New to Epilepsy

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I am a 22 year old female new to having seizures. They started about a year and a half ago after a car accident. I am having a hard time adjusting to this new part of my life. Doctors have been of no help to me and have not officially diagnosed me with epilepsy, however I do have 1-3 seizures a week. During all of which I remain conscious. All are preceeded by an aura, slowed speech, dry mouth... Any advice to get the doctors to move faster on a diagnosis and how to deal with the stress of having seizures every week?

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Doctors have been of no help

Submitted by just_joe on Mon, 2014-07-14 - 14:32

Doctors have been of no help to me and have not officially diagnosed me with epilepsy, however I do have 1-3 seizures a week. Without knowing which doctors or the etsts you have gone thru I have no idea which direction ot go in. @ of the main tests done to find out if it is epilepsy are an EEG and a MRI. The EEG is a brain scam of the electrical output in your brain. Mant times it comes up noirmal. But that does not mean you can't have epilepsy. I had 15-20 show up normal before I fell asleep in one which came up with abnormalities (seizure activity). By knowing where in the brain that activity was comming from they then looked closer that the neuro-angeogram (1960's version os the MRI) The neurologist saw scared brain tissue, Understand that they had already found nothing until a closer look was done. 1-3 seizures a week. During all of which I remain conscious You posted you have seizures. You do not post which type you have or what happens other then you can't speak wellyour mouth is dry and you do not lose conciousness. Absence seizures (petite mal) are basically day dreams. Depending on the focal seizure with mine I know I am in a seizure since it affects my roght hand. It either feels wierd or it will do something without me wanting it to. You say nothing about medications or if you are taking them or not. When I see my doctors I ask questions and I answer their questions. Unless they are asked questions they will think things are the same and just keep things as they are. If I were stilll having 1-3 seizures a week I would be asking if this medication dosage is too low to control all my seizures? DO we meed to raise or lower the dosage since too much medication is just as bad as too little? Is there a medication that can be added to this one which can control these seizures better? Is there another medication that can control my seizures better then this medication. Ask him questions and wait for asnwers. He will know you want answers and you want your seizures under better control. Understand that there are people who can be considered controlled even tho they still have seizures. I know that becasue I may be one of them. Right now I have a seizure every 8-14 days. Since they are seconds long even many neurologists can say my seizures are controlled. Doc knows that I also know I could be considered under control. Doc also knows I want to see if the length of time can get longer or even get complete control. As far as officinally diagnossing you with epilepsy all it takes is 2 seizures to come up with that diagnosis. You do need to go to the lear section. You might start in that and learn more about the types of seizures and types of epilepsy. At least you have a computer and this site is around now. I did research on What is epilepsy. I wanted to know what I had and what kind of epilepsy I might have. It took about after having my first grand mal seizure to get the diagnosis. Day dreaming in class. Well those day dreams were absence seizures (petite mal) WIerd feeling in my hand now nad then. Thinking I over worked it Those were focal seizures.My right hand rising up without me wanting it to and once shoulder high I went into a convulsion which looked like a grand mal seizure. The difference was I saw heard and knew what was happening but I could not stop anything from happening. So without knowing much of anything other then you would like to know more and how to get answers from your doctors. This site can do a lot if you do some research. You might be able to find out the different types of seizures and by doing that you can ask your doctors about those seizures and if they are seizures like yours. I hope this helps and please come back and let us know how things are going Joe

Doctors have been of no help to me and have not officially diagnosed me with epilepsy, however I do have 1-3 seizures a week. Without knowing which doctors or the etsts you have gone thru I have no idea which direction ot go in.  @ of the main tests done to find out if it is epilepsy are an EEG and a MRI. The EEG is a brain scam of the electrical output in your brain. Mant times it comes up noirmal. But that does not mean you can't have epilepsy. I had 15-20 show up normal before I fell asleep in one which came up with abnormalities (seizure activity). By knowing where in the brain that activity was comming from they then looked closer that the neuro-angeogram (1960's version os the MRI) The neurologist saw scared brain tissue, Understand that they had already found nothing until a closer look was done. 1-3 seizures a week. During all of which I remain conscious  You posted you have seizures. You do not post which type you have or what happens other then you can't speak wellyour mouth is dry and you do not lose conciousness. Absence seizures (petite mal) are basically day dreams. Depending on the focal seizure with mine I know I am in a seizure since it affects my roght hand. It either feels wierd or it will do something without me wanting it to. You say nothing about medications or if you are taking them or not. When I see my doctors I ask questions and I answer their questions. Unless they are asked questions they will think things are the same and just keep things as they are. If I were stilll having 1-3 seizures a week I would be asking if this medication dosage is too low to control all my seizures? DO we meed to raise or lower the dosage since too much medication is just as bad as too little? Is there a medication that can be added to this one which can control these seizures better? Is there another medication that can control my seizures better then this medication. Ask him questions and wait for asnwers. He will know you want answers and you want your seizures under better control.  Understand that there are people who can be considered controlled even tho they still have seizures. I know that becasue I may be one of them. Right now I have a seizure every 8-14 days. Since they are seconds long even many neurologists can say my seizures are controlled. Doc knows that I also know I could be considered under control. Doc also knows I want to see if the length of time can get longer or even get complete control. As far as officinally diagnossing you with epilepsy all it takes is 2 seizures to come up with that diagnosis.  You do need to go to the lear section. You might start in that and learn more about the types of seizures and types of epilepsy. At least you have a computer and this site is around now. I did research on What is epilepsy. I wanted to know what I had and what kind of epilepsy I might have. It took about after having my first grand mal seizure to get the diagnosis. Day dreaming in class. Well those day dreams were absence seizures (petite mal)  WIerd feeling in my hand now nad then. Thinking I over worked it Those were focal seizures.My right hand rising up without me wanting it to and once shoulder high I went into a convulsion which looked like a grand mal seizure. The difference was I saw heard and knew what was happening but I could not stop anything from happening.  So without knowing much of anything other then you would like to know more and how to get answers from your doctors. This site can do a lot if you do some research. You might be able to find out the different types of seizures and by doing that you can ask your doctors about those seizures and if they are seizures like yours. I hope this helps and please come back and let us know how things are going Joe

Doctors have been of no help to me and have not officially diagnosed me with epilepsy, however I do have 1-3 seizures a week. Without knowing which doctors or the etsts you have gone thru I have no idea which direction ot go in. @ of the main tests done to find out if it is epilepsy are an EEG and a MRI. The EEG is a brain scam of the electrical output in your brain. Mant times it comes up noirmal. But that does not mean you can't have epilepsy. I had 15-20 show up normal before I fell asleep in one which came up with abnormalities (seizure activity). By knowing where in the brain that activity was comming from they then looked closer that the neuro-angeogram (1960's version os the MRI) The neurologist saw scared brain tissue, Understand that they had already found nothing until a closer look was done. 1-3 seizures a week. During all of which I remain conscious You posted you have seizures. You do not post which type you have or what happens other then you can't speak wellyour mouth is dry and you do not lose conciousness. Absence seizures (petite mal) are basically day dreams. Depending on the focal seizure with mine I know I am in a seizure since it affects my roght hand. It either feels wierd or it will do something without me wanting it to. You say nothing about medications or if you are taking them or not. When I see my doctors I ask questions and I answer their questions. Unless they are asked questions they will think things are the same and just keep things as they are. If I were stilll having 1-3 seizures a week I would be asking if this medication dosage is too low to control all my seizures? DO we meed to raise or lower the dosage since too much medication is just as bad as too little? Is there a medication that can be added to this one which can control these seizures better? Is there another medication that can control my seizures better then this medication. Ask him questions and wait for asnwers. He will know you want answers and you want your seizures under better control. Understand that there are people who can be considered controlled even tho they still have seizures. I know that becasue I may be one of them. Right now I have a seizure every 8-14 days. Since they are seconds long even many neurologists can say my seizures are controlled. Doc knows that I also know I could be considered under control. Doc also knows I want to see if the length of time can get longer or even get complete control. As far as officinally diagnossing you with epilepsy all it takes is 2 seizures to come up with that diagnosis. You do need to go to the lear section. You might start in that and learn more about the types of seizures and types of epilepsy. At least you have a computer and this site is around now. I did research on What is epilepsy. I wanted to know what I had and what kind of epilepsy I might have. It took about after having my first grand mal seizure to get the diagnosis. Day dreaming in class. Well those day dreams were absence seizures (petite mal) WIerd feeling in my hand now nad then. Thinking I over worked it Those were focal seizures.My right hand rising up without me wanting it to and once shoulder high I went into a convulsion which looked like a grand mal seizure. The difference was I saw heard and knew what was happening but I could not stop anything from happening. So without knowing much of anything other then you would like to know more and how to get answers from your doctors. This site can do a lot if you do some research. You might be able to find out the different types of seizures and by doing that you can ask your doctors about those seizures and if they are seizures like yours. I hope this helps and please come back and let us know how things are going Joe

New to Epilepsy

Comments

Doctors have been of no help

Submitted by just_joe on Mon, 2014-07-14 - 14:32

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