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What Causes Persistent Seizures Despite Having Trileptal?
Question: Hi dr. my name is XXXXX and I developed a seizure problem about 5 years ago. I have been on all the meds well lots of them at first it was Dilantin and it started missing with my teeth so I switched well I cant rember then I tried serveral others with similar results resulting in exstreme side effects and was still having grand mal at times they cam in bunches. at times it would be 1 month but that was and has been about the schedule for the last yr or so, I have a vns now one put in in XXXXXXX that was faulty and another put in this past dec. It is working but im still having the seizures. The dr. has me on trilptal and was trying to get me on lamictal but I tried it before and I just cant take it
oh yes other meds sorry I forgot are 3 mg of zanex at night for sleep and 250 of nuvigal in the morning to alow me to at least half way function.
oh yes other meds sorry I forgot are 3 mg of zanex at night for sleep and 250 of nuvigal in the morning to alow me to at least half way function.
Brief Answer:
Stimulation rate is too low.
Detailed Answer:
I read your question and I understand your concern.
You don't say much about the type of seizures you have had, the cause and exams you might have done (MRI, EEG), but I am assuming you have focal onset seizures resistant to treatment.
Looking at your stimulation rate it seems that your setting are low. Settings may vary according to patient tolerance and also from one center to the other, but that setting seems low for any center. Some regimens I have encountered in my patients are 30 seconds on 5 minutes off, 30 seconds on and 3 minutes off, 30 seconds on and 30 seconds off or 7 seconds on and 18 seconds off. As I said the choice varies at time between different centers, a study comparing the last 3 of those options didn't show a significant difference.
As for medication it is hard to make a recommendation without knowing your complete history with efficacy of every drug you have tried, especially since you don't remember all of them, so I can't assess whether you should continue with trileptal or change it.
For now I suggest you discuss with your doctor your VNS settings, usually it is done in specialized centers so they should be highly qualified specialists and it could well be that they have their good reasons for keeping that low setting considering the unclear complications which you mentioned to have come up with the first stimulator.
I remain at your disposal for further questions.
Stimulation rate is too low.
Detailed Answer:
I read your question and I understand your concern.
You don't say much about the type of seizures you have had, the cause and exams you might have done (MRI, EEG), but I am assuming you have focal onset seizures resistant to treatment.
Looking at your stimulation rate it seems that your setting are low. Settings may vary according to patient tolerance and also from one center to the other, but that setting seems low for any center. Some regimens I have encountered in my patients are 30 seconds on 5 minutes off, 30 seconds on and 3 minutes off, 30 seconds on and 30 seconds off or 7 seconds on and 18 seconds off. As I said the choice varies at time between different centers, a study comparing the last 3 of those options didn't show a significant difference.
As for medication it is hard to make a recommendation without knowing your complete history with efficacy of every drug you have tried, especially since you don't remember all of them, so I can't assess whether you should continue with trileptal or change it.
For now I suggest you discuss with your doctor your VNS settings, usually it is done in specialized centers so they should be highly qualified specialists and it could well be that they have their good reasons for keeping that low setting considering the unclear complications which you mentioned to have come up with the first stimulator.
I remain at your disposal for further questions.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
no I have not been to a specialized center! The neurologist im using is just general and not sure how long she has been in practice.
the first vns they put in on the third visit she had it at 30 seconds and off 5 min but it was defective and it felt as though I was having a heart attack for those 30 seconds so I returned the next day and it was kept low until this last one was installed. I think she is worried about turning it up to much. oh and it was putting out 3900 something and the guy from the company told me the highest they had ever seen it was 1200
the first vns they put in on the third visit she had it at 30 seconds and off 5 min but it was defective and it felt as though I was having a heart attack for those 30 seconds so I returned the next day and it was kept low until this last one was installed. I think she is worried about turning it up to much. oh and it was putting out 3900 something and the guy from the company told me the highest they had ever seen it was 1200
Brief Answer:
The settings should be changed.
Detailed Answer:
As you confirm the first time the setting was according to one of the regimens which I mentioned the first one. It is unclear what was the issue because you blame it on a device malfunctioning, but it could also be that you were intolerant to the stimulation.
I am not sure what those 3900 and 1200 numbers refer to. Apart from the on/off time other settings are amplitude (usually up to 3mA), frequency (20-30Hz) and pulse width. Those numbers perhaps refer to the pulse width, but even 1200 would be pretty high, usually it's set at 150-500.
Anyway I believe your current settings should be changed. If indeed the first time it was due to a malfunctioning and the current device is working well I don't see why not to try the initial regimen of 30s and 5mins.
If low tolerance is feared perhaps it could be increased very gradually, if you have problems again it can be left at the lowest setting for which you showed no tolerance issues. I suggest you discuss it with your neurologist.
I hope to have been of help.
The settings should be changed.
Detailed Answer:
As you confirm the first time the setting was according to one of the regimens which I mentioned the first one. It is unclear what was the issue because you blame it on a device malfunctioning, but it could also be that you were intolerant to the stimulation.
I am not sure what those 3900 and 1200 numbers refer to. Apart from the on/off time other settings are amplitude (usually up to 3mA), frequency (20-30Hz) and pulse width. Those numbers perhaps refer to the pulse width, but even 1200 would be pretty high, usually it's set at 150-500.
Anyway I believe your current settings should be changed. If indeed the first time it was due to a malfunctioning and the current device is working well I don't see why not to try the initial regimen of 30s and 5mins.
If low tolerance is feared perhaps it could be increased very gradually, if you have problems again it can be left at the lowest setting for which you showed no tolerance issues. I suggest you discuss it with your neurologist.
I hope to have been of help.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
Answered by
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