What could doctors do better for people with epilepsy?

Hello Everyone,
Another area where I think doctors could do better is providing education about seizure triggers and how to manage them.
Learning about seizure triggers has enabled me to identify my own patterns and manage them more effectively, which has reduced my seizures.
I'm curious about your experiences—did your doctors educate you about identifying and managing seizure triggers?
Chris

@jakedduck1 I have had seizures for 20 years but have not really read much about SUDES until the last few years. Only because my seizures over the last few years have gone from CPS to Drop seizures, I think also called Atonic? I have been looking to see if there were any new meds out over the last 14 years since I stopped all meds which were doing nothing or causing more seizures than I started with.

@santosha I don't know much about Laser but am going to do some research into that. Although after going into some of the Epilepsy sites like Cure Epilepsy some people after having operations on their brains are still taking medication. That is the reason I would be having the operation so I didn't have to take those terrible drugs with the terrible side effects. As I said my 2 seizures a year went to 24 a year after taking the drugs, starting with Epilim. I was then started on more drugs over an 8 year period which did not help & some even bought on more seizures. I have recently read that gabapentin can make seizures worse, which was one of the drugs I was tried on from 2007 - 2012 that made no difference to the seizures or made them worse. That's when on 2012 I said no more drugs. They have tried to get me back on Keppra, which I had the script made up for. I then read that it can cause seizures. My GP verified this. I would never have taken it also previously & have refused it. I have been reading about a few new meds like Cenobamate but there doesn't seem to be many trials done in the past. I don't know what I am going to do. Just hope for no more breaks after falls.

I am not sure my reply's are going to the right person. This is only my 2nd time on this site. I have felt that I am totally on my own when making my decisions about stopping meds. One of the first Neurologists I went to here in Australia was so arrogant & rude I changed to another Specialist. Not that I felt any different when trying to make any decisions about stopping the meds. If the seizures had not become Drop I still would not start trying the meds again. Now they are Drop it is going to be even harder to survive this TBI.

Hi @laura1961 - your replies are going to exactly the right place and are part of this discussion with other Mayo Clinic Connect members in the Epilepsy & Seizures support group:

- What could doctors do better for people with epilepsy? https://connect.mayoclinic.org/discussion/what-could-doctors-do-better-for-people-with-epilepsy/?

What you're describing about medication changes are really tough decisions for a lay person to have to make on their own with no medical training. I do hope your new specialist can provide some guidance. I do not have epilepsy or a seizure disorder personally, but with other medical conditions, I've also found my local pharmacists very helpful at times with tips on when or how to take medications, dealing with side effects or suggesting other medications about which I might ask my doctor.

Are seizures one of the major symptoms you've had since your traumatic brain injury ( TBI)? How frequently do you have them?

Thank you for starting this conversation. I had a doctor who wouldn't listen to my questions. He would patronize me when I asked about the the possible causes of my seizures and he got angry when I brought up the topic of trying to get off of medication. I wish that doctor would have had discussions with me to help me understand my condition and my options. I did change doctors and found one who does discuss things with me. When asked about figuring out the cause and treating that, he at least explained that, because my condition is mild, that he can't expend the time to do that. There are people with far worse conditions and he needs to focus on those. Trying to improve their quality of life is a higher priority. Even those it wasn't the answer I hoped for, I appreciated his candor. Each doctor is different. I hope to find one with the time to delve deeper into the cause of my epilepsy.

@hopefullibrarian
I have had epilepsy for 60 years and I don't really care why. It probably wouldn't do any good to know (for me) anyway. They might want to do surgery, which isn't gonna happen so what difference does it really make, it is what it is.
Half the people with epilepsy never find out the cause anyway.
I was wondering how quickly you Keppra was titrated. If to quickly perhaps that caused your seizure increase or maybe it was interacting with another med. But I would've thought the pharmacist or doctor would've caught that problem.
I hope you restart some seizure medication. Maybe start and stay at a low dose and if you do increase it do it VERY SLOWLY.
Did your doctor order your Keppra blood levels? It's normally not done however, I wonder if it might've been necessary for you.
Take care,
Jake

@santosha I can't remember my Drs or Specialists going over anything like that.

@hopefullibrarian Have you had your seizures all your life or were they started later in life by an illness, head injury etc? Do you take medications? and if so do they work as you said your condition is mild. What is a mild form of Epilepsy, I have been wondering that myself. I have been struggling with approximately 2 seizures a month for 20 years from a TBI but I know some people have them daily. I have not joined any Epilepsy sites like this before. This is my first to share my problem.

@jakedduck1 Can stopping medications too fast cause seizures to increase? I think I read that after I had stopped the 1st medication Epilim abruptly because of the s/effects. That's when I realised the medication had taken 2 seizures a year to around 2 seizures a month. Then I had to go back onto medications so the Drs started trying me on various medications which did not work & made the seizures worse. I thought most people knew how Epilepsy started? They were born with it, (usually in their family) or from an injury, stroke etc.