Mystery Illness Diagnosed

By this article, I hope to help at least 1 person get an answer to an illness which is difficult to diagnose.  I was 16 years old when I first developed the worst headache I had ever experienced. After taking some over the counter pain medication earlier, my younger brother came in to see how I felt. I attempted to answer him but my words came out jumbled and made no sense. Little did I know, the headache and speech impairment were only the beginning of a 35 year battle of a progressive illness that was left untreated and has now rendered me disabled.

Into my early 20’s, I had sought medical advice for the ongoing symptoms that seemed to occur about once or twice a month. They were severe enough for me to miss school or work for a day or two. In addition to the headaches, I began to experience blind spots and severe visual disturbances that would come and go during the period of time that the headaches started. I had initally seen my family Dr. who assured me that what I was experiencing were migraine headaches. He perscribed me some medication and sent me on my way. This made sense to me as the problems I was having were symptoms of migraines.

The symptoms continued into the 2nd month after seeing my family Dr. I made an appointment with a Neurologist at this point, fearing that something more was going on. After getting my health history which had, until this time been unremarkable, he ordered a battery of tests to rule out any tumors or other brain anomolies. After going thru a CT scan, MRI with and without contrast and blood tests, all the results came back negative. He too, advised me that I was experiencing migraine headaches. I was perscribed different medication and told to call him if I needed to. After another month, I did call again, as the headaches, speech problems, visual disturbances and exhaustion continued and seemed to be getting worse. A full body CT scan was performed in addition to an entire cardiac workup. Everything came back normal. I was told that there was nothing much that could be done and that I would have to live with the migraines.

Over the next few years, I saw 12 additional physicians, mostly neurologists, but also a different family practice Dr. and orthopedic physician and a chiropractor. My symptoms started to change and progress more rapidly. In addition to the previous symptoms, I began to experience a numbing feeling that started in my mouth and spread throughout my body. Immediately after this sensation, I would go into a semi-conscious state in which I became profoundly confused, anxious and depressed.

By age 42, I was unable to focus on work and became confused easily. I found that my memory was failing and that I was not able to live a “normal” life. I was not able to retain information and unable to make sense of what I was reading. I had to quit working and had applied for disability with a diagnosis of “unknown”.

I was 44 years old when I began experiencing what I described as a ’star burst’ effect in my stomach. It would spread throughout my body leaving me confused, exhausted, depressed and suicidal. I was unable to eat or sleep. I was experiencing these episodes about 15 times a day over the period of two weeks. They would subside for about a week and the cycle would begin again. I was bed ridden. I could not go on living this way and truly considered suicide.

My last chance was to get help at Mayo Clinic Hospital in Scottsdale, Arizona. I was seen quickly and underwent weeks of testing both psychologically as well as physically. A decision was made by my Dr. to hospitalize me in the neurological section of the hospital. Hooked up to EEG, EKG, in a visually and audio adapted room, I was instructed to press a red button each time I felt the ’star burst effect’ come on. Through the rest of the  day and that  night, I did the best I could in pressing the red button when I felt the ’starburst’ coming on. Finally exhausted, I fell asleep and woke to the sounds of several physicians entering my room the next morning.

They had good news and bad news. The good news was that they were 100% sure of what was wrong. The information they had collected gave them a definite diagnosis and it could be treated. The bad news was that because I had never been diagnosed properly, I had suffered some brain damage. The shocking words came from one of the Drs. “you have epilepsy”. I had suffered 25 seizures in the prior 14 hours. I was overwhelmed with the words. How could I have epilepsy?? I didn’t  fall down and have seizures ! One of my most puzzeling questions, why had not one of the Drs. I had ever seen before ever find this ? I had seen 9 different neurologists !

It was explained to me that I have Temporal Peitit Mal Epilepsy Seizures. Only a trained epilepsy neurologist has the education and expertise to recognize and test for this type of epilepsy. Although  now disabled, I am able to live a much more normal life on the medication for epilepsy. Had I been diagnosed 35 years earlier, I would never have suffered the brain damage I have today.

 If you, or someone you love has symptoms similar to the ones I had, and you are not finding relief of any kind, consider locating an epilepsy neurologist for a workup. It may save your life. I did mine.