I have had seizures all my life. Having seizures everyday and taking zillions of medications two or three times a day is just horrible! It seems like no matter what the next new treatment/medication comes out, it just doesn’t work for you. Believe me, I’ve been through it all.
1. Gratitude for the Little Things
At one point, I was on five different medications and ithey just weren’t working. I was still having more seizures than you could count. I’ve had a number of hazardous seizures. I’ve had one crossing the street, where I lost consciousness. I’ve also had many tonic clonic seizures at school which was very embarrassing. The scariest seizure was when I had one and rolled down the stairs to the basement. For the past few years, the seizures I’ve had are one second long and I don’t lose consciousness. In spite of all the seizures, I have never had a concussion or anything worse. I am very thankful for that.
2. Help with Side Effects
When it comes to side effects, I have had a lot, including double vision, dizziness, nausea, weight gain, and depression, Nevertheless, I was willing to try a new drug. I figured, if it didn’t work, I could always drop it. However, when it came to implants (VNS), at the time my doctor suggested it, I was not ready to try it. I did not want a piece of machinery in my body that probably would never be taken out, especially the coils in the vagus nerve up your neck. If it didn’t work, you couldn’t do anything about it except turn off the current. If your doctor wants you to try something you’re not ready for, you need to advocate for yourself. That’s what I did. My doctor never gave up on giving me the VNS, so I got a doctor would listen to me.
3. Finding a Good Team
Your doctor is the most important person who can help you in your journey to seizure freedom. Since epilepsy is such a difficult disease, most people need to see an epilepsy specialist, an epileptologist. You need one that will listen to your needs, answer your questions. It’s not just the doctor, but the entire medical team, including the nurse(s), neurosurgeons, and other staff. The best epilepsy center you go to have the best doctors who look not just at the individual, but also at the family of the person with epilepsy.
4. Having Good Support
Fortunately, on my journey, I have a strong base of support. My family, medical team (I have a wonderful doctor who listens to me), friends, and support group. They have been with me through all the ups and downs. I had an RNS implanted under their care and my seizures decreased somewhat. However, I started taking clobazam three weeks ago and have been seizure free so far. Whoo hoo!
5. Never Give Up
They say that after you have failed two drugs, your chance of seizure freedom falls rapidly and you have almost no hope. Well, after having tried zillions of medications, I think the zillion and 1st has done the trick. If something like this can happen to me, my message to everyone suffering with epilepsy is, as Jesse Jackson said, “Keep hope alive!”
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