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Suggest Treatment For Epilepsy
Question: Can you please be in depth with the following question my neurologist is not able to get me in to see him for another 90 days, he is asking me if these medications are working and I told him not really I have been in the hospital for time since I last seen him so what do you recommend that I do since he is not going to be back for another 90 days it is currently been 95 days since I last seen him should I go to the emergency room for a possible emergency room visit to possibly get another neurologist to work on the case? I would definitely rely on your skills that you have dealt with in the past you have definitely seen me in the past I definitely know you
Brief Answer:
Read below.
Detailed Answer:
Hello again! I am sorry that you are still not feeling well.
Even now there are so many drugs around for epilepsy, unfortunately there is a percentage of patients who do not respond to drugs, who have what is called refractory or drug resistant epilepsy. It is not a small percentage, it is about 20-30% of epilepsy patients. This term is used for patients who have tried medication of different classes, either alone or as double and triple therapy. You are already under triple therapy and from what I recall from past exchanges have tried several other antiepileptics in the past with not much success. So I am afraid you are one of these drug resistant cases unfortunately. You can be taken to the ER if you have prolonged uninterrupted seizures to break the cycle, but in terms of long term treatment I do not think that the doctor you will see there will be able to do much more for you.
In terms of medication there is one new medication which may be tried. It can be tried as it is a new class, with a completely different mechanism of action from the other anti-epileptics so it can at least be hoped to achieve what has not been achieved till now. It is a drug called Perampanel. It is new, not available in every country, not where I live, so I confess not to have a personal experience with it, I am advising it only because drug wise it is perhaps the only untried alternative, you have tried the other classes of anti-epileptics.
As for other alternatives, perhaps non-medication ones may be considered like vagal stimulation. For that though I believe you'd have to be referred to a dedicated specialized center.
Read below.
Detailed Answer:
Hello again! I am sorry that you are still not feeling well.
Even now there are so many drugs around for epilepsy, unfortunately there is a percentage of patients who do not respond to drugs, who have what is called refractory or drug resistant epilepsy. It is not a small percentage, it is about 20-30% of epilepsy patients. This term is used for patients who have tried medication of different classes, either alone or as double and triple therapy. You are already under triple therapy and from what I recall from past exchanges have tried several other antiepileptics in the past with not much success. So I am afraid you are one of these drug resistant cases unfortunately. You can be taken to the ER if you have prolonged uninterrupted seizures to break the cycle, but in terms of long term treatment I do not think that the doctor you will see there will be able to do much more for you.
In terms of medication there is one new medication which may be tried. It can be tried as it is a new class, with a completely different mechanism of action from the other anti-epileptics so it can at least be hoped to achieve what has not been achieved till now. It is a drug called Perampanel. It is new, not available in every country, not where I live, so I confess not to have a personal experience with it, I am advising it only because drug wise it is perhaps the only untried alternative, you have tried the other classes of anti-epileptics.
As for other alternatives, perhaps non-medication ones may be considered like vagal stimulation. For that though I believe you'd have to be referred to a dedicated specialized center.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
unfortunately for me my neurologist is not willing to recommend that in my neurosurgeon will not do that procedure without a neurologist recommendation as he is stating that he does not want to do any more operations than what is necessary therefore I have to try to convince my neurologist unless he has any more options that he really needs to recommend that because I don't feel like having seizures all my life unless you can recommend something else besides combining a bunch of pills then I'm willing to consider that but he does not want to consider a vagus nerve stimulator right now
Brief Answer:
Read below.
Detailed Answer:
Yes, I can understand, without the neurologist approval it can not be done. However if he doesn't do that he must provide a reason for doing so. Also he must clear up what would be the next step, what alternatives does he think are left since you are not improving.
On the other hand judging from your last question, saying you do not want to always be on pills and have seizures, it seems to me that you are looking at the situation a little unrealistically. While I mentioned vagal nerve situation myself, it is not a definitive cure. It doesn't work in all patients and in those where it helps, it doesn't mean complete elimination of seizures and pills. You will most probably still need to get medication, the hope is that the medication and stimulation combined will work better than medication alone, to make seizures more responsive to drug therapy.
So be aware of that when requesting/having that therapy, should also understand that hydrocephalus and whatever caused it initially, has left some permanent damage to the brain matter and you will always need to be on therapy. The aim is in such a resistant case more in getting the best quality of life through the therapy, it is unlikely to get you seizure free unfortunately.
Read below.
Detailed Answer:
Yes, I can understand, without the neurologist approval it can not be done. However if he doesn't do that he must provide a reason for doing so. Also he must clear up what would be the next step, what alternatives does he think are left since you are not improving.
On the other hand judging from your last question, saying you do not want to always be on pills and have seizures, it seems to me that you are looking at the situation a little unrealistically. While I mentioned vagal nerve situation myself, it is not a definitive cure. It doesn't work in all patients and in those where it helps, it doesn't mean complete elimination of seizures and pills. You will most probably still need to get medication, the hope is that the medication and stimulation combined will work better than medication alone, to make seizures more responsive to drug therapy.
So be aware of that when requesting/having that therapy, should also understand that hydrocephalus and whatever caused it initially, has left some permanent damage to the brain matter and you will always need to be on therapy. The aim is in such a resistant case more in getting the best quality of life through the therapy, it is unlikely to get you seizure free unfortunately.
Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
are you saying possibly the hydrocephalus could possibly be producing some of the seizures? this is my last question after you answer this I'm enclosing the query
Brief Answer:
Read below.
Detailed Answer:
I mentioned hydrocephalus and what caused it, not in isolation. That is because hydrocephalus shouldn't be seen as isolated, it doesn't happen out of nothing, there is something at its origin such as an infection, a tumor, a stroke, a born anomaly etc. So all of these apart from causing hydrocephalus leave behind some damage and changes to brain structures. As a result these changes serve as a source of abnormal electrical discharges and seizures in the future.
The hydrocephalus itself may contribute, but not because of the surgery and the shunt functioning, even if procedure has been done perfectly and shunt working ok, it may have compressed brain structures and led to some additional brain matter changes, before the intervention was made and it was stopped.
So one way or another, whether due to the primary process which led to hydrocephalus (more likely) or the hydrocephalus itself, some changes have been left in the wiring of your brain as in many hydrocephalus patients, which serve as a source of seizures.
Read below.
Detailed Answer:
I mentioned hydrocephalus and what caused it, not in isolation. That is because hydrocephalus shouldn't be seen as isolated, it doesn't happen out of nothing, there is something at its origin such as an infection, a tumor, a stroke, a born anomaly etc. So all of these apart from causing hydrocephalus leave behind some damage and changes to brain structures. As a result these changes serve as a source of abnormal electrical discharges and seizures in the future.
The hydrocephalus itself may contribute, but not because of the surgery and the shunt functioning, even if procedure has been done perfectly and shunt working ok, it may have compressed brain structures and led to some additional brain matter changes, before the intervention was made and it was stopped.
So one way or another, whether due to the primary process which led to hydrocephalus (more likely) or the hydrocephalus itself, some changes have been left in the wiring of your brain as in many hydrocephalus patients, which serve as a source of seizures.
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Above answer was peer-reviewed by :
Dr. Chakravarthy Mazumdar
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