Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
New to board/Depakote/JME
Wed, 10/27/2004 - 15:29Topic: Medication Issues
I an a 48 y/o female that was diagnosed with JME at age 10. I've been off meds/seizure free for over 25 yrs. My med back then was phenobarbital. Last month I had a grand mal seizure (not sure if they are still called that or not). Dr prescribed Lamictal...developed rash...now he wants me to try Depakote. The weight gain/hair loss is really an issue for me b/c I'm not having any of the jerking motions I had for all those yrs ....only this recent seizure. I am new to this board so I was needing some help finding info on Depakote. Thanks for any info you can give me... wvtrainer ps this is GREAT to have access to this kind of support...all those yrs growing up with JME and not even knowing the name of it or having access to all of y'all....it's cool!
Comments
Hey there,I also have JME.
Submitted by Jill Wilson on Thu, 2005-10-27 - 16:33
Hey there,
I also have JME. I was diagnosed at 15 years old and am now 27. I have only used AED's for a total of 10-12 months my entire life. I started with Dilantin when I was originally diagnosed and found out quickly that it didnt work for me and the side effects were far worse than the seizure I had. I only have problems during my period and up until recently had been seizure free for 3 years. The last 6 months I started taking meds again after a really scary day (3 tonic clonics/grand mal seizures in one day.) This was after a heavy night of drinking. I would like to add to that comment that I have only ever drank a total of like 5x my entire life so I believe this could have triggered that day because alcohol is one of the main/most recognized triggers for JME. I was on Lamictal for 4 months but it was giving me mad myoclonic jerks and seizures (Lamictal is one of the meds known to increase this) so I was recently switched to Keppra. During the time I was on the highest dose of Lamictal I took I was full of anxiety. I felt very paniced most of the time and suffered insomnia as well. I had another scary day during this time where I had 3 more tonic clonic seizures after a night of panic and insomnia. I fully believe that I would never have had these seizures if it were not for the side effects from my AED. I was completely sleep deprived and in a bad mental state because of the anxiety. I am going to "try" Keppra for awhile but if I am living day to day tired or bummed out or anxiety ridden then I have decided to go off the meds. I feel I would rather have 1 or 2 "bad" days a year than medicate myself my whole life especially if this means dealing with the side effects that go along with the meds. I would obviously be singing a different tune if I suffered the type of E that effected me on a daily or even weekly basis. I am not opposed to meds for people that need them to get through a day seizure free. I have heard Depakote is the best med out there in controlling people with JME, however it does have the most risk of side effects too. Also, some of the side effects are irreversible. I know there are a lot of people that have taken it for a long time without any problems but I would double think that (obviously this is completely my opinion) if I was you because you have been seizure free for so long. I too know that JME is a "life-long" type of E but I would give some thought to again the fact that you have been doing so so so well for so so so long. Picture if you had been taking meds for the last 25 years!!! Things I would take into consideration before getting on any other AED are.... do you know when you are going to have a seizure? Are you suffering from really bad myoclonic jerks or seizures? What side effects are possible or are you experiencing? I do not mean to offend anyone by what I have written. This is my opinion only, I have never been the type of person to take any type of med without weighing both sides of things. Keep in mind most neuros or epi's that you see are fully going to be of the opinion that you should use medication even though you have only had 1 seizure in 25 years. I want to let you know that after my neuro got the full "low-down" on how my life with JME was he actually told me that if I was his daughter he would not have me take any meds! This was a shock to me too as I am sure it will be to anyone who is reading this. Anyways, I hope I didnt scare you by this or offend anyone as it was not at all my intention. I just wish I would have known that Lamictal could have potentially made me feel the way I did before I started taking it. After reading a lot of posts on Depakote I would never consider taking it. Say some prayers, you'll get the answer you need :) I hope everything works out for you and I hope you are having a wonderful day!!!
God Bless,
Jill
RE: New to board/Depakote/JME
Submitted by mexican_fire on Wed, 2004-10-27 - 15:29
Hi, my name is Nancy, and I am epileptic, with several of the same seizures you have, but they are running around loose with no connection to each other.
I take Depakote, and have for a long time, and never had a problem with it. I just excuse the hair loss, and tremor because they are harmless, don't hurt, and would rather have them, than seizures.
As for JME, WHY you went off your meds so long ago, is beyond me.
The info I have in multiplpe books on epilepsy state that the prognosis is life long, usually well-controlled with Depakote drugs, and people can SELDOM be withdrawn from their drugs without the reoccurance of seizures.
You need to get back on them, because the Tonic-Clonic seizure that you recently had was NOT just an oops from your brain, it was the JME.
My guess, is it NEVER went away, because it can't, and you may have been having Absence seizures, and those are sneaky, and can't be caught unless it is caught by someone who just happens to be looking at you the moment it is going on.
JME is one of the Epileptic Syndromes. Its main seizure is the Myoclonic seizure for which it is named, it also has Absence, and Tonic-Clonic seizures.
All three are always there, but whether the Absence can actually be caught is the other problem.
It has an on-set at 12-18 years, but ranges from 8-30 years. A history of Myoclonic, TC, or both on awakening or shortly there after suggests the the diagnosis of JME. The Myoclonic and Absence seizures are most often ignored by the person, because they think they are normal things.
People with JME should avoid the triggers special to the myoclonic seizure or this syndrome. Sleep deprivation or lack of sleep, early awakening, alcohol intake, fatigue, and flickering/flashing lights.
Response to Dilantin or Tegretol is VERY poor, but response to any Depakote is great and should control the seizures enough that the person can function normally.
A specific gene locus in chromozone 6p21.2-p11 is responsible for this familial syndrome.
It is more common in females than males, it is inherited, and more than 3 people in the family usually have it.
It won't go away, and you can't become seizure-free, but you can have them controlled enough to where you only have a few a year.
I have TLE with other seizure types. I have Absence, and Myoclonic that are both unattached to anything else, and then the THREE that are in the syndrome I have--Simple Partial, Complex Partial, and Secondarily Generalized Tonic-Clonic seizures.
TLE is a syndrome that affects some 85% of adults with epilepsy, and it is not "out-grown". Most people have surgery to remove a piece of temporal lobe, or have VNS put in. Others continue to have seizures because they couldn't have surgery, or their seizures are resisting meds.
Yours is caused by a gene error, mine is caused by the head trauma, and brain infections I have had.
Depakote is the only med they can sucessfully get you back on. I know you don't want your hair tio fall out, but it is a small price to pay to be free of seizures. I had my hair all fall out about 2 months after I started taking it, and 5 months later it started growing back in curly.
I also take Neurontin as well to help control the partials. I take 3600 mgs of the Neurontin and the normal adult dosage is between 1800-2400 mgs.
You can't be seizure-free, not take meds with JME, it just doesn't work like that. It can't physically happen.
Nancy
Hi, my name is Nancy, and I am epileptic, with several of the same seizures you have, but they are running around loose with no connection to each other.
I take Depakote, and have for a long time, and never had a problem with it. I just excuse the hair loss, and tremor because they are harmless, don't hurt, and would rather have them, than seizures.
As for JME, WHY you went off your meds so long ago, is beyond me.
The info I have in multiplpe books on epilepsy state that the prognosis is life long, usually well-controlled with Depakote drugs, and people can SELDOM be withdrawn from their drugs without the reoccurance of seizures.
You need to get back on them, because the Tonic-Clonic seizure that you recently had was NOT just an oops from your brain, it was the JME.
My guess, is it NEVER went away, because it can't, and you may have been having Absence seizures, and those are sneaky, and can't be caught unless it is caught by someone who just happens to be looking at you the moment it is going on.
JME is one of the Epileptic Syndromes. Its main seizure is the Myoclonic seizure for which it is named, it also has Absence, and Tonic-Clonic seizures.
All three are always there, but whether the Absence can actually be caught is the other problem.
It has an on-set at 12-18 years, but ranges from 8-30 years. A history of Myoclonic, TC, or both on awakening or shortly there after suggests the the diagnosis of JME. The Myoclonic and Absence seizures are most often ignored by the person, because they think they are normal things.
People with JME should avoid the triggers special to the myoclonic seizure or this syndrome. Sleep deprivation or lack of sleep, early awakening, alcohol intake, fatigue, and flickering/flashing lights.
Response to Dilantin or Tegretol is VERY poor, but response to any Depakote is great and should control the seizures enough that the person can function normally.
A specific gene locus in chromozone 6p21.2-p11 is responsible for this familial syndrome.
It is more common in females than males, it is inherited, and more than 3 people in the family usually have it.
It won't go away, and you can't become seizure-free, but you can have them controlled enough to where you only have a few a year.
I have TLE with other seizure types. I have Absence, and Myoclonic that are both unattached to anything else, and then the THREE that are in the syndrome I have--Simple Partial, Complex Partial, and Secondarily Generalized Tonic-Clonic seizures.
TLE is a syndrome that affects some 85% of adults with epilepsy, and it is not "out-grown". Most people have surgery to remove a piece of temporal lobe, or have VNS put in. Others continue to have seizures because they couldn't have surgery, or their seizures are resisting meds.
Yours is caused by a gene error, mine is caused by the head trauma, and brain infections I have had.
Depakote is the only med they can sucessfully get you back on. I know you don't want your hair tio fall out, but it is a small price to pay to be free of seizures. I had my hair all fall out about 2 months after I started taking it, and 5 months later it started growing back in curly.
I also take Neurontin as well to help control the partials. I take 3600 mgs of the Neurontin and the normal adult dosage is between 1800-2400 mgs.
You can't be seizure-free, not take meds with JME, it just doesn't work like that. It can't physically happen.
Nancy