Hello and welcome to my channel! I have epilepsy and have a VNS as well. I’m really awkward and sometimes make long videos on accident, so make sure to subscribe to learn more about me and the wonders of epilepsy!
Thanks for posting this video. Very hard to find info about carpal boss. I’m trying to treat it naturally right now with castor oil pack everyday, so far has helped with reduced pain and increased movement in my wrist
@@sarab2324 still experimenting but really do hope it’ll work. Learned about it from Barbara O’Neil. Hope you are recovering well from surgery, all the best ❤️ ru-vid.com/video/%D0%B2%D0%B8%D0%B4%D0%B5%D0%BE-ibBmRlPr2Uc.htmlsi=tWi6T7wsh477hOBY
Hi thanks for sharing the video, i had a carpal boss 3 years ago I had surgery it was day surgery and just let know I am pleased I had it done, it is a lot better now, hope your will go ok and is better after
I’m so glad it went well for you and you are feeling better now! Mine seems to be healing well and I haven’t had any of that pain I used to have. I’m excited to get my left hand done soon so both will be better.
The carpal boss, when it gets extreme like mine, does reduce hand mobility. Not the fingers, but the rest of it. Many people have carpal bosses but only get surgery like me if it’s extreme. The surgery has helped a lot it seems and I no longer have felt that same pain. I’m glad I’m getting my left hand done soon so that both hands will be better!
I am! Even though I’m still healing, I haven’t had that specific pain back which was what was the goal. So next up will be the left hand when I’m up to it.
I also have a VNS (Vagus Nerve Stimulator/Stimulation), but I got my first one in 2006 and it was supposed to last for five years but it almost lasted for nine, then I got my second one in 2015 and it was supposed to last for twenty years but only lasted for six, almost six, or a little over six years, so I got my third one that I still have right now in 2021 and it's supposed to last for twenty years; I also got my LPN (License Practical Nurse) working with me when I finally got in fifth grade because of all the stuff that started going on when I started back to school sometime later on after I had my first seizure in 2004, but my parents had the slide on kind of magnet with them, and after I got my LPN with me when I was in fifth grade she had on too, but I remember how when I got my first two magnets the one that goes around your wrist had a Velcro part to put on it for me to wear it on my wrist, but the Velcro started getting to where it was starting not to attach for me to wear it anymore, so my parents ordered some more magnets and after we got them and opened the box of them we saw that instead of it being a Velcro part to put on it for me to wear it it was like the one you have, where it was like a watch part to put on it like you have, but I remember I stopped wearing it and just holding on to it in my pocket or something like that while I was awake and by my bed when I would go to bed, but after I moved out of my parents house I started to just hold on to the slide on one while I've been awake and sleeping and keeping the one that goes around your wrist somewhere where I can remember where it's at just in case I lose the one that's the slide on one; I also got the surgery done on the right side of the top where you have yours instead of the part of the right of your body where you got yours put in, and I'm not sure if you got any shots around where you've got either one of your VNS put in before you got the surgery done so you won't feel the pain of the surgery getting done but I've got shots around the place of the part where I've got my surgery done to get my two old VNS I got replaced with the one I have now so that I wouldn't feel the pain or anything while getting the surgery done.
I was told that they could only last up to 10 years depending on the settings. My first one lasted longer than I think my second one will, because it was gradually turned up. The one I have now has been on the higher setting the whole time. I actually was put under general anesthesia for both surgeries, so I was completely out. I’m grateful for that because I don’t think I could handle being awake!
Hi, Thank you so much for sharing your video. I had a recent flair up on my hand where I have a carpol boss, and similar to you I was having a lot of problems. I took peanuts and almond flour out of my diet and it seems to have gone back down. The carpol boss is still there. But I don't have the inflammation that was causing the problems. Just thought I would share that with you. Thank you again.
Yes I have Epilepsy! Most of the people you have referred to I call "Stupid People Tricks." I have lost positions at work because of my Epilepsy, lost my ability to drive for 18 months, and lost so called friends. I have had people stick sticks into my mouth to keep me from swallowing my tongue, wrap me up in a blanket which dislocated my shoulder and caused permanent harm. Still comes back to "Stupid People Tricks." I blamed myself for a long time, until I came to the realization "I am who I am!" Don't lose hope, most people are good. I had a tonic clonic in a walmart. I was so embarrassed that it took me two weeks to come back. When I did the Police came by and told me that they reviewed the video, tracked down all the people that had videoed me, and made them erase their video. It brought tears. To the Hitler youth that wanted genocide to all epileptic people I present this article from wikipedia: en.wikipedia.org/wiki/List_of_people_with_epilepsy. My newest trigger are the new police lights with the brighter Blue and Red flashing. BTW it took me almost 30 minutes to write this because of my hand shakes.
Hi about 5 years ago i emailed you about my girlfriend getting ready to get a VNS you gave us first hand input and we appreciate that so much. She got it installed and it did and did not help it helped us rescue wise during a episode but as for preventing it was non noticeable. Well she got approved for a RNS in her head while keeping the vns the difference was insane she went from having grand mal about once every 4 days to 2 years without grand mals and in trying to wean her off a med had one. She still has seizures they are very small but between the RNS and VNS they keep them to a minimum. That being said the RNS monitors her brain and we send in like an EEG daily to the DR she has seizures in two parts of her brain her left and right temporal lobes so in a sense inoperable but with monitoring we have seen that they start on the right and migrate to the left. At that point the DR's started the process of getting her approved to have a ANTERIOR TEMPORAL LOBECTOMY to her right temporal lobe she is getting the operation on may 3rd in 6 days. So we wanted to thank you for replying to that email and getting us started down this road you have helped change her life and we have a positive outlook for the surgery.
Hello again! I’m so happy I could help you both out! Even if the VNS worked as a rescue, that’s still good. I also am glad that the RNS is working so well for her! It’s amazing when you find something that actually helps! It gives hope! I hope that surgery coming up is very helpful to your girlfriend and that things improve even more! That’s what we all want, right? I’m grateful I’ve been of help! Always let me know if you have other questions! And feel free to update me on the surgery if you want to!
@@sarab2324 Yes thank you for your kind words we just got home she had the surgery at 7am friday morning and was actually discharged the next day well today at 6 pm as we just got home, so far so good we will monitor and its a wait and see type thing a lot of that with this stuff. Now it's time for some home bed good sleep lol.
I was cleaning up my subscriptions on youtube the other day and noticed you hadn't posted in a while. I was hoping you were still ok. Glad to see you put out another update. One thing with the VNS is that you don't know what it has actually done to help, since you have it currently. Your seizures could have been worse without it, but you wouldn't really have anyway to know that. I know it has helped my granddaughter, even though right now it doesn't seem to make any difference (her other seizure meds are being adjusted and she has had more grand mals). Her VNS is maxed out. And she doesn't seem to notice it, luckily.
I’m definitely going to be posting more now, hopefully weekly. Yeah, i am for sure going to try to get it turned down just a bit so I can see if it’s actually helping. If not then I may just get it removed.
Hi Sarah, I cannot belief that you are not insured! In the Netherlands everybody is covered no matter you work or not. My son is getting his vns soon and could you please update about your vns and if it helped you. God bless.
Hi again, I was wondering if I could send you an email instead? I haven’t been great, and I’m unable to make videos right now, but I’d love to chat about the VNS. If you’d like to, feel free to email me at sarab2324yt@gmail.com
I was denied disability after having so many seizures my drivers license got taken away... So I can't even drive if I wanted a job. Then I see people who don't even have a medical problem on disability
I am so sorry! I know exactly how it is. I have never even driven before! I also know a lot of people who got on disability in two months and they are just anxious or depressed. If that’s all it takes to be on it then I would have been on it for years now. It makes me so angry sometimes.
Hang in there. There is most likely a backlog on the applications due to lack of available workers. There should be social workers that can help with the forms. Just be persistant.
I’m curious what setting your VNS is set to. I’ve had mine about 6 years and just starting to go through the steps to get it replaced, but my voice hasn’t sounded hoarse noticeably for a few years.
Just got the exact same model put in, every time the device goes off, I get a funny weird feeling where the device is and along the nerve on the neck. When it goes off breathing is harder for those few seconds and voice changes. I have a Fitbit, so I wear the magnet using the same band. Fitbit top, magnet bottom
Yes, it does make breathing hard. Your body will get more used to it in time! Just so you know, the magnet is very strong and may fry your Fitbit if it’s close to it! I’ve fried electronics that way. It shut off my laptop many times.
I remember when I got my first VNS whenever I had to swipe my magnet I would also get a shock kind of feeling in the side of my neck and/or in my throat also to where it would make me start choking, but I've got so used to it now to where I don't feel anything in the side of my neck nor in my throat other than it just kicking on to try to not let me have any seizures, feel like I'm going to have one, feel like I almost had one, nor feel like I'm going to faint; sometimes they've helped me with those problems, sometimes they almost have, and sometimes I they haven't, I've also had two or three different models out of all three of the VNS I've had, because the last time I got one put in it was the newest model they put in me and even though it was the smallest one I got put in me in 2021 it's supposed to helped even more than any of the other ones there were, but I can't remember what the other two model(s) were that were the first two I had.
It’ll be very much like the first except easier recovery! And not as sore because they only take out the battery! Of course she’ll still be sore because it’s surgery but it’ll be pretty smooth.
@@sarab2324 mmm there on about the VNS is up graded so looking at cutting her neck as the leads won't fit... but I appreciate the reply thk you so much
I have catamenial epilepsy too. This year has been different and challenging-- even though some of my seizures have really gotten better! In the summer I started having trouble walking and now I still have some paralysis and tons of trouble with mobility every day. Anyway. I'll be hoping you can have a great appointment in February. I really hope that the VNS sorts itself out for you. We got this! I love your channel and I hope you make more videos!
I appreciate you watching! I am hoping to help at least a bit! What kind of seizures are you having? Grand mal? I would be terrified if I was having trouble walking. When I have seizures my left hand does stop working which is frustrating.
@@sarab2324 I've been having grand mal, about once or twice a month during /after ovulation. I get a lot of complex partials/ auras especially in the morning too. I resonate with that feeling of your body not working or not responding like you mention about your hand. I have had to adapt in some unusual ways to getting around my place without the usual use of my legs or most of my arms lol, I'll be rolling, dragging myself. On the bright side the burden of this has taught me to slow down a bit and I have definitely become a bit more flexible and strong than I'd have been without! You also strike me as a creative and strong person-- it's a blessing to be able to follow a channel like yours and to know I'm not entirely alone.
I've had seizures for 30 years. I recommend eating hearty meals especially high fat meats like ground beef and bacon. Bacon especially makes me feel good. Avoid foods with preservatives BHT and BHA and avoid red and blue foods, tomatoes bother me especially. Also watch out for chicken and eggs. Look up this in Dr. Hulda Clark's book cure for all diseases. Every now and then I do a tablespoon of parasite cleanse Pure Planet Organic Parasite Cleanse. I take it about 30 minutes before my medicine. Watch out because it usually triggers a tonic clonic, (Stay Home in bed)for me within a day or two, but I feel pretty good afterwards. I also do not go outside in the heat for very long and lift weights to make me feel better. Don't do running.
Hey Sara! Was actually thinking about you the other day. Sorry those seizures and migraines are getting in the way. If you ever want to talk about anything message me on Instagram 💜
I have catamenial epilepsy and have been having tons of seizures too. I hate how uncomfortable and painful they can be. Most painful things I've ever experienced. Music helps me too. I like Chopin
Hi! They really are the worst things I’ve ever experienced, as well. And it’s been going on for over 13 years now. Maybe I’ll listen to some Chopin myself! Very relaxing.
I'm having to take Aptiom which costs about 4k per month alone. I just had a VNS installed on the 5th of this month. Without Mainecare I would be lost. I am 36, my seizures started in 2012.
Congrats on the VNS! I’m so glad you have a way to pay for it all! I am currently uninsured and it’s been really stressful trying to get everything together to find a new insurance or Medicaid. Especially trying to do it before I run out of meds.
@@sarab2324 Oh geeze, trying to find good insurance before meds run out... In March mine stopped covering for a couple months and the immediate stop and swap to a diff med caused a nasty week of seizures. So nice that people look out for us not getting too stressed out.. Well.. It might not be the nicest boat we're in together but you're not alone :)
Love the new hair! Fingers crossed on your insurance- hope you win your appeal! I can totally understand why things have been stressful. Sending hugs and good vibes. Let us know how everything turns out! 💜 💜 Joanna
sarah i just got the vns last week 04/20/21 and due to have it turned on in couple of weeks i also have the magnets but no idea how to attach the watch to the band or if im even doing it right have you any idea how to attach it they didnt give me a diagram
Sara, thank you for sharing! Are you on medications as well? I am considering VNS surgery for my son, so I would love to hear back from people who are already have experience with VNS. Thanks in advance!
I am on medications as well. Some people are able to get completely off their medications after getting the VNS and others can go off some of them. For me, I got the first one in 2014 and I got it replaced in November. I believe I did add one medication throughout that time. It’s completely different for everyone though. It depends on how your body reacts to it.
Sara: Thanks for the update! So glad you are healing well. My daughter is about one year behind you on replacement surgery. Question: Is your incision on top of your old one or next to it? My daughter is concerned there will be many scars...Your videos are so helpful - thank you! 💜💟💜
The incision Ike right on top of the old one. The device is bigger so the incision is slightly longer, but it’s barely a difference. I was wondering the same thing too!
Hi Sarah I recently got diagnosed with epilepsy and I’m looking into going back to school I ran across your video and I was wondering how did you balance out memorizing your schoolwork with your epilepsy what’s the study habits or tricks you can Advise me with
For me I was able to stay in school for about a year. I did talk to the people there who worked in the disabilities office and they were very helpful in giving me letters to give to my teachers. Unfortunately my teachers were pretty bad and didn't pay attention to the letter, just giving me bad grades and no extra time like I was supposed to have had. That was totally the fault of the teachers, not the college. What I did was only take a few classes to make sure I could handle them. I did have to drop out of a couple because it was too stressful. Åt the same time one of my medications was giving me double vision and I couldn't get out of bed until it wore off. That being said, I decided to take only night classes. It was very helpful and I am a night person anyway, so it was perfect. Once my insurance approved a different medication to swap out the one giving me double vision, it was a lot better. I ended up leaving about two weeks before the year ended because everything was so stressful that had happened up to that point. Do not let that stop you though! It can be done.
