Is there a difference between a Neurologist and an Epilepsy Specialist?

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I was assigned a neurologist after I had multiple tonic-clonic seizures 8 months after surgery for a meningioma. While she has been ok, I haven't felt she responded to my questions about living with seizures other than to say sorry - nice, but not super helpful. I wonder if I should be looking for an Epilepsy specialist? Or is a neurologist typically very knowledgeable in this area? She has treated other epilepsy patients. And I have to admit, its only been a little more than a month since my seizures, and I tend to be impatient - I need to try to be more patient, but I was planning on working on the 2020 Census, not sure if that is out of the picture, and was hoping to get back to some of my outdoor activities. Maybe I should set a time limit - if after 3 months after the seizure, I don't feel like we are making much progress I should consider looking for someone else? And should I just write off the US Census job? I am not driving and doc isn't sure when she can make a call, she said we might be able to consider making a decision at the 3 months mark. I am just curious what people think. thanks, - Derrick

Comments

Hi Derrick, The difference

Submitted by Patriotrehab on Wed, 2020-05-27 - 15:49

Hi Derrick, The difference between an Epilepsy Specialist a.k.a. an Epileptologist v. an Neurologist is that an Epileptologist is that they have additional training in treating epilepsy and that’s typically all that they treat. They usually work out of what is called an Epilepsy Center, which you can find one here https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center. It’s not that they won’t treat you even though your seizures only started a few months ago, but usually people are referred to them after they have tried at least two seizure medications without success or are still having seizures after a year. Some Epileptologists and Epilepsy Centers will not take a referral unless there is a question about diagnosis, the seizures are difficult to control, they are the starting neurologist, or the treating neurologist sends the referral to get a second opinion. I don’t know what state you live in and state laws vary when it comes to driving, but the reality is (based on some of your other posts), your medication is still being adjusted, so your doctor is going to be reluctant to sign off on your driving until she is certain that you are not having seizures and much of this she has to rely on your self-report. She may even decide to send you for further testing at an Epilepsy Center before she signs off on the driving and she still has to base it off of the timelines in your state. If you start with a new doctor, the timeframe for driving may be extended because it can take several months to get into an Epileptologist and they often order more tests, which take more time to schedule and they also want to build a relationship with you and monitor you before they are willing to sign off on driving too. If you really believe that you are not making progress with this doctor, then you are free to get another opinion and even try an Epileptologist. But, I’ve been living with epilepsy for twenty years and it’s been my experience that to expect anything to happen within a couple of months is unreasonable because neurologists and epilepsy specialists see epilepsy as a life long condition that takes time to control and so they monitor it carefully and don’t make swift decisions.

Hi Derrick, The difference between an Epilepsy Specialist a.k.a. an Epileptologist v. an Neurologist is that an Epileptologist is that they have additional training in treating epilepsy and that’s typically all that they treat. They usually work out of what is called an Epilepsy Center, which you can find one here https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center. It’s not that they won’t treat you even though your seizures only started a few months ago, but usually people are referred to them after they have tried at least two seizure medications without success or are still having seizures after a year. Some Epileptologists and Epilepsy Centers will not take a referral unless there is a question about diagnosis, the seizures are difficult to control, they are the starting neurologist, or the treating neurologist sends the referral to get a second opinion. I don’t know what state you live in and state laws vary when it comes to driving, but the reality is (based on some of your other posts), your medication is still being adjusted, so your doctor is going to be reluctant to sign off on your driving until she is certain that you are not having seizures and much of this she has to rely on your self-report. She may even decide to send you for further testing at an Epilepsy Center before she signs off on the driving and she still has to base it off of the timelines in your state. If you start with a new doctor, the timeframe for driving may be extended because it can take several months to get into an Epileptologist and they often order more tests, which take more time to schedule and they also want to build a relationship with you and monitor you before they are willing to sign off on driving too. If you really believe that you are not making progress with this doctor, then you are free to get another opinion and even try an Epileptologist. But, I’ve been living with epilepsy for twenty years and it’s been my experience that to expect anything to happen within a couple of months is unreasonable because neurologists and epilepsy specialists see epilepsy as a life long condition that takes time to control and so they monitor it carefully and don’t make swift decisions.

Hi Derrick, The difference between an Epilepsy Specialist a.k.a. an Epileptologist v. an Neurologist is that an Epileptologist is that they have additional training in treating epilepsy and that’s typically all that they treat. They usually work out of what is called an Epilepsy Center, which you can find one here https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center. It’s not that they won’t treat you even though your seizures only started a few months ago, but usually people are referred to them after they have tried at least two seizure medications without success or are still having seizures after a year. Some Epileptologists and Epilepsy Centers will not take a referral unless there is a question about diagnosis, the seizures are difficult to control, they are the starting neurologist, or the treating neurologist sends the referral to get a second opinion. I don’t know what state you live in and state laws vary when it comes to driving, but the reality is (based on some of your other posts), your medication is still being adjusted, so your doctor is going to be reluctant to sign off on your driving until she is certain that you are not having seizures and much of this she has to rely on your self-report. She may even decide to send you for further testing at an Epilepsy Center before she signs off on the driving and she still has to base it off of the timelines in your state. If you start with a new doctor, the timeframe for driving may be extended because it can take several months to get into an Epileptologist and they often order more tests, which take more time to schedule and they also want to build a relationship with you and monitor you before they are willing to sign off on driving too. If you really believe that you are not making progress with this doctor, then you are free to get another opinion and even try an Epileptologist. But, I’ve been living with epilepsy for twenty years and it’s been my experience that to expect anything to happen within a couple of months is unreasonable because neurologists and epilepsy specialists see epilepsy as a life long condition that takes time to control and so they monitor it carefully and don’t make swift decisions.

Thank you, as always Gianna.

Submitted by Dnedzel on Thu, 2020-05-28 - 14:58

Thank you, as always Gianna. I think I just need to keep working with my Neurologist, accept that i won't be working on the US Census, and keep the lines of communication open with her. To be fair, she's only had a couple of months working with me, seems like it takes a lot longer than that to get a handle on this. And I get that it will take awhile to get to the point where we have enough info to make a decision about driving. Thanks for explaining the difference between Neurologists and Epilepsy Specialists - now I understand their roles better. I will keep working with my Neurologist.thanks,- Derrick

Hi Derrick,I just noticed

Submitted by Patriotrehab on Fri, 2020-05-29 - 02:27

Hi Derrick,I just noticed when I logged in to read your response that you had actually posted this question twice, so others had given their thoughts too. I just wanted to clarify a few things about my reply to you based on how another member replied to you in your other post, especially concerning the job with the US Census and how you are measuring your progress and the type of relationship that you have with your neurologist. As we’ve discussed before, I am a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy, so I try to give my replies based on as much objective information as possible, while also sharing personal experience if it can be helpful, so that you can make an informed choice...but without telling you what to do. Sometimes it can be discouraging (even devastating) to hear this information as a person who is new to epilepsy and I understand that, but it is normal for you to experience difficult emotions as you go through what is called “adjustment to disability”. It does not mean that there is automatically something psychologically disordered about you and it can even be related to your medication, as you noted in a previous post. I do psychotherapy, counseling, and career counseling with people who are struggling with all kinds of different life challenges including epilepsy. But, here on this forum, I refrain from doing rehabilitation counseling (career counseling for people with disabilities) such as advising whether you should be working on the US Census because while my certification is national and I know a lot about epilepsy and what the US Census job requirements are, it would be inappropriate for me to give you that guidance here for a number of reasons. That’s why I try to present information in a way that can help you make a decision on your own about the questions that I can answer and it may lead you to answer your other questions on your own too. I don’t know your neurologist, but I do understand the frustration and many other emotions that you are experiencing as a person new to epilepsy. I hope that many of these feelings that you have about epilepsy go away for you. It’s been my experience in counseling people that many of the feelings go away for a person if they experience seizure control as a result of the medication; this is of course if they haven’t experienced a great loss as a result of their epilepsy.As for what Michael asked you in his post about measuring your progress and the type of relationship that you might be seeking with your neurologist, I think those are valid questions. But, like he said neurologists are more interested in seizure control than they are about how it is affecting your life...even the ones that ask you about that. My current Epileptologist made the worst first impression on me than any other doctor that I have ever had and I even started preparations to file a complaint against him for it. But, he apologized after recognizing that he was wrong with his initial diagnosis. I now believe he’s the best doctor for me and we’ve only been working together for 9 months. Some of his lack of sensitivity and mistakes in the first five months actually led to a better investigation, more answers, and ultimately a better relationship because our communication has improved and he is much more sensitive to how his initial impressions can harm his patients.

Hi Derrick,I just noticed when I logged in to read your response that you had actually posted this question twice, so others had given their thoughts too. I just wanted to clarify a few things about my reply to you based on how another member replied to you in your other post, especially concerning the job with the US Census and how you are measuring your progress and the type of relationship that you have with your neurologist. As we’ve discussed before, I am a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy, so I try to give my replies based on as much objective information as possible, while also sharing personal experience if it can be helpful, so that you can make an informed choice...but without telling you what to do. Sometimes it can be discouraging (even devastating) to hear this information as a person who is new to epilepsy and I understand that, but it is normal for you to experience difficult emotions as you go through what is called “adjustment to disability”. It does not mean that there is automatically something psychologically disordered about you and it can even be related to your medication, as you noted in a previous post. I do psychotherapy, counseling, and career counseling with people who are struggling with all kinds of different life challenges including epilepsy. But, here on this forum, I refrain from doing rehabilitation counseling (career counseling for people with disabilities) such as advising whether you should be working on the US Census because while my certification is national and I know a lot about epilepsy and what the US Census job requirements are, it would be inappropriate for me to give you that guidance here for a number of reasons. That’s why I try to present information in a way that can help you make a decision on your own about the questions that I can answer and it may lead you to answer your other questions on your own too. I don’t know your neurologist, but I do understand the frustration and many other emotions that you are experiencing as a person new to epilepsy. I hope that many of these feelings that you have about epilepsy go away for you. It’s been my experience in counseling people that many of the feelings go away for a person if they experience seizure control as a result of the medication; this is of course if they haven’t experienced a great loss as a result of their epilepsy.As for what Michael asked you in his post about measuring your progress and the type of relationship that you might be seeking with your neurologist, I think those are valid questions. But, like he said neurologists are more interested in seizure control than they are about how it is affecting your life...even the ones that ask you about that. My current Epileptologist made the worst first impression on me than any other doctor that I have ever had and I even started preparations to file a complaint against him for it. But, he apologized after recognizing that he was wrong with his initial diagnosis. I now believe he’s the best doctor for me and we’ve only been working together for 9 months. Some of his lack of sensitivity and mistakes in the first five months actually led to a better investigation, more answers, and ultimately a better relationship because our communication has improved and he is much more sensitive to how his initial impressions can harm his patients. 

Hi Derrick,I just noticed when I logged in to read your response that you had actually posted this question twice, so others had given their thoughts too. I just wanted to clarify a few things about my reply to you based on how another member replied to you in your other post, especially concerning the job with the US Census and how you are measuring your progress and the type of relationship that you have with your neurologist. As we’ve discussed before, I am a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy, so I try to give my replies based on as much objective information as possible, while also sharing personal experience if it can be helpful, so that you can make an informed choice...but without telling you what to do. Sometimes it can be discouraging (even devastating) to hear this information as a person who is new to epilepsy and I understand that, but it is normal for you to experience difficult emotions as you go through what is called “adjustment to disability”. It does not mean that there is automatically something psychologically disordered about you and it can even be related to your medication, as you noted in a previous post. I do psychotherapy, counseling, and career counseling with people who are struggling with all kinds of different life challenges including epilepsy. But, here on this forum, I refrain from doing rehabilitation counseling (career counseling for people with disabilities) such as advising whether you should be working on the US Census because while my certification is national and I know a lot about epilepsy and what the US Census job requirements are, it would be inappropriate for me to give you that guidance here for a number of reasons. That’s why I try to present information in a way that can help you make a decision on your own about the questions that I can answer and it may lead you to answer your other questions on your own too. I don’t know your neurologist, but I do understand the frustration and many other emotions that you are experiencing as a person new to epilepsy. I hope that many of these feelings that you have about epilepsy go away for you. It’s been my experience in counseling people that many of the feelings go away for a person if they experience seizure control as a result of the medication; this is of course if they haven’t experienced a great loss as a result of their epilepsy.As for what Michael asked you in his post about measuring your progress and the type of relationship that you might be seeking with your neurologist, I think those are valid questions. But, like he said neurologists are more interested in seizure control than they are about how it is affecting your life...even the ones that ask you about that. My current Epileptologist made the worst first impression on me than any other doctor that I have ever had and I even started preparations to file a complaint against him for it. But, he apologized after recognizing that he was wrong with his initial diagnosis. I now believe he’s the best doctor for me and we’ve only been working together for 9 months. Some of his lack of sensitivity and mistakes in the first five months actually led to a better investigation, more answers, and ultimately a better relationship because our communication has improved and he is much more sensitive to how his initial impressions can harm his patients.