Wondering if anyone has had the vagus nerve stimulation?

@happyrivers9 @acpsulli @sb74
Good morning!
I'm very sorry to hear about the challenges you dedicated mothers have faced with your sons' epilepsy journeys. Your strength and perseverance are truly admirable.
@acpsulli, I agree with @happyrivers9 that seizure devices (VNS, DBS or RNS) might be too early to consider after just trying one AED. In my own epilepsy journey, I only began exploring these options—and even brain surgery—after five unsuccessful AED attempts. I have Mesial Temporal Lobe Epilepsy, which tends to be highly treatment-resistant.
However, after learning more about the surgery's potential life impacts and switching doctors, I decided to continue exploring medication options. Today, thanks to my doctor's patience and dedication, I'm on an AED combined with CBD that's bringing more benefits than harm.
I'm wondering: Are you satisfied with the care your son is receiving from his current doctor? Have you considered seeking a second opinion? Also, has your son's current doctor mentioned Epidiolex (pure CBD medication) as a treatment option for his epilepsy?
I'd like to connect you with Kerry (@keeg1010), whose son with autism has had excellent results with Epidiolex. I hope she'll join our conversation and share her insights.
I'm also sharing a helpful discussion Kerry started in 2021 about her son's experience that might be valuable for all of you:
Seizures and how to dose CBD/medical marijuana?
https://connect.mayoclinic.org/discussion/seizureshow-to-dose-cbdmedical-marijuana/
Sending you all strength and hope on your journey with your sons.
"I didn't win every time I fought, but I lost every time when I stopped fighting" – Cecília Meireles (Brazilian writer)
Chris

Hello!
Thank you so much for the kind words and info. Unfortunately my son's current neurologist has not offered anything else other than the meds he is on and the vns treatment. They are really pushing the vns which has me kinda concerned. They aren't offering any other options so as of right now, I am not happy with the care he has been receiving recently. He does take zonismide, gabapentin and lamotrigine er and has been averaging a gran mal about every 2 years which I thought was pretty good seizure control. They had even told me before that the last time they did a trough level bloodwork screen that his meds were in the therapeutic range but there was some wiggle room if we needed to go up on dosage. But they aren't offering that now. She said increasing his meds would likely not improve the breakthrough focal seizures.
I am thinking about getting a referral to a epileptologist for more treatment options. They never even mentioned anything about cbd/medical Marijuana. I am also looking at a diet change, possibly ketoginic or modified Atkins. I would do that of course with a doctor's help and approval. It would definitely be a challenge because most autistic people, not all, but most will only eat certain foods. My son is in that category and if he doesn't like it, he will just not eat. It is challenging to say the least but I know there has to be more options. VNS cant be the only thing that could possibly help him. I tried to talk with him about it and the procedure of what they would have to do with implanting the device and his anxiety went into overdrive. He emphatically said NO. The anxiety could cause more problems as that can be a seizure trigger so of course we want to help him with something less invasive if possible.
Prayers for you and all you are going through and thank you!
Sharon B

Hi, just to comment on your post. I am sorry for what you are going through because I can honest say that I know how you feel. My son had his first seizure when he was 19. He has autism also and I cant say high functioning but he is I would say good functioning in alot of things and not so much in others. He is 32 years old and has been on seizure meds since 19 years old. Keppra was the first med they tried and it didn't work for him either. He is now on 3 meds, zonisimide, gabapentin and lamotrigine er. Unfortunately there was alot of trial and error as different people respond to meds differently. We have done alot of research on the vns and we are not convinced this is right for our son. He had a gran mal this past Friday night but it has been 2 years since he had one and he actuality went 3 years without having one but he is not seizure free. He has the short focal seizures that last about 30 seconds with him back to himself in about a minute or 2. He doesn't loose consciousness but just stares and it's evident he is having one. His drs are pushing the vns but we are gonna get a 2nd opinion and get a referral to a epileptologist that specializes only in seizures and epilepsy. We went through years of different meds so I don't know if your dr. Would recommend it this early as they say it's for seizures that aren't controlled by meds but I'm sure you could ask . I am assuming he has only been on the 1 so they might want to try more. I know how scary and frustrating it is. I truly do. I will remember you in my prayers
Sharon B

Good morning,
I am so sorry to hear the struggles you are having and I'm disappointed in the doctor's response to only dosing with Keppra or to have the VNS done. I agree with Chris...it's way too early to be looking at VNS. My son also has autism, cerebral palsy, and developed adult-onset Symptomatic Focal Epilepsy. He has tonic-clonic seizures that typically last for 30-45 seconds but as I'm sure you're aware, it takes him a full day to recover from the seizure and he typically sleeps most of the day after a seizure. My son takes 225mg of Lamotrigine BID and Epidiolex and his seizures are pretty controlled. When we first started Epidiolex, my son Keegan was seizure free for TWO YEARS!!! I was both thrilled and amazed and was kicking myself that we didn't get into Mayo Clinic sooner. We had a previous neurologist who recommended CBD but could not provide dosing. At that time, Keegan was taking Lamotrigine and Depakote, which caused major side effects. We removed the Depakote because it increased his blood level of Lamotrigine to an unacceptable high range. We added in Gabapentin but Keegan could not tolerate it and had all the "rare" side effects, that sent us to the hospital for a week.
Have you looked into changing doctors? I would definitely consider it. I don't understand how the doctor, who supposedly specializes in Epilepsy, has no other medications or options to consider, especially since your son is having side effects from the Keppra. I highly recommend Mayo Clinic's neurology department. They are fantastic. Keegan is seen there and with the Lamotrigine and Epidiolex, he's averaging about 1 seizure every six months. Personally, we tried multiple AED's with little success and too many side effects. I prefer using CBD, since it's a pure form and for Keegan, has no side effects. I will say in the beginning of starting Epidiolex, he did have some bowel issues but they resolved within a month. Let me know if you have any questions or if I can be of any help.
Take care,
Kerry

@sb7
I'm not a fan of VNS and refused it several times when offered as well as epilepsy surgery.
The success rate for seizure control with VNS in my opinion is not very impressive, especially total seizure control.
I knew a man in the UK with a VNS that wasn't helpful and caused him swallowing difficulties and also coughing. He has since passed away after Temporal Lobe epilepsy surgery.
I'd recommend a new Neurologist or at least a second opinion.
I've had epilepsy for 60 years. Seizures were uncontrollabe for 45 years. My Dilantin became unstable and my Neurogist switched me to Carbatrol, an extended release brand name carbamazepine. That controlled my seizures except when my medication wasn't filled on time. You might give extended release medication a try if not already. It might make a difference.
One recommendation I'd suggest is to always use the same manufacturer of whatever medication is being taken. If taking brand drugs don't switch to generic or vice versa. My last Neurologist only prescribed extended release seizure meds.
TKe care,
Jake

Thank you for the information! From what I've read i am not even remotely convinced this is the route to go with the vns. We probably won't do it. I believe I am going to get a referral for a epileptologist . I think it is a better choice since they specialize in seizures and epilepsy and have more knowledge about treating them than a neurologist would. I am not sure why they are pushing the vns so much but we are pretty adamant about not thinking this is best for our son. I appreciate all your comments. Definitely sounds like you would have extensive knowledge about seizures. I know everyone responds differently to meds but some of these being named I have never heard of. I said earlier our son is on zonismide, gabapentin and lamotrigine er and has been averaging 1 gran mal every 2 years. He actually went 3 years without a seizure at one point. It's mainly the focal seizures now but his ambulatory eeg he had done recently shows he has almost constant seizure activity in his brain and tge focals are breakthrough and not being controlled by his meds. All your comments are very much appreciated!
Best,
Sharon B

My pleasure Sharon 😊
I'm very happy to see that both Kerry (@keeg1010) and Jake (@jakedduck1) have already joined this discussion, sharing valuable information.
Chris

Yes! I am very grateful for all the help and proven things that have worked for everyone. I requested a referral to a renoun epileptologist in Durham , NC at Duke. I am waiting for them to call me hopefully soon! I just have to believe there is another route we could go besides vns. As someone living with a damaged vagus nerve ( gastroparesis) from a surgery, I know this is a possibility. It would leave life time effects because you cant fix a damaged vagus nerve. I guess we will wait for the second opinion and go from there. As of now we do have an appointment with a surgeon that dies the vns but not sure my husband is gonna go cause he is pretty sure we won't do it.
Prayers for all,
Sharon B

@sb7
I'm keeping my fingers crossed for you, Sharon! I hope you're able to get that epileptologist appointment scheduled soon.
Please keep me posted on how everything goes - I'd love to stay connected.
Chris

Thank you Chris! I will!
Sharon B