Are you ready for another virtual coffee date? Despite the hand tremors (side effect of drinking too much coffee while taking Depakote) I do love my lattes. It has been at least a month since I posted. I humbly apologize, but I have been really busy. Let me update you with the latest with another virtual coffee date. I hope you have a warm beverage in hand.
Day 3 How did you get a diagnosis?
When I was 17 years old, I was having a bout of insomnia. My jaw kept twitching uncontrollably. At the time, I did not know that this was a myoclonic seizure. Soon my ability to walk straight and talk coherently diminished resulting in a tonic-clonic (or grand mal) seizure. This happened at around midnight or so.
My parents took me to the hospital. When I woke up, I had a difficult time responding to people’s questions. It has always taken me a few hours to recover from a tonic-clonic seizure.
Just because you have had one seizure doesn’t mean you have epilepsy. That seizure could have been caused by something else. My doctor, who was my pcp at the time, ran a few tests to try to find out what was wrong. He requested an EEG and a CAT scan. The CAT scan was to rule out other possibilities. The EEG was performed to see if I had epilepsy. I don’t believe that I had one at the time, but sometimes an MRI is also performed.
The EEG that I had indicated that I had epilepsy and CAT scan did not show any other possibility for the seizure. They put me on dialantin, but I soon found myself in the ER a few months later when another tonic-clonic seizure happened. I wasn’t the happiest patient, but my mom was making sure that I took my medicine regularly. My doctor said this only reinforced my epilepsy diagnosis.
Disclaimer: The following is the long ago promised transcription of the podcast that I made called “My First Seizure.” Sorry for any grammar related mistakes.
My First Seizure (Transcription)
My first seizure happened on December 31, 1991. It was just after midnight, for some reason I didn’t know of at the time, I couldn’t get any sleep, and I kept experiencing my jaw kept uncontrollably moving up and down. But, I thought it would go away in time, so I got a book out to try and do something to help me go back to sleep. Because I thought this would all go away. Eventually it was more difficult for me to make sentences and then it gradually became difficult for me to walk. So, it was at this time where I then thought something is wrong here, but I didn’t know exactly what, and I didn’t have enough time to do something about it because I went unconscious.
Now I wasn’t aware of that of course, because in one moment I was in one spot and the next thing I knew I was in the hospital in the emergency room in the local town. This all happened over a matter of about two hours. I was a junior in high school at the time. My mom as well as every other mom in the world is a very light sleeper. She heard me collapse on the floor and immediately called 911. They started asking me various questions that I should have known, such as “Do you know what your name is?”, “Do you know what the year is?”. Another popular question is “Who is the president of the United States?” I had a very slow time coming up with the answers to all of them. It is like that complex question that you get asked where you know the answer. You have to think of it for a little bit, but you know the answser. It is right there! But these were all questions that you should be able to come up with an answer right there. But my brain was so slow processing the information. Well part of it is that they give you Valium to help relax your muscles. So another part of the stage after you are in the hospital is that you are so relaxed from all of the Valium. I was released from the hospital the next day.
After I got out of the hospital, the doctors were trying to find out “what is this?” They had a list of things that this could possibly be, and it is their job to tell the patient as well as the parents what all of the possibilities are no matter how scary they are. They gave us the whole run down, and I was convinced it was none of these. We did the tests anyway because I was going to prove that I was just fine and that nothing was wrong with me. So they had the CAT scan done to make sure that it wasn’t some form of cancer. We also had the EEG done to find out if it was epilepsy. The EEG test came out abnormal, and the CAT scan fortunately was normal. After they take the test at the time in 1991 you would have to wait a few weeks to find out the results. It is weeks and weeks of painstaking waiting while they process all this information. It (The EEG) is one of the standard tests in the epilepsy realm to determine if you have epilepsy or not.
I would say that I went into college with the idea that I was going to be able to achieve all the things that I wanted, and I didn’t really have epilepsy and that it would go away at some time. I remember there was someone who had told me, although I don’t remember when it was, that there had been studies that some patients who had taken their medicine over a period of four years and their epilepsy had just went away and their seizures stopped. So, that was the one thing that I held onto. If I kept taking my medicine regularly and almost religiously, I would take it at a very specific time 12 hours apart from each other, and it would go away.
Four years after that almost to the day, I had a seizure, which is ironic. And then, all of the sudden it came to me, it’s not going away. It’s going to be here and it’s going to be apart of me for the rest of my life. That’s when the next stage of the grief process came, which is grief and depression set in not long afterwards.
There are a lot of things about myself back then that I still have. I grew up loving Astronomy and I still do. So that part about it doesn’t change. It doesn’t mean that I am going to become an astronomer, but I’ll still go stargazing. The rough thing about discovering that you have epilepsy as a teenager is that you are still trying to figure out who you are as a teenager. And then, getting this chronic disease on top of it, you have to struggle with the fact that some people expect you to be a certain way because you have this chronic disease. But that’s not necessarily true. You still are exactly who you were before you have the disease, only now you have to cope with epilepsy.
My mom reacted, and she felt guilty about the fact that I had epilepsy. Almost as if it was her fault. They (My parents) didn’t necessarily treat me like all of the other children in the family, and they coddled me a little bit too much, which caused resentment from the other children. As I went to college and started doing things on my own. My parents started to realize that I can do just about all of the other things that everyone else can do, but I just need to do it at my own pace.