Hi everyone! I just found your website today and have spent the last several hours reading the threads. WOW! You have a lot of information available that doesn't seem to be freely given at the other E sites. As newly diagnosised with E, I am looking for real information.
So, here's my little story so you all can know where I am coming from. I have been working as an Environmental, Health & Safety Field Tech/Safety Manager for several years. I had gone back to school for my degree after a divorce and the death of both my parents. The year this all happened is when I experienced my first episode. I call it an episode as at that time I had no idea it was a seizure.
Every once in a great while I would have an episode. They never happened during the day or while I was awake. They only seemed to occur in my sleep and when I was under extreme stress. Well, this has gone on for some time now. Several times a year I have my episode that wakes me out of a sound sleep, I wander around the house wondering what day it is, do I have work in the morning, are my parents still alive, etc. Eventually I go back to sleep and wake up in the morning back to normal. Several months ago I had another episode on a weekend. In the morning I got up and saw this black tipped tongue, it didn't hurt really, just looked gross. I stopped by my dentist's office and he said it was trauma and I needed to see a DR. asap.
OK, so I finally go see my primary care physician. He listens to my story and sends me for a MRI, a carotid artery study, and a CAT scan. Several weeks later I get an appointment with a neuro, who promptly puts me on Dilantin. Orders a sleep deprived EEG and some other test for my heart. Within 2 weeks I am having an allergic reaction to the dilantin, can't seem to get a return phone call from the neuro and drag myself to my PCP for further evaluation. PCP gives me a steroid shot and some antihistamines and tells me to stop the dilantin. The neuro takes 4 days to call me back. Needless to say the neuro and staff were fired by the patient.
So, now I am waiting to get in to see another neuro. In the meantime I am investigating all the information I can find on E. My PCP doesn't seem overly concerned about the wait and in fact stated that she felt its such a mild form of E, she didn't need to report it to the DMV. So, with that in mind I admit I am wondering if I need those toxic drugs after all?
This is the first forum I've seen an open and honest discussion regarding alternative therapies, holistic options, and complementary therapies. In fact, this group seems to be open to exploring the cutting edges of what is being studied. All the other forums seem to be scared of open and frank discussion regarding treatment options. They seem scared of a lot of stuff like driving, swimming, horseback riding, hiking etc. I find that kind of talk aggravating to the extreme. E may very well be part of my life, but it is not my life.
The diagnosis of E has already interfered with my work etc. and I am looking for a new job as I type this. :? I feel fortunate that I've been able to do some really cool Field work and have been places most people would freak about(like the middle of a nuclear reactor core). So the job change is expected with having E, I certainly have no right to expect my coworkers to have to pull me out of a core somewhere. It just means I leave the Field aspect of my job to a younger generation.
So, here's my little story so you all can know where I am coming from. I have been working as an Environmental, Health & Safety Field Tech/Safety Manager for several years. I had gone back to school for my degree after a divorce and the death of both my parents. The year this all happened is when I experienced my first episode. I call it an episode as at that time I had no idea it was a seizure.
Every once in a great while I would have an episode. They never happened during the day or while I was awake. They only seemed to occur in my sleep and when I was under extreme stress. Well, this has gone on for some time now. Several times a year I have my episode that wakes me out of a sound sleep, I wander around the house wondering what day it is, do I have work in the morning, are my parents still alive, etc. Eventually I go back to sleep and wake up in the morning back to normal. Several months ago I had another episode on a weekend. In the morning I got up and saw this black tipped tongue, it didn't hurt really, just looked gross. I stopped by my dentist's office and he said it was trauma and I needed to see a DR. asap.
OK, so I finally go see my primary care physician. He listens to my story and sends me for a MRI, a carotid artery study, and a CAT scan. Several weeks later I get an appointment with a neuro, who promptly puts me on Dilantin. Orders a sleep deprived EEG and some other test for my heart. Within 2 weeks I am having an allergic reaction to the dilantin, can't seem to get a return phone call from the neuro and drag myself to my PCP for further evaluation. PCP gives me a steroid shot and some antihistamines and tells me to stop the dilantin. The neuro takes 4 days to call me back. Needless to say the neuro and staff were fired by the patient.
So, now I am waiting to get in to see another neuro. In the meantime I am investigating all the information I can find on E. My PCP doesn't seem overly concerned about the wait and in fact stated that she felt its such a mild form of E, she didn't need to report it to the DMV. So, with that in mind I admit I am wondering if I need those toxic drugs after all?
This is the first forum I've seen an open and honest discussion regarding alternative therapies, holistic options, and complementary therapies. In fact, this group seems to be open to exploring the cutting edges of what is being studied. All the other forums seem to be scared of open and frank discussion regarding treatment options. They seem scared of a lot of stuff like driving, swimming, horseback riding, hiking etc. I find that kind of talk aggravating to the extreme. E may very well be part of my life, but it is not my life.
The diagnosis of E has already interfered with my work etc. and I am looking for a new job as I type this. :? I feel fortunate that I've been able to do some really cool Field work and have been places most people would freak about(like the middle of a nuclear reactor core). So the job change is expected with having E, I certainly have no right to expect my coworkers to have to pull me out of a core somewhere. It just means I leave the Field aspect of my job to a younger generation.