20 things you should know about Epilepsy

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1. When you begin your journey with epilepsy you must be your own advocate.

It didn’t really occur to me that once you hear those words “You have epilepsy,” you’re confronted with a variety of opinions about how to journey ahead. In the beginning, I just wanted a doctor. Any doctor. I didn’t care who it was, I didn’t care what medicine they were planning to give me. I just wanted them to put an end to the condition, whatever it took. It gets to a point where the decision comes down to you and you alone. You must make the decision about your treatment.

Every type of epilepsy is different. This must be first and foremost in your thinking. Make a choice; just because it’s set up that way, does it mean it’s the right way for you?

I had to make a decision: Was I going to stay with a doctor who wasn’t leading me further to the care I needed? Was I going to continue taking epilepsy medicine that wasn’t controlling my seizures in any way, shape or form?

2. Epilepsy doesn’t define me.

I’m going to be completely honest: Having seizures, whether Grand Mal or Complex Partial(in my case) can be frustrating. Seizures are an unsettling experience for the person going through it and anyone witnessing it.

I choose to be open and vocal about my seizures rather than masking them because I know so many around the world are intimidated at the thought of others’ perceptions of epilepsy and seizures. I’ve gotta say, this knocks me back a few steps because truthfully what other choice do we have? Seizures are here with me, and we’re at war. But I have complete faith that one day there will be a cure for epilepsy. I know it in my heart. I will look upon this someday as a page turned in the story of my life. Epilepsy does not define who I am, and I will go on. I will be here for my husband and my family.

3. Be a fighter – this will help you through the stormy days.

This is a must. You’ve got to keep yourself in a positive, uplifted, healthy state of mind. I’m in a fighter state of mind right now and this means I’m making myself priority number one and believing with all of my heart I’m going to be just fine. This is critical.

I had my moments of crying when I was told I had epilepsy. It’s OK. We’re human. The important thing is that you get back up and you fight. Get yourself in the thought process that you will beat this. No matter what it takes, no matter how long it takes, you will beat this. Quit is not in my vocabulary.

4. Good nutrition plays an important role in facing epilepsy.

So many foods that we eat and drink are in fact poisonous to our health. I consumed junk food, processed and refined food for so long. I now have become a person who reads and studies labels. It’s become apparent how so many foods contain ingredients that may contribute to seizures and an unhealthy lifestyle.

Since becoming diagnosed with epilepsy, I’ve kicked most, if not all caffeine to the curb and re-evaluated my eating habits. Now a days, I eat a whole lot more vegetables, such as leafy greens, broccoli and cauliflower. I also include more fruits into my diet such as blueberries, apples and bananas. Re-evaluating my eating habits was tough in the beginning, as there were comfort foods that had to go; however, this was my life I was analyzing. In one hand, comfort. The other hand, my life. I choose life.*

5. Read your labels.

Artificial sweeteners are added to a lot of what we buy and consume. As I stood in the aisle at Walmart one day and looked at the boxes of oatmeal, I realized some contained artificial sweeteners. How frustrating. It’s important that you read your labels.

There’s a wonderful app I highly recommend called ShopWell. It scores foods on how well they meet your needs. It includes nutrition information and personalized food scores. ShopWell also gives you easy tools to find better products for you. It takes the work out of reading nutrition labels so you can focus on buying what you want as quickly as possible.

6. Epilepsy tests can be smooth sailing.

When you’re going through testing, it can be intimidating or boring but you learn to toughen up and just do it. I’ve had 28 electrodes placed upon my head more than once. This meant they were going to record seizure activity in my brain. Anyone having seizure testing should talk to their doctor or neurologist if they’re feeling nervous or anxious.

7. Talk to tour doctor before testing.

Nervous? Anxious? Talk to your doctor about any questions you may have prior to testing. He or she will gladly reassure you about any concerns. It’s important to address these concerns; you want to feel at ease when going in for testing. I remember the first test I was scheduled for, I was so nervous I could barely sleep the night before. It was as simple as picking up the phone and calling my doctor and voicing my concerns. I had nothing at all to worry about.

8. You are priority #1.

At times, epilepsy testing felt like an energy drain. It’s important to go into it with faith.  There was a day my husband looked at me and said, “Think of it as a punch to the jaw of epilepsy. Every test is a punch. You can do this! Stay strong.”

He continued by saying, “You’re not superwoman. Don’t forget to give yourself time to rest.” He was right. He was completely right. Rest is medicine too. Sometimes it takes a voice of reason for me to stop what I’m doing and rest because I’ll work sunrise to sunset. I needed to learn to quit taking on more than I could handle. This was something that was a bit of a challenge for me, but it was something I had to do.

9. Support is a must.

Don’t go to your appointments alone. If you’re able, ask a friend or family member if they will go with you. You don’t know it, but you do need someone there with you. I’ve found my greatest strength in my family and friends, and they’ve been such a tremendous blessing in my life. My husband has been to every single appointment.

I highly suggest keeping a journal and jotting down everything. Keep notes on all your neurologist says. Having references are important.

10. Hold on to hope.

Remember, however long it takes, whatever it takes, hold onto hope and faith. Be vigilant. Do all the necessary things you must do to stay healthy and remain healthy. You are priority number one.

11. Epilepsy is the condition of having repeated, unprovoked seizures, whereas a seizure is anabnormal electrical discharge of the brain which then results in an individual losing consciousness or having a change in their neurological function. There are several types of seizures and not all are dramatic in their presentation, though they are often depicted in movies and television as a convulsion.  Some seizures manifest by one simply losing focus, but to a bystander, it may seem as daydreaming, wandering or a tremor.  Therefore, not all seizures are very dramatic in their presentations.

12. Epilepsy is very common.  According to the CDC, one in 26 people in the U.S. will develop epilepsy at some point in their lifetime.  If you think about it, that means two persons on every bus or two people in every subway car will have epilepsy.  There are 150,000 new cases of epilepsy diagnosed in the United States annually; 2.2 million people in the U.S. and more than65 million people worldwide have the condition.

13. Children and older adults are the fastest-growing segments of the population with new cases of epilepsy; however, the reason that they have epilepsy varies dramatically.  In children, we see an overabundance of genetic and infectious causes of seizures. For older adults, stroke and Alzheimer’s disease seem to be the common cause of epilepsy and seizures in this population.

14. There are numerous causes of seizures and epilepsy.  Stroke, head trauma and tumors are common causes of seizures in the U.S., yet the number one cause of seizures outside of the U.S. is an infection which is completely preventable by simply washing one’s hands.Neurocysticercosis– caused by the Taenia solium tapeworm— is one of the most common causes of epilepsy in the world and an increasing cause of seizures in the U.S.   Other preventable causes of epilepsy are head trauma from car accidents, violence or the consequences of military intervention.

15. Epilepsy is not a benign condition and can result in death. The number of people with epilepsy who die of sudden unexpected death in epilepsy (SUDEP) varies from one of every10,000 newly diagnosed to nine of every 1,000 candidates for epilepsy surgery.

16. For many people with epilepsy, seizures can be effectively reduced or eliminated by medication, surgery, devices and dietary or other therapies; however, referral to epilepsy centers for surgery can take 15 years or more.  In the Latino population, there is a considerable misinformation and lack of information; oftentimes that lack of access does not translate into meaningful care. There are 26 different drugs approved for treatment in the U.S. for epilepsy.  Moreover there is a pacemaker like device known as the vagus nerve stimulator, a diet- ketogenic or modified Atkins, and numerous surgeries.  These effective treatments are available for many types of epilepsies; however, access and referrals to these treatments fall short.

17. There is considerable stigma associated with epilepsy that sometimes overwhelms the condition itself. The word” epilepsy” is considered stigmatizing in its own right.  The long history of epilepsy is full of examples of discrimination and secrecy due to misinformation and lack of understanding by the general public.  This stigma can have a detrimental effect on people with epilepsy and continued and sustained efforts are needed to raise public awareness and convey what epilepsy is and what it is not, as well as the basic message that this is an exceedingly common condition.

18. There are significant quality of life issues associated with epilepsy and one of the most significant is driving.  Every state in the U.S. has a law that dictates whether someone with epilepsy can or cannot drive and the length of time they need to be seizure free for them to drive.  In six of these states, the law has mandatory reporting by the physician of all patients with epilepsy to a medical board.  Individuals need to be aware of these laws as there are, in some cases, criminal consequences for both physician and patients for their lack of awareness associated with it.

19. Epilepsy is more than just seizures as it often has other accompanying conditions associated with it.  Oftentimes, poor memory, mood issues, depression and anxiety walk hand in hand with issues associated with epilepsy and need to be managed and thought of when caring for the individual with epilepsy.

20. Sadly, many health professionals need to be better informed about epilepsy.  Only 20 percent of U.S. medical schools require training in neurology…and epilepsy and how to treat it.  Improvements in epilepsy care can only be made if the quality and quantity of education about epilepsy for health care professionals are improved dramatically at undergraduate and graduate levels of lifelong learning processes.  In addition, more educational efforts for patients with epilepsy and their families is needed.

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