1st Seizure at 30 years old, advice/help

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Hello, My name is jenifer, 30 years old, mother of two girls. A week and a half ago, friday night i get in bed to go to sleep. I wake up the next day in the hospital with no recollection as to what the hell happened. I had a horrible migraine, and severely nauseous. In and out all day and woke up Sunday. Sunday I was coherent but still had no idea as to what happened. Turns out I had my first ever seizure which was also a grand-mal seizure. Friday night, i had began to seize, i punched my husband in the back so hard he turned over to yell at me, to only see me seizing. He called 9-1-1. While on the phone with 9-1-1 i did stop breathing, and began to seize again. Ambulance showed up, apparently started asking me questions, asked me the year and I replied "1996". I was lost, no idea whatsoever as to what was going on. They took me to the hospital, and again I had another seizure, 2-3 more within the hour. My brain was FRIED! My husband had to make all medical decisions as I obviously couldnt. They did a spinal tap to ensure i didnt have meningitis. CT Scan, MRI, and EEG. All test supposedly came back normal. Doctors are trying to say that because I take TRAMADOL for pain (been on it for over 5 years), that the tramadol is what caused my seizure. I dont believe it, and now every single night I am terrified I am going to have another, and not even be able to remember. Neuro is making me do one more 3 hour EEG, but if that comes back normal he is going to blame it on the Tramadol. Why after all these years, would it just not affect me?? Im just a mess, and filtered... Oh and I am still suffering from SHORT TERM MEMORY LOSS and its driving me insane guys... me seizure was 10 days ago! Why can i still not remember things? I forget where i put things, forget conversations, forget EVERYTHING! I legit have to put reminders in my phone or else I wont remember anything.. Is that normal!??

Comments

Hi mrsm1ller, Thanks so much

Submitted by Anonymous on Tue, 2019-07-23 - 14:43

Hi mrsm1ller, Thanks so much for sharing your story, it sounds like you’ve been through a lot. It’s very important that you continue to follow-up with your healthcare team to determine what treatment is best for you and any potential changes in seizure types, frequency, side effects, behaviors, or symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf . To help prepare for your visit with the neurologist, please visit: https://www.epilepsy.com/sites/core/files/atoms/files/717QHT_QuestionsHealthcareTeam_05-2019.pdf For assistance finding a specialist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialisthttps://www.epilepsy.com/affiliates Additionally you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org , where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline Seizures can take on many different forms and affect different people in different ways. Learn more about seizures and the various types of seizures here: https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memoryhttps://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizurehttps://www.epilepsy.com/learn/types-seizures For additional information on seizures, seizure safety please visitLearn seizure first aid:https://www.epilepsy.com/learn/seizure-first-aid-and-safetyLearn how to live with seizures, potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safehttps://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleepingCreate a seizure response or action plan:https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around you to understand what do if you have a seizure: Use a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Track your seizures, record your medical history, medications, side effects, moods, triggers, or other personal experiences. Have a Seizure alert device: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf

Hi mrsm1ller, Thanks so much for sharing your story, it sounds like you’ve been through a lot. It’s very important that you continue to follow-up with your healthcare team to determine what treatment is best for you and any potential changes in seizure types, frequency, side effects, behaviors, or symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf .          To help  prepare for your visit with the neurologist, please visit: https://www.epilepsy.com/sites/core/files/atoms/files/717QHT_QuestionsHealthcareTeam_05-2019.pdf     For assistance finding a specialist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialisthttps://www.epilepsy.com/affiliates Additionally you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org , where a trained information specialist can connect you to resources,  provide referrals and additional support.epilepsy.com/helpline Seizures can take on many different forms and affect different people in different ways. Learn more about seizures and the various types of seizures here: https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memoryhttps://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizurehttps://www.epilepsy.com/learn/types-seizures For additional information on seizures, seizure safety please visitLearn seizure first aid:https://www.epilepsy.com/learn/seizure-first-aid-and-safetyLearn how to live with seizures, potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safehttps://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleepingCreate a seizure response or action plan:https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around you to understand what do if you have a seizure: Use a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Track your seizures, record your medical history, medications, side effects, moods, triggers, or other personal experiences. Have a Seizure alert device:  https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf 

Hi mrsm1ller, Thanks so much for sharing your story, it sounds like you’ve been through a lot. It’s very important that you continue to follow-up with your healthcare team to determine what treatment is best for you and any potential changes in seizure types, frequency, side effects, behaviors, or symptoms. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf . To help prepare for your visit with the neurologist, please visit: https://www.epilepsy.com/sites/core/files/atoms/files/717QHT_QuestionsHealthcareTeam_05-2019.pdf For assistance finding a specialist near you, please visit: https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialisthttps://www.epilepsy.com/affiliates Additionally you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org , where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline Seizures can take on many different forms and affect different people in different ways. Learn more about seizures and the various types of seizures here: https://www.epilepsy.com/learn/challenges-epilepsy/thinking-and-memoryhttps://www.epilepsy.com/learn/about-epilepsy-basics/what-happens-during-seizurehttps://www.epilepsy.com/learn/types-seizures For additional information on seizures, seizure safety please visitLearn seizure first aid:https://www.epilepsy.com/learn/seizure-first-aid-and-safetyLearn how to live with seizures, potential risks and safety tips: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safehttps://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleepingCreate a seizure response or action plan:https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms which is a helpful tool for those around you to understand what do if you have a seizure: Use a diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary Track your seizures, record your medical history, medications, side effects, moods, triggers, or other personal experiences. Have a Seizure alert device: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf

Hi Jenifer:So I can

Submitted by Jazz101 on Tue, 2019-07-23 - 18:54

Hi Jenifer:So I can understand how this is really confusing you. By the way, you said the neurologist suggested a 3-hour EEG. Why not tell him or her to put a hold on the 3-hour EEG and instead schedule a 72-hour Ambulatory EEG?I say that because, while results aren't guaranteed, a 72-hour EEG is more probable to gather information than a 3-hour EEG. The 72-hour EEG is simple. You go in, and they set up the EEG. They will strap your head and you'll be sent home. They will outline what to do in case you or anyone sees any unusual activity. The advantage to the 72-hour EEG is that it will gather information while you are asleep and while you are awake. And, obviously, it will be over a 3-day period versus 3 hours, during which it's hard to even fall asleep.The advantage of an EEG during sleep I that the brain is more relaxed hence any unusual activity will pretty much stand out on its own. Put it this way. It's like using a swimming pool. If five individuals jump in at the same time, the movement in the water cannot be clearly defined. After all, the simultaneous waves generated five individuals will interfere with the clarity of what the actual waves of a single individual looks like. Because the brain is more relaxed during sleep, neurological activity can stand out with more clarity. I don't now all of the facts in this case in terms of what the neurologist is looking at so I can't say with certainty how he or she came to the conclusion that it is just the tramadol. What I can tell you is that someone can have Epilepsy and still walk away with EEGs and MRIs that look pretty normal. In my case, the abnormal activity shows up only during a seizure or an aura. No aura and no seizure and my EEG looks pretty normal. So yes, someone can have Epilepsy and still walk away with EEGs and MRIs that look pretty normal. If you are in the United States, a great way to find hospitals that are pretty good at neurology and neurosurgery is US News and World Report. Here is the link. See if you can find any of the better names close to where you live.https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryIt's not unusual for someone to experience and seizure and can only recall the feelings prior to the seizure and after the seizure. I was diagnosed with Complex Partial Seizures, better known today as "Focal Seizures." My seizures are quite unusual. For example, I can experience a seizure yet still be able to perform certain simple tasks, such as showering, walking up and down the stairs or even walking on the street, without any collision with others or things. When I was undergoing the video EEG prior to surgery, two of the medical team visited me to perform some of their tests. While I was speaking with them, I sensed and aura and asked for a time out. My next recollection was being back in the chair next to my bed telling them I am ready.What I missed was what they told me. They said after I asked for the timeout, I carefully got up, carefully stepped over the wires attached to me, and went to the bathroom. They said they followed me to observe. I was told when I entered the bathroom I spent about 20 seconds, then I carefully opened the door and came back to take a seat on the chair next to my bed and told them I was ready.I had zero recollection of the activity they observed. Yet, I was still able to not trip on the wires as I headed to the bathroom; I was able to open the door to the bathroom and carefully step in and then close the door before I eventually opened the door and step out and take the seat right next to them; none of which I could recall. Try to find a hospital with good ratings in neurology and neurosurgery Jenifer and seek a second opinion if you feel your neurologist might be missing something. Use the link I attached and try to find a hospital that might be listed as you scroll down.Try to minimize guessing Jenifer. Guessing just makes us guess even more, and that doesn't help because guessing makes us only see what can go wrong. The brain is in a league of its own. It oversees so many things. And, as my neurosurgeon told me prior to surgery; "We learn new things about it everyday."The unusual lapses in memory is not unusual Jenifer. I know about that. Like you, I take a lot of notes, usually via my email. The info will always be in your "draft" section. I have documented activity that dates back quite a few years. And one more thing, what you are currently experiencing doesn't make you any less smart that you already were. It just interfered with the rate at which you can recall activity. In my case, yes my short term memory at times gets the best of me. And post surgery, given it was so close to "language and speech and memory", well, at times I do have setbacks in word finding as I speak. But I am no less smart that I was. Neither are you.Best Regards

Hi Jenifer:So I can understand how this is really confusing you. By the way, you said the neurologist suggested a 3-hour EEG. Why not tell him or her to put a hold on the 3-hour EEG and instead schedule a 72-hour Ambulatory EEG?I say that because, while results aren't  guaranteed, a 72-hour EEG is more probable to gather information than a 3-hour EEG. The 72-hour EEG is simple. You go in, and they set up the EEG. They will strap your head and you'll be sent home. They will outline what to do in case you or anyone sees any unusual activity. The advantage to the 72-hour EEG is that it will gather information while you are asleep and while you are awake. And, obviously, it will be over a 3-day period versus 3 hours, during which it's hard to even fall asleep.The advantage of an EEG during sleep I that the brain is more relaxed hence any unusual activity will pretty much stand out on its own. Put it this way. It's like using a swimming pool. If five individuals jump in at the same time, the movement in the water cannot be clearly defined. After all, the simultaneous waves generated five individuals will interfere with the clarity of what the actual waves of a single individual looks like. Because the brain is more relaxed during sleep, neurological activity can stand out with more clarity. I don't now all of the facts in this case in terms of what the neurologist is looking at so I can't say with certainty how he or she came to the conclusion that it is just the tramadol. What I can tell you is that someone can have Epilepsy and still walk away with EEGs and MRIs that look pretty normal. In my case, the abnormal activity shows up only during a seizure or an aura. No aura and no seizure and my EEG looks pretty normal. So yes, someone can have Epilepsy and still walk away with EEGs and MRIs that look pretty normal. If you are in the United States, a great way to find hospitals that are pretty good at neurology and neurosurgery is US News and World Report. Here is the link. See if you can find any of the better names close to where you live.https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryIt's not unusual for someone to experience and seizure and can only recall the feelings prior to the seizure and after the seizure. I was diagnosed with Complex Partial Seizures, better known today as "Focal Seizures." My seizures are quite unusual. For example, I can experience a seizure yet still be able to perform certain simple tasks, such as showering, walking up and down the stairs or even walking on the street, without any collision with others or things. When I was undergoing the video EEG prior to surgery, two of the medical team visited me to perform some of their tests. While I was speaking with them, I sensed and aura and asked for a time out. My next recollection was being back in the chair next to my bed telling them I am ready.What I missed was what they told me. They said after I asked for the timeout, I carefully got up, carefully stepped over the wires attached to me, and went to the bathroom. They said they followed me to observe. I was told when I entered the bathroom I spent about 20 seconds, then I carefully opened the door and came back to take a seat on the chair next to my bed and told them I was ready.I had zero recollection of the activity they observed. Yet, I was still able to not trip on the wires as I headed to the bathroom; I was able to open the door to the bathroom and carefully step in and then close the door before I eventually opened the door and step out and take the seat right next to them; none of which I could recall. Try to find a hospital with good ratings in neurology and neurosurgery Jenifer and seek a second opinion if you feel your neurologist might be missing something. Use the link I attached and try to find a hospital that might be listed as you scroll down.Try to minimize guessing Jenifer. Guessing just makes us guess even more, and that doesn't help because guessing makes us only see what can go wrong. The brain is in a league of its own. It oversees so many things. And, as my neurosurgeon told me prior to surgery; "We learn new things about it everyday."The unusual lapses in memory is not unusual Jenifer. I know about that. Like you, I take a lot of notes, usually via my email. The info will always be in your "draft" section. I have documented activity that dates back quite a few years. And one more thing, what you are currently experiencing doesn't make you any less smart that you already were. It just interfered with the rate at which you can recall activity. In my case, yes my short term memory at times gets the best of me. And post surgery, given it was so close to "language and speech and memory", well, at times I do have setbacks in word finding as I speak. But I am no less smart that I was. Neither are you.Best Regards

Hi Jenifer:So I can understand how this is really confusing you. By the way, you said the neurologist suggested a 3-hour EEG. Why not tell him or her to put a hold on the 3-hour EEG and instead schedule a 72-hour Ambulatory EEG?I say that because, while results aren't guaranteed, a 72-hour EEG is more probable to gather information than a 3-hour EEG. The 72-hour EEG is simple. You go in, and they set up the EEG. They will strap your head and you'll be sent home. They will outline what to do in case you or anyone sees any unusual activity. The advantage to the 72-hour EEG is that it will gather information while you are asleep and while you are awake. And, obviously, it will be over a 3-day period versus 3 hours, during which it's hard to even fall asleep.The advantage of an EEG during sleep I that the brain is more relaxed hence any unusual activity will pretty much stand out on its own. Put it this way. It's like using a swimming pool. If five individuals jump in at the same time, the movement in the water cannot be clearly defined. After all, the simultaneous waves generated five individuals will interfere with the clarity of what the actual waves of a single individual looks like. Because the brain is more relaxed during sleep, neurological activity can stand out with more clarity. I don't now all of the facts in this case in terms of what the neurologist is looking at so I can't say with certainty how he or she came to the conclusion that it is just the tramadol. What I can tell you is that someone can have Epilepsy and still walk away with EEGs and MRIs that look pretty normal. In my case, the abnormal activity shows up only during a seizure or an aura. No aura and no seizure and my EEG looks pretty normal. So yes, someone can have Epilepsy and still walk away with EEGs and MRIs that look pretty normal. If you are in the United States, a great way to find hospitals that are pretty good at neurology and neurosurgery is US News and World Report. Here is the link. See if you can find any of the better names close to where you live.https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryIt's not unusual for someone to experience and seizure and can only recall the feelings prior to the seizure and after the seizure. I was diagnosed with Complex Partial Seizures, better known today as "Focal Seizures." My seizures are quite unusual. For example, I can experience a seizure yet still be able to perform certain simple tasks, such as showering, walking up and down the stairs or even walking on the street, without any collision with others or things. When I was undergoing the video EEG prior to surgery, two of the medical team visited me to perform some of their tests. While I was speaking with them, I sensed and aura and asked for a time out. My next recollection was being back in the chair next to my bed telling them I am ready.What I missed was what they told me. They said after I asked for the timeout, I carefully got up, carefully stepped over the wires attached to me, and went to the bathroom. They said they followed me to observe. I was told when I entered the bathroom I spent about 20 seconds, then I carefully opened the door and came back to take a seat on the chair next to my bed and told them I was ready.I had zero recollection of the activity they observed. Yet, I was still able to not trip on the wires as I headed to the bathroom; I was able to open the door to the bathroom and carefully step in and then close the door before I eventually opened the door and step out and take the seat right next to them; none of which I could recall. Try to find a hospital with good ratings in neurology and neurosurgery Jenifer and seek a second opinion if you feel your neurologist might be missing something. Use the link I attached and try to find a hospital that might be listed as you scroll down.Try to minimize guessing Jenifer. Guessing just makes us guess even more, and that doesn't help because guessing makes us only see what can go wrong. The brain is in a league of its own. It oversees so many things. And, as my neurosurgeon told me prior to surgery; "We learn new things about it everyday."The unusual lapses in memory is not unusual Jenifer. I know about that. Like you, I take a lot of notes, usually via my email. The info will always be in your "draft" section. I have documented activity that dates back quite a few years. And one more thing, what you are currently experiencing doesn't make you any less smart that you already were. It just interfered with the rate at which you can recall activity. In my case, yes my short term memory at times gets the best of me. And post surgery, given it was so close to "language and speech and memory", well, at times I do have setbacks in word finding as I speak. But I am no less smart that I was. Neither are you.Best Regards