← Return to Seizures: Monitoring device
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Replies to "HEADS-UP on monitoring equipment. This post is not at all meant to frighten or keep you..."
@eeegreen and @1634517678, you're right. There is a lot of stigma associated with epilepsy. You may wish to continue talking about that in this discussion:
- Stigma and Epilepsy (or any stigma) https://connect.mayoclinic.org/discussion/stigma/
I'd like to return this conversation back to recommendations for Epilepsy Monitoring Devices.
@1634517678, I'm sorry that you had such a poor experience with remote monitoring with your neurologist. Can you help me understand? Usually professional monitoring is done for a short period in hospital in an Epilepsy Monitoring Unit. Other members have shared their experiences here:
- Been to an Epilepsy Monitoring Unit? What’s it like? https://connect.mayoclinic.org/discussion/been-to-an-epilepsy-monitoring-unit-whats-it-like/
It sounds like you had a temporary mobile unit that was monitored by the neurology team remotely, correct?
This differs from the question that @mmas is asking (I think). She is looking for a device that would alert her to a change in her daughter's activity, especially at night.
@mmas, I found several articles reviewing various devices that might help you with your search:
- Seizure Monitors Price and Evaluation April 2020 https://epilepsyfoundation.org.au/wp-content/uploads/2020/04/Seizure-Monitors-Price-and-Evaluation-April-2020.pdf
- Nighttime Seizure Activity: Will Your Family Ever Sleep Peacefully Again? https://www.epilepsy.com/article/2014/3/nighttime-seizure-activity-will-your-family-ever-sleep-peacefully-again
- The Role of Seizure Alerts https://www.epilepsy.com/learn/early-death-and-sudep/sudep/role-seizure-alerts
To know what type of device would work for you, you can start with questions like What do you want the seizure alert device to do? Alert you or track activity?
Do you want to use the device only at home? Only at night? What type of device will your daughter be willing to use or wear?
Thank you for sharing your experience with us today. What eases my mind (so to speak), is that we’re treated differently. I have zero insurance. My neurologist has never physically seen me. To be fair, I was diagnosed in early March right before lockdown. I’m on lamotrigine & doc is switching to another Rx, starts with a ‘D’ because my seizures are ramping up (3 per day, I don’t always pass out).
Is there Really any way to explain what this does to the physical body, but somehow worse is the enormous psychological toll. It’s a really lonely road, it’s scary and exhausting.
I’m sorry, actually heart hurt that you’ve received sub-par service. Dismissive behavior by the people responsible for Helping You.
Be as well as you can be.
~Erica