FINDING AN END
I had a spinal fusion in late 2009. The fusion went great and I was feeling much better. Approximately four months later I began to have small ‘jerks’ behind my eyes. It was similar to having the lights flash off and then on again in your home. I thought I was imagining it at first. I mentioned this to my sister-in-law and she urged me to tell my neurosurgeon. I ignored her advice because the ‘jerks’ were becoming less frequent. Not long after the ‘jerks’ began I had a cyst develop where the fusion had taken place. I began to fall to the ground and the pain was worse than anything I have ever experienced. I could no longer participate in my physical therapy. I noticed the ‘jerks’ behind my eyes came back fiercely. My family and friends noticed that I would suddenly shut my eyes and look away from bright lights, twirling fans, fire works, etc. No one understood my eyes were being forced shut. It was very scary and I told my doctor as soon as I saw him. I even did a bit of research and took the information with me. In the meantime another back surgery was planned to remove the cyst. The surgeon discovered the cage that supported my fusion was angled and digging into my nerves around the spine; the cage and cyst were removed. No one seemed to be listening to me about the ‘jerks’ in my eyes. I developed a case of the hiccups that went on for the whole month of June that year. I found on the Internet that hiccups are a small form of seizures. I printed off the information and took it back to the neurosurgeon. I was sent to a top-rated neurologist who examined me. I had an EEG and MRI of the brain. The only thing I learned was that I showed no signs of sleep deprivation although I had not slept in the past 24 hours. I was beginning to believe my pain medication was causing the ‘jerks’. I began a long process of stopping the medication (Tramadol). It took approximately two months to stop the medication because the ‘jerks’ became worse and more frequent as I stopped taking the prescription pain medication. I need to stress I never took more of the medication than was prescribed and I have never been addicted to drugs or alcohol. I felt sure the ‘jerks’ would stop once the medication was completely out of my system. I was wrong. I began to have more problems with my spine. The bone between the L4-L5 area had grown into a bone spur and nerves were wrapped around it. A third surgery took place. The surgeon found an abundance of scar tissue also wrapped around delicate nerves. He took much care in removing the scar tissue but a small tear occurred and spinal fluid leaked out. Soon the ‘jerks’ in my eyes began to cause excruciating headaches. I had experienced migraines in the past but these were different. I had an aura before the headache began and the pain was in inch-wide clusters all over my scalp. The clusters would move around my scalp. I would compare the pain in each spot to pins and needles. Later my whole head would ache to the point that I would seek out a dark, quiet area and sleep for hours. I went around with my hand constantly attached to my head due to the pain. My ‘jerks’ were now causing my body to suddenly stiffen up and this paralysis would last anywhere from a few seconds to approximately a minute. It was a strange sight. I developed tremors in my arms, hands, and legs that lasted for hours. My left leg, foot, and arms would suddenly fall asleep. I was very weak and still suffering from extreme pain in my lower back, left and right flank, hips, left leg and foot. I soon began to have seizures. My whole body would jerk, stiffen, and contort into strange positions. I had no control. I found myself leaking urine during these episodes. I began to fear falling and stayed in my home as often as possible. I quit driving because it was dangerous. I was under the care of a psychiatrist as well as my neurosurgeon. I was referred by the psychiatrist to a therapist. One day in the therapist’s office I started to have seizures. I was sent to the emergency room where I had another EEG. I had several episodes during the test. A neurologist came in to discuss the results of the tests with me. He said I did not have Epilepsy but a disorder called Psychogenic Non-Epileptic Seizures (PNES). My EEG results did not indicate any electrical disturbances in my brain. The doctor also indicated that since I was on several prescriptions that were primarily used to treat Epilepsy I could not possibly be having Epileptic seizures. I should point out the medications he referred to were used to treat other conditions I was experiencing due to the spinal injury. I was told to continue with my cognitive behavior therapy for the PNES. The therapist and neurosurgeon were convinced the non-epileptic seizures were a way that my body released stress due to my severe pain. I was labeled with PNES in January of 2012. I had no problem accepting my diagnosis. Many people feel there is a stigma attached to the diagnosis. I simply wanted to get better. My therapist had worked with patients who had Epilepsy and others who suffered from PNES. She explained to me that I would not be hurt or die from a PNES episode. She also urged me to concentrate on a voice or music during an episode. It was very important that I breathe deeply. I dutifully followed her instructions but the seizures became much worse. At this point I decided I was desperate enough to try a spinal stimulator to help control the pain in my body. My neurosurgeon and psychiatrist both felt this might control the pain enough that the seizures would stop. The great thing about a spinal stimulator is you have a trial run for one week to see if the stimulation will help control the pain. I was scheduled for the procedure. The morning of the procedure I began by taking a shower. I had been awake all night and everyone else in my home was asleep when I stepped into the shower. I started to feel weak and dizzy all at once and remember fearing I would fall. I put my arms out to catch myself and the next thing I remember was waking up to ice cold water hitting my body. I had been unconscious for approximately an hour in the shower. I managed to get dressed and make it to the hospital. The nurses could not get an I.V. in my arm. My blood pressure was alarming them. I can’t remember the exact number but it was extremely low. I kept having seizures and feeling very dizzy. My neurosurgeon admitted me to the hospital and I had many tests ordered. A cardiologist was brought in and she ordered many tests as well. I also had a third EEG. Once again I was told everything was normal with the exception of my blood pressure. I was given the diagnosis of Orthostatic Hypotension. My blood pressure, which had always ran on the low end, was now going up and down like a wild roller coaster ride. The numbers would fall drastically and then spike rapidly. I was given the okay to have the stimulator inserted for a one week trial. I have had many surgeries and this was supposed to be the easiest yet. I wasn’t even under general anesthesia and yet I was terrified. I had seizures right up until the moment the anesthesiologist gave me some medication to relax me. I had to be awake enough to tell the doctor when I could feel the stimulation in the right areas. I spent the day at the hospital and was finally released to go home with instructions to see my primary physician about my blood pressure. I began to have bad seizures a couple of days later and they occurred most of the week. I did have a lot of pain relief. The neurosurgeon, psychiatrist, and therapist were all just as happy as my family about the pain relief. We felt once I had the permanent stimulator in place my seizures would go away. The surgery was scheduled. Soon I had the permanent stimulator placed in my back and the pain was not relieved as it had been during the trial. I continued to have seizures. Eventually the stimulator was turned off for a whole month to see if the seizures continued. Oh, did those seizures continue. They became longer, stronger, and I no longer had an aura to warn me. I decided to give the stimulator one more chance. I have not received any relief from the device. I will be having it removed in the near future. In the meantime I continue to have seizures. I broke a tooth and chipped another one, gave myself a very swollen eye when my arm popped up into the air and came smashing down onto my right eye, and have received many bruises. I also had a mouth guard made by my dentist to wear during seizures. I highly recommend one. Eye glasses were prescribed to help with my headaches and dry eyes. I haven’t noticed any relief from the headaches and the glasses are just one more thing I have to worry about breaking during a seizure. One day a friend came to visit me. I left her and my husband to talk in the living room while I walked a few feet away to blow my nose. The next thing I knew I was lying on the ceramic tile and my feet jerked up to my buttocks. My knees began to flap out and were actually slapping the tile. I thought my hips were going to pop out of their joints. My head was bumping up and down on the tile. I could not speak. My husband came to check on me and was alarmed to see my body acting so wild. This episode lasted about 20 minutes. My friend was terrified by the experience and was very glad her 17-year-old daughter did not witness the seizure. I have since tried to educate family, friends, and even my beautician. The seizures I hate the most look less frightening to my husband. I am guessing it is because my body is not thrashing constantly. This particular seizure affects my diaphragm and ears. My diaphragm seizes and prevents me from breathing. It is much like swimming under water and feeling like you can’t hold your breath much longer. Amazingly my mind stays calm during this type of seizure; I am always aware of what is going on during a seizure. I guess I feel that if I pass out my body will relax and fresh oxygen will work its way through my body. My ears also tend to seize up when my diaphragm seizes. When the muscles in my ears tense up it affects the tiny bones that make up the inside of my ears. A terrible sound fills my ears and all other noises are blocked. I have noticed the sound I hear most often compares to a hive of bees; sometimes I hear a noise similar to rap music. I know when the sound begins to fade that I will soon be able to breathe again. My body basically feels as if it is being squeezed tightly and I develop a horrible cough with a lot of phlegm. I also experience incontinence, a migraine, my blood pressure spikes and drops, static electricity streaks through my mouth, and my veins are sometimes so visible it looks like my skin is transparent. Many PNES patients have what is referred to as “bicycling” of the legs. I’ve never once experienced it during any type of seizure. As a matter of fact, the PNES diagnosis was made in a matter of hours and usually takes years to diagnose. My therapist is amazed and confused by my seizures. One day she said my seizures did not fit the criteria attributed to PNES. She said she had no doubt the seizures were not psychological but physiological in nature. She was grim when she told me I would have a very hard time finding out the cause, if in fact, I ever found out the cause of the seizures. I went to a cardiologist a couple of weeks ago. He said I looked great and I admit I did feel well that particular morning. When I left the office my father drove me to a local store approximately 25 minutes from the doctor’s office. I went into the store, shopped for about 5 minutes, and began to have seizures. A wheel chair was brought to carry me out of the store. I went home and took some medication and rested. Later in the evening I sat down on the toilet. My chin was suddenly forced to my chest. My arms and hands began to turn towards my torso much like a body that has been burned. I was frantic as my body began to rock back and forth. I had no control to use my hands as they were contorted and frozen. Each time my body rocked closer to the ground. I was well aware of each action. Eventually my fear was realized as the top of my head met the ceramic tile. The pain was horrible and did not go away for over a week. I have since wondered if I experienced a concussion. The next morning I was able to recall each thing that happened after I hit my head. I laid in the floor for an hour or more before I was able to crawl to my bed. By the way, the cardiologist found nothing wrong with me after all of this happened. He simply told me he would include what I told him in my report for the neurologist I am scheduled to see in early October. The seizures are not only hard on me but affect my family dramatically. I have to constantly remind myself of this important fact because I easily become frustrated and take it out on the people who love me. My husband is working four jobs to support us. I am now on disability. My two teenagers have had to grow up fast and take on many responsibilities; they constantly worry about me and fear finding me injured. I find it difficult to accept I may never be able to take care of my home, work in a flower bed, or enjoy skiing again. I am an avid reader but many times my seizures kick in while I am trying to read. I used to write well. I find my mind wonders very easily and I lose my concentration completely. My spelling and use of grammar leave much to be desired. It is difficult to accept I may never work again. I happen to love work and took much pride in the fact I was about to receive my masters degree in Human Resource Administration with a perfect 4.0 grade point average. I simply wanted to help others and put a bit of joy in the world. Thinking of all the things I have lost makes me cry and I have never cried easily. It is very difficult to fake a smile for others. This hurts me and so I have become the queen of building up walls to keep others out of my life. In fact, writing this story has been thought-provoking and therapeutic. I hope my story helps others who are suffering or have a loved one suffering from the same symptoms…you are never alone. My life and the life of my family has been changed forever. I refuse to stop searching for help. I don’t believe doctors are ignoring my symptoms. I have dealt with many good doctors and I simply believe the answer to my problem has not been found as of yet or someone is possibly trying to get their research published and accepted by the medical profession. I’ve recently began eating healthier. I feel eating whole foods can only help me and encourage others to seek out healthy, whole foods. I’ve also found a wonderful support group on Facebook. I am a daughter, wife, mother, an avid reader, a lover of snow covered mountain tops, and to many I am simply known as Christy, but to me, I am a fighter who refuses to give up hope, and I will one day have a diagnosis. My greatest joy will come when I can give my story an ending and help others suffering from symptoms similar to mine.