Hello All,
I'm not sure if I'm posting in the right place, but here goes. I'm going to start with the present, and work my way backward. This past Thursday, I am almost certain I had a seizure in my sleep. I don't know what kind, as it didn't wake my boyfriend up (as did one several months ago). I am back to work but experiencing some symptoms I wasn't expecting. Are these after-effects or are they all in my head (no pun intended)? I am a fairly good typist and a great speller. Today, I am having a lot of trouble with both, even finding myself having to stop in the middle of writing a pretty simple word to remind myself how it is spelled, or having to re-write a word several times before getting it right. I cannot recall this happening to me since the weeks immediately following my first seizure in July of 2007. July 1st, 2007, I was spending time with family when I had a major tonic-clonic seizure. I don't remember anything from about 10 minutes before the seizure, to about 15 minutes afterward. From that time, my memory of the next several hours and days is spotty, at best. I won't go into too much detail, because I know this is already very long, but a CT scan and MRI revealed a lemon-sized olfactory meningioma which was removed 10 days later. As a result of the tumor, I have been anosmic since the surgery. I have also been on 600mgs of lamictal/day to prevent future seizures. I have experienced minor phantom olfactory hallucinations off and on, but never a seizure. My boyfriend now tells me that I had a seizure in my sleep several months ago. He assures me that he told me after the fact, but I have no recollection of having that conversation with him. So, when I went in to see my neurologist 16 days ago (thinking I had not had a seizure since before my surgery), I asked if we could start weaning me off the lamictal. She said we could try, but I was disappointed when she only agreed to a reduction of 100mgs a day. 11 days later, I am 99% certain I had another seizure in my sleep. All day Thursday (last week), I was having very strong olfactory hallucinations. I awoke at some point during the night to an overpowering, overwhelming and horrible "smell," confusion and disorientation, muscle tightness, and dizziness. I tried to get back to sleep, but had a strange feeling of what I can best describe as an itching sensation all over my skin, and a pain in the big toe on my right foot, as if I was periodically being stuck with a pin. I finally made it back to sleep. When I awoke to my alarm, the confusion and dizziness were still there, as was the bad "smell." I was about to get into the shower to get ready for work, when I felt that it was probably not a good idea, as I though I might seize again, or faint. Called my boss, told him I wasn't coming in, and went back to sleep for 3 hours. Woke up again, still confused; headache all day, feeling of sadness, sore muscles and that "SMELL." God, it was horrible and indescribable. Went back up to 600mgs of the lamictal. I started to feel better on Saturday, but have had bouts of intermittent "fogginess" since then. Today is my first day back to work, and, as noted above, am having a lot of trouble typing and spelling. Also, I feel very tired and really sad and am still having mild olfactory hallucinations.
I'd love to get any input from folks on this thread about their own experiences, as well as thoughts about mine, as I'm not having an easy time coming to terms with the fact that this disorder is real and likely permanent. So is this epilepsy? Do I finally have to suck it up and admit to myself that I have it? My disorder had been so well-controlled with the medication, I was convinced it didn't even exist. The last few days have been a real wake-up call.
Thanks all, and I'm glad to have joined this community. Right now, I'm feeling pretty alone.
SarahD
I'm not sure if I'm posting in the right place, but here goes. I'm going to start with the present, and work my way backward. This past Thursday, I am almost certain I had a seizure in my sleep. I don't know what kind, as it didn't wake my boyfriend up (as did one several months ago). I am back to work but experiencing some symptoms I wasn't expecting. Are these after-effects or are they all in my head (no pun intended)? I am a fairly good typist and a great speller. Today, I am having a lot of trouble with both, even finding myself having to stop in the middle of writing a pretty simple word to remind myself how it is spelled, or having to re-write a word several times before getting it right. I cannot recall this happening to me since the weeks immediately following my first seizure in July of 2007. July 1st, 2007, I was spending time with family when I had a major tonic-clonic seizure. I don't remember anything from about 10 minutes before the seizure, to about 15 minutes afterward. From that time, my memory of the next several hours and days is spotty, at best. I won't go into too much detail, because I know this is already very long, but a CT scan and MRI revealed a lemon-sized olfactory meningioma which was removed 10 days later. As a result of the tumor, I have been anosmic since the surgery. I have also been on 600mgs of lamictal/day to prevent future seizures. I have experienced minor phantom olfactory hallucinations off and on, but never a seizure. My boyfriend now tells me that I had a seizure in my sleep several months ago. He assures me that he told me after the fact, but I have no recollection of having that conversation with him. So, when I went in to see my neurologist 16 days ago (thinking I had not had a seizure since before my surgery), I asked if we could start weaning me off the lamictal. She said we could try, but I was disappointed when she only agreed to a reduction of 100mgs a day. 11 days later, I am 99% certain I had another seizure in my sleep. All day Thursday (last week), I was having very strong olfactory hallucinations. I awoke at some point during the night to an overpowering, overwhelming and horrible "smell," confusion and disorientation, muscle tightness, and dizziness. I tried to get back to sleep, but had a strange feeling of what I can best describe as an itching sensation all over my skin, and a pain in the big toe on my right foot, as if I was periodically being stuck with a pin. I finally made it back to sleep. When I awoke to my alarm, the confusion and dizziness were still there, as was the bad "smell." I was about to get into the shower to get ready for work, when I felt that it was probably not a good idea, as I though I might seize again, or faint. Called my boss, told him I wasn't coming in, and went back to sleep for 3 hours. Woke up again, still confused; headache all day, feeling of sadness, sore muscles and that "SMELL." God, it was horrible and indescribable. Went back up to 600mgs of the lamictal. I started to feel better on Saturday, but have had bouts of intermittent "fogginess" since then. Today is my first day back to work, and, as noted above, am having a lot of trouble typing and spelling. Also, I feel very tired and really sad and am still having mild olfactory hallucinations.
I'd love to get any input from folks on this thread about their own experiences, as well as thoughts about mine, as I'm not having an easy time coming to terms with the fact that this disorder is real and likely permanent. So is this epilepsy? Do I finally have to suck it up and admit to myself that I have it? My disorder had been so well-controlled with the medication, I was convinced it didn't even exist. The last few days have been a real wake-up call.
Thanks all, and I'm glad to have joined this community. Right now, I'm feeling pretty alone.
SarahD
