Mayo Clinic Connect
My daughter typically has her seizures during the night and want to get some sort of heart/movement monitoring system that alerts me with any big changes throughout the night. Any suggestions?
Liked by Leonard
While I don't have any personal or family experience with seizures, I did a little research online and found that the Epilepsy Foundation has some information on these types of devices. Her is the link, https://epilepsyfoundation.org.au/understanding-epilepsy/epilepsy-and-seizure-management-tools/seizure-monitors-devices/
Also, WebMD (which tends to be very user friendly) also has some information. Here is that link, https://www.webmd.com/epilepsy/news/20151208/wearable-devices-aim-to-monitor-epileptic-seizures#1
How frequently is your daughter having these nighttime seizures? Also, I'm wondering, have you discussed monitoring with your daughter's neurologist? He/she might have some suggestions as well.
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HEADS-UP on monitoring equipment. This post is not at all meant to frighten or keep you away from doing the procedure at all. This is about cost and quality of equipment. It only represents my experience and things I would do differently for my installation. I have used the unit 2 times over 3 years, 3 days each time. Your unit most likely will be installed by a contractor working for your neurologist. Neurologist reads information (just a print-out, spread sheet), that was printed by contractor. No paperwork comes out while using unit.
10+ wires are glued to the head in various locations. Those attachment wires come from head, with a main cord (approx 3/4 round) to a small backpack, like what you'd use for school, and worn the same way. Monitoring unit (approx 2x3x6) with battery pack. Total weight around 3-4 pounds. The wires are uncomfortable and your daughter may not like that much but, do explain it to her first.
EQUIPMENT: Both times my unit had broken parts taped on, unit dirty, backpack torn enough that I had to use tape and paper clips to hold backpack material in place. Both 1st and 2nd unit had batteries that.ran out before the 2nd day was over, and it doesn't let you know it stopped while wearing. I didn't find out until my follow-up visit with my neurologist.
PRICE and then what to do: The amount my neurologist billed was 10k. My Medicare A and B paid 9.Get the price yours is going to cost from the neurologist before!!! install!!,,, then, DEFINITELY call your insurance to see if it's covered and how much, and get agents name!!! WHAT TO DO: If when you go to to get the unit put on,,, Very First Thing… you need to politely demand to see all parts, before wire attachment is started, before anything. If it is dirty, broken/worn parts etc, you "stop right there", get the name of the contractor, saying you want a clean, not broken or (whatever is wrong) and that you will be back when it's scheduled next. Very unlikely they will have another right in that room or building. Same story if it happens again. Before my 2nd visit I asked for another contractor and asked for the name of the contractor. I was told by neurologist that that one company was the onlyone they they use. This happened in Denver so I'm quite sure there were more.
NOTE 1: I was already having trouble with my neurologist. We epileptics know the quality and possibilities of finding a good one, but keep looking if you have not. That's not part of this story really, except for getting a different contractor and neurologist later. You may very well get another neurologist who may think the test is important, but you'll have that discussion on first or second visit. No laws about seeing 2 neurologists at a time, and ask the new neurologists who his contractor is.
NOTE 2: If a person is going to get charged 10k for this unit, it needs to be 100%, tip-top condition. That unit may be worth 20-40k but it's still their responsibility to provide what they have stated that the service is, to your neurologist! 10k is a nice used car. In my case, the neurologist got billed by the contractor, paid it, maybe 6-7k, and even after my complaint to him, then billed me. I had already said, "I'll do another 3 day unit, but if I'm paying for 3 days, that's what I need. My neurologist even had the _____tyhj478+ to tell me, "2 days is good enough."
So, that's my story and,,, it may only represent 5% of the contractors out there. If your neurologist is good, he should be mad about what happened and demand another unit, and 3 more days from the contractor. I wouldn't bring this kind of a story up normally but a) the test is important, way beyond a couple office visits and, b) way to expensive to get something less. Always remember,,, You Are Purchasing Your Neurologist, and he works for YOU and you pay him for that service… Thank you.
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.
Watch out for me as a bible writer,
Yes it's a bit of a loner walk. When I was 22, other than my girlfriend and 2 family members, I told nobody that I had epilepsy. Because of the potential work related negatives that often will never be forgotten. Example: I work in construction. Word gets around after a while in a town of 300,000. I'm 65 and it would be expected that some people think of my abilities as something like sitting in an institution, shaking endlessly with aspirin for control. I'm a general contractor now and if a client knew, I could expect that they would call me last or not at all. 20% of the rest of the world thinks they can catch it. Another 75% will never meet someone who has it., or that they know has it. Me–my practice only… Nobody really needs to know I have it. Little good can come of it outside this kind of format here, other people with the problem, people with varied experience to offer you. Mayo can jump me here for that last sentence. I'm just stating my practice.
As far as epilepsy service, it's like a car repair. Good shops and bad. Some for some things. Not all neurologists got a straight "A" in all their classes, some C. And some are short 10-11% on common sense which is harder yet to believe, but common sense was given out randomly at birth, a few do learn it though.
Being alone: Maybe the best answer/view, for me, was to consider myself a comedian for the rest of the world, without saying anything. I always felt that they the humans weren't able to understand, call it a disability larger than mine. And theirs actually is larger since it's not something they are going to spend much time on understanding, just reacting to it. I think of it as, not really their fault, their disability. Pat them on the back without saying it or doing it. But don't be critical or angry about it. I worked for the Department of Disabilities in a southern Chicago location and for a community living house for developmentally disabled in Boulder Colorado, 8 residents with 8 hour a day jobs, incredible discrimination in many locations, only not necessarily color of skin. The best jobs I have ever had! One observation and many statements by the residents there was, "I wish nobody knew I was disabled." Face structure for them was often a way for someone to make that observation, same as color, as there are African Americans with epilepsy too. I can fairly tell you skin color or nationality can fade in-out with years. The way people discriminate with others with disabilities will be around longer. It already has been hundreds of years. Mayo can jump me for that one too. Let's say I'm truly not being political.
lamotrigine I believe is a chemical likeness to Lamictal. I'm on Lamictal. Doing well but on a large dose for 8 years, but controlled 90%, 500mg a day when 600 is considered close to max. I was on lamotrigine for 3 days and it did not work. Back to normal once back to Lamictal and just fine. About 5% of lamictal users have to have the original brand name. I'm curious about how/why your neurologist has never seen you. This may be because of the virus but it seems a bit overactive by your neurologist. If you were in a hospital for hitting your head during a seizure, you would be seen by or referred to a neurologist. If CT, MRI were needed, and it would be if you are having what you just described, when you got to have those done, everyone there would be wearing a mask. It's a fact, I just did both less than 30 days ago. If we can sit in a Wendy's, you have permission to have your mask off for eating. Masks or more, I would think, should get you into an office for an exam. I was just in a dermatologists office to check a skin issue (1 month ago). We wore masks and so did the staff. Maybe this is where some of the Mayo people should step in to verify. I find it hard to believe a neurologist can prescribe meds without seeing you(?), epilepsy(?) with drugs(?). I could be wrong. Dear Mayo, please step in.
Leonard, I think posted here, if it's who I think he is (9979 posts) is smarter than most neurologist's for a couple reasons. Mostly because he asks questions, not just of folks here, of neurologists. Again, Mayo staff, please step in here,,, they know Leonard and he would be able to comment and willingly help and direct better than I. If he doesn't find your posts anyway I'd be surprised so, go looking for him. I'm sure Mayo can find him for you too. And, he's a bit of a Psychiatrist, with good free help, and he jokes too.
I'm in and out of this Mayo site during a day or weeks or hours. If I don't get back here in the next couple hours don't worry about it. I want to come back to see whats been going on with you and will before end of day today, 9PMish, mountain time. And please, if I'm rattling on too much, say so. I'm aware of it with no feelings hurt. Rick
Erica, The no insurance part of your post is a problem for a lot of us. The only way I got Medicare is because I had to be defined as disabled. That can be an odd process. I went through an attorney because I was unable to write, think cognitively, remember conversations and didn't know anyone who knew how to do it. It took 2.5 years to get it done here in Colorado. I have heard 6 months in California, but that was 18 years ago. I don't know the what/how long/short process may be. I'm fairly well sure you will need to have a diagnosis of epilepsy. Sounds like you don't. Again, Mayo should be able to step in here for that order.
Drugs, letter "D" you may be talking about,, Dilantin.
Has you neurologist said the reason he isn't seeing you in office is because of no insurance?
@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?
Liked by Teresa, Volunteer Mentor
remotely, correct?Mine was a mobile.
Sorry for the few words posting. I accidentally hit Post Reply.
mmas asked about heart monitors and epilepsy monitors. Heart monitors aren't really epilepsy monitors, or at least minimally. mmas, I think, was concerned about epilepsy during the night. A heart monitor wouldn't provide much epilepsy info beyond a seizure in progress. A seizure would change heart rate. The monitors shown on the Epilepsy Foundation link are pretty basic for user purchase and track minimal amounts of seizure activity versus a unit that tracks (per the spread sheet I saw in the neurologists office) several kinds of electrical activity. Not being a neurologist or able to understand all the lines on the tracking sheet I was shown I couldn't make a recommendation for type of unit. Example: When in a hospital, not for epileptic monitoring, next to a bed would be a TV screen that tracks 6-7-8 types of body function. In the neurologists office, there were 10+ tracking lines for brain only. It sounded like mmas wasn't entirely sure of what they wanted/needed to view and be alerted to.
Tracking remotely at time of unit use, during that 3 days, no none. All info was collect inside the unit. That contractor transferred that info to the neurologist several days later.
I also responded to eeegreen as it sounded like she was perhaps new to epilepsy. Too, new to a few other upsetting things. She was responding to my post and that's where I led the post astray.
Sorry for my responses that were off the original topic by mmas, the Monitoring Device. I guess a little too much info on the monitoring device.
Liked by eeegreen
@1634517678, you hit the nail on the head. When considering a device, one needs to be clear on what they want the device to do:
To notify someone when a seizure occurs by alarm, text message or phone call.
• To track and record how often seizures occur.
• To learn what your or your loved one's seizures look like.
• To have a safety check during or right after a seizure.
• To let someone know where you are if you are alone during a seizure.
This factsheet from the Epilepsy Foundation helps guide people to choosing the right device for them
– Considering a Seizure Alert Device https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf
As it has been a few days since you last posted I was thinking about you and wondering how your daughter is doing with her seizures. Is she doing better? Were you able to talk with her doctor about home monitoring devices?
Our neurologist & mayo doctor stated devices can make people more anxious because it will give false positives. We use a high quality fitbit to track heart rate & sleep and works just fine.
Liked by Colleen Young, Connect Director
I would guess the most common reason to purchase a seizure warning device would be to help prevent S.U.D.E.P. (Sudden Unexpected Death in Epilepsy.)
I certainly don’t understand your neurologists thinking. I would hope that Neurologists at Mayo Clinic would be completely open and honest with their patients who have refractory seizures and to their families regarding the possibility of S.U.D.E.P. and Convulsive Status Epilepticus as well as Tonic & Tonic Clonic seizures and the possible complications that may accompany them.
I can tell you based on what parents have told me who have lost children, not one of them would have resented or had the anxiety based on a false alarm considering the alternative. Most of the parents I talked to never heard of SUDEP, they never heard of anti-suffocation pillows and mattresses, seizure dogs or seizure alarms and many never thought about putting in a baby monitor or sleeping with their child. Not everyone has risk factors for SUDEP but that doesn’t make them immune to it or Convulsive Status Epilepticus for that matter. It only takes one seizure to secumb which sometimes happens in people without all the risk factors.
This subject is like a raw nerve with me because so many people who do have all the risk factors still don’t even know SUDEP and Status Epilepticus exist and the deadly consequences associated with them.
I haven’t chimed in on this subject because I don’t really know much about seizure detection devices/alarms.
These devices aren’t yet perfected and I would imagine they would give off numerous false positives but If I were to get one I might try out the nightwatch.
@hopeful ~ yes, Dilantin is the new Rx.
My doc is going off of the MRI that I had in ER after my second fall down/pass out seizures in two days. We’ve had one virtual & three phone calls. She seems surprised every conversation when insurance is brought up, and she asked me Wednesday just How she became my neurologist. I think she wants to see how I do on new meds, there’s been no mention of an in-person visit. I wait to cry after the calls. She refers to my symptoms as seizures, and epilepsy is included in the conversations. Can I assume that I’m diagnosed as having epilepsy?
I’d like to ask you a question, please don’t feel like you have to answer.
How? How did you find the way? From what you’ve said, your road with epilepsy has been very long and difficult.
Yet. Here you are. Taking time for the newbie. Thank you. It means the world.
Hey Erica, Well, I don't know about newbie. If you've been on Planet Earth more than a few years, newbie is outdated. More on that in a minute.
Before below, Colleen Young above essentially asked me to keep on topic. I think I may have dried from mmas first statement on Seizures, Monitoring device August 13 8:25 PM. I'm still trying to figure out some of how that happened but, I did. I want to ask Colleen to tell you and I where to have our conversation, the couple we have so far. I'm not new to this format but new enough to not know where (what box or group) you and I should go to have it, or more.
I'm hoping she is reading to give that direction. I believe it can be done in email safely, through this program, each of us protected?
You said, "she asked me Wednesday just How she became my neurologist." I'm not sure but that could mean a couple things. a) She is checking to see what your cognitive skills are, if you actually remember where/how you guys met. She is checking your memory. Which is fine and appropriate. All my different neurologists over time have asked what day it is and what day it will be 2 days from now. b) She actually doesn't know how you found her,,, on-line, referral or an article you read, that she may have been part of etc.
You said, "She seems surprised every conversation when insurance is brought up." I'm not sure what that might mean." a) She brings it up and knows it's a tough topic. b) You bring it up and she is surprised. c) She may have thought you had insurance, and that maybe you don't remember having insurance. d) The hospital saw you and they would ask if you have insurance. I'm only guessing (because I'm a bit green on hospital procedure now), the hospital made a referral to your neurologist and that's how you found the neurologist. I don't know if the neurologist's services start on your first call with her or a certain number of calls are part of emergency services. I don't know if during the covid start, something has changed with emergency room procedure for referrals and other.
Sounds like she's not worried about talking about your paying because she considers your care to come first and may not be sure of your reaction. She want's you to continue talking to her. So, do that. I will say that next time you guys talk (neurologist and you) you should definitely have someone with you. Put your phone on speaker phone. Have that person take notes for you. Tell the neurologist that that person is with you by your consent and ask the neurologist if that is ok. If not, ask why and and how you can use that person with her. She'll probably ask for some kind of release form. All ok and nothing to be afraid of.
You said, "She refers to my symptoms as seizures." She would anybody because you have had one. And, "epilepsy is included in the conversations." It would be included if talking about the "possibility" of it being epilepsy. And, "Can I assume that I’m diagnosed as having epilepsy." Ask her. Don't assume it. The information that she or the hospital has on you is very limited at this point in time. You can have seizures without having epilepsy. The neurologist is, should be, still trying to get a better picture of what may be happening.
A little on my epilepsy history to help understand some use of the word epilepsy, "in my case." 22 yrs old I had my first grand-mal, while sleeping. From 22, until 48 years old all gran-mal were while sleeping. That gran-mal at 48 was daytime while conscious, no advance warning. That continued for a just a couple years and stopped daytime and nighttime. I'm 65 and still no gran-mal. From 30 and still now, I will have a 15 second period where my vision is blurred on one side and, the inability to speak without mixing words including not being able to understand what was being said when in a conversation for that 15 seconds, sometimes 30, but not all. I will be able to stand during that, walk around, business as usual, just a funny feeling. From 48 until 58 that same blur but 30% of the time the blur and cognitive skills were 3 times stronger. I was still able to walk, no-talking, funny feeling but with 2-3 minutes notice that it was going to happen. That was happening from 4-6 times a day to once every 1-3 months. There is more that I can go on with, but but but, I was diagnosed as having epilepsy. I've had 5-6 neurologists in that time period that say I'm having 2-3 different kinds of seizures. There was a head injury 6 months before the 1st seizure, but never a statement by neurologists that it was a cause. You don't necessarily need an injury. You'll like this part… at the 48 year old seizure I lost 30% of my memory and could only retain 30% of what took place in a day. I was also told I started talking and writing too much at that point. Must be true.
6-7 points on above paragraph… I do still talk too much. Memory never got back to my original. Seizures evolved over time. I had no seizures at a point for 5-6 years. Neurologists varied somewhat on cause and type-of seizure. I've been on probably 7-10 different meds/different levels (now on Lymictal for 10 years) with best control.
So, relax with yourself on the epilepsy diagnosis. In any case, the psychological effect won't help understanding and stress can/will zero to 50% of the time lead to additional brain dysfunction/seizures.
Still talking about me here!!! A great musician/artist, like his music or not, Frank Zappa died of cancer in his 50s. He had been feeling ill for 10 years prior but had only seen 2 doctors who said, "you are fine." His message on video while sick in bed during the last month was, "if the doctor says you are ok but you do not feel ok, see another and see another and see another." It may have made his life different was his message. Not today or the next day but when you feel better, it is ok to get another opinion. You may in fact have epilepsy but, get a few other neurologists opinions. Remain open minded to that epilepsy possibility, or it may be harder to swallow if the diagnosis is epilepsy. I wouldn't say, "try to find somebody to tell you don't have epilepsy."
You said, "How did you find the way?" Well, look at this bible above. I wouldn't say I've entirely found the way or I could reduce the above to 2 paragraphs, but that's not what you are asking. That's a biggie I've been asking myself (pre seizures) from around 6 years old until now. Not meant to be funny. We're all still trying to find our way is not the answer. I try to look at, different points of peoples view, as why they behave like they do. What was the cause or their motive. That practice came from their reaction to my epilepsy (my specific impairments, story, missing memory in a conversation), but it crosses over to many things after time, if you let it, carefully. Too, "I'm not getting out of this (epilepsy) so I'd better get with the (my) program (life as it is)." Easy for me to say because for some, epilepsy is very restrictive. And from time to time, yes I feel like it wasn't fair. It made me more of a viewer, but go easy on them, their disability is just their misunderstanding. After coming to that, the other people, shopping at the grocery store, can't really see me and it becomes not so invasive to my mental health.
“Can I assume that I’m diagnosed as having epilepsy?”
If you have had 2 or more unprovoked seizures Epilepsy would be a reasonable conclusion to come to.
Have you had a MRI or EEG & if so were they normal or abnormal?
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