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Living with dystonia and epilepsy

Living with dystonia and epilepsy is not easy. Let me talk about when all this started. I was normal child till I was 6 years old. My first synonym for dystonia was when my right hand started to shake involuntarily and I can't hold anything. I remember I was holding a cup and my hand shakes involuntarily and it dropped. As a child, I was scared and shocked and I wonder why my hand shakes without my instructions. But I didn't give up. I tried thousand times to hold a cup ( until now I really can't hold a cup properly but this time it never drops) and I would finally hold the cup. I can hold the cup but all the liquid inside will pour. And the solution for holding a cup is to have a water bottle. It is easier to hold and drink.

I had a problem with writing too. I wouldn't write normally. My hand shakes so I will always find a way to write. I had various style of writing. I bend my entire book, used two hands to write, and SO MANY DIFFERENT ways. It will be funny to watch me writing. But none of my teachers and friends asked me why write differently. Every year I have my own way to hold a pencil/pen. I will always find ways to write. It was so difficult to write but I never give up. I practice every day to write. I usually prefer to type than writing. 

Back to my story, when I was ten years old I had seizures. I didn't know it was seizures until my parents found out about it. I have admitted the hospital many times because of heavy seizures. Age 10 - 12 I had heavy seizures. The doctors didn't find about my dystonia until the age of 17 but they found out my epilepsy. I had heavy seizures every time they change my dose or my medicine. Finally, fit with one medicine that is Carbamazepine 200 mg tablets. I used to take this medicine regularly when I was 13-16 years old. This medicine makes me sleepy and tired. I have a problem sleeping early because I have trauma about epilepsy. I usually have seizures in the early morning ( 2.00am - 5.00am). I hate seizures. It feels like really bad. After the fits, I really can't be normal. I usually get end up with a bruise on my tongue, vomiting, hurt my fingers and sometimes new injury on my body. I can't explain how it feels. It is really disaster!! Nobody will like seizures.

I manage to take control of my seizures. I know when it gonna come. And THIS IS MINE GREATEST FEAR. I have some symptom of seizures. Those symptoms are:

  • My eyebrow move/shake up and down involuntarily
  • My lips turn pale
  • My right feet feel uncomfortable so I move my toes frequently
  • There are moments I awake suddenly because of mini attack of seizure. Then my heart beats so fast.
This is my symptoms. Maybe you might have different symptoms. Please share yours too. It might be helpful for me.

Things that I do to overcome/ avoid seizures:

  • I will always walk, it helps me to relax.
  • I change my focus. I usually play with my cat. Patting an animal helps us to relax.
  • Take my medicine regularly. (Sometimes I don't take cause it makes me tired. I take when I needed (and this is a really bad habit). My doctors advise me to take the medicine regularly but I don't follow.
  • Do not stay too long on phone, TV, laptop. These things affect our eyes and brain. Our brain can't take too much of lights.(I'm not good at science but this what my doctors tell me and it's true). If I stay too long, I will get more dystonia. 
  • Sleep early. Our brain needs a lot of rest. (Yes, sometimes we tend to sleep late, that's okay but don't have it as regular habit)
  • Should always stay calm
  • Should not get stress. Even though is so easy to say, it is so hard to follow. I usually get stressed about everything. Now I am changing as it makes my health worse...dystonia and epilepsy become worse. I learned to stay more relaxed. I know God will take care the rest. 
  • Stay happy and positive. Everyone should live a life of joy, bliss, happiness, and love. Always count your blessings. Smile more. Make friends.
  • Share your feelings. 
This is just my things that I do. Sometimes it does not work for me. I get seizures and my dystonia even though I applied all this. It's always good to talk to your doctors. They will share knowledge about it. Please share your ways to overcome seizures. I love to know about it.

There are many medications, therapies out there, just one thing to bear in the mind NEVER GIVE UP. And you are not alone. I am here. A girl, 21 years old still surviving and counting my blessing. Everything happens for a reason and we going to find out. Inspire another, show love and kindness. You're not alone in this journey. We are together in this. I'm traveling my journey with my dystonia and epilepsy with a great heart. will share more about my life in next blog.
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