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

Wed, 05/27/2020 - 11:50
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


Hi Derrick,I've had epilepsy

Submitted by birdman on Wed, 2020-05-27 - 21:14
Hi Derrick,I've had epilepsy for 50 years now and have been seen by a half dozen neurologists and at least ten epilepsy specialists.  It's been a long while since I've seen a neurologist for my epilepsy, but I sensed the specialists were more informed about the alternative treatments for seizures.  The specialists also took more time to determine the seizure "focus" or starting point.  Because they could offer other (surgical) treatment options they were more interested in where the seizures started and how they progressed.  It sounds like you are wishing to have a doctor who could support you with not only seizure control but with concerns about dealing with seizures and epilepsy.  I'm sorry to say that in the 16 doctors that have treated my epilepsy all were mostly concerned with treating seizures.  I imagine people who are good counselors and therapists often end up in other specialties like psychology, while the people who treat neurological disorders are more scientific and focus on the symptoms of the illness they treat. I once had a neurologist who was wonderful at listening to the struggles I faced with epilepsy but who was unable to provide any better seizure treatment other than try another medication which we both knew was unlikely to work.  Then I faced a specialist who didn't understand just how severely the medication I was taking was leaving me with mood problems until I lashed out on her.   Doctors are people and they are all different.  A different doctor, not necessarily a specialist, might me helpful for you if you could find a doctor that you could communicate with and who would show greater empathy and understanding you deserve.  Setting a time limit sounds like a very good idea, but how are you gauging "progress"?  Do you mean seizure control, or do you mean getting the advice and support you hope for?I'd say keeping busy is good therapy especially outdoor activities.  If working at the 2020 census isn't too stressful I'd say go for it.  A person from the Epilepsy Foundation probably write you tomorrow with helpful links that can offer good support on living with seizures.  

Hi, Thank you for posting. An

Submitted by Anonymous on Thu, 2020-05-28 - 09:13
Hi, Thank you for posting. An epilpetologist is a neurologist who specializes in epilepsy,seizures that are difficult to treat or do not respond to standard therapy. The epileptologist may be found in different locations: hospitals, group or private practices, academic teaching hospitals, or specialized epilepsy centers. A comprehensive epilepsy center is a group of health care professionals who specialize in the diagnosis, care, and treatment of people with seizures and epilepsy. These centers also include other health care professionals to meet the diverse needs of people with seizures and their families and can help connect you with additional support groups, educational sessions and connecting you with other families.  . We understand if can be challenging to find a healthcare team that you’re comfortable working with. If you feel like you aren’t getting the proper care, not receiving the answers you need or that you all are not working towards the same goals, it may be time to get a second opinion. . We also understand that living with epilepsy is more than seizures, it also means learning how to handle the way epilepsy affects your life including your physical well-being,social and emotional health. As Michael shared in his comment,there are many different types of counseling that can be very helpful in supporting you in your epilepsy journey. You may want to consider asking your doctor that is treating you for your epilepsy to refer you to other members of the healthcare team, such as neuropsychologists,psychiatrists, or social workers, who specialize in helping people with epilepsy and will collaboratively with you and your other doctors. The laws determining which medical conditions may prevent someone from driving varies from state to state. Your safety, as well as the safety of others is most important. Continue to talk with your neurologist about your concerns, who can help determine what is best and safest for you.You can learn more about maintaining your license, the driving laws in your state and mandatory reporting for physicians here: . Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help, hope, support, guidance, and access to national and local resources. 1-800-332-1000, [email protected]. . Or contact your local Epilepsy Foundation: 

Thank you, Michael,

Submitted by Dnedzel on Fri, 2020-05-29 - 12:37
Thank you, Michael, ConnectHelp and Gianna, for you detailed and insightful responses.  I am struggling with what many patients new to epilepsy must struggle with: how do I decide what the new normal with epilepsy is?  What steps can I take to make my life as good as possible for me, while still being responsible for my own safety and the safety of those around me?  To be fair, I feel my neurologist has been giving me excellent medical care, I think I was also hoping for more direction on adjustments to living with epilepsy from her.  As I am learning from the many posts here on the forum, this isn't really her role.  She is focused on preventing seizures, which is a good thing, I absolutely need that first and foremost, but I also need to learn what adjustments I need to make in my life to accommodate this new condition, and some of the decisions she makes concerning my medications will effect what accommodations I need to make as they will effect what I can and can't do safely.  So, I need to be very clear in communicating to her about side-effects of the medications, how those effect my life, and working with her to try to minimize those in a safe and responsible manner.  I need to ask for her input on those accommodations - what can and can't I do, like driving and biking and hiking. But I also need to accept responsibility for making decisions for my life.  I think I was hoping she would tell me - no, you can't do the US Census job because it requires driving and I can't approve you for driving until you have had several months seizure free - actually she said something along these lines, just maybe not that definitively.  But that's a decision I have the information to make for myself - it's obvious I won't be approved for driving for at least a few months, the job is during that period and requires driving, so that's out.  Ok, done, move on.  Driving will be determined by a period of time without seizures - I need to discuss this with my doctor to understand what that time frame is.Regarding outdoor activities, although my doctor's main focus is in avoiding seizures, she can probably advise me on other activities like biking, rock climbing, hiking and yard work.  I need to come up with the plan and discuss it with her, so that I can start doing some of these activities slowly, safely and responsibly.  One of the points you brought up Michael is, I think, really important and is something I hadn't thought of: How do I judge progress?  What would progress for me look like for me?  In 3 months?  In 6 months?  In a year?  What would progress look like over these timeframes to my neurologist?  What happens if I don't reach those goals?  What do I do then?  It shouldn't be the end of the world, I should be ready to adjust to that changed situation.  Specifically, I would like to build a plan to begin riding again - short distances, with friends along incase I have any issues.  And I'd like to build a plan to start climbing again.  I am not sure if I can start the large yard projects as these would involve heavy equipment - that may have to wait for next year.  I think the key is to start building a detailed plan, and then review that with my neurologist to get her input on what activities are reasonable or not.  Gianna, your term: "adjustment to disability" is brilliant!  That's exactly what I am doing!  I am going through emotions that, probably everyone in this situation does: I am angry, frustrated, disappointed and depressed - I worked my whole life gave up so much of my free time to my job to earn money so that I could enjoy a comfortable retirement with my wife, and then a brain tumor and epilepsy come along and now I can't do all the things I love to do!  And the Keppra seems to have been exacerbating some of these emotions, particularly the depression.  But the reality is there is a lot I can do, I need to work thru the relationship with my neurologist, better understand her role and my role, and come up with a plan to work forward towards a lifestyle which I can be happy with, and which is responsible for the safety of myself and others.So far I haven't had another seizure, so for now I don't think I need to seek out an epilepsy specialist - thank you for helping me understand what they can provide that is different from what my neurologist can.  I think I need to work on my relationship with my current neurologist so that we both better understand our goals for this relationship, and we have a framework for working together - regular talks about how the side-effects of my meds, progress towards goals, any seizures or other symptoms I am experiencing.  I am also need to coordinate between her and my neurosurgeon, who continues to monitor my healing progress including regular MRI tests.  Thank you all, again for your advice, and sorry for posting my message twice!  I hope this thread may be of some help to other's in similar situations.Sincerely,- Derrick

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