I didn’t anticipate the cupcakes to turn out as well as hers, but it was something to do right? Oh my gosh, I must have spent about 2 hours making the cupcakes  and then the frosting. I’m not used to making cupcakes and frosting from scratch!  My dear Cuz-how do you do it?? Do you get sore from standing for so long?

Soo let me tell you. The cupcakes didn’t turn out that great. They could have baked for about ten more minutes. They were baked, but they could have been better. But the activity in general was fun, so that’s what counts! (See link at bottom of page for recipe)

Other than that, I watched so How I Met Your Mother on Netflix-Season 1 “Nothing Good Happens After 2pm” and had a good Skype chat with my boyfriend. By the way, How I Met Your Mother is my new obsession. I watched it when it was popular, but for some reason it’s the perfect show to watch when you just want to watch 22 minutes of TV.

Also, since I had NO caffeine, I had the most amazing sleep ever! I have been having some problems sleeping lately, but I rolled over and fell asleep quite quickly! Maybe it’s the combination of the mediation and the no caffeine! I am having a tea as I write this, but maybe if I keep this up, it will help.

Do you have fatigue as a side effect of medication? Do you have other side effects? I’d love to hear in the comments! Love to you all!

Recipe for Cupcakes: http://cookingwithamy.blogspot.ca/2006/05/strawberry-cupcakes-recipe.html

VLUU L100, M100  / Samsung L100, M100
The cupcakes I made!
Advertisements

16 thoughts on “I am A Fatigue Fighter: Battling Side Effects of Anti Epileptic Drugs”

  1. Oh the tiredness of Carbatrol!!! And my seizures are just these tiny things no one sees. I asked my doc what the studies are for long-term effects. He said, “You’re it!” Been on the drugs for thirty years. I wonder what energy feels like some times.

    1. Haha oh yes I know what you mean Harold! I am on that drug as well! Do you drink caffeine or do you restrict your intake? Do you have other little tricks that help you get through a tiring day?

  2. Hi Sita – yes definitely up for promoting each other’s posts – think it would be good for everybody with epilepsy!

    I have soooo many side effects from my meds and from epilepsy in general (luckily not tiredness or finding it hard to sleep). Mine are bad memory, weight loss (though not as bad as when I was on another AED – I was literally skin and bones then), slightly slurred speech, and I guess slowed down reactions in general. This is why I have found getting a job so difficult, because I find interviews so hard (you have to take everything in straight away and give an instant, verbal reaction). I’m going to post about how my interviews went in my next post when I get a minute.

    I’ve also found that, like many other epilepsy sufferers, I’m vitamin D deficient as a result of the AEDs. I still don’t think that I’m taking enough vitamin D – I usually top it off with Actimel, but, for example, I ran out of Actimel about a week ago and now I’m ill! 😦 I’m seeing my neuro on Weds so will ask him about the possibility of increasing the dose then…

    1. Hi Kate,

      Great! I will promote your blog in one of my next blog posts! I think the people who read my blog would also be interested in reading yours as well!

      Aw man your side effects sound terrible! My side effects have been mostly manageable for daily living, and I haven’t really had any problems with employment due to them.:( I would definitely be interested in reading more about your experiences with employment and job interviews in a blog post when you get some time.

      I also read your post about Vitamin D…I’m sorry to hear that your ill! I hope you feel better soon!! I also hope that your Neurologist increases the dosage of your
      medication.

  3. Baby,

    I love that you are finding ways to cope with fatigue. Doesn’t surprise me at all that you’re kicking its ass. Ways you are doing it too is so healthy…things you enjoy doing, things that make you feel accomplished, and little treats too 😀

    Miss you

      1. not at all! it was really nice to find someone who was trying the same things as me to manage! Was very impresssed as you are obviously taking it really seriously and I think it really helps for people to know how others manage their health! keep up the good work – I look forward to reading many more posts! 🙂

  4. Hello,
    How is your meditation going? I began some relaxation techniques for pain management, haven’t got the hang of it yet! I got very fatigued on gabapentin based medications, hopefully some relaxation techniques can help me lower the dosages. I hope you’re feeling energetic soon! 🙂

    1. Hey there!

      The meditation is going pretty well! I was doing really well until my boyfriend visited from out of town and then I kinda fell off the band wagon. I have picked it up again and am meditating every night for twenty minutes before bed (using a guided tape). I think the trick is that there’s no “getting the hang of it”. Just sit and feel your breath, and don’t be judgmental if you start thinking of irrelevant thoughts. Keep at the meditation though! I know it does amazing things! It would be great to lower medication dosages too eh? That’s what I’m hoping to do too! Let me know how it goes with the meditation!:)

  5. Sita…odd that word popped in my head yesterday. My goal today is to stay awake (despite the fatigue side effects). Since my bout with breakthrough seizure, the constant sleeping helps me withdrawal. I’ve been meaning to get back into yoga. I have a bucket full of excuses as to why I haven’t returned to it. Right now my world is spinning and I can only watch. Congrats for your achievement. Gives me hope that if I stay positive I can get myself back on track.

    1. Hey Amy! Thanks for the response! Trust me…I know you can do it! My seizures are not fully controlled but I just try to take things one day at a time. Make sure to pat yourself on the back for little achievements! Yesterday I went for a walk by myself (which can sometimes make me nervous) and then did some shopping in a crowded and busy mall. Hey I’m not an Olympian but I’m getting back to my baseline…one little snail slide at a time. You are totally capable of it too…and when there are bad days…just remember: it’s one day out of your entire life. This too, shall pass. xox

      1. Thanks for the encouragement. Made me smile. Nice to know there is someone out there who understands. If it weren’t for my mom’s compassion and sacrifice for me, I would not be speaking to you. At least I can share that I stayed awake yesterday (with help of some caffeine) and know that you would understand it being an accomplishment where other family members have been so negative. I slept most of this month away. I am scared to walk alone. I guess this is the first time I admitted it. When no one (other than my mom) understand that is a precursor for doing things…living can be seen as a nuisance. Breath, continual patience, belief that if people were better educated I wouldn’t have to fear. As you said, a little snail slide at a time. Makes me think of that Fiona Apple song “Extraordinary Machine.” Think you.

  6. Hey Amy,
    So sorry for being slow to reply to your comment. I completely understand where you are coming from…it’s so hard isn’t it?! I definitely feel that if there were more knowledge about epilepsy it would be easier to live with seizures. I always educate all of my friends about proper first aid and basically what seizures are, Maybe they pass that information along to other people! I don’t know for sure though.My best advice would be to just keep going…and don’t give up. You have so much to offer and never let this condition rule your life. (Even though it feels like it, and I totally get that!). If you ever feel like your epilepsy/seizures are taking over your identity, maybe write a list of why you are awesome, I did it for myself and it really helped a lot. Feel free to stay in touch.
    -Sita 🙂

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s