Dealing with the Diagnosis

“You have Epilepsy.”

istock_000039829016_double-1080x675

This can be pretty devastating to some people. Most people do not understand the weight of the words unless they have been directly impacted. For me personally, I will never forget that day. The same epilepsy I watched my brothers go through for years, just in a different form.  My first neurologist told me I should rethink having children in case Keppra did not work and because of the type of seizures I have. He told me since I could not figure out my triggers and neither could they that I would have to be careful in everyday life. This also added to his rant about having children because the stress of labor could cause me to have a seizure and there is a potential of me losing my life. He also told me my chances of getting pregnant would be harder – but this was back when not much was available on Keppra.

I was devastated when I got this diagnosis. I knew things would change. My friendships changed, the relationship I was in at the time changed, how coworkers treated me changed…everything changed. Some for better and some for worse. I denied the diagnosis for a while thinking it was a mistake. When the seizures did not stop and the dose kept increasing I learned to accept it. This was my new reality. I hoped every night I would grow out of it, but that was not the case. The neurologist said I would be on medication for the rest of my life and so did the second.

I cannot tell you how to cope, we all cope with things differently. But I can tell you this, it gets better. The hardest time is always the initial moment of the diagnosis and trying to find the right mix of medication to slow the seizure activity. I went through a medicated coma and a Keppra overdose before my tonic-clonic seizures were under control. I was having myoclonic jerks every day since high school and only now am I just finally having that be taken seriously as they are probably seizures – thank you to my third and hopefully final neurologist. But things it did get better.  I might have to do things a little slower or take more time out to accomplish a task, but I can do them – and so can you.


Do not be afraid to reach out and ask for help. This was something that took me years to learn but better late than never. You will meet people who are fighting the same battle or who are farther along on their journey and these people can truly help you out. Do not be afraid to ask family and friends to help you because most of them will. I will not tell you it did not feel degrading at times or like you are losing your independence, but you will gain it right back. You just need some tender love and care and some time to focus on you. And that is okay.

Never compare your journey. Some people may have seizures more frequently than others and some may not. Some seizures come in different forms but they are still all part of epilepsy. Everyone has their own battles and each battle makes you stronger. Do not forget that epilepsy is more than just seizures. Epilepsy is the side effects from medication, constant doctor appointments, EEGs, missed arrangements, everyday stigma and so on. We are all in this together. Never feel like because you do not have it “as bad”, that you do not truly experience epilepsy. You do, just in your own way, in your own form, and you are brave for that.

It is okay to not feel okay. We go through emotions. We deal with setbacks. Sometimes our medication goes up and it feels like we are moving backwards. We have a seizure for the first time in years and it feels like you are back at square one. It is okay to feel that way. There are people here for you that will help you get through that. Your medication went up? That means you are a step closer to having your seizures more controlled. You went a year without a seizure, then had one? That means something is working and maybe you can identify a new trigger from it. Try to look at your positives, but take the time to feel upset. This is part of your journey and no matter what you will keep moving forward.

Advocate. Whether it is for yourself towards a doctor or treatment plan, starting a blog/vlog, going to events; do not be afraid to speak up and never be afraid to advocate yourself. Remember: you are your own best advocate. Everybody has a story, an experience, and every one deserves to be heard. This may help someone who is new or someone who is in the same situation as you. This could mean the difference of getting proper or improper care. This could mean helping in research and education This can be scary and this can take time to get into, but this is something to think about. Nobody will ever know epilepsy and seizure disorders better than you. Be heard; you deserve to.


Always remember:

 You are not your illness; you are not epilepsy. You are you. Epilepsy is just a small part of who you are and what makes you, you.


Are you looking for a support group? Go to https://www.facebook.com/groups/324889234525834/

cs42m2hweaem3hu

Join our family

My Little Black Book

So close, but so far..

image1

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.”

bjta82xiiaa0sdq


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!