Medically Challenged

Well tomorrow I have the nightmare of placing my health in the hands of another neurologist. For those who do not realize why I'm nervous about this, I have grand mal and petit mal epilepsy. Grand mal or tonic-clonic epilepsy is a seizure disorder that affects the entire brain. During these episodes I start by losing consciousness, having muscle rigidity, sometimes I scream out, and then I go through a series of convulsions throughout my entire body where I also bite my tongue and lips. These seizures can last up to two minutes, and sometimes I have more than one in a row. The most frightening part of this seizure is that I stop breathing. These seizures fatigue me so deeply that I pretty much sleep for the rest of the day. The petit mal or absence seizures are accompanied by starting spells or uncontrollable blinking and lip smacking. Those keep me from concentrating and also contribute to my overall fatigue. I've been to so many neurologists since this disorder became apparent at eight years of age. These doctors have put me on different drug cocktails, if you will, to try and control these seizures. More often than not they will work, then after a while, the effectiveness dies down.

Over the last eighteen years, this disease has not only taken a great deal out of me physically, but mentally as well. I cannot drive and I have always had to depend on the goodwill of others to take me where I need to go. From all of the medications, I'm constantly tired and sometimes I feel like the train of medicines will never end. Finally, I was diagnosed with depression and anxiety. My anxiety came from the knowledge that I was constantly having petit mal seizures and the threat of having a grand mal. The fear of never coming out of it or dying is something that I struggled with every day. I've tried many different avenues to try and find a good fit for seizure control. There was a time I even entered myself in a study. The study medication, which was Keppra, almost killed me. The depression that I was under from the drug made me suicidal. It was one of the hardest and, even with therapy, embarrassing hurdles I had ever gone through in my life. I had to take a step back and evaluate what I was doing, and realize that I had so much more to live for. I have to say that after that, I didn't feel comfortable with neurologists for a very long time.

My husband and I moved to where we are living right now, and I had done the whole psychiatrist/therapist gamut. I had to analyze why I felt as if I was cursed and didn't feel that I deserved to be happy. I still have that problem, but I'm a work in progress. I was still having seizures, but I was in denial about needing to really pursue a more aggressive means of treatment. I was so scared of going through that same instance where I placed not only my physical body at risk, but my mental state. Then it happened! I had been sick for a while with sinus difficulties and an infection, and my mother was helping me while my husband was at work. I had gone into to the bathroom to take a shower and try to clear my head. I must have screamed and my mother heard me. She ran to the bathroom and I was convulsing and not breathing. I usually don't like to go to the hospital for these things, because there isn't much that they can do. I had changed my mind in this instance, because I stopped breathing and I had fractured my nose. At that point, I was only rationalizing the nose part as the reason for going.


So after a few of these types of seizures, I finally agreed to a different course of treatment with a new doctor. I was still having so many problems and I was hoping that this was going to iron out some of them. I was lucky to find this doctor locally, as I had been going to doctors that were almost one-hundred miles away from me. So when it all began, she gave the MRI and then an ambulatory EEG. Both of these tests showed all of the horrible scar tissue running around my botched up grey delco. Pardon the slang used from the movie Warlock. I was then put on a higher dosage of a medication that I had taken in the past, which helped me, but I thought was inadequate. The EEG was a horrible test that I really do not wish to ever experience again. I will do in an in-office sleep-deprived EEG, but never a three day test. The gel burned my scalp and forehead and it took me two days to get all the gunk completely out of my hair. I washed it five times and scrubbed it intensely.

Things were going along with the new doctor, and I had a couple more seizures after the test and the medication was upped. Then out of the blue, I began to have migraines. This was something that didn't appear before, and I was suddenly put on another drug for that problem. Just when I thought that I was doing well with this doctor, she canceled my last appointment. When I went to reschedule the appointment, the doctor was out of the practice. I don't know if it's superstition or whether it's just fear of new conditions when it comes to doctors, but I always feel this dread in the pit of my stomach. Even with that emotion rolling around my body, I still try to muster as much hope as humanly possible. Over the years, with all of the different turns I've taken, I've learned so much about humanity through this disorder. I was lucky to have my wonderful, adoring husband by my side, I was lucky to get to know so many wonderful people through the epilepsy support groups online and I've found the realistic part of myself that I didn't think existed. I'm hoping that this new turn gives me another learning curve and hopefully another way to control a very difficult obstacle.