Chat and Community Forums Closed

Due to the popularity of social media, we have seen decreasing engagement on our forums and chat. Please know we want to keep talking to you about epilepsy, seizures, and what you need. We want to stay connected with you.

Community Forum

Share your Priorities for Devices in Epilepsy

Have you gone shopping lately or browsed the internet? Have you noticed all the devices that are available? We can measure just about anything now using some type of device. Many health problems can be treated with devices as well which is revolutionizing health care and our lives.

The epilepsy field is benefiting from these changes as scientists joint with technology experts to find better ways of helping people with epilepsy and ideally, find new ways of treating and preventing seizures and SUDEP. While some devices are already available, others are in various stages of development.

Helps us understand what you think is needed for epilepsy -  What do you want? What do you think would be most important?

  • Ways to stay safe
  • Ways to tell or alert someone else that a person is having a seizure
  • Ways to record seizures
  • Ways to detect seizures
  • Ways to predict if and when a seizure will occur
  • Ways to treat seizures and stop them 
  • Ways to predict if a person is at risk for SUDEP (sudden unexplained death in epilepsy)
  • Ways to prevent epilepsy from developing
  • Ways to prevent SUDEP
  • Ways to make living with epilepsy easier
  • Other ideas?

Please share your priorities and ideas of how devices can help you and families with epilepsy!

Thank you for your help!

Comments

I am excited that I will

I am excited that I will probably have the Responsive Nerve Stimulator implanted in my near future.  Hopefully this will eventually lead to better seizure control.  But more than that I am looking forward to having a device implanted that will detect and record all my seizures.  For more than 25 years I've been charting all of my seizures (at least the ones that I am aware of) on my computer on a spreadsheet.  Along with this I log medications, doctor visits, blood levels, tests, and anything else that may effect my epilepsy health.  Although I have seizures that are not fully controlled keeping records on all these details has helped me to take more control when it comes to making choices about my epilepsy treatment.  I am not just dependent upon the doctors' wisdom and good judgment; we are a team.  My doctor has the latest info on epilepsy treatments and I have the data and experience that helps us make decisions about my treatment.  Of course a good number of patients will never qualify for RNS.  But these patients would benefit much from a device that detects seizures.  And maybe such a device could even detect minor changes in brainwave activity.  Right now patients have to suffer seizures to find out a medication is not working.  A device that monitors brainwave activity 24/7 could indicate if a drug therapy is effective well before the seizures occur.  

I had the Neuropace RNS

I had the Neuropace RNS inserted almost 3 years ago.  I was having right temporal lobe complex partial seizures (about 1 every other day).   Only recently (about 6 months ago) was the device changed to react differently to the seizures, and now they occur about once per week. I couldn't believe how long this took;  I even have had the RNS battery replaced once so far.These right temporal lobe seizures started about 10 years ago after seizures in my left temporal lobe were eliminated by surgery.  I was then told that the surgery might result in activating seizures on the right side.   The ones on the right side are a little less severe but gradually became more frequent.  

Our Mission

The mission of the Epilepsy Foundation is to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives.

 
24/7 helpline