Switching from Topamax to Vimpat

Hi @baa
t's wonderful to hear from you again! 😊
I'm so sorry to learn about the unsteadiness and balance issues you've been experiencing since increasing your Vimpat dosage, especially the falls that have caused you injuries.
I've been on Vimpat for quite some time and dealt with various side effects, but balance problems haven't been among them for me. However, I did experience similar unsteadiness and balance issues with Tegretol (Carbamazepine) back in 2019, which led to a bad fall that injured my knee. I completely understand how frightening and limiting this side effect can be—it kept me from staying as physically active as I should have been out of fear of more accidents, which isn't ideal since we know exercise is so important for both overall health and seizure management.
I also understand the reluctance to try yet another AED after having difficult experiences with others—I've been in that exact position myself. As I shared earlier this year, I eventually had to restart medication, this time with Keppra, because CBD alone wasn't providing adequate seizure control anymore. I was genuinely frightened when my doctor mentioned Keppra, after hearing so many stories from others who'd tried it. But my doctor encouraged me to approach it cautiously with a gradual dose adjustment, and it turned out to be the medication that caused me the fewest problems while keeping me seizure-free for nearly eight months.
I believe that any AED should ultimately provide more benefits than harm. If a medication is causing more harm than good, it's worth exploring alternatives. As my doctor often reminds me, we're all unique in how we respond to these medications. What works well for one person may not work for another, making the search for the right medication and dosage very much a process of careful trial and adjustment, which requires both patience and persistence.
How long ago did your doctor increase your Vimpat to 400 mg? Do you feel that overall, this medication is still providing more benefits than drawbacks for you?
I know how exhausting this process can feel, but please don't lose hope. You've shown incredible strength in managing everything you've been through. You're absolutely not alone in this journey—we're here supporting each other every step of the way! 💜
Chris

Hey Chris, I need help with this. I use my neurologist here for regular visits and my meds/treatment. I did notify the epileptologist at Vanderbilt I had the hospitalization as he asked me too. He has suggested increasing my lacosimide slightly so I asked him if I should let my neuro know so he could call in. (Easier to have script from one doc). Epi said he already had.
Should I only have the neuro or Epi? I thought they could be on my team. Am I wrong? I DONT KNOW!!!!

Hi @baa
The fact that your epileptologist proactively communicated with your regular neurologist about the medication change shows how open your epileptologist is to working together with other doctors, even neurologists. This is definitely a positive sign, in my opinion.
My understanding is that an epileptologist is already a neurologist, but with additional specialized training in epilepsy. So, according to my knowledge, when a patient with epilepsy is being treated by an epileptologist, there is no need to see a separate neurologist. HOWEVER, your epileptologist's office might be far away from you (another city) and/or he/she may not be easily accessible for routine needs, asking thus your regular doctor to handle routine prescriptions and lab orders as well as to provide ongoing care to you between specialized visits at Vanderbilt. Would that be your case?
What did your epileptologist at Vanderbilt tell you about this arrangement? Did your epileptologist provide guidance on how he or she prefers to work with your neurologist, or specify which types of decisions he or she wants to handle directly versus what your neurologist can manage?
Chris

He is several hours away, so I do want to keep my neurologist for my routine visits and also hospitalizations. The specialist didn’t tell me anything specific about what arrangement he wanted - last time we talked which was months ago after he reviewed the 2-hr testing I had done on his campus, he just said let him know if I had another seizure. My fear is that I would lose my neuro here and I don’t want to. I was getting ready to let him know the specialist just messaged about med increase when specialist texted again, just reviewed my records from this last admit 9/9 and wants to increase my lacosimide 100mg a day. (That’s 100 over the recommended daily dose). He also said if I have another seizure he wants to admit me back to Vanderbilt for the in-house unit to stay. So I’m just confused how and when to let my regular neuro know and if he will dump me! I feel like I need to tell neuro about specialist refs OR should I hook the specialist up to my patient portal so they both have access? My neuro saw me in hospital but didn’t want to see me again until next regular visit in November. My followup from hospital is with my PCP tomorrow. Maybe I’m still not thinking straight or just paranoid. I can use your calm voice!

Hi @baa
The concerns you have shared are very pertinent; you're absolutely not being paranoid!
I imagined that Vanderbilt might be quite a distance from you! That definitely explains why having both doctors makes so much sense.
If I were in your shoes, I'd have a friendly chat with both doctors to get everything clear. I'm assuming your local neurologist already knows you're also seeing the epileptologist at Vanderbilt, right?
I believe that when we're upfront with our doctors and everyone knows their role, things tend to go much more smoothly. It really helps avoid any confusion down the road.
Maybe you could send a quick message to your epileptologist at Vanderbilt first? You could ask something like: "Could you help me understand how you and my local neurologist prefer to coordinate my care? I want to make sure I'm contacting the right doctor for my different needs." Once you get your epileptologist's response, you could then have a similar conversation with your local neurologist to make sure everyone is on the same page.
Do you think this approach would work? Keep in mind that I live outside the US, so things might work slightly differently in my country.
I'm sure you're not the only one being cared for by both an epileptologist outside your city and a local neurologist. Perhaps others here in our group can share their experiences on how they've coordinated their care between an epileptologist at a specialized clinic and their local doctor?
Chris

Thank you for that advice Chris. I think I am just concerned about my local neurologist since I’ve used him so long. He did give me a referral to Vanderbilt when I asked (my children were adamant) so he does know I have gone for evaluation.

Hi @baa
This is good news! Since your local neurologist gave you the referral to Vanderbilt and knows you've been there for an evaluation, I'd be much less worried about any confusion between the two doctors.
Does your neurologist know your epileptologist at Vanderbilt? They may have already been exchanging information behind the scenes without you realizing it.
Why don't you ask your current neurologist about how they have been interacting with one another?
I think being open and asking questions is always the best approach.
Chris

Good morning Chris! I see my PCP today and he is so trusted. He was my childrens physician as he practiced in the town where I raised them. About 2 years ago he moved to this area since his grandchildren were here so I was delighted to begin using him again. He is wonderful! I’ll let him know what is going on and since he is in the same medical system as my neurologist I’m sure he will have an opinion.
I don’t think my neuro and epi know each other but I can connect the Vanderbilt portal and my neuro and PCP’s portal. I needed your advice and calm voice so much and feel much better. I feel so uneducated compared to the journey you and so many have been on. I want to hear more specifics when you have time about the status epilepticus experience. I am so frightened of that since I live alone. Bless you today, Brenda

@baa
Thank you for your kind words, Brenda. I'm so happy to hear you are feeling better. 😍
Please, don't be so harsh on yourself. I want you to know that I don't always have this calm voice you see in my posts here. Hatha Yoga has been very helpful in this respect. I was a much more agitated person before discovering yoga.
Sharing my status epilepticus experience is definitely on my to-do list. You mentioned you are frightened of having such an experience. This brings to mind some wise words from my dearest yoga teacher: "Do not suffer in advance". When we live in fear, we rob ourselves of the chance to fully enjoy life, spending more time in the future than in the present. I have a kind of epilepsy (temporal lobe epilepsy with mesial sclerosis) that is quite refractory. Your epilepsy may be a different type entirely.
How wonderful that your PCP is back and close to your home again! Connecting all these medical portals so doctors can work as a team is a fantastic idea. If I were in your situation, though, I'd keep the epileptologist as the lead doctor for your epilepsy treatment.
Why don't you ask your neurologist or epileptologist if they know each other, putting your mind at ease?
Chris

Hi Chris …
“Do not suffer in advance”
My goodness, when I read that I jumped up for paper and wrote it down. Very few but powerful words-
My visit with primary doc was so good today. Like seeing an old friend, actually is. He thinks I made a good decision asking my neuros opinion on the med change since I work with him here ( messaged neuro today). And he thinks neuro will agree with the med addition also. I’ll just feel better when I see my neuro Oct 14 and see how he acts toward me.
BUT, it will work out so I’m going to try and lay it down!
When my neuro made the referral to Vanderbilt he didn’t make it to a specific doc, left that to me. I researched through the ones on staff and chose this one due to some of the work and papers he had written. I did ask neuro what you suggested: what protocol does he prefer for working with epi. Hopefully he will respond tomorrow-
When and if you feel like sharing regarding the status epilepticus, just let me know. That must be very difficult to even think about.
Peace to you my friend,
Brenda