Twenty years ago I underwent a surgery for a tumor and I have been living with epilepsy for the past 12 years. I have tried a bunch of different medications and finding the right treatment has been a process. It has been two steps forward and one step back. Lately, it feels like one step forward and one step back. Basically, I’m treading water.
VNS and Intense Exercise
I’ve had to give up triathlons. Slowly, I’m starting to get back into the sport but the VNS is not yet catching all of my episodes. In fact, the more I push to compete in races, the more likely it is that I will have a seizure.
I would typically have an aura but now, I am not getting this aura with my training. I need to discuss with my doctor if he needs to up the intensity of the VNS to see if it will capture the times in which my heart rate hits a level that may indicate that I am having a seizure. It is a false-positive my heart-rate is elevated by choice.
Is anybody else in this kind of situation? Did an increase in intensity of VNS therapy help tame the problem? I don’t want to give up something, like triathlons, that I enjoy. I don’t have to push myself as hard so that I can keep my heart rate in check, but its hard not to want to compete. I am not the kind of person who will sit on the couch and accept a sedentary lifestyle. I think that this is when the VNS may be working because my heart rate is low.
What to expect
The only side effect I have experienced from the VNS is a change in my voice. It also takes a few days after my settings are adjusted for my body to be accustomed to the new levels.
Has anybody had the RNS put in? What do you feel about the RNS? What was the recovery like? I had surgery not related to the epilepsy. Ironically, my doctor suggested that one of the potential ways to get rid of the epilepsy is to go back in for surgery. However, that really isn’t an option in my mind (no pun intended).
Here is my biggest question. Is there anybody here who lives an active lifestyle which raises the heart rate and has been experiencing more seizures.
VNS vs RNS
Has anybody have a VNS and then opted to get an RNS? Does your epileptologist allow both devices to run at the same time? If so, have you seen any positive changes with seizure control while taking anti-epileptic medications. The way that I see this: there are 3 forms of defense mechanisms at work in this situation to try to control those darn seizures. I want to be able to compete without having fear that I may have an episode while exercising.
This is disheartening now that COVID-19 is starting to become understood better. Less social distancing may be on the horizon. If that is the case, that means that events that were cancelled for the past year may now start to reopen. I cant wait to sign up for the 5k, 10-miler, and half marathon. I want to get back on my bike and ride the country roads.
Reaching Out for Help
My main goal is to try to network with someone who is physically active and took AEDs but didnt have 100% control of their seizure. The next phase was to have the VNS along with AEDs but still didnt get seizure relief (i know that these paired together is a cure). I’m at the point in which someone fit the criteria that I explained while adding the RNS into the equation. I’m trying to gather information about treatment options so that I can speak with some knowledge to my epileptologist to see if he would consider the RNS procedure
Any extra help from somebody in the same boat as I am would be greatly appreciated.
We are all in this together. Its a special club that we belong (honestly-a club that i would sooner not want to partake) but there isn’t a whole lot that we can do other than support one another. We all have to stick together. I wish everybody the best of luck in your journey to a full, exciting life that you want and not to loose out on some of experiences that others may have. We can do it. With proper precautions we can do what our non epilepsy counterparts can have. We just may need to approach it from a different angle.