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New to board
Mon, 05/30/2005 - 14:27Hi. I am new to this board. Over the 40 yrs of my life, I have been on Phenobarbital and mysolin when I was a child, Dilantin and mysolin when I was a teenager.
I was then put on Tegretol...which seemed to work in my early twenties. Then the dosage got to be 1.5 400mg tablets, twice a day.
I have now been using novoclobazam with that also (10mg tablets, 2 at night, one in the day).
My partial seizures have almost stopped, but I am really doped up. I drink a lot of coffee to try to counter the effects. Do I have any other alternatives?
I always had partial seizures, or auras as they would call them. They ran all types of test during my childhood..types of food, sleep deprivation...but nothing consistently triggered them.
I have a job, and am married. Does anyone know if 600mg doses of tegretol is too high.
Michael
Comments
RE: New to board
Submitted by beckybeck on Thu, 2005-07-14 - 17:14
HI,
I am also new to boards. I have a 20 month old granddaughter who has been having seizures since 3 months of age. Her seizures are very aggressive and last for 2 hours, the shortest one being 1/2 hour. The massive amounts of medicines that she is on are unreal. She was hospitalized in February until May at the St. Louis Children's Hospital and was in very critical condition. The doctors later told us they they really did not think that she would make it out of ICU on 3 different times. Rayvn (her name) aspirated on one of her seizures and that turned into ARDS (acute respitory distress syndrome) which can be very fatal, was on a ventilator for 2 months and then went to a regular room--was there only a short time and had 4 seizures in one day which put her back into ICU and also took her vision and hearing, this was in March! I am so happy to still have her in my life but I am very sad on all the things that she will miss out on and not be able to do. I am so proud of all of her accomplishments, she is my pride and joy. The doctors believe that she has a fatal disease called Alpers Syndrome, most children die within the first 10 years of life. I refuse to believe that she has this. The only way to be sure is by an autopsy. Which I hope does not happen for a very, very long time. She is very special and is the strongest person that I have ever known. (she is a little red head, it is the hair that makes her quite the little fighter)
This little girl and all children who have seizures are all my hero's. Love to all and God Bless them and take care of them.
Becky
HI,
I am also new to boards. I have a 20 month old granddaughter who has been having seizures since 3 months of age. Her seizures are very aggressive and last for 2 hours, the shortest one being 1/2 hour. The massive amounts of medicines that she is on are unreal. She was hospitalized in February until May at the St. Louis Children's Hospital and was in very critical condition. The doctors later told us they they really did not think that she would make it out of ICU on 3 different times. Rayvn (her name) aspirated on one of her seizures and that turned into ARDS (acute respitory distress syndrome) which can be very fatal, was on a ventilator for 2 months and then went to a regular room--was there only a short time and had 4 seizures in one day which put her back into ICU and also took her vision and hearing, this was in March! I am so happy to still have her in my life but I am very sad on all the things that she will miss out on and not be able to do. I am so proud of all of her accomplishments, she is my pride and joy. The doctors believe that she has a fatal disease called Alpers Syndrome, most children die within the first 10 years of life. I refuse to believe that she has this. The only way to be sure is by an autopsy. Which I hope does not happen for a very, very long time. She is very special and is the strongest person that I have ever known. (she is a little red head, it is the hair that makes her quite the little fighter)
This little girl and all children who have seizures are all my hero's. Love to all and God Bless them and take care of them.
Becky
Re: RE: UPDATE
Submitted by beckybeck on Thu, 2009-04-02 - 23:13
My grand-daughter "Rayvn" went home to be with Jesus on December 22, 2005! I miss you horribly! she had a seizure in the middle of the night and passed away. A part of me went with her the day she passed away, a huge part of me!
Becky
My grand-daughter "Rayvn" went home to be with Jesus on December 22, 2005! I miss you horribly! she had a seizure in the middle of the night and passed away. A part of me went with her the day she passed away, a huge part of me!
Becky
RE: New to board
Submitted by molly on Thu, 2005-06-02 - 10:03
I too am taking 600mg of Tegretol a day and I feel like my body is toxic or over dosed I do
not feel like I am all there and definetly feel like I am stoned or something your doctor can run a simple blood test that will tell you whether it is too much in your system you must remain in the regions of 35-51 and anything over 51 is too much I am now just waiting for my final blood test results.
stay in touch Molly!
I too am taking 600mg of Tegretol a day and I feel like my body is toxic or over dosed I do
not feel like I am all there and definetly feel like I am stoned or something your doctor can run a simple blood test that will tell you whether it is too much in your system you must remain in the regions of 35-51 and anything over 51 is too much I am now just waiting for my final blood test results.
stay in touch Molly!