Should I push for more testing?

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Towards the beginging of the year (about 7 months ago) I stustained a notable head concussion. Almost immediately, alongside post concussion syndrome, I started having these "blackout" fits that appeared to abscense seizures, but I didn't know what was happening so we didn't pay much attention to them. More recently, in the last four months, I've been consistently experiencing episodes that appear to be partial, temporal seizures. (I was hit in the temple regions). However, my recent EGG came back normal. My follow up is soon but I'm uncomfortable with this and really feel this still needs to be looked into further. I know epilepsy is a serious ordeal. I've been told that seizure activity isn't always easy to catch on EEG. I would love to get opinions. I have had grandmals before as a result of a medication reaction a few years ago so I'm familar to what seizure activity feels like. I know everyone's exprience with epilepsy is different but as side note, this is generally what I'm experiencing. (If anyone sees any "red flags" please let me know) Innitially it started with strange sensations, I get overwhelmed by these things and freeze as soon as they happen. I will get nauseated out of the blue, I would feel sudden anger, dread, or break out in crying fit that will subside a minute or two later, I would feel like I had never been in my own home before (substantial enough to cause me to become creeped out), things started looking like they are too big and jumping out at me even my own arms and hands. Alot of the time I see lights and feel motion I know is not real. I had a few episodes where I would completely "blackout" forgeting what happened but would feel like I had, as I can only describe "went somewhere". I was told I blurted out phrases like "No you can't!" or "Stop!" while I tense up and latch on to whatver I'm sitting in. I also have headaches daily and a few months ago needed reading glasses. I also started having a constant ringing in my ears and seeing this bizzare "TV static" everywhere in my vision. All this is typical of when I'm awake, however I have felt sick in my sleep as well. It always starts out with feeling extremely sleepy out of nowhere. When I go to bed I fall asleep almost immediately it feels. Upon looking at my clock, I note that this always happens two hours later. I will be engulfed in a crazy lucid dream but at the same time I'm looking around the room I'm in simintaniously. It is honestly painful. I will feel blissfully sleepy. Like my brain can't wake up, I would highly compare it to anesthetic. Sometimes I can move around just fine and sometime's I can't but it always ends the same way. With a headache, flashing lights and loud ringing that could shatter glass and then it's over. For a few minutes after I actually wake up I'm extremely groggy and have to take time to process my environment before I can get out of bed. Every light I look at always appears to be faintly flickering during this time. I often vividly hallucinate during these fits. Whether it be a family member waking me up, or talking to someone in the room when I'm actually didn't, or feeling something fall on me that I know is not really there. It has made me afraid to sleep. I'm sorry for the post being so long. Thank you ahead of time for any advice. It would be much appreciated.

Comments

I read your post and see that

Submitted by just_joe on Tue, 2014-08-05 - 16:42

I read your post and see that you have a lot going on.As for EEG's with most people their EEG's come back normal. I had 15-20 all come back normal. I was in a test to find out more. what a way to spend a spring break. Well they ran 3 more EEG's all normal. They did a spinal tap and a neuro-angeogram ( the 1960's version of todays MRI) which also came back normal. The last test was another EEG, I was super tired much of which came from all the frigging testing. In that EEG i fell asleep. In that EEG they found seizure activity. By seeing the area of the brain that activity came from the neurologists checked the neuro-angeogram again looking closer. By checking closer they found scared brain tissue, The scared tissue was from a hemmorage to the brain. Back then they said it was before or after birth. My curerent neurologist wanted to see if I was a candidate for some procedure so he ran the tests again. In those tests he saw the scared brain tissue He stated the diagnosis was right but that the hemmorage was done between 6-8 yoa. So I can varify what caused my epilepsy. I fell because a ladder rung came out. I hit the top rail of bunk beds which spun my head causing me to slam into the bottom rail knocking out 4 teeth gashing my tongue and cutting the inside of my jaw. Back then the doctors were more worried about the teeth missing and the 32 stiches it took to fix my tongue and jaw. Basically I am posting this because I know a concussion can cause dammage to the brain so if I were you then yes I would be asking my neurologist aout medications that can help stop the seizures you have been having, Neurologists do not need to see seizure activity to diagnose a person with epilepsy. As for epilepsy being a serious ordeal? That would only be if you let it take over your life. True it can cause some problems from time to time. Or it can hinder some people but would havinbg a heeart ailment be any different? Or what about diabeties? They too are not seen disabilities and people have to live and deal with them. The only difference is there has been a stigma with epilepsy for well over 1000 years.Do you know that epilepsy is more common than Parkinson's, Alzheimer's and strokes combined? Yet, little is said or writen about it, as many endure those symptoms in secret for fear of stigma.. I also see you have researched types of seizures and have come to the conclusion what type you have been having. I also know you have looked at things knowing that each persons seizures is theirs. What is listed under each type of seizure is general information. Not all people have thesame symptoms or experiances. As for medications there are many out there and they all work. Generally a neurologist will prescribe a medication he has patients on and he knows the medication is working for that patient. He also knows the type of epilepsy you and the other patient have and the ypes of seizures you both have. Which is why he will make that prescription and dosages are the same. If you are to see him again soon which I think I read then he will also ask questions. Try and have questions for him too. I generally have about the same number of questions for mine as he does for me. You might start with "what kind of epilepsy do I have? What type of seizures di I have or can I have other types of seizures? Is the medication you prescribed the best medication for my type of epilepsy and seizure? The questions lets him know that you want to try and get your seizures under control so you can go on with your life. If yo uhave been prescribed meds and are to take them 2 times a day. Be sure to take them 12 hours apart. Unless your neuologist states differently. The reason is dosages are set to be taken as the previous dosages gets to it's lowest level. So taking the morning at 7am and the night at 10pm means the 3 hour difference could cause breakthru seizures. I would also suggest you get the My Epilepsy Diary which can be found in the get help section. Watch the video which tells you how to use it. Give your neuro permission to bring it up and by doing that he can check the graphs and other data which could help him come up with other medications, dosages and possiable triggers. Use the note pad to write down different things like what your seizure felt like. How long the seizure might have lasted along with the time to get back to normal. Note anything different that happened that day. I hope this helps and you do get the asistance you need

I read your post and see that you have a lot going on.As for EEG's  with most people their EEG's come back normal. I had 15-20 all come back normal. I was in a test to find out more. what a way to spend a spring break. Well they ran 3 more EEG's all normal. They did a spinal tap and a neuro-angeogram ( the 1960's version of todays MRI) which also came back normal. The last test was another EEG, I was super tired much of which came from all the frigging testing. In that EEG i fell asleep. In that EEG they found seizure activity. By seeing the area of the brain that activity came from the neurologists checked the neuro-angeogram again looking closer. By checking closer they found scared brain tissue, The scared tissue was from a hemmorage to the brain. Back then they said it was before or after birth. My curerent neurologist wanted to see if I was a candidate for some procedure so he ran the tests again. In those tests he saw the scared brain tissue He stated the diagnosis was right but that the hemmorage was done between 6-8 yoa. So I can varify what caused my epilepsy. I fell because a ladder rung came out. I hit the top rail of bunk beds which spun my head causing me to slam into the bottom rail knocking out 4 teeth gashing my tongue and cutting the inside of my jaw. Back then the doctors were more worried about the teeth missing and the 32 stiches it took to fix my tongue and jaw.  Basically I am posting this because I know a concussion can cause dammage to the brain so if I were you then yes I would be asking my neurologist aout medications that can help stop the seizures you have been having, Neurologists do not need to see seizure activity to diagnose a person with epilepsy. As for epilepsy being a serious ordeal? That would only be if you let it take over your life. True it can cause some problems from time to time. Or it can hinder some people but would havinbg a heeart ailment be any different? Or what about diabeties? They too are not seen disabilities and people have to live and deal with them. The only difference is there has been a stigma with epilepsy for well over 1000 years.Do you know that epilepsy is more common than Parkinson's, Alzheimer's and strokes combined? Yet, little is said or writen about it, as many endure those symptoms in secret for fear of stigma.. I also see you have researched types of seizures and have come to the conclusion what type you have been having. I also know you have looked at things knowing that each persons  seizures is theirs. What is listed under each type of seizure is general information. Not all people have thesame symptoms or experiances. As for medications there are many out there and they all work. Generally a neurologist will prescribe a medication he has patients on and he knows the medication is working for that patient. He also knows the type of epilepsy you and the other patient have and the ypes of seizures you both have. Which is why he will make that prescription and dosages are the same. If you are to see him again soon which I think I read then he will also ask questions. Try and have questions for him too. I generally have about the same number of questions for mine as he does for me. You might start with "what kind of epilepsy do I have? What type of seizures di I have or can I have other types of seizures? Is the medication you prescribed the best medication  for my type of epilepsy and seizure?  The questions lets him know that you want to try and get your seizures under control so you can go on with your life. If yo uhave been prescribed meds and are to take them 2 times a day. Be sure to take them 12 hours apart. Unless your neuologist states differently. The reason is dosages are set to be taken as the previous dosages gets to it's lowest level. So taking the morning at 7am and the night at 10pm means the 3 hour difference could cause breakthru seizures. I would also suggest you get the My Epilepsy Diary which can be found in the get help section. Watch the video which tells you how to use it. Give your neuro permission to bring it up and by doing that he can check the graphs and other data which could help him come up with other medications, dosages and possiable triggers. Use the note pad to write down different things like what your seizure felt like. How long the seizure might have lasted along with the time to get back to normal. Note anything different that happened that day. I hope this helps and you do get the asistance you need

I read your post and see that you have a lot going on.As for EEG's with most people their EEG's come back normal. I had 15-20 all come back normal. I was in a test to find out more. what a way to spend a spring break. Well they ran 3 more EEG's all normal. They did a spinal tap and a neuro-angeogram ( the 1960's version of todays MRI) which also came back normal. The last test was another EEG, I was super tired much of which came from all the frigging testing. In that EEG i fell asleep. In that EEG they found seizure activity. By seeing the area of the brain that activity came from the neurologists checked the neuro-angeogram again looking closer. By checking closer they found scared brain tissue, The scared tissue was from a hemmorage to the brain. Back then they said it was before or after birth. My curerent neurologist wanted to see if I was a candidate for some procedure so he ran the tests again. In those tests he saw the scared brain tissue He stated the diagnosis was right but that the hemmorage was done between 6-8 yoa. So I can varify what caused my epilepsy. I fell because a ladder rung came out. I hit the top rail of bunk beds which spun my head causing me to slam into the bottom rail knocking out 4 teeth gashing my tongue and cutting the inside of my jaw. Back then the doctors were more worried about the teeth missing and the 32 stiches it took to fix my tongue and jaw. Basically I am posting this because I know a concussion can cause dammage to the brain so if I were you then yes I would be asking my neurologist aout medications that can help stop the seizures you have been having, Neurologists do not need to see seizure activity to diagnose a person with epilepsy. As for epilepsy being a serious ordeal? That would only be if you let it take over your life. True it can cause some problems from time to time. Or it can hinder some people but would havinbg a heeart ailment be any different? Or what about diabeties? They too are not seen disabilities and people have to live and deal with them. The only difference is there has been a stigma with epilepsy for well over 1000 years.Do you know that epilepsy is more common than Parkinson's, Alzheimer's and strokes combined? Yet, little is said or writen about it, as many endure those symptoms in secret for fear of stigma.. I also see you have researched types of seizures and have come to the conclusion what type you have been having. I also know you have looked at things knowing that each persons seizures is theirs. What is listed under each type of seizure is general information. Not all people have thesame symptoms or experiances. As for medications there are many out there and they all work. Generally a neurologist will prescribe a medication he has patients on and he knows the medication is working for that patient. He also knows the type of epilepsy you and the other patient have and the ypes of seizures you both have. Which is why he will make that prescription and dosages are the same. If you are to see him again soon which I think I read then he will also ask questions. Try and have questions for him too. I generally have about the same number of questions for mine as he does for me. You might start with "what kind of epilepsy do I have? What type of seizures di I have or can I have other types of seizures? Is the medication you prescribed the best medication for my type of epilepsy and seizure? The questions lets him know that you want to try and get your seizures under control so you can go on with your life. If yo uhave been prescribed meds and are to take them 2 times a day. Be sure to take them 12 hours apart. Unless your neuologist states differently. The reason is dosages are set to be taken as the previous dosages gets to it's lowest level. So taking the morning at 7am and the night at 10pm means the 3 hour difference could cause breakthru seizures. I would also suggest you get the My Epilepsy Diary which can be found in the get help section. Watch the video which tells you how to use it. Give your neuro permission to bring it up and by doing that he can check the graphs and other data which could help him come up with other medications, dosages and possiable triggers. Use the note pad to write down different things like what your seizure felt like. How long the seizure might have lasted along with the time to get back to normal. Note anything different that happened that day. I hope this helps and you do get the asistance you need

Is a neurologist treating you

Submitted by Anonymous on Wed, 2014-08-06 - 02:48

Is a neurologist treating you for the concussion? (Our pediatric hospital has a team approach for serious concussions but I don't recall all the people, only remotely know a high school student dealing with that, huge problems but she isn't dealing with seizures at this point, that must have been some doozy of a concussion and maybe you have a lower than avg seizure threshold). Call their office and bring this up as a major issue - might be they need additional appt time allocated just for seizure issues.

Thank you for the responses.

Submitted by pudgypooh1994@gmail.com on Wed, 2014-08-06 - 20:13

Thank you for the responses. My Neurology appointment was just this afternoon. Apparently my EGG did have some minor abnormalities, but he wants to look into the idea that I have a migraine with aura disorder, that may be 24/7 even I'm not specifically feeling one of my headaches. I'm being tried on topamax as a preventative for my migraines and another medication as well for when I have them. I am also keeping migraine diary until my follow up. If this does not help, apparently we will be checking into the seizure idea more closely. He did say that some of my symptoms are not typical of a migraine, but that for some people they have atypical symptoms. I'm really hoping it is just a bad auras and not seizures, but for how "they" feel, it will take some evidence for me to be convinced. My concussion was actually not recent, it was in the beginning of February, I'm just going through a nasty post concussion currently. As far as having a low seizure threshold, my father use to have absence seizures as a child but did grow out of them. We don't know if that would suggest a genetic predisposition to epilepsy.