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Do I stay on this medication? Help please...
Mon, 03/14/2005 - 09:20Comments
RE: RE: Do I stay on this medication? Help please...
Submitted by cookieparty on Mon, 2005-03-07 - 17:54
I don't think I've read many indepth reports like yours, Batman. I've concluded from your response to the last person's medication question, that you have dealt with seizures for a very long time.
My questions to you are
a) How did you know when you HAD the proper combination of pills for your particular problem,
b) How did you know you HAD epilepsy rather than some hormone induced problem, or an isolated issue due to stress or any of those myriad of other things I've been told could be the cause of one or two or five or 10 seizures?
c) How do you discern between seizures and side effects of medications?
Your advice sounds like that of someone with experience so don't mistake my questions for ridicule. It is just that the more I learn and the more personal experience I have (different and yet similar to some), the more I need to know.
I don't think I've read many indepth reports like yours, Batman. I've concluded from your response to the last person's medication question, that you have dealt with seizures for a very long time.
My questions to you are
a) How did you know when you HAD the proper combination of pills for your particular problem,
b) How did you know you HAD epilepsy rather than some hormone induced problem, or an isolated issue due to stress or any of those myriad of other things I've been told could be the cause of one or two or five or 10 seizures?
c) How do you discern between seizures and side effects of medications?
Your advice sounds like that of someone with experience so don't mistake my questions for ridicule. It is just that the more I learn and the more personal experience I have (different and yet similar to some), the more I need to know.
RE: RE: RE: Do I stay on this medication? Help please...
Submitted by batman on Tue, 2005-03-08 - 01:28
cookieparty,
I’ve had epilepsy since Feb 1987. High school grad in mid-1986, right into a 4 month time frame of Navy boot camp and onboard a aircraft carrier. I lost a good amount of weight, mighty anxious, sleepy and stress out. The first feeling I had was not being able to coordinate with my brain and mouth at the same time. Explained it the best way I could, to one of the ship’s doctors and he just thought I was making up a story/excuse to get out of the military. With that response, I wondered if I should get out. But I didn’t. Because the speech problems only occurred rarely once every 2 –3 months, I just let things continue and didn’t worry about it. This problem settled down over the continuing 8 years, so I just felt that it had something to do with stress, anxiety and not getting enough sleep at times. Two of the greatest things I learned while in the Navy is ‘safety first’ and ‘attention to detail’. What I did was general and preventive maintenance, which was to make sure things continue to work and to be working right. I was part of ‘Dessert Shield/Dessert Storm’ and was honorably discharged in late 1994.
At the beginning of moving from one town in Texas to another, I was traveling on the road with my parents and while falling asleep in the back of the vehicle; I ended up having my very first grand mal seizure. Scared crazy for not knowing what was going on at the time when it took place and as IÂ’m coming out of the seizure, I found myself being put into an ambulance and taken to the nearest hospital. Explanation from the doctor, to my parents, and me was that I had a seizure and suggested for me to see a physician for further tests. From there on IÂ’ve gone through several EEGs and MRIs, started on seizure meds and had to follow with the steps necessary to find which meds worked the best to control my seizures. IÂ’ve also gone through a CT, 2 separate video EEGÂ’s, one WADA test and the last being the pre-surgical EEG, which is where the EEG electrodes are placed directly onto the brain. Result from it was that it was too risky for any further surgery because I may loose my speaking abilities, permanently.
My speaking problems returned but I didn’t have another grand mal until 21 months later [March 1996], on my mother’s birthday. Then another in the following month and three in a row on my parent’s anniversary. The grand mals came to a stop [under control] but the complex partial seizures took over with the simple partials [speech problems] still continuing. Of all the meds, I have been on Tegretol, Depakote, Dilantin, Neurontin, Phenobarbarbital, Lamictal and now Keppra. I had various common side effects when I started the meds, but they settled down as my body adjusted to the meds being in my blood stream. I’ve been on Lamictal ever since September 1997. Then in October 1997 until November 2001, I was taking both Dilantin and Lamictal. My complex partials increased greatly. The worst problem I ever had during that time frame was when I finally had a complex partial in a church. This scared everyone so bad that they came up with lies, excesses and un-equal rights to force me completely out of the church. With all the papers of events and functions I kept, and the papers they gave me to force me out, there’s plenty enough to prove that disability discrimination was involved on their side. I tried to fight it to get back into the church, but with no simple and easy chance, and posting my story online and receiving replies from people with epilepsy, I wanted to fight this for everyone. The only thing that is keeping me from going any further with this fight for equal rights, is that the American Disability Act does NOT support equal rights for anyone with disabilities because of the United States rule of the separation of ‘church’ and ‘state’. This hurt me far more than just having epilepsy to begin with.
I lost my last job because I had a seizure while I was working. They had to let me go because there wasn’t any more I could do to continue working, because it was unsafe for me to continue. Since my seizures began while I was in the military, it was found to be ‘service related’ giving me the opportunity to receive disability benefits through the VA. Since I cannot work, I’ve spent most of my time searching and trying to learn more about seizures & epilepsy, to share my story and what I’ve learned, with others who are new to this. Still doing my ‘homework’, but trying to build up to mentor to anyone who needs it. I’m not scared to talk about any of it. It takes alot of communication to lower the fear people have about anything.
Ok, now that IÂ’ve given a brief story, and believe me, all IÂ’ve said so far is just brief; itÂ’s time for me to answer your questions.
All that I have learned about seizures and epilepsy has been from books, magazines, many online websites through out the world, and while attending the S.E.E. Program. More on this located on www.theseeprogram.com.
Q: How did you know when you HAD the proper combination of pills for your particular problem?
A: Very simple. Once the particular problem[s] is controlled, then the proper combination of pills has obviously been found. The amount of time or time frame to reach this will vary from person to person.
Q: How did you know you HAD epilepsy rather than some hormone induced problem, or an isolated issue due to stress or any of those myriad of other things I've been told could be the cause of one or two or five or 10 seizures?
A: My diagnosis of having epilepsy was determined with the results of the tests I went through. EEGs, MRIs & CT, along with the explanation from those around me [parents, sister, relatives, etc] who witnesses what happens when my seizures took place. The MRI showed that I have an under-developed blood vessel in my left temporal lobe, just about my left ear. I feel that several of my seizures are triggered when IÂ’m stressed, but now greatly believe that my seizures are being triggered by what IÂ’m eating at the same time, during each meal. Before, I would eat milk and cereal, along with fruit and OJ. What I found online suggested not to eat milk and fruit or veggies at the same time. I made a change with this just this past January and already notice a difference.
Numerous things can trigger seizures. Flashing light, sound, smell, hot water on the head, food, drugs, alcohol, or even just being startled by something. Check out this website for more about it http://www.epilepsy.com/epilepsy/epilepsy_reflex.html
Q: How do you discern between seizures and side effects of medications?
A: Find out what the actual common and serious side effects that usually occur or may occur if youÂ’re prescribed to take any medications. If the side effects appear to be mild and taper off shortly then this should be no problem for itÂ’s just the timeframe it take for your body to adjust to the medication. But if they appear to be severe then notify your doctor, or other emergency care, when necessary.
I took the time to search, find, pull up and read over all of the postings and replies youÂ’ve placed on here, to find out more about your situation, to shrink down my questions IÂ’d like to as you.
You had your first grand mal seizure back in the summer of 2003, first started on Keppra, which made you angry, etc. You went through the cross over of coming off of Topamax and on to Lamictal just last month [Feb], and appears to be “easy to live with”. Along with, according to what you’ve explained, going into menopause, which by the way can be part of the reason why your seizures are taking place. No joke.
HereÂ’s some information about Lamictal, collected directly from this siteÂ…
The listed target dose of Lamictal shows to be at 300-500 mg per day.
The most common complaints include: dizziness, upset stomach, headache, unsteadiness, double vision, and rash. Most of these problems are mild to moderate. People who have just started taking Lamictal (or who have just started taking a larger amount) should be careful during activities that might be dangerous, until they know whether they are having any side effects. Allergic reactions: About 10% of people who take Lamictal experience a rash. Almost none of these rashes are serious. They most often occur in the first 6 weeks of treatment, so during this time, try to be aware of any skin problems and tell the doctor or nurse right away if you see a red rash, to be sure that itÂ’s not the beginning of a serious problem. ItÂ’s often necessary to switch to a different seizure medicine.
ItÂ’s important to recognize the most serious side effects, however. HereÂ’s a list of warning signs that may be the start of a serious problem. If you notice any of these signs, call your doctor right away: Rash or hives, Fever and swollen lymph glands, Painful sores in the mouth or around the eyes, Swelling of lips or tongue.
You said that they described your level of Lamictal as being borderline low and gave you some numbers. Got some questions for you about this. When did they take your blood sample? Was it just before you took your next pill[s]? At this time, what is the dosage amount that youÂ’re taking and how many times per day? I have just a gut feeling that the reason why the level was low, is because you havenÂ’t been on this medication long enough to begin with. So far, just 3 weeks is not anywhere near the usual amount of time it takes to slowly build up the level needed, because youÂ’re still in the transition phase.
Just curious. HowÂ’s your daughter-in-law coming along with her seizures?
Sure hope this helps. If you have ANY more questions and/or information you want to share, please do so. Because thatÂ’s what a support group is for.
Bruce J
cookieparty,
I’ve had epilepsy since Feb 1987. High school grad in mid-1986, right into a 4 month time frame of Navy boot camp and onboard a aircraft carrier. I lost a good amount of weight, mighty anxious, sleepy and stress out. The first feeling I had was not being able to coordinate with my brain and mouth at the same time. Explained it the best way I could, to one of the ship’s doctors and he just thought I was making up a story/excuse to get out of the military. With that response, I wondered if I should get out. But I didn’t. Because the speech problems only occurred rarely once every 2 –3 months, I just let things continue and didn’t worry about it. This problem settled down over the continuing 8 years, so I just felt that it had something to do with stress, anxiety and not getting enough sleep at times. Two of the greatest things I learned while in the Navy is ‘safety first’ and ‘attention to detail’. What I did was general and preventive maintenance, which was to make sure things continue to work and to be working right. I was part of ‘Dessert Shield/Dessert Storm’ and was honorably discharged in late 1994.
At the beginning of moving from one town in Texas to another, I was traveling on the road with my parents and while falling asleep in the back of the vehicle; I ended up having my very first grand mal seizure. Scared crazy for not knowing what was going on at the time when it took place and as IÂ’m coming out of the seizure, I found myself being put into an ambulance and taken to the nearest hospital. Explanation from the doctor, to my parents, and me was that I had a seizure and suggested for me to see a physician for further tests. From there on IÂ’ve gone through several EEGs and MRIs, started on seizure meds and had to follow with the steps necessary to find which meds worked the best to control my seizures. IÂ’ve also gone through a CT, 2 separate video EEGÂ’s, one WADA test and the last being the pre-surgical EEG, which is where the EEG electrodes are placed directly onto the brain. Result from it was that it was too risky for any further surgery because I may loose my speaking abilities, permanently.
My speaking problems returned but I didn’t have another grand mal until 21 months later [March 1996], on my mother’s birthday. Then another in the following month and three in a row on my parent’s anniversary. The grand mals came to a stop [under control] but the complex partial seizures took over with the simple partials [speech problems] still continuing. Of all the meds, I have been on Tegretol, Depakote, Dilantin, Neurontin, Phenobarbarbital, Lamictal and now Keppra. I had various common side effects when I started the meds, but they settled down as my body adjusted to the meds being in my blood stream. I’ve been on Lamictal ever since September 1997. Then in October 1997 until November 2001, I was taking both Dilantin and Lamictal. My complex partials increased greatly. The worst problem I ever had during that time frame was when I finally had a complex partial in a church. This scared everyone so bad that they came up with lies, excesses and un-equal rights to force me completely out of the church. With all the papers of events and functions I kept, and the papers they gave me to force me out, there’s plenty enough to prove that disability discrimination was involved on their side. I tried to fight it to get back into the church, but with no simple and easy chance, and posting my story online and receiving replies from people with epilepsy, I wanted to fight this for everyone. The only thing that is keeping me from going any further with this fight for equal rights, is that the American Disability Act does NOT support equal rights for anyone with disabilities because of the United States rule of the separation of ‘church’ and ‘state’. This hurt me far more than just having epilepsy to begin with.
I lost my last job because I had a seizure while I was working. They had to let me go because there wasn’t any more I could do to continue working, because it was unsafe for me to continue. Since my seizures began while I was in the military, it was found to be ‘service related’ giving me the opportunity to receive disability benefits through the VA. Since I cannot work, I’ve spent most of my time searching and trying to learn more about seizures & epilepsy, to share my story and what I’ve learned, with others who are new to this. Still doing my ‘homework’, but trying to build up to mentor to anyone who needs it. I’m not scared to talk about any of it. It takes alot of communication to lower the fear people have about anything.
Ok, now that IÂ’ve given a brief story, and believe me, all IÂ’ve said so far is just brief; itÂ’s time for me to answer your questions.
All that I have learned about seizures and epilepsy has been from books, magazines, many online websites through out the world, and while attending the S.E.E. Program. More on this located on www.theseeprogram.com.
Q: How did you know when you HAD the proper combination of pills for your particular problem?
A: Very simple. Once the particular problem[s] is controlled, then the proper combination of pills has obviously been found. The amount of time or time frame to reach this will vary from person to person.
Q: How did you know you HAD epilepsy rather than some hormone induced problem, or an isolated issue due to stress or any of those myriad of other things I've been told could be the cause of one or two or five or 10 seizures?
A: My diagnosis of having epilepsy was determined with the results of the tests I went through. EEGs, MRIs & CT, along with the explanation from those around me [parents, sister, relatives, etc] who witnesses what happens when my seizures took place. The MRI showed that I have an under-developed blood vessel in my left temporal lobe, just about my left ear. I feel that several of my seizures are triggered when IÂ’m stressed, but now greatly believe that my seizures are being triggered by what IÂ’m eating at the same time, during each meal. Before, I would eat milk and cereal, along with fruit and OJ. What I found online suggested not to eat milk and fruit or veggies at the same time. I made a change with this just this past January and already notice a difference.
Numerous things can trigger seizures. Flashing light, sound, smell, hot water on the head, food, drugs, alcohol, or even just being startled by something. Check out this website for more about it http://www.epilepsy.com/epilepsy/epilepsy_reflex.html
Q: How do you discern between seizures and side effects of medications?
A: Find out what the actual common and serious side effects that usually occur or may occur if youÂ’re prescribed to take any medications. If the side effects appear to be mild and taper off shortly then this should be no problem for itÂ’s just the timeframe it take for your body to adjust to the medication. But if they appear to be severe then notify your doctor, or other emergency care, when necessary.
I took the time to search, find, pull up and read over all of the postings and replies youÂ’ve placed on here, to find out more about your situation, to shrink down my questions IÂ’d like to as you.
You had your first grand mal seizure back in the summer of 2003, first started on Keppra, which made you angry, etc. You went through the cross over of coming off of Topamax and on to Lamictal just last month [Feb], and appears to be “easy to live with”. Along with, according to what you’ve explained, going into menopause, which by the way can be part of the reason why your seizures are taking place. No joke.
HereÂ’s some information about Lamictal, collected directly from this siteÂ…
The listed target dose of Lamictal shows to be at 300-500 mg per day.
The most common complaints include: dizziness, upset stomach, headache, unsteadiness, double vision, and rash. Most of these problems are mild to moderate. People who have just started taking Lamictal (or who have just started taking a larger amount) should be careful during activities that might be dangerous, until they know whether they are having any side effects. Allergic reactions: About 10% of people who take Lamictal experience a rash. Almost none of these rashes are serious. They most often occur in the first 6 weeks of treatment, so during this time, try to be aware of any skin problems and tell the doctor or nurse right away if you see a red rash, to be sure that itÂ’s not the beginning of a serious problem. ItÂ’s often necessary to switch to a different seizure medicine.
ItÂ’s important to recognize the most serious side effects, however. HereÂ’s a list of warning signs that may be the start of a serious problem. If you notice any of these signs, call your doctor right away: Rash or hives, Fever and swollen lymph glands, Painful sores in the mouth or around the eyes, Swelling of lips or tongue.
You said that they described your level of Lamictal as being borderline low and gave you some numbers. Got some questions for you about this. When did they take your blood sample? Was it just before you took your next pill[s]? At this time, what is the dosage amount that youÂ’re taking and how many times per day? I have just a gut feeling that the reason why the level was low, is because you havenÂ’t been on this medication long enough to begin with. So far, just 3 weeks is not anywhere near the usual amount of time it takes to slowly build up the level needed, because youÂ’re still in the transition phase.
Just curious. HowÂ’s your daughter-in-law coming along with her seizures?
Sure hope this helps. If you have ANY more questions and/or information you want to share, please do so. Because thatÂ’s what a support group is for.
Bruce J
RE: Do I stay on this medication? Help please...
Submitted by batman on Mon, 2005-03-07 - 14:36
For you Peaberry, me and anyone else who is diagnosed with having epilepsy, the first step to control the seizures is with antiepileptic drugs [AED]. There are about 20 different AEDÂ’s in the United States. By knowing which particular type[s] of seizures a patient has, will narrow down the number of AEDÂ’s to just the oneÂ’s most successful at controlling the specific type of seizure[s].
Now, every single person is different with epilepsy. And the physicians must experiment with the patient and the AED[s]. WhatÂ’s the most successful AED, at what dosage level, with the least side effects, which actually has the best control of the seizure[s]? Would any other additional AED[s] be needed? What is the age and gender of the patient?
Your description of the ‘dream-like seizure’ is probably the one type called simple partial seizure. Trileptal is one of the AED’s that can be used for trying to control simple partial seizures. Both Keppra and Trileptal can be used for controlling complex partial and secondarily generalized seizures.
But the amount of time it can take to determine the successful results can take a few months, per each separate AED. Let me give you an example of what I mean here. Say that you have be diagnosed of having complex partial seizures. With Keppra being a possibility of controlling this seizure, the patient will begin at the initiated dosage level of 500 mg taken once a day for about one week, then ‘bumped up a notch’ to 500mg twice a day. I will take time for the body to adjust to the medication and watch out for any serious side effects. If no problems occur AND the seizures have become under control, then success has been made. But if the seizures continue, then additional time is needed to slowly increase the dosage level. Same amount of time to increase it and watching out for serious side effects. Again, if no problems occur AND if the seizures have become under control, then success has been made. But if the seizures continue then the increase in dosage level must repeat itself over and over, up to the toxic level for the patient, which will be noticed when the serious side effects begin to show up. The max level of Keppra is 4,000 mgs daily. If no success has been made then a reversed amount of time will be used to decrease the medication dosage level, to slowly eliminate the medication.
Sometimes, an additional separate AED may need to be added. Like the two youÂ’re on being both Keppra AND Trileptal. Time to experiment and locate the effective dosage level to become seizure free, or under enough control. If there is no success with any AEDÂ’s then more tests will be needed to see if the patient can have surgery preformed. OR go through the trial of having a VNS installed or the ketogenic diet [mostly for children].
I, myself, am currently taking 750mg of Keppra and 150mg of Lamictal, both twice daily. My complex partial seizures and Generalized Tonic-Clonic [Grand Mal] seizures are under control, but my simple partial seizure are not. I have gone through all the possibly known tests available, and it is too risky to have surgery done because I may loose my speaking abilities permanently. So I will be on the meds until something new is invented. But back in January this year of 2005, I found information online about the possibility of having abdominal epilepsy. Steps and treatment plan to bring this under more control is by making adjustments with my diet. Not totally for everything I eat, but what IÂ’m eating at the same time at each meal. Already have made some changes and my simple partials have lowered in frequency and when they do take place, theyÂ’re not as strong or last as long like before.
For everyone with epilepsy, getting to the point of having the seizures under control is way more important than the amount of time it takes to reach the point. Don't ever give up. Don't count the time, make the time count.
Bruce J
For you Peaberry, me and anyone else who is diagnosed with having epilepsy, the first step to control the seizures is with antiepileptic drugs [AED]. There are about 20 different AEDÂ’s in the United States. By knowing which particular type[s] of seizures a patient has, will narrow down the number of AEDÂ’s to just the oneÂ’s most successful at controlling the specific type of seizure[s].
Now, every single person is different with epilepsy. And the physicians must experiment with the patient and the AED[s]. WhatÂ’s the most successful AED, at what dosage level, with the least side effects, which actually has the best control of the seizure[s]? Would any other additional AED[s] be needed? What is the age and gender of the patient?
Your description of the ‘dream-like seizure’ is probably the one type called simple partial seizure. Trileptal is one of the AED’s that can be used for trying to control simple partial seizures. Both Keppra and Trileptal can be used for controlling complex partial and secondarily generalized seizures.
But the amount of time it can take to determine the successful results can take a few months, per each separate AED. Let me give you an example of what I mean here. Say that you have be diagnosed of having complex partial seizures. With Keppra being a possibility of controlling this seizure, the patient will begin at the initiated dosage level of 500 mg taken once a day for about one week, then ‘bumped up a notch’ to 500mg twice a day. I will take time for the body to adjust to the medication and watch out for any serious side effects. If no problems occur AND the seizures have become under control, then success has been made. But if the seizures continue, then additional time is needed to slowly increase the dosage level. Same amount of time to increase it and watching out for serious side effects. Again, if no problems occur AND if the seizures have become under control, then success has been made. But if the seizures continue then the increase in dosage level must repeat itself over and over, up to the toxic level for the patient, which will be noticed when the serious side effects begin to show up. The max level of Keppra is 4,000 mgs daily. If no success has been made then a reversed amount of time will be used to decrease the medication dosage level, to slowly eliminate the medication.
Sometimes, an additional separate AED may need to be added. Like the two youÂ’re on being both Keppra AND Trileptal. Time to experiment and locate the effective dosage level to become seizure free, or under enough control. If there is no success with any AEDÂ’s then more tests will be needed to see if the patient can have surgery preformed. OR go through the trial of having a VNS installed or the ketogenic diet [mostly for children].
I, myself, am currently taking 750mg of Keppra and 150mg of Lamictal, both twice daily. My complex partial seizures and Generalized Tonic-Clonic [Grand Mal] seizures are under control, but my simple partial seizure are not. I have gone through all the possibly known tests available, and it is too risky to have surgery done because I may loose my speaking abilities permanently. So I will be on the meds until something new is invented. But back in January this year of 2005, I found information online about the possibility of having abdominal epilepsy. Steps and treatment plan to bring this under more control is by making adjustments with my diet. Not totally for everything I eat, but what IÂ’m eating at the same time at each meal. Already have made some changes and my simple partials have lowered in frequency and when they do take place, theyÂ’re not as strong or last as long like before.
For everyone with epilepsy, getting to the point of having the seizures under control is way more important than the amount of time it takes to reach the point. Don't ever give up. Don't count the time, make the time count.
Bruce J