RoadID is the best! I also wear the same. If my husband is not around I always wear mine, It has his number and the same as above and says do not transport to hospital. It doesn't always work bc sometimes I wake up in the hospital but most of the time they call him before because I'm an avid mountain biker/road biker. It's a good investment. Especially if you like outdoor activities.
>and says do not transport to hospital.
I'm gonna be rude and assume you're in the US? I know it saves money but this can't be a good or safe idea. I would not trust anyone to judge whether I need hospital after going down and maybe smashing my head.
The national average cost for ambulance rides is $1300. The reason it's so expensive is that ambulances are often independent companies contracted by the hospitals, so they're not always covered by insurance plans.
It's not good, or safe. But that's the way it is in this hellhole.
Yeah I get that and I don't know what it's like in reality, I would personally rather just take a hospital trip I can't afford than maybe laying there needing one and no one calling it.
I'm just saying this after I smashed my head on a heater for concussion and then another 3-4 seizures in the ambulance just for good measure, I was totally fucked afterwards and can't imagine waking up with people just staring.
I think most people, especially if you have an epilepsy bracelet on, could discern between not calling an ambulance if they're witnessing a seizure only and calling one irregardless of seizure if there is an obvious injury. Having said that I know there are some people who might think no ER necessary may equate to thinking it's a choice comparable to DNR "do not resuscitate" due to lack of epilepsy education and not call no matter what, so, I agree with your opinion on the matter and feel it would be a big bonus if "unless injury has occurred" or something of that nature could be added for good measure to the bracelet..
Ya I think *most* people could figure out that it means "Don't call an ambulance if I'm doing an interesting dance on the floor" and not "don't call if I clearly busted my head on the way down."
Or at least, I hope that is the case. Lol oof.
Sadly enough, my epileptic 41 yr old daughter feels the same way about an ambulance being called for the very same reason. Fortunately, everyone in her life, work related included is informed to contact me to come if she has one and that has worked for a decade now but, ambulance rides not being covered by insurance clearly indicates yet another unexcusable breakdown in our medical system.
Man, yeah, things have gotten so screwed up. Insurance companies have figured out so many loopholes and workarounds that some things are even worse than they were before the ACA was implemented. It's horrifying.
I tell my coworkers to just call my mom and we can decide whether I should go or not. I don’t have a great hospital near me and when I tell them I’m epileptic they usually just take a lil blood let me sit in ER bed for 30 min and send me home. One time they had me stay overnight but my mom was in a different state and I was alone so they wanted to make sure someone was watching me.
Here it's free but I'd definitely be disappointed if I woke up surrounded by paramedics on an ambulance. Not like they can do much anyway except for making me waste a day, if not more, if they decide to keep me there for observation as has already happened
I look forward to being hit with Narcan 5-7 times before the EMTs figure it out lol. Last time I almost got a helicopter ride out of it; who would want a bracelet when you get a helicopter ride
I’m talking myself into getting one, it just hurts to accept I need one.
I had one before, you want an emergency number of a loved one, have the first line say “Im epileptic, if found unconscious, please phone ambulance, and afterwards call this number”
Or something like that.
It needs to be simple wording and not super long! I’m a nurse and know several EMS workers and they’ve said the same thing. Basically it should be straight to the point.
“ICE” stands for “in case of emergency”, so basically you put “ICE: 123-456-7890”.
First line should also always be your name.
Second line should be diagnosis.
Should also include if you have allergies or not.
I was against it for the longest time for the same reason, but I had a focal when I went to the bank and it cemented the decision. Thankfully my in law was taking me there so nothing happened. Do yourself a favor, friend, and go grab one.
I just got my first one in the mail a few days ago. I made sure to get a cool one. It honestly felt like I was putting a weight around my neck the first time I hooked it on.
BUT, this is the sort of thing I'd really support for others. Truly. The way I see it, of course it's not someone's fault that they're sick. Of course they should take any steps they need to make sure they're safe and cared for. Of course we should do everything to support people who need help, friends and strangers alike.
But it's so hard to apply that to ourselves, sometimes.
Care for yourself. You deserve to be safe. You got this.
I have a tattoo over my heart (hard to miss if placing EKG leads). Name, DOB, blood type, and says I have the RNS. The stimulator is MRI safe only in MRI mode.
I may be getting the RNS soon. MRI mode has never been discussed by my doctors and surgeon. Do you remember if your doctors/surgeon advised you of what to do when getting MRIs? I get a ton while unconscious after bad seizures. Other than a tattoo, what could I do to ensure the MRIs are safe? And would they be able to put my RNS in MRI mode while I'm unconscious? Now I'm terrified of being put in an MRI while not in MRI mode. Would the magnet just...oh lord I won't go there. How do you put it in MRI mode?
Sorry for so many questions. I've never heard of this before and you just made my anxiety skyrocket lol not your fault, though, I should know about this. I'm fascinated by the RNS.
I certainly didn't mean to make you anxious - my apologies.
My care team advised me to inform the MRI staff to put the device in MRI mode first. The tattoo is there in case I'm unconscious.
Apart from a tattoo, I might suggest an alert ID bracelet or necklace stating you have the RNS if you get one. You also get an implant ID card with the RNS system which I suggest carrying with your photo ID so first repsonders/ER staff will find it when identifying you if you're unconscious.
If there's an ER you normally go to, you can have them put a note in your chart as well so they are aware when you are brought in.
The device can be put into MRI mode whether or not you are unconscious.
A radiology team or your epilepsy doctor can put the device into MRI mode. Your epilepsy doctor will need to reactivate it following the scan(s).
[Neuropace.com](http://Neuropace.com) hosts a monthly webinar to help inform people. I recommend attending one to help address questions you have. They also have some really informative PDF documents about the system you can download for reference.
You betcha! Feel free to DM if you'd like to hear more about my experience with the RNS system.
\*I'm not a medical professional but I'm always happy to share my personal experience with epilepsy and the treatments I've had.
I do not, because my medical history is to complex to fit on a medical alert bracelet. My husband is well versed. He's signed paperwork at my local hospital stating he can make medical decisions on my behalf of I am not able to (which unfortunately has happened).
He is listed as my emergency contact in my phone and if I'm traveling it's almost never without him as I can't drive in the first place because of my epilepsy.
Road id makes bracelets with codes on them that are linked to an online profile. That way, you can have more info than just what fits on a bracelet. If your history is that complex, you should probably get a medical alert bracelet.
I was in the same situation as you. Too much info to fit and I never left my partner/emergency contact anyway. Well, someone gave me a road id bracelet as a gift and I love it! Gives me some peace of mind and gave me some motivation to start going places on my own. I have more independence now because of that bracelet. Gives my partner a lot of peace of mind too.
I will look into it. Thank you. But unfortunately, beyond my epilepsy I can't go alot of places without my husband because I also have Spastic Quadriplegic Cerebral Palsy. While I'm not completely immobile, I do not have the greatest mobility and require quite a bit of assistance. We do not have aids or outside help. We conquer everything on our own, including raising our kids. We kind of just fly by the seat of our pants. Our kids never go without.
Yes, I wear my Road iD bracelet every day. Mine is going strong after five years and looks like new. It’s comfortable and comes in a bunch of different colors and styles.
Mine says Epilepsy and includes my name, city and state/my emergency contact’s name and phone number/my neurologist’s name, city and state.
I wear it to reduce the possibility of a seizure being confused with a stroke/heart attack/drug overdose.
[ROAD iD](https://www.roadid.com/pages/shop-road-id?utm_source=google&campaign_id=17132039482&ad_id=595978103995&utm_medium=cpc&utm_campaign=%7Bcampaign%7D&utm_content=143074107584&utm_term=&gclid=EAIaIQobChMI8uGV0oiChwMVQFn_AR0XoAUKEAAYASAAEgLfR_D_BwE&gad_source=1&gbraid=0AAAAAD6s2GGkGFSwi1paziPuF5V7N2VYu)
I have a necklace that I absolutely love that I bought off [Etsy ](https://www.etsy.com/listing/1209209514/custom-engrave-plump-heart-medical-id) and she was super sweet too!
I cut it to make it shorter so it showed more, I have a slight fear of having a seizure and it not being seen and someone freaking out.
Plus I liked a shorter length and let me tell you THAT was a feat!! Super strong. And I have all the proper jewelry tools.
Mine just says:
My name
Epilepsy
No EMS
ICE mama
Her number
But guys, now that I've read some of your comments & I've now FINALLY (after 10 years, YAY! got an actual diagnosis name not just "epilepsy") I'm thinking I need to change mine. 😭
Because now they've given me a rescue med, 2 diagnoses, but I also NEVER thought of putting NKA on there! 🤦
Maybe, "Hey! I'm a flopper. NO NARCAN! I'M NOT AN ADDICT! STOP!" Rescue med in pocket. Call my mama!!!!" (I also visit Wonderland often...)
Sorry...I survive on a dark sense of humor...🤷
Yes, because I need them to have some idea/age about me and ICE. Hard to pull all those memories to the front after gtc… an old coworker thought i needed cpr, the bracelet could have prevented what they did. the operation afterwards for trying to resuscitate someone in the middle of a seizure was miserable. now i’m scared without it honestly
Name
DoB
ICE-
SEIZURES - DNT or ER
depending on situation. putting epilepsy can be too broad a diagnosis in an emergency situation, they just need to know there’s a history of seizures and who to call on your behalf. Hope this helps.
The front just has the medical cross thing. On the back it says:
Name: Jxxx Sxxxxx
Epilepsy
Emergency contact: Parent
Emergency contact phone#: xxx xxx xxxx
First time I had my diagnosed* seizure(car accident) I told the cop I felt like I was on drugs and can remember the medic and cop arguing back and forth if I needed to be drug tested or not😂😂
I did not in fact get drug tested
I can’t seem to add a photo but:
I do. I’ve had a few since they get worn out over time. Mine is usually small so I don’t have a ton of room, so it says epilepsy and on the back it says my name. Next time I’ll probably get one with a phone number on it.
Edit: on my phone I have the emergency medical thing with all the info. So they can check that too for a ton of details.
I have a band I attach to my Apple Watch that has medical alert built into it. My little metal band has my name, meds, and emergency contact numbers listed
Yes. Well kind of. My medical alert bracelet says my name, and says "brain injury" which is the cause of my seizures/epilepsy, and says check cell phone for more info. Then on my phones lock screen, there's a banner that says "double tap for emergency medical info and contacts". So people can access that info without being able to access anything and everything else on my phone. And in the app, it has my name, date of birth, blood type, organ donor, code status, emergency contacts, medical conditions, medications, allergies, and any special notes that I want emergency responders to know. It has come in handy so many times and first responders absolutely love it.
It's called something like "medical ID in case of emergency" and 100% free.
So I accustomed got my in on Amazon.I can give you a link if you're interested I also have my Is wife's mom On the inside in graven and on the top , it says epilepsy and says the The kind.
That I have
I don't bother wearing them anymore EMS has never looked for one, I just end up calling someone to pick me up while on the way to the ambulance, or right after the seizure while they wait with me
Once a paramedic told my dad I should get a medical alert bracelet even though I was wearing a necklace
If you've been in the system long enough why bother it's all on some computer records anyway
I have a Myid one and it's lasted me a while I don't take mine off I need to get a new one the sport one I wear I've only taken off for surgery and my wrist felt naked it's been a really long time the only reason I would get a new one is this one is breaking they have many differnt kinds I wear the sport one so it doesnt rub
I have several fashionable bracelets and one CZ necklace. I don’t wear them anymore though. I’m fortunate to have been seizure free for an extended period of time. I wish I could remember where I got them though to recommend.
Yes, I got mine from laurenshope.com. It's rose gold and magnetic so fits to my wrist well. It just says "epilepsy" then my emergency contact name and number. The top has the emergency symbol on it, but in white so it doesn't stand out, but a paramedic or doctor would know to look for it or see it. I've had several from there over the years and this is by far my favorite. They're expensive but they last a very long time. I haven't had a grand mal seizure in 10 years but I never leave the house without wearing it, especially if I am driving. You just never know.
Yes. Only because of 2 emergencies where one would've come in handy.
It says my first and last name, date of birth, that I have epilepsy, my medical allergies, that I would prefer they not ruin the tattoo on my left arm with an IV, my significant other's phone number and on the back the phone numbers of my grandfather and my mother if my significant other can't be reached.
Yes I have one and it makes me feel less anxious if I'm ever out alone. Mine simply says:
First name
Epilepsy
ICE: xxxxxxxxxxx
Lamotrigine
It has only been helpful one time, but when you're seizing and can't communicate at least it's there to make people aware rather than them panic and do the wrong thing even if their intentions are good.
I actually just bought a new one today from a website called Callie.com, they are a jewelry company but also do medical bracelets. I'm a woman and the daintier bracelet was perfect as opposed to a chunkier one I got from Etsy. Both great just wanting something smaller. Comes in gold, rose gold and silver and you can have 55 characters engraved on the back which is exactly the amount I have for reference.
Hope this helped :)
I used to have a waterproof rubber bracelet.
I switched to a necklace (American MedID).
I put the basics...name, type of epilepsy, a contact with phone number, do not call ambulance and to time the seizure.
I used to but it snapped and I just haven’t ever gotten a new one😭 it used to say my name, my conditions (cerebral avm, epilepsy, and epipen user), and emergency contact and phone number. I want to get something with a QR code people can scan that brings you to a very specific run down of my conditions and what they are, emergency contact and info, meds needed, which hospital to call, what to do and what not to do so they can be informed to tell the responders when they arrive because I usually cannot speak for 15-20 minutes after a seizure.
We went with a silicon bracelet from Mediband.com.au and used 'Epilepsy' and the NHI number for identification. My daughter is non verbal during a seizure so if she's found by a stranger and they call an ambulance they can look up her details and call me from emergency contacts. They can see who she is, her address and medical history.
Medic alert was too expensive for my liking.
I have a med bracelet and then all my info on my watch. My bracelet has my name, emergency contact, condition (epilepsy), and because they’re small the bracelet has the most severe allergies listed
Absolutely.
Mine is a 24 hour wear from Lauren's Hope. The links all say "Love" (24/7 jewelry should be something that you really like) the Medic Alert tag has my name, Epilepsy, my medical allergy and my ICE.
My ICE is also in my phone.
for any one who doesn't know, ICE is In Case or Emergency. Your emergency contact. Some EMTs look on your phone, some recognize the bracelet.
It dumbfoundeds me when they don't.
I also have a medical alert necklace. For a while I had a job typing all day and the bracelet messed up my keyboard. Now where I work the necklace could get me hurt so back to the bracelet which I actually prefer.
I've got a pendant (just got a really pretty one - the [Donovan design from Lauren's Hope](https://www.laurenshope.com/antique-donovan-medical-id-dog-tag-necklace), cos I love some good accessories).
Name / Epilepsy / Turn on side / Put nothing in mouth /Med ID on bag strap / ICE number
And I keep one of those luggage tag holders on my bag with my current medical info card.
Probably gonna get a nice bracelet too. There's some really cool stuff out there with the info pretty discreet, but I feel like if you're gonna wear one, it should have the visible red symbol on it. EMTs might know what to look for, but if you hit the deck around random folks, they are gonna be panicking and I want them to see my tag right away.
I had one years ago but it broke and I never replaced it. But after my last tonic clonic my partner got me a new one. It has my name, epilepsy and my ICE (strangest loving gesture ever was that she out my mums number not hers so that even if we broke up I'd still be safe with my bracelet)
Yep, name, epilepsy and husbands number. If you have an iPhone you can also set up a medical id that comes up if you press on the volume up and off button at the same time. I have that with all my extended details on it, just in case.
My name, epilepsy, no drug allergies, and my SO’s phone number. The least important thing is my name. With the other stuff someone who finds me will know what’s wrong with me, if they can give me meds and where to get more info.
Mine lists my epilepsy, anxiety and allergy to bee stings. Also has the emergency number for the company I got the bracelet from, probably so emergency services can grab any details they need.
Yep, mine is through Medic Alert so it has:
Their 24/7 number at the top
Followed by my diagnosis (Temporal Lobe Epilepsy), as well as specifies Tonic Clonic and Absent Seizures (to be clear), the lists my severe allergies (Latex and a couple of antibiotics).
At the bottom is then my member number so when paramedics or first responders contact Medic Alert they are able to get more information (next of kin etc).
I have a bracelet for everyday wear and another one that I wear for playing sport.
I used to, it came in handy because I had an absence seizure and decided to walk into a main road (don't remember it). Thankfully there was a nurse on the road and she saw it on my wrist, apparently at first she thought I was drunk 🤣
My husband has been wanting me to get one. Especially since I’ve been stable for 6 months and got my license back and I’m able to go out alone more often. I’m indifferent on if I want to
Yup. But I think they're pretty useless these days. I have the same emergency info available to see via cell phone, which people or paramedics will gravitate towards...instead of searching for a tag that may not exist = waste of precious time. I broke my back during a previous seizure, moving me around to look for a med ID tag is not smart.
Mine's also not scannable, not sure if any are. (They should be) Anyways, mine just says EPILEPSY MTS and has the code. The code then tells them type of epilepsy and meds, etc. Seems like a lengthy process.
I had a black one...MedicAlert Brand..don't get those, when the black plating comes off it's hard to read. That is, if they can find it. They need to play catch-up with technology. Especially when you can access this stuff on peoples smart watches and phones. ...Much easier than hunting around for a medical tag.
I did wear one, then a job noticed it at an interview and asked about it. I dont wear one anymore.
Now I have the emergency option/medical ID set up on my phone. In an emergency someone can access the information even if my phone is locked. It says im epileptic and list my medications, doses, allergies and emergency contact people.
No. I used to have one, but when I went for first aid training I asked if the ambulance crew would look for one, and follow it. They said no because their priority was to stabilise the patient and then they would be checked out at the a&e for the reason they seized (as not all seizures are caused by epilepsy) and if further treatment was required.
After that I stopped wearing it, felt like a waste of time.
I opted for a medic alert product that slides on my apple watch band since I'm less likely to forget to wear the watch. It's two pieces, so the top has my partner's name and number, and the bottom says "no ems unless seizure lasts over 1 min or if injured"
I also got one of those bright red metal medical alert cards for my wallet. The first side has my name and "epilepsy" and then "!! IMPORTANT INSTRUCTIONS ON BACK !!", as well as my emergency contacts' info. On the back it says "turn on side on floor / cushion head / no items in mouth // no ems unless / seizure lasts over 1 min or if injured / otherwise please call family only"
I also used to use a medic alert necklace that just had the surnames and phone numbers for my emergency contact. I sometimes forget to wear the necklace, but I almost always have my watch and wallet
"ROAD iD" bracelet
All black with white lettering, so who knows if an EMS person will actually find it.
"Name, birth year
Wife name, wife phone, 'WIFE'
blood type, EPILEPSY
ALLERGY xxx
IS MY BIKE OK?"
I had to add that as some humor. If I get found on the side of the road it'll likely be from doing something stupid. My seizures are mostly under control.
I have these printed keyrings tags (on my keys, work id and meds bag), and a full ID card.
Tag shows name, NHS number, medical conditions x3 and my emergency contact
Full id card shows full address, name, emergency contacts, daily and emergency meds, full medical conditions list, full allergy list
I got a necklace off of Etsy. I didn’t want a chunky bracelet, it’s just something small that’s on my neck. The front says epilepsy and the back says my fiancé’s name which is my ICE contact. I like it a lot, something nice that I can wear and just blends in like another piece of silver jewelry.
I got a cute rose gold bracelet made on Etsy. All it says is epilepsy, factor 12 deficiency, blood thinner, ICE (and my husband's number)
Knowing myself I'll end up in the hospital and I figured they should have some idea of what the hell is wrong with me.
even if seizure free for 7 yrs, I still wear RoadID bracelet. Has my name, birth year, temporal lobe epilepsy, wife ICE, no ER necessary
RoadID is the best! I also wear the same. If my husband is not around I always wear mine, It has his number and the same as above and says do not transport to hospital. It doesn't always work bc sometimes I wake up in the hospital but most of the time they call him before because I'm an avid mountain biker/road biker. It's a good investment. Especially if you like outdoor activities.
>and says do not transport to hospital. I'm gonna be rude and assume you're in the US? I know it saves money but this can't be a good or safe idea. I would not trust anyone to judge whether I need hospital after going down and maybe smashing my head.
The national average cost for ambulance rides is $1300. The reason it's so expensive is that ambulances are often independent companies contracted by the hospitals, so they're not always covered by insurance plans. It's not good, or safe. But that's the way it is in this hellhole.
Yeah I get that and I don't know what it's like in reality, I would personally rather just take a hospital trip I can't afford than maybe laying there needing one and no one calling it. I'm just saying this after I smashed my head on a heater for concussion and then another 3-4 seizures in the ambulance just for good measure, I was totally fucked afterwards and can't imagine waking up with people just staring.
I think most people, especially if you have an epilepsy bracelet on, could discern between not calling an ambulance if they're witnessing a seizure only and calling one irregardless of seizure if there is an obvious injury. Having said that I know there are some people who might think no ER necessary may equate to thinking it's a choice comparable to DNR "do not resuscitate" due to lack of epilepsy education and not call no matter what, so, I agree with your opinion on the matter and feel it would be a big bonus if "unless injury has occurred" or something of that nature could be added for good measure to the bracelet..
Ya I think *most* people could figure out that it means "Don't call an ambulance if I'm doing an interesting dance on the floor" and not "don't call if I clearly busted my head on the way down." Or at least, I hope that is the case. Lol oof.
Sadly enough, my epileptic 41 yr old daughter feels the same way about an ambulance being called for the very same reason. Fortunately, everyone in her life, work related included is informed to contact me to come if she has one and that has worked for a decade now but, ambulance rides not being covered by insurance clearly indicates yet another unexcusable breakdown in our medical system.
Man, yeah, things have gotten so screwed up. Insurance companies have figured out so many loopholes and workarounds that some things are even worse than they were before the ACA was implemented. It's horrifying.
I just got my bill for my ambulance ride a month ago. They are trying to charge me a base rate plus $17 A MILE. Absolutely insane.
Love 2 be in the USA and need to start a GFM to pay for an ambulance WOO
I tell my coworkers to just call my mom and we can decide whether I should go or not. I don’t have a great hospital near me and when I tell them I’m epileptic they usually just take a lil blood let me sit in ER bed for 30 min and send me home. One time they had me stay overnight but my mom was in a different state and I was alone so they wanted to make sure someone was watching me.
Here it's free but I'd definitely be disappointed if I woke up surrounded by paramedics on an ambulance. Not like they can do much anyway except for making me waste a day, if not more, if they decide to keep me there for observation as has already happened
"Waste a day" 😂 Anyone would think seizure related injuries don't exist lol.
nope fuck it we ball
I have one Cause fuck it I fall
Best response. Legitimately made me laugh.
I look forward to being hit with Narcan 5-7 times before the EMTs figure it out lol. Last time I almost got a helicopter ride out of it; who would want a bracelet when you get a helicopter ride
Lmfao awww man you almost took a ride on the Trauma Hawk!? Ever since air wolf that’s been my dream!
As one great person said, "fuck it we ball" lmao
I love you for this one
mwah <3
I do. It’s helped bc I can’t speak after my seizures so I can just point to my bracelet and it says I have seizures who to call and what to do
I’m talking myself into getting one, it just hurts to accept I need one. I had one before, you want an emergency number of a loved one, have the first line say “Im epileptic, if found unconscious, please phone ambulance, and afterwards call this number” Or something like that.
It needs to be simple wording and not super long! I’m a nurse and know several EMS workers and they’ve said the same thing. Basically it should be straight to the point. “ICE” stands for “in case of emergency”, so basically you put “ICE: 123-456-7890”. First line should also always be your name. Second line should be diagnosis. Should also include if you have allergies or not.
I was against it for the longest time for the same reason, but I had a focal when I went to the bank and it cemented the decision. Thankfully my in law was taking me there so nothing happened. Do yourself a favor, friend, and go grab one.
I just got my first one in the mail a few days ago. I made sure to get a cool one. It honestly felt like I was putting a weight around my neck the first time I hooked it on. BUT, this is the sort of thing I'd really support for others. Truly. The way I see it, of course it's not someone's fault that they're sick. Of course they should take any steps they need to make sure they're safe and cared for. Of course we should do everything to support people who need help, friends and strangers alike. But it's so hard to apply that to ourselves, sometimes. Care for yourself. You deserve to be safe. You got this.
I’m thinking of getting a necklace instead. Not sure if people check for necklaces though.
I have a tattoo over my heart (hard to miss if placing EKG leads). Name, DOB, blood type, and says I have the RNS. The stimulator is MRI safe only in MRI mode.
When I was an EMT we used to joke about waking up after a night of drinking to a giant DNR tattoo on your chest
DNR: 'Drinking Night Regret' - makes sense LMAO
I may be getting the RNS soon. MRI mode has never been discussed by my doctors and surgeon. Do you remember if your doctors/surgeon advised you of what to do when getting MRIs? I get a ton while unconscious after bad seizures. Other than a tattoo, what could I do to ensure the MRIs are safe? And would they be able to put my RNS in MRI mode while I'm unconscious? Now I'm terrified of being put in an MRI while not in MRI mode. Would the magnet just...oh lord I won't go there. How do you put it in MRI mode? Sorry for so many questions. I've never heard of this before and you just made my anxiety skyrocket lol not your fault, though, I should know about this. I'm fascinated by the RNS.
I certainly didn't mean to make you anxious - my apologies. My care team advised me to inform the MRI staff to put the device in MRI mode first. The tattoo is there in case I'm unconscious. Apart from a tattoo, I might suggest an alert ID bracelet or necklace stating you have the RNS if you get one. You also get an implant ID card with the RNS system which I suggest carrying with your photo ID so first repsonders/ER staff will find it when identifying you if you're unconscious. If there's an ER you normally go to, you can have them put a note in your chart as well so they are aware when you are brought in. The device can be put into MRI mode whether or not you are unconscious. A radiology team or your epilepsy doctor can put the device into MRI mode. Your epilepsy doctor will need to reactivate it following the scan(s). [Neuropace.com](http://Neuropace.com) hosts a monthly webinar to help inform people. I recommend attending one to help address questions you have. They also have some really informative PDF documents about the system you can download for reference.
Thank you so much! No one has given me this info. I'll definitely be attending a webinar. I truly really appreciate your time and help.
You betcha! Feel free to DM if you'd like to hear more about my experience with the RNS system. \*I'm not a medical professional but I'm always happy to share my personal experience with epilepsy and the treatments I've had.
Yes, and it’s listed in this order…. 1: name 2: generalized epilepsy 3: emerg med: valtoco 4: ICE: (moms number) 5: NKA
Good idea putting your rescue med on it.
What is NKA?
No known allergies
I've been looking for the best order to put name/diagnosis, thank u 👍
I do not, because my medical history is to complex to fit on a medical alert bracelet. My husband is well versed. He's signed paperwork at my local hospital stating he can make medical decisions on my behalf of I am not able to (which unfortunately has happened). He is listed as my emergency contact in my phone and if I'm traveling it's almost never without him as I can't drive in the first place because of my epilepsy.
Road id makes bracelets with codes on them that are linked to an online profile. That way, you can have more info than just what fits on a bracelet. If your history is that complex, you should probably get a medical alert bracelet. I was in the same situation as you. Too much info to fit and I never left my partner/emergency contact anyway. Well, someone gave me a road id bracelet as a gift and I love it! Gives me some peace of mind and gave me some motivation to start going places on my own. I have more independence now because of that bracelet. Gives my partner a lot of peace of mind too.
I will look into it. Thank you. But unfortunately, beyond my epilepsy I can't go alot of places without my husband because I also have Spastic Quadriplegic Cerebral Palsy. While I'm not completely immobile, I do not have the greatest mobility and require quite a bit of assistance. We do not have aids or outside help. We conquer everything on our own, including raising our kids. We kind of just fly by the seat of our pants. Our kids never go without.
Ahh, sorry, I shouldn't have assumed we're in the same situation. I truly wish the best for your family!
Yes, I wear my Road iD bracelet every day. Mine is going strong after five years and looks like new. It’s comfortable and comes in a bunch of different colors and styles. Mine says Epilepsy and includes my name, city and state/my emergency contact’s name and phone number/my neurologist’s name, city and state. I wear it to reduce the possibility of a seizure being confused with a stroke/heart attack/drug overdose. [ROAD iD](https://www.roadid.com/pages/shop-road-id?utm_source=google&campaign_id=17132039482&ad_id=595978103995&utm_medium=cpc&utm_campaign=%7Bcampaign%7D&utm_content=143074107584&utm_term=&gclid=EAIaIQobChMI8uGV0oiChwMVQFn_AR0XoAUKEAAYASAAEgLfR_D_BwE&gad_source=1&gbraid=0AAAAAD6s2GGkGFSwi1paziPuF5V7N2VYu)
After losing a few bracelets I got a wrist tattoo that says epilepsy
I have a necklace that I absolutely love that I bought off [Etsy ](https://www.etsy.com/listing/1209209514/custom-engrave-plump-heart-medical-id) and she was super sweet too! I cut it to make it shorter so it showed more, I have a slight fear of having a seizure and it not being seen and someone freaking out. Plus I liked a shorter length and let me tell you THAT was a feat!! Super strong. And I have all the proper jewelry tools. Mine just says: My name Epilepsy No EMS ICE mama Her number But guys, now that I've read some of your comments & I've now FINALLY (after 10 years, YAY! got an actual diagnosis name not just "epilepsy") I'm thinking I need to change mine. 😭 Because now they've given me a rescue med, 2 diagnoses, but I also NEVER thought of putting NKA on there! 🤦 Maybe, "Hey! I'm a flopper. NO NARCAN! I'M NOT AN ADDICT! STOP!" Rescue med in pocket. Call my mama!!!!" (I also visit Wonderland often...) Sorry...I survive on a dark sense of humor...🤷
10 points for use of "flopper."
😏
Top says epileptic and the back says my name bday and ICE
Yes, because I need them to have some idea/age about me and ICE. Hard to pull all those memories to the front after gtc… an old coworker thought i needed cpr, the bracelet could have prevented what they did. the operation afterwards for trying to resuscitate someone in the middle of a seizure was miserable. now i’m scared without it honestly Name DoB ICE- SEIZURES - DNT or ER depending on situation. putting epilepsy can be too broad a diagnosis in an emergency situation, they just need to know there’s a history of seizures and who to call on your behalf. Hope this helps.
DNT?
DNT typically means do not trach
The front just has the medical cross thing. On the back it says: Name: Jxxx Sxxxxx Epilepsy Emergency contact: Parent Emergency contact phone#: xxx xxx xxxx
Since I was diagnosed at 16 year's old. 42 now
Yes , from Road Id .com
nah, i just hope i dont get narcanned if i'm in public lol.
First time I had my diagnosed* seizure(car accident) I told the cop I felt like I was on drugs and can remember the medic and cop arguing back and forth if I needed to be drug tested or not😂😂 I did not in fact get drug tested
I can’t seem to add a photo but: I do. I’ve had a few since they get worn out over time. Mine is usually small so I don’t have a ton of room, so it says epilepsy and on the back it says my name. Next time I’ll probably get one with a phone number on it. Edit: on my phone I have the emergency medical thing with all the info. So they can check that too for a ton of details.
I have a band I attach to my Apple Watch that has medical alert built into it. My little metal band has my name, meds, and emergency contact numbers listed
Yes. Well kind of. My medical alert bracelet says my name, and says "brain injury" which is the cause of my seizures/epilepsy, and says check cell phone for more info. Then on my phones lock screen, there's a banner that says "double tap for emergency medical info and contacts". So people can access that info without being able to access anything and everything else on my phone. And in the app, it has my name, date of birth, blood type, organ donor, code status, emergency contacts, medical conditions, medications, allergies, and any special notes that I want emergency responders to know. It has come in handy so many times and first responders absolutely love it. It's called something like "medical ID in case of emergency" and 100% free.
So I accustomed got my in on Amazon.I can give you a link if you're interested I also have my Is wife's mom On the inside in graven and on the top , it says epilepsy and says the The kind. That I have
I have a little badge I wear on my backpack
Medi bracelet engraved with the type of epilepsy, Emergency contact and current medication
I don't bother wearing them anymore EMS has never looked for one, I just end up calling someone to pick me up while on the way to the ambulance, or right after the seizure while they wait with me Once a paramedic told my dad I should get a medical alert bracelet even though I was wearing a necklace If you've been in the system long enough why bother it's all on some computer records anyway
I have a Myid one and it's lasted me a while I don't take mine off I need to get a new one the sport one I wear I've only taken off for surgery and my wrist felt naked it's been a really long time the only reason I would get a new one is this one is breaking they have many differnt kinds I wear the sport one so it doesnt rub
Yep just in case. Has my name, DOB, and what I have/allergies. Only time i take it off is for showering and MRI’s.
I have several fashionable bracelets and one CZ necklace. I don’t wear them anymore though. I’m fortunate to have been seizure free for an extended period of time. I wish I could remember where I got them though to recommend.
Yes, I got mine from laurenshope.com. It's rose gold and magnetic so fits to my wrist well. It just says "epilepsy" then my emergency contact name and number. The top has the emergency symbol on it, but in white so it doesn't stand out, but a paramedic or doctor would know to look for it or see it. I've had several from there over the years and this is by far my favorite. They're expensive but they last a very long time. I haven't had a grand mal seizure in 10 years but I never leave the house without wearing it, especially if I am driving. You just never know.
Mine is very simple it has my full name, my blood type, my two emergency contacts and my type of health insurance.
Yes. Only because of 2 emergencies where one would've come in handy. It says my first and last name, date of birth, that I have epilepsy, my medical allergies, that I would prefer they not ruin the tattoo on my left arm with an IV, my significant other's phone number and on the back the phone numbers of my grandfather and my mother if my significant other can't be reached.
Yes I have one and it makes me feel less anxious if I'm ever out alone. Mine simply says: First name Epilepsy ICE: xxxxxxxxxxx Lamotrigine It has only been helpful one time, but when you're seizing and can't communicate at least it's there to make people aware rather than them panic and do the wrong thing even if their intentions are good. I actually just bought a new one today from a website called Callie.com, they are a jewelry company but also do medical bracelets. I'm a woman and the daintier bracelet was perfect as opposed to a chunkier one I got from Etsy. Both great just wanting something smaller. Comes in gold, rose gold and silver and you can have 55 characters engraved on the back which is exactly the amount I have for reference. Hope this helped :)
Yep!
Necklace. Then smart watch and phone will display things too
I have dog tags because there was no way to fit Epilepsy taking Dilantin allergies are Latex, Xanax, Celexa, and Tegretol on a bracelet.
I used to have a waterproof rubber bracelet. I switched to a necklace (American MedID). I put the basics...name, type of epilepsy, a contact with phone number, do not call ambulance and to time the seizure.
Im wearing one rn Youmi (last name) Epilepsy Psychogenic seizure Mom's number Step dad's number
I used to but it snapped and I just haven’t ever gotten a new one😭 it used to say my name, my conditions (cerebral avm, epilepsy, and epipen user), and emergency contact and phone number. I want to get something with a QR code people can scan that brings you to a very specific run down of my conditions and what they are, emergency contact and info, meds needed, which hospital to call, what to do and what not to do so they can be informed to tell the responders when they arrive because I usually cannot speak for 15-20 minutes after a seizure.
I wore one for the first year or so. Idk I just can't be bothered. I lost it somewhere along the way of life and never replaced it.
We went with a silicon bracelet from Mediband.com.au and used 'Epilepsy' and the NHI number for identification. My daughter is non verbal during a seizure so if she's found by a stranger and they call an ambulance they can look up her details and call me from emergency contacts. They can see who she is, her address and medical history. Medic alert was too expensive for my liking.
I have a med bracelet and then all my info on my watch. My bracelet has my name, emergency contact, condition (epilepsy), and because they’re small the bracelet has the most severe allergies listed
Absolutely. Mine is a 24 hour wear from Lauren's Hope. The links all say "Love" (24/7 jewelry should be something that you really like) the Medic Alert tag has my name, Epilepsy, my medical allergy and my ICE. My ICE is also in my phone. for any one who doesn't know, ICE is In Case or Emergency. Your emergency contact. Some EMTs look on your phone, some recognize the bracelet. It dumbfoundeds me when they don't. I also have a medical alert necklace. For a while I had a job typing all day and the bracelet messed up my keyboard. Now where I work the necklace could get me hurt so back to the bracelet which I actually prefer.
Mine says in this order downwards VAGEL NERVE STIMULATOR CAUTION EPILEPSY MY NAME
I have a custom made med card from etsy in my wallet with all pertinent info. #s, meds, conditions
I've got a pendant (just got a really pretty one - the [Donovan design from Lauren's Hope](https://www.laurenshope.com/antique-donovan-medical-id-dog-tag-necklace), cos I love some good accessories). Name / Epilepsy / Turn on side / Put nothing in mouth /Med ID on bag strap / ICE number And I keep one of those luggage tag holders on my bag with my current medical info card. Probably gonna get a nice bracelet too. There's some really cool stuff out there with the info pretty discreet, but I feel like if you're gonna wear one, it should have the visible red symbol on it. EMTs might know what to look for, but if you hit the deck around random folks, they are gonna be panicking and I want them to see my tag right away.
Nope. Probs should tho lol
"Epilepsy" it has unicorns on it. worth it
No I don't, but I have a tattoo on my hand
I did a cool badge that says what to do in case of seizure and then some infos for doctors and stuff, like what I'm on, etc
I had one years ago but it broke and I never replaced it. But after my last tonic clonic my partner got me a new one. It has my name, epilepsy and my ICE (strangest loving gesture ever was that she out my mums number not hers so that even if we broke up I'd still be safe with my bracelet)
Yep, name, epilepsy and husbands number. If you have an iPhone you can also set up a medical id that comes up if you press on the volume up and off button at the same time. I have that with all my extended details on it, just in case.
My name, epilepsy, no drug allergies, and my SO’s phone number. The least important thing is my name. With the other stuff someone who finds me will know what’s wrong with me, if they can give me meds and where to get more info.
Mine lists my epilepsy, anxiety and allergy to bee stings. Also has the emergency number for the company I got the bracelet from, probably so emergency services can grab any details they need.
No
(How) do you indicate type of seizure beyond the 3 or 4 commonly known ones?
Yep, mine is through Medic Alert so it has: Their 24/7 number at the top Followed by my diagnosis (Temporal Lobe Epilepsy), as well as specifies Tonic Clonic and Absent Seizures (to be clear), the lists my severe allergies (Latex and a couple of antibiotics). At the bottom is then my member number so when paramedics or first responders contact Medic Alert they are able to get more information (next of kin etc). I have a bracelet for everyday wear and another one that I wear for playing sport.
Yes, it has my name, condition (seizures), and my partner’s name and phone number.
I used to, it came in handy because I had an absence seizure and decided to walk into a main road (don't remember it). Thankfully there was a nurse on the road and she saw it on my wrist, apparently at first she thought I was drunk 🤣
My husband has been wanting me to get one. Especially since I’ve been stable for 6 months and got my license back and I’m able to go out alone more often. I’m indifferent on if I want to
Yup. But I think they're pretty useless these days. I have the same emergency info available to see via cell phone, which people or paramedics will gravitate towards...instead of searching for a tag that may not exist = waste of precious time. I broke my back during a previous seizure, moving me around to look for a med ID tag is not smart. Mine's also not scannable, not sure if any are. (They should be) Anyways, mine just says EPILEPSY MTS and has the code. The code then tells them type of epilepsy and meds, etc. Seems like a lengthy process. I had a black one...MedicAlert Brand..don't get those, when the black plating comes off it's hard to read. That is, if they can find it. They need to play catch-up with technology. Especially when you can access this stuff on peoples smart watches and phones. ...Much easier than hunting around for a medical tag.
Mine is a badge that slides onto my watch band so I don’t have to remember to put on another thing
I did wear one, then a job noticed it at an interview and asked about it. I dont wear one anymore. Now I have the emergency option/medical ID set up on my phone. In an emergency someone can access the information even if my phone is locked. It says im epileptic and list my medications, doses, allergies and emergency contact people.
No. I used to have one, but when I went for first aid training I asked if the ambulance crew would look for one, and follow it. They said no because their priority was to stabilise the patient and then they would be checked out at the a&e for the reason they seized (as not all seizures are caused by epilepsy) and if further treatment was required. After that I stopped wearing it, felt like a waste of time.
I have two, but I lost both
Had* lol
I opted for a medic alert product that slides on my apple watch band since I'm less likely to forget to wear the watch. It's two pieces, so the top has my partner's name and number, and the bottom says "no ems unless seizure lasts over 1 min or if injured" I also got one of those bright red metal medical alert cards for my wallet. The first side has my name and "epilepsy" and then "!! IMPORTANT INSTRUCTIONS ON BACK !!", as well as my emergency contacts' info. On the back it says "turn on side on floor / cushion head / no items in mouth // no ems unless / seizure lasts over 1 min or if injured / otherwise please call family only" I also used to use a medic alert necklace that just had the surnames and phone numbers for my emergency contact. I sometimes forget to wear the necklace, but I almost always have my watch and wallet
Yea I have an ICE bracelet not flashy but have info on it
Had one for years. My wife insisted
Nope but got an Apple Watch with a medical id and emergency alert set up
"ROAD iD" bracelet All black with white lettering, so who knows if an EMS person will actually find it. "Name, birth year Wife name, wife phone, 'WIFE' blood type, EPILEPSY ALLERGY xxx IS MY BIKE OK?" I had to add that as some humor. If I get found on the side of the road it'll likely be from doing something stupid. My seizures are mostly under control.
Yes. I also have this app on my phone and iWatch. SeizAlarm. Reduces anxiety for me and my wife.
I have these printed keyrings tags (on my keys, work id and meds bag), and a full ID card. Tag shows name, NHS number, medical conditions x3 and my emergency contact Full id card shows full address, name, emergency contacts, daily and emergency meds, full medical conditions list, full allergy list
I was told to get one but I am still in denial and thinking I can heal on my own. I live alone so I guess it would help me.
I have a bar on my Apple watch that says “check phone” because it’s easiest with all my shit
I wear a silver bracelet that says epilepsy. That is all.
I did until recently. It broke 😭😭😭
Yes, two even but I don’t even wear them. I’ve only worn them when I was first diagnosed or when I travel.
I got a necklace off of Etsy. I didn’t want a chunky bracelet, it’s just something small that’s on my neck. The front says epilepsy and the back says my fiancé’s name which is my ICE contact. I like it a lot, something nice that I can wear and just blends in like another piece of silver jewelry.
I got a cute rose gold bracelet made on Etsy. All it says is epilepsy, factor 12 deficiency, blood thinner, ICE (and my husband's number) Knowing myself I'll end up in the hospital and I figured they should have some idea of what the hell is wrong with me.