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Pains being earache, neck ache, pains in the chest, pains when you swipe... or just anything else? Thanks ☺️ πŸ’œ

June 7
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A MyEpilepsyTeam Member

It's been a while since I had the implant and while it worked, I did go through some discomfort at 1st. It was turned up and very uncomfortable due to the strong pulse, once the Dr. I saw then finally had put it to where I could bare with it. What had experienced once adjusted after several months was fine.

June 8
A MyEpilepsyTeam Member

I don't remember that far back. Any discomfort I've had from the VNS was when I had to turn it up to the highest pulse for a short time. When it was set at the higher pulse it was working well for my seizures... but the pulse was so uncomfortable it was getting to a point of being intolerable to do daily things! Now... most people don't need to set there VNS to the MAX... so don't worry about it too much!πŸ˜‰ I might have just not been able to handle the pulse because I'm petite.πŸ€—πŸ₯΄
I also find when I manually activate the VNS... because mine is at a high pulse, I go into a "coughing fit"... almost to the point of throwing up(but I haven't...yet).🫣

June 7
A MyEpilepsyTeam Member

Hi, I do wish your VNS works out great for you. Mine was implanted years ago, I had my ups and downs at first. Once adjusted it worked good and never sorry I got 1.

June 7
MyEpilepsyTeam

Congrats on getting the VNS fitted β€” it's a big step! πŸ’œ Some discomfort after having one fitted is pretty common. Here are some known side effects that others have experienced:

- Throat discomfort or hoarseness
- Coughing
- Trouble swallowing
- Neck discomfort (makes sense given where the wire connects!)
- Chest discomfort Show Full Answer

Congrats on getting the VNS fitted β€” it's a big step! πŸ’œ Some discomfort after having one fitted is pretty common. Here are some known side effects that others have experienced:

- Throat discomfort or hoarseness
- Coughing
- Trouble swallowing
- Neck discomfort (makes sense given where the wire connects!)
- Chest discomfort around the implant site As for swiping, some people do feel a stronger sensation when the magnet is used to boost the signal β€” that's normal as it increases the intensity of the electrical pulse.

One MyEpilepsyTeam member shared that their child had a VNS for over seven years and found swiping really helpful for stopping seizures, so the adjustment is often worth it! These side effects often settle down over time. That said, if any pain feels severe or isn't improving, it's always worth checking in with your doctor to make sure everything is healing as it should. 😊

June 7
A MyEpilepsyTeam Member

I guess a good metaphor for this would be, "like wearing a new pair of shoes"! They might feel a bit tight at first... but once you work them in they feel great!
Now... a VNS feels "awkward" at first because your body isn't used the pulses and new physical equipment you now have IN your body. The main options your body has to react is:
-to get used to it
-tolerate it
-stay in pain

June 8

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A MyEpilepsyTeam Member asked a question πŸ’­
Cheshunt, UK