![MySecretWorldOfSeizures](/img/default-banner.jpg)
- 38
- 67 436
MySecretWorldOfSeizures
Registrace 2. 03. 2020
Hi guys !
My name is Maisie and I live with epilepsy I vlog my life showing the good and the bad days living with this condition in hope it will raise awareness and understanding to people who don’t live with it and for people that do hopefully a feeling that you not on you own! Hope you like my channel and subscribe!
My name is Maisie and I live with epilepsy I vlog my life showing the good and the bad days living with this condition in hope it will raise awareness and understanding to people who don’t live with it and for people that do hopefully a feeling that you not on you own! Hope you like my channel and subscribe!
I GOT MY NEW WHEELCHAIR- QUICKIE NITRUM 👩🏼🦽
Hi Hi everyone!
Finally my new wheelchair has come...and I LOVE IT! as always if you have any questions stick them in the comments and dont forget to LIKE and SUBSCRIBE to support my small channel!
My Instagram's:
mysecretworldofseizures
lifeafloatmynarrowboat
Finally my new wheelchair has come...and I LOVE IT! as always if you have any questions stick them in the comments and dont forget to LIKE and SUBSCRIBE to support my small channel!
My Instagram's:
mysecretworldofseizures
lifeafloatmynarrowboat
zhlédnutí: 9 315
Video
BUILDING MY NEW WHEELCHAIR!
zhlédnutí 605Před 3 lety
Hi hi everyone today we got to build my new wheelchair with the lovely Duncan. We also got my room ready for parallel bars to go in to get loads of physio practice in! Exciting things! Don't forget to like and subscribe for more videos! Follow me on Instagram! Instagram: mysecretworldofseizures
OUT OF HOSPITAL UPDATE!
zhlédnutí 184Před 3 lety
Hi everybody finally a update video! More videos to come soon so see you soon!! Instagram: mysecretworldofseizures
MY HOSPITAL WARD TOUR!
zhlédnutí 415Před 3 lety
Hey everyone here’s a little ward tour of where I have been for the last 3/4 months! Hope everyone’s keeping well I’ll be back to normal uploading once I’m back home! For now follow my Instagram for more frequent update: mysecretworldofseizures
THINGS THAT HELP YOU COPE WHILE IN HOSPITAL!
zhlédnutí 116Před 3 lety
Hi guys! Super short video today just on the things Iv found help in hospital and hopefully would help you if you ever found yourself in hospital for a long while! Be back soon Follow my Instagram for more frequent updates: mysecretworldofseizures
HOSPITAL UPDATE!! ......STILL HERE!
zhlédnutí 174Před 3 lety
Hey guys! Here’s an update of what’s been going off with some pictures at the end to show don’t forget to watch out for my hospital ward tour video coming soon!!
UPDATE! AND HOSPITAL ROOM TOUR!
zhlédnutí 326Před 3 lety
#roadtorecovery #livingwithseizures Hi guys, Hope everyone is good! My uploads have slowed down just due to the fact that I am spending all my time on my recovery! But here’s a little update!
FINALLY IN THE NEURO REHABILITATION UNIT!!!!
zhlédnutí 339Před 3 lety
#roadtorecovery #livingwithseizures Hi guys here’s a little update to what’s going on lately hoping to be able to update you on my recovery and physio journey so don’t forget to subscribe and click the bell option to get notifications when Iv uploaded new videos!
STILL IN HOSPITAL?!!!
zhlédnutí 251Před 3 lety
#livingwithseizures #roadtorecovery Hi hi everyone, So another day of waiting!!! Killing me but hopefully I’m successful tomorrow! Stay safe! M x
HOSPITAL UPDATE!
zhlédnutí 248Před 3 lety
#livingwithseizures #roadtorecovery Hey guys! So here’s a update of what’s going on in hospital! I’m hoping to be able to update you all as much as possible! Stay safe, M x
MY SEIZURES PUT ME IN A COMA!
zhlédnutí 1,5KPřed 3 lety
#livingwithseizures #roadtorecovery Hi hi everyone, so a lot has happened this week hopefully I will be able to keep you all updated with how my recovery goes! Stay safe!
I GOT A SEIZURE WATCH!
zhlédnutí 9KPřed 4 lety
#livingwithseizures #seizurewatch Hi guys! So I finally got a seizure watch hope this helps others out ! If you have any questions or I didn’t cover anything let me know in the comments! And don’t forget to LIKE, SUBSCRIBE and SHARE! Follow my Instagram for more updates: mysecretworldofseizures
SEIZURE UPDATE!
zhlédnutí 914Před 4 lety
#livingwithseizures #seizureupdate Hey guys! So after not uploading in a while I thought I would give a little update even if it didn’t go to plan! Don’t forget to LIKE and SUBSCRIBE see you in my next video! Follow my insta for more frequent updates: mysecretworldofseizures
CAMPING WHILST LIVING WITH SEIZURES PART TWO
zhlédnutí 190Před 4 lety
#funfriday Hi guys! Here’s part two of my camping trip really hope this helps encourage other seizure warriors to keep doing what you love! Follow my Instagram for daily stories : mysecretworldofseizures
CAMPING WHILST LIVING WITH SEIZURES!
zhlédnutí 170Před 4 lety
Hi guys! Not my usual uploading day however I thought I best upload whilst I’m feeling good! Here’s abit of what I got up to this weekend! Hope you enjoy and stay tuned to see what I get up to... Follow my Instagram to see daily stories: mysecretworldofseizures
WHY I HAVENT BEEN UPLOADING!! | SIDE EFFECTS OF MY SEIZURE MEDICATION
zhlédnutí 222Před 4 lety
WHY I HAVENT BEEN UPLOADING!! | SIDE EFFECTS OF MY SEIZURE MEDICATION
SEIZURE CAUGHT ON CAMERA *LAST NIGHTS TONIC CLONIC SEIZURE*
zhlédnutí 15KPřed 4 lety
SEIZURE CAUGHT ON CAMERA *LAST NIGHTS TONIC CLONIC SEIZURE*
MEDICATION UPDATE AND 8 DAYS SEIZURE FREE!
zhlédnutí 227Před 4 lety
MEDICATION UPDATE AND 8 DAYS SEIZURE FREE!
Welcom 2 it .trest me it hurts lol.
Focal aware onset? For longest time i was diagnosed as non epileptic to point i almost died from a gtcs. First one i ever had ws when i was only 5 months old personally, been a battle with the doctors for many years unfortunately until i finally and spent a month in a epilepsy centre eeg monitoring sleep deprived nights to trigger one and boom bad for my body but they finally saw it on camera and eeg also.. I'm on antiepileptic meds now but yeah...epilepsy can be the worst thing if you're having a good productive day; i digress. But mine usually start as focal aware onset or simple partial ones and stop there or progress to a grand mal 😢 thanks for sharing 🩷 🎗️
My Senior Year in High School I started having Seizures. It's something I was born with and ashamed of it.
Do you get short term memory loss sometimes with your seizuses?
Brave for sharing, thanks it will help others , hope your ok.
Hi, my name is Jodie. I really liked your video. I wanted to know what is the watch called, ie Brand, that sort of thing. I know what tonic/clonic seizures are like i've had some really bad ones since October. One lasting 45 minutes and another lasting 50 minutes. so I know how bad they can be. Thank you for the info. They have me on Kappra 750mg in the morning and 500mg in the evening and 500mg Lyrica twice a day which keep them in check. Stay well, love from Jodie😀
how have you be feeling after 3 years of using that app?
Hi, i did't understand what seizure app did you choose because I know that there are a lot out there and i dont know witch one to coose
sweet!
Fake none epileptic
I’m epilepsy and I usually sleep for 24-48 hrs straight without eating or using the bathroom just straight sleep
completely random question, do you have any idea where i could buy JUST the flip up handles for a quickie nitrum? i’m about to get one but it has no handles which i’m a bit concerned about
i don't think you can buy them separately. I think you can order them with wheelchair.
Hi!! How Do I get one and is it free?
Fine, wheelchair is our freedom… I’m use him hole day, to control my pain and yeah this year my spine is incomplete injured (can’t walk anymore and can stay for 30/40 seconds) I walked a year with a stick and lots of pain, I wish I was smart as you and try the wheelchair earlier…
I'm turning 18 soon and I have had epilepsy since I was nine years old I have Gramma seizure the plan was for me to live with my mom and dad but I just honestly don't want to do that i want my freedom and would love fo get my own place but my family worry's what if I had a seizure I topically have one seizure ever 3 to 4 months there completely random im just looking to see witch bracelet would be the best and if this would possibly allow me to be able to get my own place
I have epilepsy, seizures mostly during sleep. But I got this watch to monitor it and keep track. Good luck with Your health and thanks for the video ! :--)
Can the app send alarms to the emergency contacts without the person pressing any buttons? My dad also has seizures during his sleep so he isn’t able to press anything when he is having a seizure.
This is misleading. This isn't a seizure watch or a certified medical device. Its just an Apple Watch with IOS app. I have tonic clonic seizures and there is no way I would trust this. I'm going for the Impatica Embrace2 which is a seizure detection device that uses advanced AI and was developed at MIT. Can also provide and log advances diagnostics + send alerts to multitple contacts. If you are at risk of SUDEP get a certified medical device.
How's the battery life on your watch been? With SeizAlarm I've found that the watch lasts about 10 hours at most & needs to be charged, with everything else unrelated to health turned off.
I hope that you are well these days
You never mention Which Apple watch
Iv'e been a wheelchair user off and on for 10+ years, I'm on my 2nd year on a permanent basis, I have the Quickie QRi series in Candy Purple, basically all need to learn is how to pop a wheelie for curves and bumps, the balancing thing is more of a showy thing, the other is maneuvering, after awhile it becomes second nature, have fun
Would the the Apple Watch detect my focal seizures because that’s what my doctor diagnosed me with and like that I would like for the watch to record what time and day I had them because I completely forget t after I have my seizures and like that I’m notify One of my family members while they are at work because I’m always alone at home with my dogs that I’m tell them I’m okay that it was just a small few seconds seizure but I’m ok that I’m going to rest on till they get home
What color is this?
Im getting the same chair and am looking at colors! Just wanted to know what specific color this was!
can i ask what part of the brain your seizures are located in?
I’ve been thinking about getting an Apple Watch i don’t know bout help but maybe to just help me and my neurologist if I have another one. Cause my seizures are anxiety and stress related so before I have a seizure I’ll have like and anxiety attack and then have a seizure it’s honestly really annoying in my opinion but scary too. I’ve been lucky for both of my seizures but I still gotta make sure I’ll be alright you know. Sometimes it’s scary. But I really appreciate you putting out this review on here and hope that you’ve been having less seizures and staying safe. 💜
Hi Maisie How are you getting on with the wheelchair. I’ll love to know as I am getting a Quicky argon 2 wheelchair very soon. and I have just watched your video and I believe the one you have is a bit lighter than the Quicky Argon 2
My nitrum tipped too much changed to aragon 2
I'm just waiting for mine to arrive too, it was the chair I was recommended after paralysis episodes and seizures thanks to fnd :O
wow thanks for sharingg
Loved the video im looking at the Quickie Argon 2 from Easy living mobility also
Seizures Are Painful
Hello I want can deaf people wear apple watch.. also I have seizure,
I was once walking in my living room and my vision just went blank, I woke up like 15 seconds later (I think) on the floor. My body was still shaking violently but it stopped a second later. My body felt very weak afterwards and my head hurt. Did I have a seizure or does that sound like something else?
Hi I was acting just like your mom when I first sat in my new Quickie Nitrum everyday wheelchair ♿️ it’s fun every time I go places. It’s effortless for me to push. #newwheelchair ##wheelchair #wheeltipsjoe
Does seizure medication work?
depends on the person. mine didn't. even taking 4 meds, I still had absence seizures. my neurologist at the time didn't do anything about it. he would just take notes and subscripted more refills for my meds. But when I went to a new neurologist and the one I still have, she jump right into gear and basically said, "we're gonna get rid of shit." she had me do a cat-scan, an MRI, an EEG, and an SEEG. Not even one year later after going to her, I had brain surgery and haven't had a seizure since.
What happened to the lights on the front casters
Hy ,please can u tell me your seat height front and rear ? thanks
Nice color! How is it holding up? Thinking about getting one.
What watch is that?
Hi it’s an Apple Watch series 3
@@mysecretworldofseizures6362 oh wow!! Didn't know you can set it up to be a seizure watch? X
Where can I purchase the watch ? My 5 year old has epilepsy & she mostly gets them during her sleep & I’m looking for something to alert me while I’m a sleep
Hi! You can buy an Apple Watch from pretty much anywhere then just download the seize alarm app
@@mysecretworldofseizures6362 thank you so much !!!! Hoping all is well with you ❤️
@@mariacuevas7525 Did you end up getting an IPhone watch for your 5 year old? My 9 year old just had his first seizure while sleeping.
@@LoveBugXOXO yes I did !! She hasn’t gotten one so far since I got it for her 🙏🏽 but she wears it only at night , & I also got a baby monitor as well
@@mariacuevas7525 Which version watch did you purchase? I’m thinking I should get a newer one so my 9 year old can run around without having to have the cell phone on him. Do you like the baby monitor? Which one did you get? Thank you so much!
I do not know how you manage to stay so positive. I just started having seizures at 40 and it's the scariest experience I've ever had. I had one today that was particularly bad and I'm scared to try and fall asleep, as that is when most of mine occur. So here I am, trying to find internet friends who can make me feel just the slightest bit less alone. It's helpful to see that you're doing well in spite of a coma. Congratulations on your new wheelchair and big hugs to you from the U.S..
Thank you so much for this comment, it’s not always easy to stay positive but I find ways to cope though it all, I hope you can find comfort in my channel x
Hi Maisie your new wheelchair looks great your mum looked like she was having loads of fun on it 😄
Does this track Absent seizures, Grandmal Seizures and Tonic Clonic Seizures? What if your heart rate goes up an your having an anxiety attack not a seizure. 🤦🏽♀️ I’m a mom of 4 my son is Type1 diabetic it’s the biggest emotional roller coaster for me. 💜💜💜💜
Very good question sad that no one could it answer
it cannot track absent seizures, only ones that are movement related
Hi, Thank you so much for sharing all your videos and content! It’s so inspiring and I hope you are doing well. I have had epilepsy since 2009 and for me it’s mainly in my sleep. I was looking into getting the Apple Watch for the detection functionality as well as for the SeizAlarm app so it can alarm and alerts my family. I came across your video and it seems like you have had the watch and the app for a while. Now that it’s been so long, how do you find it? Would you still recommend it? Thank you and I am looking forward to your response. Ben 😊
Hi, thank you for watching my video! It works well but you have to adjust the monitors correctly so it doesn’t just pick any movement up and class it as a seizure other then that it’s great records everything and can contact whoever you need, hope this helps 😊
Hi Maisie it's been great to see your CZcams video and finding out how you are getting on your bed is great with what it can do to help you my beautiful friend x x x 😘
Been using SeizAlarm on my Apple Watch for years now. It’s gotten me help during two grand mal and has even informed my mom during partials that I didn’t realize I was having. Fall Detection is a MUST HAVE, so buy a Series 5 or later and ensure that the option is enabled. Edit: Have PTE due to a TBI in 2009, permanent damage to my front and right temporal lobe. Good luck with your recovery, independence is possible.
I’ve been thinking of getting a Apple Watch for my seizures , is that best or just a
Seizure watch , info is appreciated
Hi Hon, hope ur ok? Sendin love & hugz x Ave not bin 2 gud wit ma seizures ther more frequent & had a few hozy vizits. Am tryna manage but itz difficult.
Cool! How's your physical therapy going?
Hey its going well thank you really hard work but im getting there!
Hi what app r u using
Seize alarm
Have you had any gum or teeth problems after you started Tegretol? Just letting you know that the pills can cause.
I havent no
@@mysecretworldofseizures6362 My brother is taking. I wish they could find something else for him but he’s been on this pill for to long to play around with his meds.