What to do when EEG is normal? (about symptomes of TLE)

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Hi,

I just had my EEG results : it is completely normal. I still have derealization (world like is in a fog) and depersonalization 9I just feel like not myself like the self I was before pregnancy). I still have too feeling of not being really there, it's all the time, like I am drugged or somehing. I wonder what can I do to help me even if they say I don't have TLE.... what can ground me to reality? I hate feeling always like if I walk in a cotton wool, and I have bad bad memory.

Thanks for your ideas. You can write to [email protected]

Thanks,

Van

Comments

RE: What to do when EEG is normal? (about symptomes of TLE)

Submitted by jackson3911 on Sun, 2005-08-21 - 05:38

Hi Vanillabean- I think I tried e-mailing your home address but I didn't hear from you.........if your doctor did not do a sleep-deprived Nasal-Phranageal EEG the type of Epilepsy you are suspected of having will be missed at least 40% (or more!) of the time. I wish I had caught up with you before you were scheduled!! You are headed toward the same nightmare I went through............(a story TOO long to get into here!) Long story short here though- I am 45; they now know that I have had Temporal Lobe seizures (also called Complex Partial) since birth, misdiagnosed over & over, put on meds that made things worse & had permanent negative residual effects, my parents were told I was partially brain-damaged (in spite of grade A work in school), I was forced to see a psychiatrist...............my epilepsy was finally diagnosed in 1986 when I was 26 (while I was pregnant) with a nasal-phranageal EEG. I had been at my (union) job 8 years- a manager tried to have me fired in 1987 when I had a rather violent seizure on the checklanes while dealing with a customer (I had been put on Phenobarbital to control the seizures because of the pregnancy but it was the wrong drug when I was no longer pregnant!) but after jumping through hoops to keep my job the company knows it can't get rid of me as long as I do the job, & I do (I just had my 27th service anniversary!) While jjumping through the hoops, I found a doctor who was an expert with TLE, who switched me from phenobarbital to Tegretol, & the change was dramatic- everyone around me noticed.....I had a luekemic (sp) reaction after 4 years & the medications they had then (1991) were limited, & I didn't do well on Depakote at all. My doctor was in a car accident & his office closed.........after that I had trouble getting correct treatment & medication, the new doctors would do regular EEG's (I even had a 48 hour ambulatory!) & they all came back negative, & I was back to being told to go to a psychiatrist.............in May 2004 I was on medical leave (again) when I found out my Doc from 1987-91 was practicing again 30 miles away & was able to get in to see him immediately; he started me on Lamictal very, very slowly, while my "insurance-covered" neurologist did ANOTHER regualr EEG & said I didn't have it; Good Doc interceded at that point- made appt. with & arranged to have my insurance cover a neurologist who actually knows what he's doing, which meant another nasal-phranageal (My doc says Dr.X's reputation is shot!) I am once again a different person now that I am getting the correct treatment. Unfortunately, every year I wasn't properly treated, I lost brain cells, friends, relations, husbands, boyfriends.......(LOL except for the brain cells) I'll be honest- I've been emotionally, mentally, & physically crippled by my inability to get correct treatment. My medic alert bracelet says (it's a BIG bracelet, 4 rows!) "Seizure Disorder, Amydala/Complex Partial/NP EEG, Epilepsy, See Wallet Card"-- I'm taking no chances!! If they don't read it or do anything else to me, I'll talk to a lawyer next time. They took away my life once, I won't let them do it again. Well, I said I'd give you the "short version"............there are no "short" versions, or storys with this illness....................I'd really like to "chat" or communicate with you again! My E-mail-- [email protected]

Hi Vanillabean- I think I tried e-mailing your home address but I didn't hear from you.........if your doctor did not do a sleep-deprived Nasal-Phranageal EEG  the type of Epilepsy you are suspected of having will be missed at least 40% (or more!) of the time.  I wish I had caught up with you before you were scheduled!!  You are headed toward the same nightmare I went through............(a story TOO long to get into here!) Long story short here though-  I am 45; they now know that I have had Temporal Lobe seizures (also called Complex Partial) since birth, misdiagnosed over & over, put on meds that made things worse & had permanent negative residual effects, my parents were told I was partially brain-damaged (in spite of grade A work in school), I was forced to see a psychiatrist...............my epilepsy was finally diagnosed in 1986 when I was 26 (while I was pregnant) with a nasal-phranageal EEG.  I had been at my (union) job 8 years- a manager tried to have me fired in 1987 when I had a rather violent seizure on the checklanes while dealing with a customer (I had been put on Phenobarbital to control the seizures because of the pregnancy but it was the wrong drug when I was no longer pregnant!) but after jumping through hoops to keep my job the company knows it can't get rid of me as long as I do the job, & I do (I just had my 27th service anniversary!) While jjumping through the hoops, I found a doctor who was an expert with TLE, who switched me from phenobarbital to Tegretol, & the change was dramatic- everyone around me noticed.....I had a luekemic (sp) reaction after 4 years & the medications they had then (1991) were limited, & I didn't do well on Depakote at all. My doctor was in a car accident & his office closed.........after that I had trouble getting correct treatment & medication, the new doctors would do regular EEG's (I even had a 48 hour ambulatory!) & they all came back negative, & I was back to being told to go to a psychiatrist.............in May 2004 I was on medical leave (again) when I found out my Doc from 1987-91 was practicing again 30 miles away & was able to get in to see him immediately; he started me on Lamictal very, very slowly,  while my "insurance-covered" neurologist did ANOTHER regualr EEG & said I didn't have it; Good Doc interceded at that point- made appt. with & arranged to have my insurance cover a neurologist who actually knows what he's doing, which meant another nasal-phranageal (My doc says Dr.X's reputation is shot!) I am once again a different person now that I am getting the correct treatment.  Unfortunately, every year I wasn't properly treated, I lost brain cells, friends, relations, husbands, boyfriends.......(LOL except for the brain cells)  I'll be honest- I've been emotionally, mentally, & physically crippled by my inability to get correct treatment.  My medic alert bracelet says (it's a BIG bracelet, 4 rows!) "Seizure Disorder, Amydala/Complex Partial/NP EEG, Epilepsy, See Wallet Card"-- I'm taking no chances!! If they don't read it or do anything else to me, I'll talk to a lawyer next time. They took away my life once, I won't let them do it again.     Well, I said I'd give you the "short version"............there are no "short" versions, or storys with this illness....................I'd really like to "chat" or communicate with you again!  My E-mail-- [email protected]

Hi Vanillabean- I think I tried e-mailing your home address but I didn't hear from you.........if your doctor did not do a sleep-deprived Nasal-Phranageal EEG the type of Epilepsy you are suspected of having will be missed at least 40% (or more!) of the time. I wish I had caught up with you before you were scheduled!! You are headed toward the same nightmare I went through............(a story TOO long to get into here!) Long story short here though- I am 45; they now know that I have had Temporal Lobe seizures (also called Complex Partial) since birth, misdiagnosed over & over, put on meds that made things worse & had permanent negative residual effects, my parents were told I was partially brain-damaged (in spite of grade A work in school), I was forced to see a psychiatrist...............my epilepsy was finally diagnosed in 1986 when I was 26 (while I was pregnant) with a nasal-phranageal EEG. I had been at my (union) job 8 years- a manager tried to have me fired in 1987 when I had a rather violent seizure on the checklanes while dealing with a customer (I had been put on Phenobarbital to control the seizures because of the pregnancy but it was the wrong drug when I was no longer pregnant!) but after jumping through hoops to keep my job the company knows it can't get rid of me as long as I do the job, & I do (I just had my 27th service anniversary!) While jjumping through the hoops, I found a doctor who was an expert with TLE, who switched me from phenobarbital to Tegretol, & the change was dramatic- everyone around me noticed.....I had a luekemic (sp) reaction after 4 years & the medications they had then (1991) were limited, & I didn't do well on Depakote at all. My doctor was in a car accident & his office closed.........after that I had trouble getting correct treatment & medication, the new doctors would do regular EEG's (I even had a 48 hour ambulatory!) & they all came back negative, & I was back to being told to go to a psychiatrist.............in May 2004 I was on medical leave (again) when I found out my Doc from 1987-91 was practicing again 30 miles away & was able to get in to see him immediately; he started me on Lamictal very, very slowly, while my "insurance-covered" neurologist did ANOTHER regualr EEG & said I didn't have it; Good Doc interceded at that point- made appt. with & arranged to have my insurance cover a neurologist who actually knows what he's doing, which meant another nasal-phranageal (My doc says Dr.X's reputation is shot!) I am once again a different person now that I am getting the correct treatment. Unfortunately, every year I wasn't properly treated, I lost brain cells, friends, relations, husbands, boyfriends.......(LOL except for the brain cells) I'll be honest- I've been emotionally, mentally, & physically crippled by my inability to get correct treatment. My medic alert bracelet says (it's a BIG bracelet, 4 rows!) "Seizure Disorder, Amydala/Complex Partial/NP EEG, Epilepsy, See Wallet Card"-- I'm taking no chances!! If they don't read it or do anything else to me, I'll talk to a lawyer next time. They took away my life once, I won't let them do it again. Well, I said I'd give you the "short version"............there are no "short" versions, or storys with this illness....................I'd really like to "chat" or communicate with you again! My E-mail-- [email protected]

RE: RE: What to do when EEG is normal? (about symptomes of TLE)

Submitted by celt_66 on Tue, 2005-08-30 - 11:37

Hi! My name is Emily. I've had seizures for about six years now and I am 24. I have had multiple EEG's done all of which they say are inconclusive...which means that there is activity but there is not enough for them to know what it is. THey do these EEG's when I've had plenty of sleep, plenty to eat..my blood sugar's fine etc..no stresser. As a matter of fact, my seizures seem to be brought on by anxiety.Does anyone else have this problem? Panic attac w/ secondary seizures? -Emily

RE: RE: RE: What to do when EEG is normal? (about symptomes of T

Submitted by jackson3911 on Tue, 2005-08-30 - 12:40

Hi Emily- If the EEG's they have done have not included a sleep-drived low temporal and/or nasal phranageal leads (EEG) then in my opinion they have wasted your time & money. My doctor says its the case of the chicken & the egg...which came first- the "panic attacks" or the seizures? Or does your doctor NOT KNOW that complex partial seizures can masquerade as panic or anxiety attacks? God I HATE stupid doctors!