Hello, Epilepsy community I would like to share my story today to see if I can get some feedback or something on what has been happening to me for the next 4 years.
My story begins in the year 2015 when I was caught sleepwalking I knew I was because I heard my mother yell my name which then I made myself fall in the dream to wake up as messed up as it sounds it had to be the Christmas tree I fell on. After this event of falling, I laid there couldn't move but still able to hear everything the paramedics and my family talking but only seeing black, finally waking up in the ER with this doctor running test on me like crazy finding nothing. The only thing that kept standing out was that my heart rate wouldn't go down which the doctor wouldn't release me until it did. The ER doctor gave me 1mg of Keppra as a precaution if I remember correctly.
Now we are in 2016 I was in my living room video chatting with a friend when one of my family members were being obnoxious and loud I was getting angry but while video chatting I was holding it in. For some dumb odd reason I say out loud ''it's so bright in this room that I could have a seizure'' Because the thought was in the head how bright lights and flashing lights can cause you to have a seizure. Then I black out my family finds me on the floor I still can hear all of them even the person I was video chatting with but I couldn't move again just seen black. My family said I was just laying on the floor not convulsing no shaking. Again finally wake up in the ER this time I was admitted for a week they ran more test and was seen by a neurologist the neurologist requested an MRI, EEG, Cat Scan all normal but still started me on Dilantin first for a week to see what will happen again and if I would have a seizure within that week but I didn't The neurologist told me she was going to stop the Dilantin and put me onto Keppra 250mg and only 30 days of this medication. If I go 30 days seizure free then I'm not epileptic I will not need to continue this medication if I do then I'm epileptic and to follow up with a neurologist. I went 30 days seizure free on Keppra 250mg she only gave me a prescription for 30 days so I'll say a week off of the Keppra I started having seizures. Again In the ER they give me more seizure medication other than Keppra at this point they have me on Carbamazepine, Topamax, and Keppra I was basically a zombie I couldn't even talk and I was having real Convulsions with the combination of sleepwalking now that my family was witnessing they stopped the Carbamazepine, Topamax, and put me on Keppra 3,000mg at this point I just was sleeping my brother rushed me to the ER which then they lowered the Keppra to 2,500mg I could function now but still having seizures I had 15 seizure in the year (2016) went from 270lb to 205 and even had a seizure on Christmas day.
We come into the year 2017 I convince my doctor to lower my medication more because of the I've been having tremors from the anxiety hearing things now waking up at night in fear and morning thoughts of suicide I'm so ashamed to admit this forgetting my family for a couple mins can't remember their names or times I can't even read . He lowered me to 1,500mg after this I had 1 or 2 seizures but in all of the year, I only had 5 seizures. No sleepwalking. Blood Test still aren't showing anything abnormal my weight gain slowly back I'm up to 250lbs.
Now we are this year 2018 I try to convince him more to lower the medication since I had another seizure on Christmas day last year because I'm starting to think it is the Keppra that is causing me these seizures that I might not be epileptic I know I'm no doctor he knows more than me. But I've never had seizures my whole life I've had 3 MRIs, 1 Cat Scan, 2 Sleep Studies, 5 EEGs. Heart and lung scan and they all have been normal. I have had so many blood test and blood level test I can't even count and all of them have been normal. He Agrees to lower my dosage to 1,000mg this year I still have extreme anxiety the tremors heart beating fast hasn't stopped my blood pressure is now a problem after years on this medication and my weight has gone up to 316lb. This year I've had 3 seizures after the one on mothers day I decided to take it into my own hands and take my medication down to 750mg I have now been seizure free for 7 months most than I ever have in 4 years. I am not sure if I found the right dosage myself or I really shouldn't be taking this medication the fear anxiety is still unbearable hearing things sometimes can't remember my family names and can't read still happens but no convulsions.
I get to the doctor finally and try to explain my symptoms to him again to show him I have been doing better now on 750mg he told me even though I was having seizures on 1000mg that I should go back onto that and tried to add more medication in place of this I refused. The symptoms I just can't take I refuse to be on anti-depression meds which he recommends basically telling me that I should just deal with the symptoms if the medication is working but that's the point it's not I've been still having seizures on this medication my life has been horrible for 4 years since all of this honestly I just want my life back to normal I understand if I am epileptic I need to face it but I don't feel like I am. I never had any of these things happen until these drugs got into my body. I'm sorry for my rant and please don't destroy me with your comments I know how hard some people can be its just been a stressful 4 years.
My story begins in the year 2015 when I was caught sleepwalking I knew I was because I heard my mother yell my name which then I made myself fall in the dream to wake up as messed up as it sounds it had to be the Christmas tree I fell on. After this event of falling, I laid there couldn't move but still able to hear everything the paramedics and my family talking but only seeing black, finally waking up in the ER with this doctor running test on me like crazy finding nothing. The only thing that kept standing out was that my heart rate wouldn't go down which the doctor wouldn't release me until it did. The ER doctor gave me 1mg of Keppra as a precaution if I remember correctly.
Now we are in 2016 I was in my living room video chatting with a friend when one of my family members were being obnoxious and loud I was getting angry but while video chatting I was holding it in. For some dumb odd reason I say out loud ''it's so bright in this room that I could have a seizure'' Because the thought was in the head how bright lights and flashing lights can cause you to have a seizure. Then I black out my family finds me on the floor I still can hear all of them even the person I was video chatting with but I couldn't move again just seen black. My family said I was just laying on the floor not convulsing no shaking. Again finally wake up in the ER this time I was admitted for a week they ran more test and was seen by a neurologist the neurologist requested an MRI, EEG, Cat Scan all normal but still started me on Dilantin first for a week to see what will happen again and if I would have a seizure within that week but I didn't The neurologist told me she was going to stop the Dilantin and put me onto Keppra 250mg and only 30 days of this medication. If I go 30 days seizure free then I'm not epileptic I will not need to continue this medication if I do then I'm epileptic and to follow up with a neurologist. I went 30 days seizure free on Keppra 250mg she only gave me a prescription for 30 days so I'll say a week off of the Keppra I started having seizures. Again In the ER they give me more seizure medication other than Keppra at this point they have me on Carbamazepine, Topamax, and Keppra I was basically a zombie I couldn't even talk and I was having real Convulsions with the combination of sleepwalking now that my family was witnessing they stopped the Carbamazepine, Topamax, and put me on Keppra 3,000mg at this point I just was sleeping my brother rushed me to the ER which then they lowered the Keppra to 2,500mg I could function now but still having seizures I had 15 seizure in the year (2016) went from 270lb to 205 and even had a seizure on Christmas day.
We come into the year 2017 I convince my doctor to lower my medication more because of the I've been having tremors from the anxiety hearing things now waking up at night in fear and morning thoughts of suicide I'm so ashamed to admit this forgetting my family for a couple mins can't remember their names or times I can't even read . He lowered me to 1,500mg after this I had 1 or 2 seizures but in all of the year, I only had 5 seizures. No sleepwalking. Blood Test still aren't showing anything abnormal my weight gain slowly back I'm up to 250lbs.
Now we are this year 2018 I try to convince him more to lower the medication since I had another seizure on Christmas day last year because I'm starting to think it is the Keppra that is causing me these seizures that I might not be epileptic I know I'm no doctor he knows more than me. But I've never had seizures my whole life I've had 3 MRIs, 1 Cat Scan, 2 Sleep Studies, 5 EEGs. Heart and lung scan and they all have been normal. I have had so many blood test and blood level test I can't even count and all of them have been normal. He Agrees to lower my dosage to 1,000mg this year I still have extreme anxiety the tremors heart beating fast hasn't stopped my blood pressure is now a problem after years on this medication and my weight has gone up to 316lb. This year I've had 3 seizures after the one on mothers day I decided to take it into my own hands and take my medication down to 750mg I have now been seizure free for 7 months most than I ever have in 4 years. I am not sure if I found the right dosage myself or I really shouldn't be taking this medication the fear anxiety is still unbearable hearing things sometimes can't remember my family names and can't read still happens but no convulsions.
I get to the doctor finally and try to explain my symptoms to him again to show him I have been doing better now on 750mg he told me even though I was having seizures on 1000mg that I should go back onto that and tried to add more medication in place of this I refused. The symptoms I just can't take I refuse to be on anti-depression meds which he recommends basically telling me that I should just deal with the symptoms if the medication is working but that's the point it's not I've been still having seizures on this medication my life has been horrible for 4 years since all of this honestly I just want my life back to normal I understand if I am epileptic I need to face it but I don't feel like I am. I never had any of these things happen until these drugs got into my body. I'm sorry for my rant and please don't destroy me with your comments I know how hard some people can be its just been a stressful 4 years.