I was diagnosed with "seizure disorder" two days ago, my neurologist told me it was a good idea to look up an online support group, so I figured I'd look around! This group looks like a bunch of nice people, very supportive and already I've learned a bunch of useful information! My head is spinning and I feel like I'm in shock still...
It all started in early December (2013), I work from home so I was home alone and I was taking a shower to get ready to go to Walmart during my lunch break. I had just looked at the clock so I knew what time it was. I woke up about an hour later on the floor, in alot of pain, covered in bruises and lumps on my head. I was very tired and went to bed (not smart, I know). I called my husband when I realized I shouldn't be sleeping, and he took me to the hospital. They said I had a syncope episode and a concussion and sent me home. It happened again three weeks later, about an hour unconscious on the floor after I had taken a shower, then again three months later when I wasn't anywhere near the shower. All three times the ER said syncope and concussion. The only indicator in all three cases was what I had liked to call was my "panic attacks" . I had had them for the last 12 years - since my daughter was born. It was a feeling I got in the pit of my stomach, like I had just messed something up really badly (i.e "impending doom", my neurologist helped clarify) - and my skin would crawl. These episodes would last anywhere from 5-30 seconds and would be triggered by a feeling of de ja vu for no reason. I have given I don't know how many doctors these symptoms in the last 12 years. Because they really never hurt anything - and I've had them tons of times, multiple times per day, not always resulting in these syncope episodes, I didn't give them much thought.
Last week I was sitting at my kitchen table playing cards with my husband and my dad and his wife when one of these "attacks" hit out of the blue. That is the last thing I remember. Apparently I had a grand mal seizure in front of everyone - including my kids. My 14 year old called 911. The seizure lasted about 3 minutes before I opened my eyes, although I wasn't coherent for another 10-15 minutes after that. I don't remember anything until I was in the ambulance.
I learned from the neurologist two days ago that these "attacks" have been mini-seizures all along, which terrifies me! They put me on Topamax, 50 mg 1x per day for the first week but just upped to 2x per day a couple days ago. So far I've only had one "attack" since he told me that they were seizures, and I was noticing that they had gone down since I started taking the meds (hadn't been keeping track before...) And no grand mal since last week thank goodness! (though if these syncope episodes were grand mals as my neurologist believes, they have been 3 weeks to 3 months inbetween episodes...)
I'm really scared of putting my family through that again! My husband has been on FMLA since it happened, and he's been scared to let me even go to the bathroom alone! How do people go back to a normal life after going through this?? Sorry for the long post... feeling a little traumatized
It all started in early December (2013), I work from home so I was home alone and I was taking a shower to get ready to go to Walmart during my lunch break. I had just looked at the clock so I knew what time it was. I woke up about an hour later on the floor, in alot of pain, covered in bruises and lumps on my head. I was very tired and went to bed (not smart, I know). I called my husband when I realized I shouldn't be sleeping, and he took me to the hospital. They said I had a syncope episode and a concussion and sent me home. It happened again three weeks later, about an hour unconscious on the floor after I had taken a shower, then again three months later when I wasn't anywhere near the shower. All three times the ER said syncope and concussion. The only indicator in all three cases was what I had liked to call was my "panic attacks" . I had had them for the last 12 years - since my daughter was born. It was a feeling I got in the pit of my stomach, like I had just messed something up really badly (i.e "impending doom", my neurologist helped clarify) - and my skin would crawl. These episodes would last anywhere from 5-30 seconds and would be triggered by a feeling of de ja vu for no reason. I have given I don't know how many doctors these symptoms in the last 12 years. Because they really never hurt anything - and I've had them tons of times, multiple times per day, not always resulting in these syncope episodes, I didn't give them much thought.
Last week I was sitting at my kitchen table playing cards with my husband and my dad and his wife when one of these "attacks" hit out of the blue. That is the last thing I remember. Apparently I had a grand mal seizure in front of everyone - including my kids. My 14 year old called 911. The seizure lasted about 3 minutes before I opened my eyes, although I wasn't coherent for another 10-15 minutes after that. I don't remember anything until I was in the ambulance.
I learned from the neurologist two days ago that these "attacks" have been mini-seizures all along, which terrifies me! They put me on Topamax, 50 mg 1x per day for the first week but just upped to 2x per day a couple days ago. So far I've only had one "attack" since he told me that they were seizures, and I was noticing that they had gone down since I started taking the meds (hadn't been keeping track before...) And no grand mal since last week thank goodness! (though if these syncope episodes were grand mals as my neurologist believes, they have been 3 weeks to 3 months inbetween episodes...)
I'm really scared of putting my family through that again! My husband has been on FMLA since it happened, and he's been scared to let me even go to the bathroom alone! How do people go back to a normal life after going through this?? Sorry for the long post... feeling a little traumatized
