So most of you know that I have not been feeling well (understatement) for several years now, and that I took a major down turn four or five months ago. At first the problem was diagnosed as a sleeping disorder with an unknown cause. The treatment I received helped get me through each day, but clearly was not getting at the heart of the problem, and my increased activity levels actually served to compound the problem in the long run. I was being encouraged by my doctor to push myself to be more active and to get more exercise; the more I tried to do these things the more it seemed like I was getting worse. Then in June I woke up one morning with more problems than the fatigue, somlesence and lack of focus that had been the increasing issues for a couple of years. On this day I was weak on my right side, dizzy and off balance. As if that were not bad enough I was slurring my speech.
The doctors fairly quickly eliminated brain tumors, stroke, aneurism and a host of other potential problems which narrowed the focus down to neurological issues. The earliest appointment I could get with a neurologist was three months out. I had been fighting severe problems for two years; I could wait another three months, although, the other side of the issue was that I had been dealing with these increasing problems for two years and I wanted, or better said, needed treatment.
In July, still six weeks before my appointment with the neurologist, I reached a point one Saturday, after a week of over exertion, that I felt like I was slipping away. I did not feel fully in control of my actions; it didn't really feel like I was in my own head. I hurt everywhere, but there was no specific pain. I was very dizzy and my head felt like it was in a vise. I could barely talk. Tricia took me to the emergency room. If you ever want to bypass the wait in an emergency room, lay out those symptoms to them. They didn't come running to the waiting room for me, but they were right there. But after they determined that I did not have an immediately life threatening condition they backed off a bit. After several hours of observation and a few tests, they sent me home. The ER doctor thought, from her observation, that I might be having seizures, and she wrote up a report that she sent to my neurologist.
By the time I was able to see the neurologist I had a full page list of symptoms. Only three of those symptoms pointed directly to seizures. Had it not been for the ER doctor's report the neurologist likely would not have even tested me for seizure activity. But he did, and in late October we learned that I was enduring simple partial seizures in the left front lobe of my brain. They also found that I have mild neuropathy, a degradation of the nerves in the arms and legs.
In retrospect I have been dealing with the seizures all of my adult life. They would start or increase in strength or duration when I would reach high levels of activity over an extended amount of time, and would subside when I got sufficient rest. The challenge here is that the seizures would happen during my sleep and disrupt my sleep patterns reducing the amount of rest I would get when I slept. This is what happened on my mission. As most of you know missionaries are on the go from the time they get up until they go to bed; there is no time built in to relax and take it easy. That schedule increased the intensity or duration of the seizures until they affected my sleep patterns and I didn't have the energy to do much of anything. So I came home, rested for several months and eventually got back into a daily routine. The medical communities' best explanation was that I had some kind of digestive problem, ulcer etc. and I was depressed, but that never did seem right to me; if I wasn't so tired I wouldn't be depressed.
In the years that passed I would fight with fatiue, muscle stiffness and weakness, and stomach problems in varying degrees. When I came to Salt Lake to turn around a struggling reclaimed wood division of the company, I put in very long hours, with lots of stress week after week. The seizures increased and slowed me down until I eventually lost the job. I took a new job commuting to New York and back which was great for me when I was in Salt Lake because I could take it easy and relax a bit, but it was entirely the opposite in New York. Eventually I hit a point that felt just like it did when I came home from my mission. I left that job with a determination to rest and get back to full health.
It never happened; so I started the medical process that eventually led me to the seizure diagnosis almost two years later. The neurologist gave me a sample pack of Lyrica, an anti seizure medication, to try. Within two hours of taking the first tablet it felt as though the lights came on in a room that had gradually gone dark over a period of years. Immediately my focus and ability to concentrate were back, and after the first night on the drug I woke the next morning feeling rested for the first time in several years. We seem to have found the answer, for now. I may need to be on anti seizure medication for the rest of my life, but I will gladly accept that over the alternative.
So also I have neuropathy, which cause numbness and pain and weakness in the arms and legs. There is no direct connection between seizures and neuropathy. We considered that a long term B12 deficiency caused both, and I have additional tests to help take a look at that possibility, but it is unlikely. The other possiblilty is that the neuropathy was caused by a lack of proper rest for a long period of time due to the night time seizures. But that does not explain the cause of the seizures. I do not know of any head trama before the first evidence of the my seizures.
It is highly likely that the seizures or a B12 deficiency that caused the seizures are a hereditary condition, and all of my sisters, their children and my children are all at risk. Is it possible that all the depression, migraines, diabetes, stomach problems and any number of other health issues in the family are caused by simple partial seizures?
The doctors fairly quickly eliminated brain tumors, stroke, aneurism and a host of other potential problems which narrowed the focus down to neurological issues. The earliest appointment I could get with a neurologist was three months out. I had been fighting severe problems for two years; I could wait another three months, although, the other side of the issue was that I had been dealing with these increasing problems for two years and I wanted, or better said, needed treatment.
In July, still six weeks before my appointment with the neurologist, I reached a point one Saturday, after a week of over exertion, that I felt like I was slipping away. I did not feel fully in control of my actions; it didn't really feel like I was in my own head. I hurt everywhere, but there was no specific pain. I was very dizzy and my head felt like it was in a vise. I could barely talk. Tricia took me to the emergency room. If you ever want to bypass the wait in an emergency room, lay out those symptoms to them. They didn't come running to the waiting room for me, but they were right there. But after they determined that I did not have an immediately life threatening condition they backed off a bit. After several hours of observation and a few tests, they sent me home. The ER doctor thought, from her observation, that I might be having seizures, and she wrote up a report that she sent to my neurologist.
By the time I was able to see the neurologist I had a full page list of symptoms. Only three of those symptoms pointed directly to seizures. Had it not been for the ER doctor's report the neurologist likely would not have even tested me for seizure activity. But he did, and in late October we learned that I was enduring simple partial seizures in the left front lobe of my brain. They also found that I have mild neuropathy, a degradation of the nerves in the arms and legs.
In retrospect I have been dealing with the seizures all of my adult life. They would start or increase in strength or duration when I would reach high levels of activity over an extended amount of time, and would subside when I got sufficient rest. The challenge here is that the seizures would happen during my sleep and disrupt my sleep patterns reducing the amount of rest I would get when I slept. This is what happened on my mission. As most of you know missionaries are on the go from the time they get up until they go to bed; there is no time built in to relax and take it easy. That schedule increased the intensity or duration of the seizures until they affected my sleep patterns and I didn't have the energy to do much of anything. So I came home, rested for several months and eventually got back into a daily routine. The medical communities' best explanation was that I had some kind of digestive problem, ulcer etc. and I was depressed, but that never did seem right to me; if I wasn't so tired I wouldn't be depressed.
In the years that passed I would fight with fatiue, muscle stiffness and weakness, and stomach problems in varying degrees. When I came to Salt Lake to turn around a struggling reclaimed wood division of the company, I put in very long hours, with lots of stress week after week. The seizures increased and slowed me down until I eventually lost the job. I took a new job commuting to New York and back which was great for me when I was in Salt Lake because I could take it easy and relax a bit, but it was entirely the opposite in New York. Eventually I hit a point that felt just like it did when I came home from my mission. I left that job with a determination to rest and get back to full health.
It never happened; so I started the medical process that eventually led me to the seizure diagnosis almost two years later. The neurologist gave me a sample pack of Lyrica, an anti seizure medication, to try. Within two hours of taking the first tablet it felt as though the lights came on in a room that had gradually gone dark over a period of years. Immediately my focus and ability to concentrate were back, and after the first night on the drug I woke the next morning feeling rested for the first time in several years. We seem to have found the answer, for now. I may need to be on anti seizure medication for the rest of my life, but I will gladly accept that over the alternative.
So also I have neuropathy, which cause numbness and pain and weakness in the arms and legs. There is no direct connection between seizures and neuropathy. We considered that a long term B12 deficiency caused both, and I have additional tests to help take a look at that possibility, but it is unlikely. The other possiblilty is that the neuropathy was caused by a lack of proper rest for a long period of time due to the night time seizures. But that does not explain the cause of the seizures. I do not know of any head trama before the first evidence of the my seizures.
It is highly likely that the seizures or a B12 deficiency that caused the seizures are a hereditary condition, and all of my sisters, their children and my children are all at risk. Is it possible that all the depression, migraines, diabetes, stomach problems and any number of other health issues in the family are caused by simple partial seizures?
Good to hear you have some sort of closure with the issues you have been having. I woke up this morning thinking I need to call you for an update and there was your e-mail! That's nuts!
ReplyDeleteYour blog is great! I love all the pictures!