I'm not doing so good

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Hello,

My name is John Stephens. When I was in the Marine Corps. I was deployed to Iraq in 2004, where a mortar landed behind me causing a TBI (Truamatic Brain Injury). Not until 2009 did I start receiving treatment from all the affects of war. About 2 yrs ago I began having auras that everyone at first thought were panic attacks due to my PTSD. The seizures which were complex-partials at first, then turned into violent grand-mals with multiple trips to the ER via ambulance, biting my tongue, chewing, not coherent. I don't remember anything after that feeling that a seizure is coming on. My wife who is my caregiver and is amazing, records the episodes on her phone for the DR's to see. I can't watch them or even hear about my seizures in fear that it will bring another one on. I constantly live in fear that I will wake up in the ER again. In fact in writing this I feel uneasy opening up about all this. However This is what I feel. An aura that begins with extreme fear, that I will die or that the whole world is ending. Everything that is familiar becomes unfamiliar. I then get extremely tired and fall asleep. That's when all the fun begins. After that, when I finally come out of these episodes I feel as though I've been gone for a month and don't remember anything. I usually end up in the ER/hospital. I Constantly feel like a burden to everyone. My 5 children ages 15,13,9,and twin 3 yr olds. All have seen and dealt with my seizures. I can't live like this anymore and feel all alone. It has really helped reading others stories of the same experiences. I live in Southern California and haven't found much help out here except from my DR's at the VA. The last seizure I had, I felt like I was on the brink of insanity. Something only someone who has seizures can understand in my opinion. Then I shut down and don't want to talk. I need help! I need support! I can't put all of this on my family anymore. This has become my new normal. Any help or support would be much appreciated!

JS

Comments

Jackson, I would love to

Submitted by JohnnyWayne on Wed, 2015-11-04 - 12:30

Jackson, I would love to talk with you about all this. I don't like feeling all alone in this anymore.

JohnI want to start by

Submitted by just_joe on Thu, 2015-11-05 - 14:28

JohnI want to start by thanking you for your service. You are not alone. Your wife and kids are learning what can happen and by doing that they can help others since there are many people walking around that have epilepsy and seizures.It takes time for your neurologist to get the medications set at the right dosages so relax some. Plase use this site to help you learn more. In the get help section there are many different thngs that can help. On the left side they have a 24/7 help line which anyone can call to get questions answered. You your wife and even your kds if they have questions. As for medications__ Todays medications are far better then those that I took back in the 1960"s. Fewer side effects and they don't make you sleepy as much. I know all about side effects since I have been in drug studies for newer medications. My neurologist and his associates are the ones working in Dallas testing the meds. By being in them I learned how those side effects got put together. True some people do get the side effects that stay. Most will go away after your body gets used to the medications which can take 4-6 weeks. The people that say they had bad reactions to their meds are a limited number. You can see posts about them. But understand that the people who do ave side effects are 5-8% of the people taking them.I have had several different seizures. When I was diagnosed those seizures were Grand Mal, Petite Mal and FOcol motor seizuresSo the worst, the slightest and many between them. working with all of the neurologists I have had between 1970 and today the number of seizures has been reducad and the time in them has been reduced. The seizures can change in some ways but by reducing them and the newer medications a seizure that used to last 5 minutes and recovery time was 15-45 minutes are now a few seconds long. I can hace a seizure today while standing in front of you and you would know nothing about it. So do listen to the neurologist and for every question he asks ask him some.Is this the best medications for my seizures? Are there other medications that could control my seizures better? Are there other procedures that might help me control my seizures? Any question you have should be asked. By asking questions the neurologist will know you want better results. Also look at the My epilepst Diary. you and your wife can watch the video and set it up. By doing that and giving your neurologist permission to bring it up the neurologist can view everything including the graphs, Have your wife use the note pad in it too.By viewing the information the neurologist might be able to ocme up with different medications, dosages or procedures that can help you get better control of get you seizure free, I do hope this helps and you get seizure free

JohnI want to start by thanking you for your service. You are not alone. Your wife and kids are learning what can happen and by doing that they can help others since there are many people walking around that have epilepsy and seizures.It takes time for your neurologist to get the medications set at the right dosages so relax some.  Plase use this site to help you learn more. In the get help section there are many different thngs that can help. On the left side they have a 24/7 help line which anyone can call to get questions answered. You  your wife and even your kds if they have questions. As for medications__ Todays medications are far better then those that I took back in the 1960"s. Fewer side effects and they don't make you sleepy as much. I know all about side effects since I have been in drug studies for newer medications. My neurologist and his associates are the ones working in Dallas testing the meds. By being in them I learned how those side effects got put together. True some people do get the side effects that stay. Most will go away after your body gets used to the medications which can take 4-6 weeks. The people that say they had bad reactions to their meds are a limited number. You can see posts about them. But understand that the people who do ave side effects are 5-8% of the people taking them.I have had several different seizures. When I was diagnosed those seizures were Grand Mal, Petite Mal and FOcol motor seizuresSo the worst, the slightest and many between them. working with all of the neurologists I have had between 1970  and today the number of seizures has been reducad and the time in them has been reduced. The seizures can change in some ways but by reducing them and the newer medications a seizure that used to last 5 minutes and recovery time was 15-45 minutes are now a few seconds long. I can hace a seizure today while standing in front of you and you would know nothing about it. So do listen to the neurologist and for every question he asks ask him some.Is this the best medications for my seizures? Are there other medications that could control my seizures better? Are there other procedures that might help me control my seizures? Any question you have should be asked. By asking questions the neurologist will know you want better results. Also look at the My epilepst Diary. you and your wife can watch the video and set it up. By doing that and giving your neurologist permission to bring it up the neurologist can view everything including the graphs, Have your wife use the note pad in it too.By viewing the information the neurologist might be able to ocme up with different medications, dosages or procedures that can help you get better control of get you seizure free, I do hope this helps and you get seizure free

JohnI want to start by thanking you for your service. You are not alone. Your wife and kids are learning what can happen and by doing that they can help others since there are many people walking around that have epilepsy and seizures.It takes time for your neurologist to get the medications set at the right dosages so relax some. Plase use this site to help you learn more. In the get help section there are many different thngs that can help. On the left side they have a 24/7 help line which anyone can call to get questions answered. You your wife and even your kds if they have questions. As for medications__ Todays medications are far better then those that I took back in the 1960"s. Fewer side effects and they don't make you sleepy as much. I know all about side effects since I have been in drug studies for newer medications. My neurologist and his associates are the ones working in Dallas testing the meds. By being in them I learned how those side effects got put together. True some people do get the side effects that stay. Most will go away after your body gets used to the medications which can take 4-6 weeks. The people that say they had bad reactions to their meds are a limited number. You can see posts about them. But understand that the people who do ave side effects are 5-8% of the people taking them.I have had several different seizures. When I was diagnosed those seizures were Grand Mal, Petite Mal and FOcol motor seizuresSo the worst, the slightest and many between them. working with all of the neurologists I have had between 1970 and today the number of seizures has been reducad and the time in them has been reduced. The seizures can change in some ways but by reducing them and the newer medications a seizure that used to last 5 minutes and recovery time was 15-45 minutes are now a few seconds long. I can hace a seizure today while standing in front of you and you would know nothing about it. So do listen to the neurologist and for every question he asks ask him some.Is this the best medications for my seizures? Are there other medications that could control my seizures better? Are there other procedures that might help me control my seizures? Any question you have should be asked. By asking questions the neurologist will know you want better results. Also look at the My epilepst Diary. you and your wife can watch the video and set it up. By doing that and giving your neurologist permission to bring it up the neurologist can view everything including the graphs, Have your wife use the note pad in it too.By viewing the information the neurologist might be able to ocme up with different medications, dosages or procedures that can help you get better control of get you seizure free, I do hope this helps and you get seizure free