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Real members of MyEpilepsyTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Do your seizures have an on and off switch?

A MyEpilepsyTeam Member asked a question 💭
Philadelphia, PA

My seizures started after a car accident, at the beginning of the 21st century. It started singular and far in between. The impact started being more frequent and more harsh at the middle of 2014. I was in so many studies, I cannot name. A few years ago I received a VNS. It was hard to acclimate, but a year ago it settled, and this past year was amazing with little or no seizures, until January 25, 2026 and April 1, 2026. Oh well that is only two, yes, but the after effects has been… read more

April 10
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Reactions
A MyEpilepsyTeam Member

Hallo Audrey .. Jen and me read this and we cry for you 💔😭😢 .. we be knowing how relieved you be with VNS when it seem to settle .. and your hope surges .. this be strong emotion .. and sadly .. good as it feel .. it can trigger seizures .. and they be far worse than before ., st least that be case with me ..as said above ., your VNS may need adjustment .. or even bsttery may be a problem .. or your meds may need to be adjusted ., for me it be different ., I not have VNS but I do have pacemaker .. and the alarm system that suppose to warn us battery be dying did not function .. it stop working ., so my heart flatline .. and only my wife Jen's vigilence to notice I not be breathing .. and she quick to apply CPR to me .. and scream for our middle son who be staying with us to call 911 ..keep me alive .. at hospital they find problem .. a wee component fail in alarm system ..that almost cost me my life .. so ., everyone be different ., some have many problems with technology ., some have none .. worth checking out when technology involved .. .. so for some of us .. those symptoms mean something amiss .. VNS can be good for some and not help others a bit ., or like you ..take a while to do their job .. then go haywire ., in one case we know of it not be VNS unit ., but the wires round vagus nerve that slip .. so please let your neurologist know ASAP.. we send you hugs of hope and prayers for resilience Audrey .. your Michigan friends William and Jen 💜💙🤗🤗🕊🕊

April 10
A MyEpilepsyTeam Member

You be welcome Audrey ., we be here .. we send you hugs and pray for you .. William and Jen 💜💙🤗🤗🕊🕊

April 11
A MyEpilepsyTeam Member

I will ask and inform my neurologist via text and my next appointment. Thank you for your incite.

April 10
A MyEpilepsyTeam Member

@A MyEpilepsyTeam Member
No, the first six years I just had seizures all the time. Acutually, I don't reemmebr the first five years of having seizures. I am so thankful in 2023 things changes and I was only having seizures every three months. I gues the medication were taken control, plus lossing eighty pounds and learning not to let my life which I am not happy about stress me. I only had one seizure last year and none so far this year. I know I could have a seizure at any timeand i will deal with it.

April 10
MyEpilepsyTeam

Do seizures have triggers that can make them more or less likely to happen?

While seizures don't have a simple on/off switch, many people find that certain triggers can make seizures more likely to occur. It sounds like you had wonderful seizure control for about a year with your VNS, which is encouraging.

Common triggers Show Full Answer

Do seizures have triggers that can make them more or less likely to happen?

While seizures don't have a simple on/off switch, many people find that certain triggers can make seizures more likely to occur. It sounds like you had wonderful seizure control for about a year with your VNS, which is encouraging.

Common triggers that might explain breakthrough seizures include:

* Missed or irregular medication doses
* Inadequate sleep or changes in sleep patterns
* Stress or intense emotions
* Illness or infection
* Hormonal changes
* Low blood sugar from irregular meals

The severe after-effects you're experiencing—shaking, dizziness, difficulty standing, and loss of coordination—are concerning and deserve immediate medical attention. These symptoms could indicate that your seizures are more severe than before or that something else needs adjustment.

It's worth reaching out to your neurologist to discuss whether your VNS settings need adjustment or if medication changes might help. A MyEpilepsyTeam member shared similar experiences with breakthrough seizures after long periods of control, noting how frustrating it can be when seizure patterns change unexpectedly.

Your feelings about independence are completely valid. Many people with epilepsy struggle with the balance between accepting help and maintaining autonomy. The senior living application might actually provide more independence with built-in support systems nearby.

April 10

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