Seizures: Monitoring device

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.
Jen

@jenfossbru
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.
https://www.nightwatchepilepsy.com/nightwatch
Take care,
Jake

@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.
~Erica

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?

For now,

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.

@eeegreen
“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?
Take care,
Jake

@eeegreen
“Dilantin is the new Rx.
My doc is going off of the MRI”
Could you clarify the above statement? Did you have a lession/s on the MRI?
Be sure to have your Dilantin level checked regularly. One of my Neurologists years ago refused to give me a lab slip for my level so I drove to my out-of-town primary care doctor and she authorized the test but driving home I had a seizure. As it turned out my level was low.
A common side effect of Dilantin is red swollen gums that can bleed easily. Good oral hygiene is important since it could lead to more serious gum diseases.
Doctors usually order Dilantin to be taking 3 to 4 times a day but it can be taken once a day. I was on Dilantin for 25 or 30 years. My doctor believes that’s what caused my neuropathy.
Hopefully it will control your seizures,
Jake

Thanks for asking! Well my daughter has had her seizures in night for many years. Now that she’s older I worry about her getting up and falling during a seizure. Unfortunately that happened last night. I have a video monitor on every night but looking for maybe a app or something if I got her a Apple Watch or something like that, that would alert me with a change in heart rate. It seems to be hard to find something with out a monthly fee. Those mats or cameras aren’t super accurate and feel like they would be going off more often then just for a seizure. Any ideas on a app that would alert me on my phone if I got her Apple Watch to wear at night?