resaebiunne
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I thought I would update you all on my status. I started seeing an epileptologist recently. The doctor that I see has an epilepsy monitoring unit here in Orlando called the Orlando Epilepsy Center. My experience while in the monitoring unit was very good. It's a standard EEG with video recording but the recording is 5 days long. They provide 3 meals a day and they had a lounge where people could congregate. The electrodes are attached to a data logger and they could plug in an external battery to do a continuous EEG without tethering you to a cable in your room. The OEC is not part of a hospital so the experience is very good. They said that it's more like a hotel stay than a hospital stay. Free drinks and food. Lots of food. I gained about 1.5 pounds just from that one week. The experience reminded me of the cruise I went on last year.
Anyway, I had an appointment today with the nurse practitioner who reviewed the results of my EEG. I suspected I was having focal seizures, but the nurse said they were primary generalized seizures. I wasn't on medication for my epilepsy until last summer when I had at least 3 tonic-clonic seizures. Somehow I was lucky in that the seizures would abort before I lost consciousness. The nurses at the monitoring unit did not take me off my medication because they were seeing the seizure activity. Instead, they actually increased my dose of lamictal. I was originally put on the lamictal because of my schizoaffective disorder. Lamitcal is not just an antiepileptic, it is also a mood stabilizer. Essentially schizoaffective disorder (bipolar type) is a combination of schizophrenia and bipolar. Today, the nurse wanted me to increase my dosage of lamictal further because it did not stop my seizures. The increased dose of lamictal that I took while in the EMU only worked for a few days before my seizures came back. it was also mentioned that some of the seizures I had while in the EMU I did not notice and so I never pressed the event button. This is interesting to me as typically I do not have any auras with my seizures.
The EEG confirmed absolutely that I have epilepsy (and probably always have had). I was first diagnosed with seizures when I was 12 and have had several "standard" EEGs confirm this and come back abnormal. The EEG results clearly showed seizure like activity, many episodes of which I caught. During the EEG, they give you a button to press when you have any seizure activity or auras that you notice.
The nurse continued to say that he would bump up my dosage of lamictal at my next visit if I continued to have seizures. Past that point, they will be able to diagnose me with refractory seizures and that I would be a candidate for a VNS. Apparently my epilepsy has become quite severe even though my seizures have been relatively minor compared to some on this forum. For some reason my seizures would be tonic-clonic seizures if the seizure didn't abort so quickly after it started. At this point I consider myself lucky.
I started keeping a diary of my seizure activity and it has been interesting to see. Some days I'll have only a few seizures; 2-3 at most. Other days I have upwards of 10-12 seizures. If the seizure didn't abort before it became a tonic-clonic seizure I would be in a real mess.
Switching from my previous doctor (who was only a neurologist) to an epileptologist is probably the best decision I have made when it comes to proper treatment. The nurse told me that I was already on the right medications to control my seizures, so that gives me a little more insight into the treatment plan of my previous doctor. It's unfortunate however that my previous doctor simply was not trying hard enough to get my seizures under control.
Anywho, that's really all I have to say. It's good to be on the right track. I try and take it 1 day at a time since I got laid off in January. I am fortunate to be in a good position so that when (and if) I return to a full-time job that I won't have to worry about my health. Cheers!
Anyway, I had an appointment today with the nurse practitioner who reviewed the results of my EEG. I suspected I was having focal seizures, but the nurse said they were primary generalized seizures. I wasn't on medication for my epilepsy until last summer when I had at least 3 tonic-clonic seizures. Somehow I was lucky in that the seizures would abort before I lost consciousness. The nurses at the monitoring unit did not take me off my medication because they were seeing the seizure activity. Instead, they actually increased my dose of lamictal. I was originally put on the lamictal because of my schizoaffective disorder. Lamitcal is not just an antiepileptic, it is also a mood stabilizer. Essentially schizoaffective disorder (bipolar type) is a combination of schizophrenia and bipolar. Today, the nurse wanted me to increase my dosage of lamictal further because it did not stop my seizures. The increased dose of lamictal that I took while in the EMU only worked for a few days before my seizures came back. it was also mentioned that some of the seizures I had while in the EMU I did not notice and so I never pressed the event button. This is interesting to me as typically I do not have any auras with my seizures.
The EEG confirmed absolutely that I have epilepsy (and probably always have had). I was first diagnosed with seizures when I was 12 and have had several "standard" EEGs confirm this and come back abnormal. The EEG results clearly showed seizure like activity, many episodes of which I caught. During the EEG, they give you a button to press when you have any seizure activity or auras that you notice.
The nurse continued to say that he would bump up my dosage of lamictal at my next visit if I continued to have seizures. Past that point, they will be able to diagnose me with refractory seizures and that I would be a candidate for a VNS. Apparently my epilepsy has become quite severe even though my seizures have been relatively minor compared to some on this forum. For some reason my seizures would be tonic-clonic seizures if the seizure didn't abort so quickly after it started. At this point I consider myself lucky.
I started keeping a diary of my seizure activity and it has been interesting to see. Some days I'll have only a few seizures; 2-3 at most. Other days I have upwards of 10-12 seizures. If the seizure didn't abort before it became a tonic-clonic seizure I would be in a real mess.
Switching from my previous doctor (who was only a neurologist) to an epileptologist is probably the best decision I have made when it comes to proper treatment. The nurse told me that I was already on the right medications to control my seizures, so that gives me a little more insight into the treatment plan of my previous doctor. It's unfortunate however that my previous doctor simply was not trying hard enough to get my seizures under control.
Anywho, that's really all I have to say. It's good to be on the right track. I try and take it 1 day at a time since I got laid off in January. I am fortunate to be in a good position so that when (and if) I return to a full-time job that I won't have to worry about my health. Cheers!
