My Little Black Book

So close, but so far..

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So I keep this little black book as my “possible” seizure diary. I do not normally keep one for my tonic-clonic seizures since they happen infrequently compared to when I was first diagnosed. I say possible seizures because they do not know yet if they are actual seizures. I have these myoclonic jerks almost daily that increase in frequency before my typical tonic-clonic seizures – so people around me tell me. To me, they happen daily so I do not notice them increasing and when I do i chalk it up to something else going on in my life. I, for the first time, went three days without a jerk. I was so excited. Then my brain decided to remind me it was part of my body and whoops, I only made it two days – which for me is still an improvement. Since the Keppra they decreased in frequency, so “go Keppra, go!” So did I lose anyone yet?


What is a Myoclonic Seizure?

Myoclonic seizures are brief jerks of movement, almost like a shock, that involve a muscle or group of muscles. They do not typically last longer than 1-2 seconds and can happen as a single episode or multiple episodes. People without epilepsy can actually experience these with hiccups or a sudden jerk before nodding off. In epilepsy, they can cause abnormal movements in both sides of the body; usually in the neck, arms, and shoulders. The person is conscious and aware of what is going on. These usually begin in childhood, but again can occur at any age. These seizures are often overlooked because they are tossed up as tics, tremors, or as the person being clumsy.

In my experience, now I am not officially diagnosed, these “tics” come randomly. I have had them before my tonic-clonic seizures and before my diagnosis. I am aware and conscious when they occur. I only have had single episodes at a time, but sometimes more than one episode a day. My head, neck, arms, and sometimes upper body/chest is effected and jerks. My head will turn to the side, my arms will sometimes contract in or move upwards, and my upper body will shake. I can feel my body get tense when it occurs and I cannot stop the “tic.”

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Can you have two different types?

Yes! As unfortunate as it may sound, it is perfectly possible. Some people will have seizures that change with age and puberty and others can have multiple types. Now, I did not start having tonic-clonic seizures until after a car accident where my head suffered a laceration needing staples. It is plausible I may have had a seizure disorder before that and perhaps the car accident changed or brought on new seizures. While nothing is definite yet, I have a gut feeling the neurologist is going to lean that way, especially with the frequency and that it happened before I suffered any head trauma. I am not the happiest person ever when I got the news but it could be worse, right?


      Do you have myoclonic seizures or more than one type of seizure in your diagnosis? Comment below and tell me about your story!

Seizure First Aid: How to Respond

What do I do?

       Watching someone have a seizure can be terrifying. They can happen to anyone, at any age, any time, at any place. Would you know what to do?

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  • Airway & Breathing: If you see someone having a seizure, check their airway and breathing. Make note if they are struggling to breathe, if there is blood or drool/foam coming from the mouth, and if they are vomitting. You want to make sure they have a clear airway through this process. While you may not be a medical professional, an easy way and a huge help is to place the person on their side. This allows fluid to drain out of the mouth and keep their airway clear. Some people vomit during their seizure so it is extra important that if you have any uncertainty on what to do, place them on their side.
  • Remain with them for the entire duration: Unless you have someone else there or can get someone else there, do NOT leave them during the seizure. Some types will cause people to completely lose control of their body and consciousness. It is also important that if you saw the seizure begin that you remain or pass on information to the next person so they can get an accurate depiction of what happened.
  • Time the seizure: As soon as you notice someone is having a seizure, make note of the time and when it is over, note what time is ended. This can be very beneficial to the person and medical professionals. If a seizure lasts over 5 minutes – call an ambulance; they need medical assistance and could result in a medical emergency.
  • Prevent Injury: You want to try your best by helping the person avoid additional harm. Move hard objects out of their way, if they are not on the ground already (and depending on the type if it makes them a fall risk) – lay them down on their side or sit them down, loosen tight clothing around the neck, and cushion their head if possible. Do NOT place anything into their mouth as this will cause harm. Do NOT  restrain or hold the person down as this could also cause harm to the person or yourself.
  • Remain Calm: Easier said then done but it is important for you as a caregiver to remain calm. Take a few deep breathes for yourself and focus on getting through each second and each minute until the person comes to. You do not have to call 911 unless the seizure is over 5 minutes, the person is injured in the process, person has back-to-back seizures, not waking up or regaining consciousness after the seizure, or there is another underlying issue that requires emergency personnel.
  • Be Supportive: After a seizure a person may become embarrassed, scared, worried, anxious, distraught, confused, disoriented, tired, or emotional. It is important to listen and remain with the person until they are fully aware and feel safe. If you cannot stay with them, be sure to call someone to be with them during this time. For some types of seizures, you will have to explain everything that happened to the person since they will not remember. Remember: be patient.

Helpful Tips

  • Look for a medical alert band. Not every person will have one but this is an important device with the person’s name, condition, and medication. Some bands will also have contact information – if able, be sure to contact these people to make them aware. If someone is having a seizure and does not have an alert band – if you feel uncertain, call 911 as this may be their first seizure.
  • If this is someone’s first seizure – take them to the emergency room. There might be an underlying condition associated with it and it will give a baseline to their neurologist and physician.
  • Do NOT give the person food, water or pills (basically anything by mouth) until they are fully awake and alert and orientated. This becomes a choking hazard and sometimes can even send food and water into the lungs and cause other issues. How do you know if someone is alert and oriented?
  1. What is your name?
  2. Where are you right now?
  3. What year is it? What month is it? What day is it?
  4. Who is the current president?

     Hopefully you found this helpful and pass it on to your friends, family, and peers!

Remember; education is key.

So, what is it like?

What does it feel like?

     For a while, I thought I was the only person who was genuinely curious on what it felt like to have a seizure. My brother could not express himself and it was always a mystery to my parents and myself. Many years later here am I experiencing them for myself! Of course, there are many different types of seizures and even if two people had the same type, they may not experience them the same. Here is a little look into what I experience.


Tonic-Clonic Seizures

      My Epilepsy involves Tonic-clonic seizures. These are the types of seizures most people visualize when you first tell them you have a seizure disorder. To be proper; the tonic phase comes first which is when all the muscles stiffen and air can be pressed past the vocal chords making a moaning sound or a cry. In this phase we lose consciousness and immediately drop to the floor and bite our tongue, cheek, drool, and faces sometimes can become blue. But before this occurs, some people may experience an aura – some type of indication a seizure is coming. This could be a sound, smell, taste, feeling “strange,” headache, dizziness, and so on. Then comes the clonic phase; arms and legs begin to jerk rapidly in a rhythmic motion and here is where some of us may lose control of our bladder (or bowels) as our bodies begin to relax and consciousness returns.  On average, these seizures can last 1-3 minutes; anything over 5 minutes is considered an emergency and the person should be brought to the hospital. This is then all followed by a postictal phase which can last from 5-30 minutes on average (sometimes longer). We are tired, we are confused, and we are disoriented.

     Now here is my personal experience and how a typical seizure occurs for me. I will be completely fine all day, going about my daily routine. Suddenly, my mind stops and everything is black. If I am talking I stop mid sentence and let out a moan, if I am quiet I stare blankly. People will begin to call my name and I will not respond, nor will I remember. I then let out a scream (more like a shrill from what I have been told) and instantly fall to the ground and begin to convulse. Typically my seizures last 3-5 minutes which always ends in an ER trip. I never have lost control of my bladder or bowels, but I have bitten my tongue pretty bad and usually have blood on my face. I will slowly begin to regain consciousness and will try to make sense of what happened. I will not remember your name, but I will remember your face. Then everything gets black again. I am not seizing, I have just passed out. Sometimes I think everything is black but I am talking and responding as if I am fine. I am not fine. Do not leave me alone. I will not remember this. This happened once and I did in fact end up seizing again, which was atypical, and resulted in a medicated coma. Eventually, I truly do regain consciousness and slowly become reoriented..but I have no idea what happened before that moment, the day is wiped from my memory, and the entire week is fuzzy. My memory will still be effected over the next few days and I go into an emotional funk. Anxiety now controls my mind as I try to continue on as if nothing happened. This is my  life with Epilepsy.

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(Photo and educational credit: www.epilepsy.com)


If you have tonic-clonic seizures, leave a comment below and share your experience!

Get informed, get involved!

      Thanks to websites such as Google, we literally have access to any type of information we want. Not all information may be good information and not all information may be credible. If your new to Epilepsy or yourself or loved one just had their first seizure, below are a list of credible websites I found to be personally helpful helpful along my travels.

 


Feel free to leave a comment below of websites that you found personally helpful and I will add them to my list.

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(Photo credit: http://blog.livlane.com/2013/07/angel-notes/)

Myths vs. Reality

These are real accounts that I have had people say to me.
I will apologize now for these people.

Myth: “You’re going to bite your tongue off!”
Reality:That I will not, and that you cannot. While I have bit a small piece off, my tongue is still attached and usable. It is physically impossible to bite your tongue off during a seizure.

Myth: “Epilepsy is contagious”
Reality: Epilepsy is NOT contagious; this is not the flu or chicken pox. This is a neurological condition.

Myth: “If you did not get seizures in childhood, you are not going to get them when you are older” 
Reality: Oh reallllyy. I started my seizures at 19; not quite a child. Seizures and Epilepsy do not discriminate. Any age and race can be effected. To quote the Epilepsy Foundation, “seizures start for the first time in people over the age of 65 almost as often as it does in children.”

Myth: “Should we buy a tongue blade or something to stick into your mouth?”
Reality: Epilepsy 101: Do NOT stick ANYTHING into a seizing person’s mouth. You could very easily chip teeth, create a choking hazard, cut gums, and if you are really trying to place it in there – break someone’s jaw. I was so amendment about this I voluntarily gave a little speech about it in my college lecture. Just roll us over to our side, loosen our clothing around the neck, rid objects that are around us, and if possible cushion our heads.

Myth: “So I should try and stop the seizure. Should I bear hug you?”
Reality:  Epilepsy 101 pt. 2: Do NOT restrain someone while they are seizing. You could cause injury to the person and yourself. Remember: we do not have control over our body due to a misfiring of neurons. We cannot just “stop” ourselves

Myth: “At least you won’t die from it” 
Reality:  While yes, death in epilepsy does not occur often; there is a condition called Sudden Unexpected Death in Epilepsy (SUDEP). Every year 1 out of 1,000 people die from SUDEP in those with controlled Epilepsy. Those who do not have their Epilepsy under control have a risk of 1 in 150. It is actually the leading cause of death in young adults with uncontrolled seizures (Find out more here: http://www.epilepsy.com/learn/impact/mortality/sudep). Those with Epilepsy cam even die from status epilepticus (prolonged seizure) which accounts for 22,000-42,000 deaths a year in the U.S. Aside from that, some of us who are allowed to drive can still have a seizure at any given moment and get into a car accident or drown. 

Myth: “Why don’t you just go on disability? You really should not work and you will never get through school.”.”
Reality: Believe it or not we can actually work and do not have to go on disability. I have worked the entire 5 years thus far having Epilepsy and attended college in the last 4 years. People with Epilepsy are not usually physically limited – unless it is directly after the seizure then we basically turn into cats and do not want to be around people and sleep…or maybe that is just me. Epilepsy may make school harder and more difficult due to medication and frequency of seizures, but it is not impossible. 
  
Myth: “You should never be left alone”
Reality: Actually I live on my own with my two children..granted yes, it is in the same apartment building as my parents but it is none the less my own apartment. Although, right after a seizure, there is some credibility that we should be monitored and depending on the person possibly even for the next few days but that all depends on the type of seizures, how the Epilepsy effects the person, and most importantly: what is best for the person and how they feel.

Myth: “You should never get pregnant. I don’t think your body can handle it”
Reality: Too late for that one. But it is also completely untrue. We just need extra monitoring, our medication levels need to be checked more, and our little ones need to be more closely watched. There has been studies to show that folic acid helps reduce the side effects of possible defects due to certain medications and I can vouch as a personal account that it at least helped me (although you want to start taking it before you get pregnant). While yes, the drop and rise and hormones may cause seizures for some – it does not mean they should avoid pregnancy. They just need to keep a very open line of communication with their doctors.

Myth: “If you do not convulsive, it is not a seizure” and “You cannot have two seizures in a row” – ER nurse
Reality: I never wanted to scream at a nurse so bad and she did not dare come to see me after I had my second seizure, right after she told my family and I that. First, there are over 40 different types of seizures and not all of them involve convulsing..I just got lucky to have those. Secondly, some people have up to 100 seizures a day (go ahead, look it up) never mind two. This is what really got me into educating everyone who asked me about my condition. Granted they got more than they asked for but I can only hope they passed that information on..and I hope that nurse learned her lesson and next time avoid a preventable accident. 

I could probably go on because I have heard A LOT in 5 years. Feel free to leave any questions you may have or things you may have heard below or just general comments! 
Education is key.

 

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  (Photo credit: http://www.efde.org/talking-about-epilepsy/)

Keppra – levetiracetam

“Well for your age group – its the safest”

       And they are right. At the reproductive age of 24, it has been deemed safe (will link credible article below and there are more articles on that site) than most medications used to treat epilepsy. I even volunteered to be in a trial to study the side effects of Keppra on pregnancy. But man does it make you agitate/angry/aggressive/overall everywhere on the emotional spectrum. 
     Keppra – levetiracetam: onset rapid. Duration 12 hours. Peak 1-1.5 hours. Common side effects: aggression, agitation, anger, anxiety, apathy, denationalization, depression, dizziness, hostility, irritability, personality disorder, and weakness. Life-threatening side effects: Suicidal thoughts, Steven-johnson syndrome, and toxic epidermal necrolysis. Used for: partial onset seizures, primary generalized tonic-clonic seizures, myoclonic seizures, status epilepticus, and neonatal seizures. Can be given by mouth in tablet or oral solution form or via IV. This has been engraved into my mind due to school and being on the medication. I know enough to know the drug can cause these side effects for others but when it comes to myself, I hate admitting the medication has changed me. I wish I was immune to these side effects but it is a sacrifice I take for wanting a “safe” drug. As stated in a previous blog, B6 – also known as pyridoxine, is supposed to help even out the side effects. I am really hoping so because the last two days have been rough.
     I got upset with a worker at a local grocery store because she said I could not go through the express line although I did qualify for the express lane. I got upset with a fast food worker because they forgot my drink and swore at me under their breath. Usually I am very nice and would never say anything to them out of respect but man did I sail right into them. There was no holding back and in the moment I just did not care. Once I left, I felt a little bad and embarrassed I acted that way. I feel bad blaming the medication but honestly since they upped it I just have zero tolerance for people. It is not like I can say “sorry, the meds made me do it” although it may be true. Cannot wait to get through this phase…if it is a phase. 
    My memory is still having some issues. Not too sure if its still from the accident or the medication..time will tell
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(Photo credit: Self – thanks to apps)

As promised, here is a link to one website (out of many) where you can find credible research articles on current medications – such as Keppra – and other things going on in medicine/medical field: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3854744/ 

Let me know your experiences!

 

My Reality

This is my Life.

        I have been living with Epilepsy for 5 years. It gets easier I suppose. It is never “easy” per say but you meet people; inspiring people..and sometimes you are able to give that back. Sometimes you educate; which I strongly believe in. Many people I have met get worried or afraid for me when I tell them I have Epilepsy. Some people start treating me like I am a child who cannot do anything on their own. Then there are some people who avoid it all together like it does not exist. Get to know us. Get to know me.
       2011 is when it began. My first seizure was known as a grand mal or a tonic-clonic seizure. What this means is, yes this is your “classic” seizure. I blank out, scream, fall, and shake. They usually last, for me that is, around 3-5 minutes. Yes, I bite my tongue – please do not put anything in my mouth. I have actually bitten off a small piece of my tongue in the past…and again recently. I will go through my postictal phase where I will respond and answer you normally but will not recall it at all. This actually tricked a nurse once and I ended up in a medicine induced sleep for 12 hours along with a repeat seizure. Eventually, I will consciously come back, but I wont remember your name or how I got there. I wont remember anything prior to the event until the next day. I will never remember what happened immediately before or during the event. That is the basic run down.
       Back to 2011, my seizures were not properly control. I was having multiple tonic-clonic seizures a month. I was given this wonderful (using wonderful loosely) medication called Keppra or more commonly written as levetiracetam. I say wonderful because yes it is wonderful for women of a reproductive age. It does not effect your fertility as harshly and better on pregnancy (I have birthed two children while on Keppra, we will talk about that later) than other anticonvulsants. But, as any other medication, there are side effects. For me, it made me incredibly sleepy. I have to nap now and then. It also screws with my mood – I go through really low depressive funks and some days I am perfectly happy and go lucky. It makes me incredibly irritable – I literally yelled at a stranger in Stop and Shop which I would never do otherwise because that is extremely rude. I get angry for no real reason at my poor boyfriend – bless his soul. I also feel it slowed me down with school. Reading and focusing became difficult and my comprehension sucked in comparison to before. It also became harder to recall information. I actually weaned myself off of Keppra because I hated how it made me feel and then my seizures came right back. Time to find alternative coping mechanisms.
       Some studies and people claim that vitamin B6 is supposed to help with the emotional/psychological side effects. I never tried it before but I am now and will update if I find that it works – so far no but it has only been 3 days. My neurologist actually mentioned it before I had a chance too so this might be a plausible tool. I have always taken folic acid with Keppra because it helps fertility wise and to keep the baby safe from neurotube defects – which it successfully did so for my girls.  I also started fish oil this time around to promote brain health. 
        Back to basic history, after my first neurologist completely overdosed me on Keppra and I could literally not remember the day before or how to do basic tasks and found a second neurologist – Keppra worked for my seizures. Until I got pregnant then I would have a seizure immediately before I found out and after the pregnancy when my hormone levels dropped. When I decided to start going back to school in 2013, I weaned myself off because I felt like I would not be able to keep up. I was officially off Keppra at some point in 2014-2015 and slowly the seizures came back but as nocturnal ones – still involved tongue biting. Then I started to get really worried after my first “typical” seizure for me occurred. 
        My children were in the bathtub, I was bathing them. Can you guess? I had a seizure. I could not remember even giving them a bath. Luckily I was at my parents and after a while they thought it was strange I was not coming out and it got oddly quiet. No one knew how long I was out for and thank goodness my girls were okay. This is my reality and now theirs.
    I tried making an appointment with my neurologist but when it rains, it pours. I could not get in with him and I also apparently owed them money because they misfiled a bill with my insurance and did not want to listen to me or my mom and I did not have money to pay. So I decided to take it easy and hope this was just a fluke. Then my recent one happened after a few more questionable nocturnal seizures.
    I drove my car into a brick chimney attached to someone’s house – essentially a brick wall. I had a seizure behind the wheel, thankfully kids not inside, and crashed. I could of very easily lost my life that day, but someone is clearly looking out over me. I do not remember the events leading up, do not remember the crash, and woke up in an ambulance confused before passing back out again and waking up in a hospital. Now my oldest is afraid to leave me alone, she will not sleep on her own, I had to drop some classes, I can no longer graduate this year, and aspects of my life are now in limbo. This is my reality.
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                                  (Photo Credit: https://pennspeaksforepilepsy.wordpress.com/2011/11/02/epilepsy-awareness-month/)

Please feel free to introduce your self and share your stories whether it is of yourself or a loved one! The only was to raise awareness is by making conversation! 

The Normal One

Yes, the “Normal” One..that was my one job – to be normal.


       For a little background history, I come from a medical mystery family. An unknown genetic mishap has caused varying degrees of physical and mental disabilities for the males in my family; my two younger brothers included. I watched and went with my parents to various doctor appointments, testing, genetic counseling sessions, and so on. I was introduced to this wonderful world of medicine quite early and learned quite a bit on my travels. I was the “normal” one. I was not cognitively delayed and was placed in honors and advanced placement classes. I was passionate about music and played multiple instruments for school and the community. I even danced too. But then it happened. 
    2011 I endured the storm. I had my first episode, moment, whichever way people would like to term it. I had my first seizure. I have heard people talk about how they can sense them coming, they have a feeling, smell a weird scent, or they taste something in their mouth. For me, they come without warning. I am fine and within the next moment..my world is black. My memory is erased. I do not know where I am and I will not know who you are. Slowly reality will settle back in and embarrassment, fear, and sadness take over. This is my storm. This is my reality.
   I will never forget the look on my father’s face or the fear in my friends’ eyes who witnessed it. His perfect daughter and their normal friend was not so normal anymore. We hoped it was a fluke, a sickness, something..but it was not. It became a way of life. It became Epilepsy. 

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(Photo Credit: Self – honestly; bought and planted this flower)