KittyMom
07-08-2003, 02:39 AM
Hello everyone!!
I haven't been writing much because of the new job and all and I just want you all to know that I still read what you are up to and pray for you every day.
Now, on with the questions...
1. Have any of you had a 'Long Term EEG'?
a) If so, did they take you off of your seizure meds before hand to enduce a seizure?
a) If they didn't take you off of your meds, what did they do?
2. I had a seizure on the 4th of July and I haven't been the same since; auras but no seizures, strange visions, and my 'warning system' has changed. Do any of you feel that way or have you felt that change in the past?
a)If so, what did you do about it? I feel strange all the time.
3. Situation; you are on a dial a ride bus going to your favorite store. That is a bus that you call to come to bring you from point A to point B while it picks up a few people on the way. When it is your stop they stop just for you. You have partial complex seizures (the lights are on but no one is home)and wear a medic ID bracelet that simply sayes, "Epilepsy". You feel the aura to a seizure coming on and don't know if you will go out. Your stop is very close. When that driver stops the bus he/she will let you know to get out. You are now in a seizure and tell him that you don't want to get out or you tell him that you don't know where you are or what you are doing here. He thinks you are a loon. Now what?? My question is, what do you or would you do in a situation like that. He/She won't see your bracelet and if he/she does and all it says is epilepsy then how will they know you are having one? Most of the world thinks that seizures are the gran mal type. What would you do in a situation like that???
Thanks for letting me air some of my questions out. I would love to hear from you guys.
I miss you!
God Bless,
KittyMom
------------------
Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!
I haven't been writing much because of the new job and all and I just want you all to know that I still read what you are up to and pray for you every day.
Now, on with the questions...
1. Have any of you had a 'Long Term EEG'?
a) If so, did they take you off of your seizure meds before hand to enduce a seizure?
a) If they didn't take you off of your meds, what did they do?
2. I had a seizure on the 4th of July and I haven't been the same since; auras but no seizures, strange visions, and my 'warning system' has changed. Do any of you feel that way or have you felt that change in the past?
a)If so, what did you do about it? I feel strange all the time.
3. Situation; you are on a dial a ride bus going to your favorite store. That is a bus that you call to come to bring you from point A to point B while it picks up a few people on the way. When it is your stop they stop just for you. You have partial complex seizures (the lights are on but no one is home)and wear a medic ID bracelet that simply sayes, "Epilepsy". You feel the aura to a seizure coming on and don't know if you will go out. Your stop is very close. When that driver stops the bus he/she will let you know to get out. You are now in a seizure and tell him that you don't want to get out or you tell him that you don't know where you are or what you are doing here. He thinks you are a loon. Now what?? My question is, what do you or would you do in a situation like that. He/She won't see your bracelet and if he/she does and all it says is epilepsy then how will they know you are having one? Most of the world thinks that seizures are the gran mal type. What would you do in a situation like that???
Thanks for letting me air some of my questions out. I would love to hear from you guys.
I miss you!
God Bless,
KittyMom
------------------
Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!
Sponsor
mommajessibelle
07-08-2003, 10:39 AM
hi kittymom
as in long term eeg are you talking about video eeg if that is the case i have had 2 of them done and with both of them i have been takin off of my meds i have also done 2 amblatory eegs my third is coming up on july 22 i was takin off all meds for all of these and im not currently medicated now because i have a very low tolereance for meds and i have run out of options i have had a bed reaction to all of them i cant really answer the rest of your questions because i dont know all i have is grandmal seizures and your right most people do think that epilepsy is having grand mal seizures atleast those people who dont live with epilepsy everyday sorry i cant be more help
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mother of 3
ages 4,3,and 1
my pride and joy
live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow
as in long term eeg are you talking about video eeg if that is the case i have had 2 of them done and with both of them i have been takin off of my meds i have also done 2 amblatory eegs my third is coming up on july 22 i was takin off all meds for all of these and im not currently medicated now because i have a very low tolereance for meds and i have run out of options i have had a bed reaction to all of them i cant really answer the rest of your questions because i dont know all i have is grandmal seizures and your right most people do think that epilepsy is having grand mal seizures atleast those people who dont live with epilepsy everyday sorry i cant be more help
------------------
mother of 3
ages 4,3,and 1
my pride and joy
live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow
KittyMom
07-08-2003, 12:18 PM
Mommajessibelle,
I have a very low tollerance to meds also. Very low!!! I don't know if it is a good med for gran mals but I am on Neurontin and it is great. My doc said that it is the most "all natural" med there is. It is doing pretty good for me. Seizures have slowed down big time but they haven't stopped. Maybe an increase again.
You were a great help! I don't know about the video part but I am having the 5 day EEG and if I have a seizure in 2 days they will let me go. Anyway, I had better go. I hope you will check into that med. It is good.
God Bless you,
KittyMom
------------------
Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!
[This message has been edited by KittyMom (edited 07-08-2003).]
I have a very low tollerance to meds also. Very low!!! I don't know if it is a good med for gran mals but I am on Neurontin and it is great. My doc said that it is the most "all natural" med there is. It is doing pretty good for me. Seizures have slowed down big time but they haven't stopped. Maybe an increase again.
You were a great help! I don't know about the video part but I am having the 5 day EEG and if I have a seizure in 2 days they will let me go. Anyway, I had better go. I hope you will check into that med. It is good.
God Bless you,
KittyMom
------------------
Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!
[This message has been edited by KittyMom (edited 07-08-2003).]
violarose
07-08-2003, 01:25 PM
i just wanted to say hi, i have not had a long running EEG- I think I am glad for that. as for the bus, usually its hard to talk w/ u are having any type of seizure- or to make sense. I suggest you hold out your hand with the bracelet on and show it to him. I know that sounds so simple, but he/ she will understand.
mommajessibelle
07-08-2003, 02:27 PM
hi kittymom i have had 2 of the eegs like you are talking about i was in the hospital for 5 days each time but with mine i had a video camera watching me the whole time so they could see what my body does while i am having a seizure i guess it is suppose to help them with pinpointing where my seizures are coming from but both times i was in i didnt have any seizures and they think it was taking me out of my natural environment that was causing me not to have nay seizures. i have been on neurontin actually i was just takin off of it in like march i think it was since 1997 when i was diagnosed with epilepsy i have been on depakote,dylantin,gabitral,carbamazapine ,topamax,
zonegran,keppra,trileptol,and neurontin so far none of them have worked or i have had really bad side effects from them at the end of this month after i get done with the amblatory eeg my dr is putting me on keppra again i have been on it before but i cant remember why i was takin off of it and it was a different dr and we cant seem to locate the notes from that dr so i guess i will find out why i was takin off of it when i start it again lol
------------------
mother of 3
ages 4,3,and 1
my pride and joy
live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow
zonegran,keppra,trileptol,and neurontin so far none of them have worked or i have had really bad side effects from them at the end of this month after i get done with the amblatory eeg my dr is putting me on keppra again i have been on it before but i cant remember why i was takin off of it and it was a different dr and we cant seem to locate the notes from that dr so i guess i will find out why i was takin off of it when i start it again lol
------------------
mother of 3
ages 4,3,and 1
my pride and joy
live life to its fullest you never know when it may be to late to do all the things you would have done tomorrow
rainonwindow
07-08-2003, 10:29 PM
Hi KittyMom,
I was in the hospital for a week being video monitored a year ago. Unfortunately I didn't have any seizures and the EEG was always normal but the doctors told me they thought I had epilepsy anyway when I was being discharged.
My epi has suggested that I go back in again in the hopes of catching something but I told him that I didn't want to because probably sitting around doing nothing was a great way for me to not have seizures. Maybe if things get worse I would be willing to go back in.
The experience wasn't bad at all - just boring. I was disappointed that nothing happened - the disappointment was the hardest part.
I was in the hospital for a week being video monitored a year ago. Unfortunately I didn't have any seizures and the EEG was always normal but the doctors told me they thought I had epilepsy anyway when I was being discharged.
My epi has suggested that I go back in again in the hopes of catching something but I told him that I didn't want to because probably sitting around doing nothing was a great way for me to not have seizures. Maybe if things get worse I would be willing to go back in.
The experience wasn't bad at all - just boring. I was disappointed that nothing happened - the disappointment was the hardest part.
KittyMom
07-09-2003, 11:00 AM
Geesh, I hope I have one while I am there. That would stink to get 5 hours from home to do this test and then have not ONE!! I would be upset!
Thank you all for helping me out. You are too kind. I would write more but I am going thru a very bad post ictal right now and don't feel good.
YOU GUYS ARE THE BEST!!!
God Bless,
KittyMom
Thank you all for helping me out. You are too kind. I would write more but I am going thru a very bad post ictal right now and don't feel good.
YOU GUYS ARE THE BEST!!!
God Bless,
KittyMom
Porkette
07-10-2003, 07:14 AM
Hi Kittymom,
I've had the long term video e.e.g. that you are talking about but they did surgery on me and drilled 7 holes in my head and planted the depth electrodes directly on my brain. I had 4 on the right side and 3 on the left side. I was on video around the clock except for when I had to use the restroom. One thing that was good is they hooked up a 25 ft. cable from the e.e.g machine right up to me so I could get out of bed and walk around a little. When I had this test done they reduced my seizure meds and gave me diet soda to drink which caused me to have seizures do to the nutra sweet (aspartame) in the soda.
I've been in your type of situation when I'm at work. I have both complex partial and absence (petit mal) seizures and just like you I've been on over 10 different AED's but not a single one has stopped my sz. yet.
I work in public school as a teacher aide in special ed. and there have been times when I go into a seizure and nobody can tell sometimes when I have a cp sz. I will walk out of the classroom and find myself in a hallway or cafe. When I come out of the sz. I'm very confused and it takes me a couple of minutes to realize what has happened.
I know that bus drivers and all people working for the public transportation or working in schools or day care have to have medical training before they are hired in case a person gets sick, has a heart attack, or sz. This law was passed in NY so don't worry if a person doesn't realize that you have had a sz. just continue on like nothing has happened. This is what I do and by doing this people think nothing of my sz.
Here's wishing you only the best and May God Bless You!
Sue
I've had the long term video e.e.g. that you are talking about but they did surgery on me and drilled 7 holes in my head and planted the depth electrodes directly on my brain. I had 4 on the right side and 3 on the left side. I was on video around the clock except for when I had to use the restroom. One thing that was good is they hooked up a 25 ft. cable from the e.e.g machine right up to me so I could get out of bed and walk around a little. When I had this test done they reduced my seizure meds and gave me diet soda to drink which caused me to have seizures do to the nutra sweet (aspartame) in the soda.
I've been in your type of situation when I'm at work. I have both complex partial and absence (petit mal) seizures and just like you I've been on over 10 different AED's but not a single one has stopped my sz. yet.
I work in public school as a teacher aide in special ed. and there have been times when I go into a seizure and nobody can tell sometimes when I have a cp sz. I will walk out of the classroom and find myself in a hallway or cafe. When I come out of the sz. I'm very confused and it takes me a couple of minutes to realize what has happened.
I know that bus drivers and all people working for the public transportation or working in schools or day care have to have medical training before they are hired in case a person gets sick, has a heart attack, or sz. This law was passed in NY so don't worry if a person doesn't realize that you have had a sz. just continue on like nothing has happened. This is what I do and by doing this people think nothing of my sz.
Here's wishing you only the best and May God Bless You!
Sue
KittyMom
07-10-2003, 10:08 AM
Sue,
Are you from NY?? I just moved to this OVEN from NJ and I lived in NY befor that. Where in NY??
OH, now I miss HOME!!
KittyMom
Are you from NY?? I just moved to this OVEN from NJ and I lived in NY befor that. Where in NY??
OH, now I miss HOME!!
KittyMom
Porkette
07-10-2003, 07:56 PM
Hi Kittymom,
Yes, I live in upstate N.Y. Over the yrs. I've lived in 4 states Mass., Maine, PA. and NY if I had my way I would be living in Kentucky or in the southern states where they don't get any snow or bitter cold weather in the winter time.
Here's wishing you well in N.J. Take Care and May God Bless You!
Sue
Yes, I live in upstate N.Y. Over the yrs. I've lived in 4 states Mass., Maine, PA. and NY if I had my way I would be living in Kentucky or in the southern states where they don't get any snow or bitter cold weather in the winter time.
Here's wishing you well in N.J. Take Care and May God Bless You!
Sue