Hello all. I just found this site and I'm glad I did. I was diagnosed last week with Simple Sensory Seizures. Still not sure exactly what that means as I have yet to have the follow-up with my neuro. But here's some history.
First of all, I am only 23. For the past 6-8 years, I have been having random episodes where I smell burning followed immediately by what I thought was a panic attack. For the first few years, it was rare and happened a few times a year. Within the last 5 years, it got more frequent, but nothing too major. All of my roommates have been familiar with it though because I would on occasion either be running around the house looking for fire or else I would ask them if something was burning. Then, this past year, it got bad. It started happening 2-3 times a day. Not every episode would send me into a 'panic attack', but many of them would. I actually started to get a phobia of anything that could cause a fire because it was happening to often. During all of this, I thought it was just related to my anxiety, just part of my panic attacks. Then I started charting them, and while they were a little more frequent when I was anxious or stressed, they were happening other ties too. Recently, the smells started expanding to include matches (sulfur) and burning plastic. I just thought i was going crazy. After talking with some people, I realized it might be more than anxiety, so I talked to my therapist about getting some neurological testing done. She figured it was purely psychological, but suggested to go ahead and rule out anything medical. I had to change doctors because my first one wouldn't take me seriously. the second one was just as confused as me, but referred me to a neurologist. I explained to my neuro what was going on and she was confused because I have no medical history that would explain anything neurological. But she went ahead and did a MRI and an EEG. I got called back after the first EEG and asked to do a sleep dep one. In both EEGS, they found abnormalities in the right temporal and central areas. My dr, therapist, and even neurologist were surprised by the findings! During our phone conversation, she told me that since it was mild, she was not recommending medication. I told her it was affecting my life, but I would talk to my regular doctor and get back to her on my decision. My doctor pointed out that they have been increasing in severity and frequency over the past few years and wants me on meds to stop the progression. So now i am trying to get ahold of my neuro and figure out what the next step is.
So- here are some of my questions- is the smell the aura and the "panic attack" the seizure? or is the smell just the seizure? also, with the reading I have been doing about sensor seizures, I recognized another symptom that I thought was just be going crazy. Sometimes I get feelings that I am disconnected from my body. It happens every month or two. Or I get foggy. Are these part of the seizures? Are there any dietary or lifestyle changes that I can do that could decrease them? I have no head traumas or anything like that, but I do wonder if my past drug use (mainly psychedelics) could have caused this. and lastly, what are your experiences on gabapentin?
Sorry I have so many questions and this is so long. this is all so new to me and I am so confused. Oh, and being diagnosed with seizures, does that mean I have epilepsy? thanks so much for all your help!
~Alissa
First of all, I am only 23. For the past 6-8 years, I have been having random episodes where I smell burning followed immediately by what I thought was a panic attack. For the first few years, it was rare and happened a few times a year. Within the last 5 years, it got more frequent, but nothing too major. All of my roommates have been familiar with it though because I would on occasion either be running around the house looking for fire or else I would ask them if something was burning. Then, this past year, it got bad. It started happening 2-3 times a day. Not every episode would send me into a 'panic attack', but many of them would. I actually started to get a phobia of anything that could cause a fire because it was happening to often. During all of this, I thought it was just related to my anxiety, just part of my panic attacks. Then I started charting them, and while they were a little more frequent when I was anxious or stressed, they were happening other ties too. Recently, the smells started expanding to include matches (sulfur) and burning plastic. I just thought i was going crazy. After talking with some people, I realized it might be more than anxiety, so I talked to my therapist about getting some neurological testing done. She figured it was purely psychological, but suggested to go ahead and rule out anything medical. I had to change doctors because my first one wouldn't take me seriously. the second one was just as confused as me, but referred me to a neurologist. I explained to my neuro what was going on and she was confused because I have no medical history that would explain anything neurological. But she went ahead and did a MRI and an EEG. I got called back after the first EEG and asked to do a sleep dep one. In both EEGS, they found abnormalities in the right temporal and central areas. My dr, therapist, and even neurologist were surprised by the findings! During our phone conversation, she told me that since it was mild, she was not recommending medication. I told her it was affecting my life, but I would talk to my regular doctor and get back to her on my decision. My doctor pointed out that they have been increasing in severity and frequency over the past few years and wants me on meds to stop the progression. So now i am trying to get ahold of my neuro and figure out what the next step is.
So- here are some of my questions- is the smell the aura and the "panic attack" the seizure? or is the smell just the seizure? also, with the reading I have been doing about sensor seizures, I recognized another symptom that I thought was just be going crazy. Sometimes I get feelings that I am disconnected from my body. It happens every month or two. Or I get foggy. Are these part of the seizures? Are there any dietary or lifestyle changes that I can do that could decrease them? I have no head traumas or anything like that, but I do wonder if my past drug use (mainly psychedelics) could have caused this. and lastly, what are your experiences on gabapentin?
Sorry I have so many questions and this is so long. this is all so new to me and I am so confused. Oh, and being diagnosed with seizures, does that mean I have epilepsy? thanks so much for all your help!
~Alissa
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