Waiting to be diagnosed..

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Hello, my name is Alexis, and I'm 23 years of age. I found this site because a few weeks ago I started having petit mals. I am waiting to be diagnosed with E. Back in march I went to the ER because I was afraid-I had memory loss, couldn't read a book, was really lethargic and had some senstivity in my hands. In the ER I was told it could either be E or mini-strokes. Neither sounded all that great, and I was afraid to tell my little brother who had a stroke when he was 5 years old. Well I wasn't on insurance at the time, but was told to get on a county program. I did that, but didn't know at the time the program didn't have a contract with a neurologist. I went to my primary care physician, who helped me find out if it was just something like a thyroid problem or high cholestoral.(my grandparents even thought I was just depressed or just lonely and needed to get out more) He ruled that out, so back we were to mini strokes and E. I went back to the ER a few weeks ago when I had the petit mals. I finally told my brother the truth, and he was scared to death when he was at home and witnessing my seizures. I really did not want to put him back in that situation-it's hard on him and it's hard on me to see my parents reliving this nightmare. Some people don't understand when you tell them your brother had a stroke at 5, much less that a 23 year old gal is having seizures. They don't believe you. My trip to the ER that time was not fun.(not that it ever is) I told them everything, that I had a major migraine and it just went away, and then I started having them.(the seizures) They tried to pin it down as anxiety made me have more of these siezures(well I'm sorry, if you see yourself and your body twitch you're going to freak out), gave me some xanax and sent me home. I am just upset at them. They told me they did not have a EEG machine there, and they could run all the tests in the world but that nothing would show up. (this is balogna because how do they take care of patients in the hospital that might need an EEG)The seizures went down to three a day, and I got in to see my primary care physician. He put me on some dilantin.Now to be honest I hate this drug with a passion-but I know that I have to be on it. I've tried several different ways of taking it(all with calling my doctor's office first), because I have some funky side effects. Maybe I have one or two a day, a twitch in my neck or shoulders. I have good days and sometimes I have my bad ones. I'm also going to a cardiologist and I have to see him on monday. I don't know what the results from the tests he ran on me said, because I called up to his office and the nurse said he would talk with me about the results there. I don't like this one bit, and it doesn't sound like good news.The MRI I had on Friday came out ok, so small blessings. I keep trying to contact Medicaid so I can get some help(they have a neurologist), but I haven't got through to an actual human being. I am planning to show up on their doorstep soon because I need to see a neurologist, bad. Anyway I just want to be around someone who knows what it's like to have them. I feel like I'm sometimes speaking a foriegn language around people and I don't want to be the person always complaing about their problems. I know I can live a good life but I would just like to know what's going on. If I have to take meds everyday that's ok just as long as I have quality of life , youknow? But I'd just like someone to talk to about it before I go crazy.

Comments

RE: Waiting to be diagnosed..

Submitted by mexican_fire on Thu, 2005-06-23 - 15:26

Hi,

First of all, don't go around playing the self-diagnosis game, it can turn out to be an ugly thing in the end.

Leave that much to the docs.

Secondly, if you really truly are having Absence seizures, you wouldn't know it when they occured. You wouldn't be aware of your surroundings, you can't hear, feel, or be aroused from the state you are in. You wouldn't be able to tell someone you just had one, and they are not scary to look at. They look just like you are day-dreaming, and there is nothing scary to that. They are a form of a generalized seizure and cause a short LOC during one. They cause a blank stare or a zoned-out appearance that lasts no more than 2-25 seconds, anything longer would be considered as a mild or short Complex Partial seizure.

The person who is having the Absence seizures does not know that they had one when they do, it does not interfere with what they are currently doing, the have no recollection of it ever happening, unless someone else told them it just happened.

They are VERY hard to catch unless the person happens to be looking right at you when it is going on. They are quick and fleeting, and disappear as fast as they came. They have an abrupt on-set and ending. There is not post-ictal recovery state afterwards. No drowsiness, no confusion, no fogs, no memory problems, no any of that stuff.

Absences are most commonly seen in children and are out-grown in more than 80% of the cases by age 18 or 19.

Absences do no develop during adulthood as a primary seizure type. They can occur in adulthood as a type of seizure in an epileptic syndrome such as JAE, JME, or Absences as a child that were never treated or diagnosed and then those can persist into adulthood, but they never just develop as a seizure type.

Dilantin is not a drug that is used for Absence seizures. It is used for Grand Mal, and Partial seizures with or without generalization.

Drugs that should be tired on people with Absences can include Ethosuximide, Depakotes, and several others, but not Dilantin.

Absence seizures are considered mainly to be a childhood epilepsy disorder, rather than adults.

Absence seizures will also show a specific brain wave pattern that is generated on the EEG.

It is called a 3 HZ per-second-Spike-and-Wave. It is only generated by Absence seizures.

You sound more like you are having more motor probems with your seizures. It sounds like either a Simple Partial seizure or a mild Complex Partial. Now, those would be known to cause sleepiness, tiredness, cloudiness, foggines, confusion, etc. Sleeping it off, etc. These seizures there, can generalize to effect other parts of the brain thus causing a secondary generalized convulsion/Grand Mal seizure.

Drugs for these include, Topamax, Neurontin, Depakote, Dilantin, Zarontin, Gabitril, Keppra, Lamictal, Carbatrol, Trileptal, and others.

Partial epilepsy is the most common type of epilepsy seen in adults. 80% of adults with epilepsy have some form of Partial Epilepsy. Most have Complex Partial seizures with or without generalization. Most people with partial epilepsy also experience auras prior to. More than half of the people with Partial epilepsy will experience secondary generalized Tonic-Clonics.

Some of your symptoms could have been from the Migraine that you had just had. Migraines can produce those symptoms, too.

The stroke thing is possilbbe since it seems to run in the family.

I have JME and TLE both and each one is caused by a seperate set of things.

I take 3600 mgs of Neurontin, and 1500 mgs of Depakote ER.

I have had to try 8 other drugs before they found this one.

I have 6 types of seizures to deal with, and 3 are partial and 3 are generalized.

TLE carries Epileptic Aura, CP with secondary generalization, post-ictal state that can last anywhere from a few hours to a few days.

JME carries with it, Myoclonic seizures (main type), Tonic-Clonic (most frequent type), and Absence. I have those at 32, because they are part of this syndrome.

I don't have warnings with the ones from the JME, but I do from the ones from the TLE.

Most of my seizures are Primary Generalized Tonic-Clonics. Then those are followed by Myoclonics. I have very few Absences. They are controlled.

Nancy

Hi,First of all, don't go around playing the self-diagnosis game, it can turn out to be an ugly thing in the end.Leave that much to the docs.<strong>Secondly, if you really truly are having Absence seizures, you wouldn't know it when they occured.  You wouldn't be aware of your surroundings, you can't hear, feel, or be aroused from the state you are in.  You wouldn't be able to tell someone you just had one, and they are not scary to look at.  They look just like you are day-dreaming, and there is nothing scary to that.  </strong>They are a form of a generalized seizure and cause a short LOC during one.  They cause a blank stare or a zoned-out appearance that lasts no more than 2-25 seconds, anything longer would be considered as a mild or short Complex Partial seizure.The person who is having the Absence seizures does not know that they had one when they do, it does not interfere with what they are currently doing, the have no recollection of it ever happening, unless someone else told them it just happened.They are VERY hard to catch unless the person happens to be looking right at you when it is going on.  They are quick and fleeting, and disappear as fast as they came.  They have an abrupt on-set and ending.  There is not post-ictal recovery state afterwards.  No drowsiness, no confusion, no fogs, no memory problems, no any of that stuff.Absences are most commonly seen in children and are out-grown in more than 80% of the cases by age 18 or 19.Absences do no develop during adulthood as a primary seizure type.  They can occur in adulthood as a type of seizure in an epileptic syndrome such as JAE, JME, or Absences as a child that were never treated or diagnosed and then those can persist into adulthood, but they never just develop as a seizure type.Dilantin is not a drug that is used for Absence seizures.  It is used for Grand Mal, and Partial seizures with or without generalization.Drugs that should be tired on people with Absences can include Ethosuximide, Depakotes, and several others, but not Dilantin.Absence seizures are considered mainly to be a childhood epilepsy disorder, rather than adults.Absence seizures will also show a specific brain wave pattern that is generated on the EEG.It is called a 3 HZ per-second-Spike-and-Wave.  It is only generated by Absence seizures.You sound more like you are having more motor probems with your seizures.  It sounds like either a Simple Partial seizure or a mild Complex Partial.  Now, those would be known to cause sleepiness, tiredness, cloudiness, foggines, confusion, etc.  Sleeping it off, etc.  These seizures there, can generalize to effect other parts of the brain thus causing a secondary generalized convulsion/Grand Mal seizure.Drugs for these include, Topamax, Neurontin, Depakote, Dilantin, Zarontin, Gabitril, Keppra, Lamictal, Carbatrol, Trileptal, and others.Partial epilepsy is the most common type of epilepsy seen in adults.  80% of adults with epilepsy have some form of Partial Epilepsy.  Most have Complex Partial seizures with or without generalization.  Most people with partial epilepsy also experience auras prior to.  More than half of the people with Partial epilepsy will experience secondary generalized Tonic-Clonics.Some of your symptoms could have been from the Migraine that you had just had.  Migraines can produce those symptoms, too.The stroke thing is possilbbe since it seems to run in the family.  I have JME and TLE both and each one is caused by a seperate set of things.I take 3600 mgs of Neurontin, and 1500 mgs of Depakote ER.I have had to try 8 other drugs before they found this one.I have 6 types of seizures to deal with, and 3 are partial and 3 are generalized.TLE carries Epileptic Aura, CP with secondary generalization, post-ictal state that can last anywhere from a few hours to a few days.JME carries with it, Myoclonic seizures (main type), Tonic-Clonic (most frequent type), and Absence.  I have those at 32, because they are part of this syndrome.I don't have warnings with the ones from the JME, but I do from the ones from the TLE.Most of my seizures are Primary Generalized Tonic-Clonics.   Then those are followed by Myoclonics.  I have very few Absences.  They are controlled.Nancy