one of the scariest things I've talked about. (just being honest)
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- čas přidán 26. 08. 2024
- for the longest time you guys wanted me to talk about seizures, what its like, how I deal with them, everything so I decided to finally do it and just make a video talking about it. I'll be honest it made me uncomfortable at times but, I wanted to do it.
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My sister died of a brain tumor 9 years ago. I was in a bad place after it happened like everyone would be. She was twelve I was nine. Long story short I found your channel 3 years after her death in the height of all the brain surgery stuff and it helped me. Thank you so much for being an inspiration!
jenna will I’m glad he could help you through the hard part in your life. I’m also so sorry for your loss I have personal experience with the loss of loved ones and it stinks. I’m always here for anyone in this situation.
Sorry for your loss. I lost my sister of the same in 2011. Reason I found this channel.
jenna will Oh my gosh, I can't even imagine going through that. I'm so sorry!
Sorry for your loss
This made me so sad. I’m so sorry for your loss!
Maybe put "seizures" in title of video. If anyone in future searches for such videos, under current title this video that contains decently explained personal experience, is hard to find.
Do this
Norest I agree that’s a good idea
This was so helpful for me. I totally agree, @Norest!
well he has seizures for the tags of the video so it should come up if you search up like is a seizure
Agreed, he gives a very clear and eloquent description of his seizure semiology
I love the statement charles made towards the end. "You believe what you wanna believe and I'll believe what I wanna believe." Thank you Charles
yep you can use "they poked my brain" for the rest of your life
Hey Char, as a fellow sufferer of seizures, I understand difficulty in having to, in a way, relive that experience in order to talk about it and explain it to others. I just wanted to let you know that I think it's a very brave thing you're doing. I also wanted to tell you yet again just how much you have helped me during the past 10 years that I've been dealing with my own health issues, the seizures being just one small part, and I too have a very morbid sense of humor when it comes to dealing with all it, so you have no idea just how much you have lifted me up when things have been hard. Thanks so much for always being yourself!!!
Charles
My niece is 8 and has had 2 seizures in the last couple of weeks. Thank you for putting into words what an 8year old can’t. ❤️
Oh my goodness, I was so happy to see you chose my question. I am also happy you did the video. I know it's hard to confront the scary stuff. Having nocturnal seizures too I understand how disorienting it is. My daytime seizures have auras where I see silver sparkles and smells like something burning. I am a control freak so I hate not being in control of my body. Afterwards I am exhausted like I just ran a marathon. Takes a lot out of you. I'm on Lamotrigine and Oxcarbazepine and Pramipexole and klonapin for anxiety. Took forever to find the right combo. I'm glad your meds are helping and also glad you have Allie to watch over you. I love you both and you are always in my prayers. ❤️
Disney Gamer Thank you so much. ❤️
I have a terminal illness that because of medicine keeps me stable.
I think your main voice of this video is, you live your life as if something were to happen, you will deal with it then.
Living your life in fear will drive you and everyone insane.
I stopped with the "what ifs" and started with, if it happens you will deal with it then, but now everything is okay.
This was an amazing video Charles. You're so strong and you've come so far. I've been suffering from major anxiety and depression for 9 years and when I found your videos a year after my diagnoses, while you were in month 4 of the daily vlogs, your positivity has really motivated me to keep moving. Eating healthy, exercise, and taking vitamins are 100% the reason why I'm on the lowest dosage of meds I've ever been on. Thank you for sharing today and everyday ❤
Laughing and humor (sometimes dark and not understood by others) has always been my family’s way of “dealing” or helping. Laugher is the best medicine.
My mom works for a cancer doctors office and sometimes she will talk about work and you can just tell how it breaks her heart from time to time. From people not being able to afford their medication all the way to them literally wasting away (one week they look fine and in a few weeks to few months they don't look like they use to). That's why I always if I had a super power it would be ti cure any disease/sickness in the world especially for the little kids because they don't deserve having to worry about their sickness, they should be outside playing but no they are in a hospital bed and they should be able to live a nice long life.
You should put seizures/brain tumor/cancer in the title for other people with it to see if they search for that
Thank you for your transparency on this subject. I have that much more respect for you for getting way out of your comfort zone and answering fan questions about what you have dealt with and still deal with today... I’ve seen two very different seizures happen (one was my friends dad and it was more or less like what you were describing and the other was a friend from a small group at church who had one at church right after group was over and it was more like what I expected from a seizure. It scared the crap out of me bc I couldn’t do anything but stand there and watch it happen) and hearing someone talk in depth about what they can and can’t remember about it is kinda interesting...
also, good for you on being pro health and pro medical marijuana. I’ve heard great things about CBD oil and would like to try it for other reasons like depression and anxiety. Thanks again for your transparency Charles. You’re awesome
Hi Charles, neurosurgery resident from Boston here. With regards to the genetics of oligodendrogliomas, unless you have multiple family members with this type of tumor, it is unlikely that your children will be at any greater risk than the general population of developing an oligodendroglioma. This is because the vast majority of oligodendrogliomas are the result of "sporadic mutations" or mutations that occur by random chance within the brain (2 in 1 million). These types of mutations are not passed along to offspring. The types of mutations that are passed on to family members are called "germline mutations" and these mutations occur in the testicles or ovaries.
Although the sporadic mutations are not inherited, they have actually been very useful in understanding tumor biology. Two important genetic factors associated with oligodendrogliomas have been identified, namely isocitrate dehydrogenase (IDH) mutations and 1p/19q chromosomal abnormalities (you may have heard your doctors discuss these or seen them on pathology reports). Discovery of these factors has allowed us to better classify these tumors and predict how patient will do over time.
Thank you for sharing your experience. We only get a small glimpse into patients' lives when we see them in clinic. It was incredibly helpful for me to hear your story and what your daily life is like. I'll be sure to share with others. Keep up the good work!
Charles: "I don't mean to be blunt"
I see what you did there.
Joking aside, even people who oppose recreational use of marijuana should be able to see the medicinal value of it.
I love where your going with this channel. This was so raw and you were so vulnerable! Thanks for sharing!
Im so glad you spoke about this. My son is five months old and being weaned off of Phenobarbital which is an anti seizure med. He had seizures since he was born and they never found a reason however earlier this month they did an EEG and found no seizure activity! We are hoping and praying he can continue his life seizure free but if not I know I can show him your videos yes you may be scared but you can still go on to lead a normal life! That is something that amazes me and makes me realize just how strong of a person you are. For a month after we found out about his seizures I literally watched him all day everyday for the slightest twitch that wasn’t right I would cry everyday but watching your videos and having watched you go through it and how strong Allie was for you I realized how I needed to be strong for him!
you're brave for sharing all this through the internet. ive always wondered about how your tumor effects you, ive met you a few times and you're so chill, ive always looked up to you ever since i was a kid following your vlogs. saw you 3 years ago and 2 years ago for the annual hometown concert. when i was 14 my dad lost his life due to cancer and i watched it all, so watching you live your amazing life and meeting you was a big thing for me. I hope to meet you another time!
No one can understand how a person feels unless you have been through it so remember your words and even answers to questions will help someone.. Thank You for being brave enough to share...xoxox
Charles you inspire people everyday including myself and you are the main reasons I started my CZcams channel and become a vlogger just like yourself so you are a great role model.
jackwillistv you’re story just made me tear up a bit.
Thank you for being so vulnerable and open with us everyday. You are such an inspiration to so, so many of us. Sending you much love ❤️
As someone who lives with Lupus & also makes morbid jokes to cope... I’m already laughing before you even really started talking. I’ve been waiting for this for so, so long. I’ve been watching you since 2009, I think? And when you started getting the seizures and talked about what happened, it hit home with me because I’ve had fainting spells for years, and they’ve always wondered if I have seizures... and the more you’re explaining this the more I’m thinking I might be having them... so thank you for this. It’s evident in your eyes that this wasn’t easy for you to talk about, so thank you again.
AND HELL YES FOR MEDICINAL MARIJUANA BAYBEES!!!! Don’t panic, it’s organic!!!
How does 9 people hate this ---Charles is being open and honest and hoping this will help
Others WTF people you can't hate someone who's helping others
Thank you so much for sharing Charles. I cannot even imagine how hard it is for you to talk about those things. Been a CTFxCer since 2009 and so proud to follow u all these years. Hugs and love
I live in Idaho, and I haven't followed Charles through his brain journey only right before Allie came on. But everytime I watch I remember him saying how Idaho is a sore spot for him now. It's so sad but I'm really glad he's okay now! My bf had a seizure last weekend and it was his first one. This video will help him understand a lot and give him a sense of relief. So thank you Charles!
I'm glad that you were able to talk about your condition. I had an spouse who used suffered from seizures while being on Dilantin 3×s daily along w a whole slew of other meds for other medical conditions he had. One of them being type 2 diabetes which made it hard as hell us. It's an ongoing process to go through when it comes to preventing seizures or at least controlling the frequency and severity of the episodes.You're inspiring to others by doing what you do despite having to take meds to for seizures. One day I hope that research will find an cure for all diseases.
Louisa Lewis
Very brave of you Charles, very brave, wish we could all get together and hug it out for you lol one can only imagine the struggle. But I’m glad you got to get it off your chest. Stay strong buddy, from Day 1 watching this channel you guys have inspired me in so many ways, and I really hope someday, I pray on it, you won’t have to worry about this shit anymore. You’ll just be done. Again, stay strong, we’re all here for you. Allie is amazing person and definitely an amazing wife haha glad you’re in each other’s lives. You got this. Keep pushing, and last time, I can’t even explain how inspirational you are. Thank YOU for that :)
I don't have seizures but I know some people who do. I just want to thank you Charles for making a video that takes you out of your comfort zone and makes you feel weird so that you can answer questions your fans have about their similar experiences. Not many people are willing to put themselves out there when it means being uncomfortable or vulnerable and you did. You are inspirational and an amazing person. Thank you.
Charles you are a truly inspiring. I have no idea how you are so positive with everything you've dealt with in your life.
I love that you made this video & are opening up about everything. I was also diagnosed with a brain tumor shortly after you were diagnosed with yours, and watching you go through everything & keep a positive attitude towards it all really helped me to cope with mine. Thank you.
Although I do have to say, the whole "avoid eating things you can't pronounce" thing shouldn't be taken too strictly. There are lots of foods that will list added vitamins under their chemical name, but they're good for you!
I've been watching since day 10, so I know that you really don't like talking about this. I don't remember you ever talking about it in so much details as you just did. This must have been a tough video to make, and that makes me really appreciate the times you do talk about these things, knowing how difficult it is for you. Great video
very well said Charles. thanks for being so open and vulnerable...it's why I've been watching your channel for 5 years and why i became such a huge fan of We The Kings. so many of us have different health issues and it's so comforting to know we're not in it alone. your positivity is inspiring.
Charles, I really appreciated this video. I work as kind of a personal care aid for a boy with autism and epilepsy. He is completely non-verbal (can't communicate in any form) and has seizures currently about once every 7-10 days. Last year there was a point he had 8 in 12 days. It was really difficult when I started working with him because they were just starting to happen and no one knew what to expect. It wasn't what I signed up for. But now its been almost 2 years working with him and we can handle them a little better. It's great you can understand what goes on after a seizure happens and can process it. Unfortunately, this boy completely passes out after his and can sleep for hours and hours after. He doesn't understand at all what is going on, but takes it like a champ. Thank you for explaining your experience so I can better understand what he may feel.
Charles, you are a brave person. Being able to look past those things that make us uncomfortable to benefit others I have to say good for you. As to your plane seizure, don't feel like you are the only one to have one there, you have plenty of company. I am an airline pilot and in my 30 year career the only medical issues passengers have had on my planes are seizures. At least on or two a year. The good thing to know is that many airlines have a service where the flight attendants can get in touch with a hospital on the ground within minutes and the doctors are able to diagnose and give advice on a whole host of medical issues including if the flight should divert to a closer airport. Thanks for getting past your uncomfortableness to talk about this because I found it very enlightening :)
thank you for making this video. my 6 year old brother had 2 seizures about 2 months ago, at the time my family thought he was choking on a gum ball so we started giving him CPR. he then went blue and stopped breathing. we thought we had lost him. luckily he woke up right before the paramedics arrived and we then realized he had a seizure. while at the hospital he had another one that literally lasted a few seconds. this was the scariest moment of my life, luckily all of his tests have come back positive, he’s back to acting like his normal self, and he hasn’t had one since. knowing how strong you were through all of your medical conditions really helped me through that night. so again, thank you for everything you’ve done charles
I have epilepsy. I am now 37 years old, was diagnosed at the age of 24. I am thankful that my seizures are under control as of a couple years. It's super scary. Before I had my first seizure my ears started ringing so now every time my ears are ringing I am scared I will have a seizure. Love you Char!!! Stay strong and positive :-)
Thank you for talking about this, I know it wasn't easy but it was really interesting just to hear your feelings about the whole situation. Much love ❤️
I think adding humor to a rough time helps you get through it a little easier, like you said a coping mechanism. If you can't laugh in life especially going through illness or stressful emotional times then you will just feel sad and bogged down through it. Like they always say, laughter is the best medicine! One of the most inspiring things I have seen in the vlogs is the positivity both you and Allie exude when it comes to a tough time or your health scares. I struggle with that because in a tough time I shut down and I feel hopeless and helpless and scared. I aspire to have that same positivity in life that you both have. It is truly amazing to see, especially how calm and collected and comforting Allie is when you have a scare, I feel like I would be an emotional wreck but I guess for the other persons sake it is a must to be a rock. Thank you for being so open with us, I applaud your strength and courage Charles!
I had 6 Grand Mal seizures (total loss of consciousness) in middle through high school. The seizure does not hurt, the things you collide with hurt you. That is why the best thing you can do if you see someone having a seizure is to remove anything immediately around them that could injure them. I would describe the post-seizure experience as waking up in a fully exhausted physical state, the kind of exhaustion you feel after a hard days workout but without the sweat. The worst part as a teenager was having no peer group to talk to about what I was going through, even the hospital did not offer counseling. I've been seizure free and medicine free for over 20 years now and live my life the same as if I never had the seizures to begin with. No cause was ever found for my seizures, all the tests were running including CAT scan and EEG.
Wow I can believe that was so long ago. I remember being young and being so worried for you. You are an inspiration and what feels like family to me. I've been watching since I was 6/7 and now I'm going to be 14 in may. Love you and your family.
I'm glad that you're willing to open up about the seizures. The more exposure you give yourself to the memories that scare you the more comfortable you will become with them. Which leads to less fear, which leads to less anxiety, leading to less chemicals, leading to less medication!
Thank you! The struggle is lighter when you share it. Thank you! JUST KEEP BREATHING! 🖤
My ex fiancé was going through brain decompression surgery for Chiari malformation while you went through your second surgery and a huge part of his recovery was watching your videos... he lost himself for a long time and it resulted in us breaking up so he could find himself and grow again. We’re best friends now and that’s all I’ve ever wanted. I’ve watched for for 7 years and now he watches everyday still as well. You help more people than you know and I’m so glad you feel comfortable telling us the rest of your story. 💕
My brother died from brain cancer 11 years ago this May. I was scared to death watching you go through your ordeal. We all miss my baby brother very much, he was 42 when he passed.
I'm a nurse and I have seen many people have seizures both in my professional life and private life. This is an excellent Vid for people that are suffering from seizures. It is down to earth and speaks to people on a non medical level, which I feel is so important. Great Vid Charles.. and thanks for sharing this.
My gran's cancer spread to her brain last year and when not under control from steroids the tumour causes her to go into a state that i can only describe as being similar to severe dementia but it's more of a confusion than memory loss; at it's most extreme she believes that she's no longer alive. Her recent radiotherapy resulted in her having a couple seizures so it was interesting hearing this and listening to the perspective of someone else who lives with them and how you cope with it. It's crazy to me the different effects that brain tumours can have, I have multiple family and family friends who have suffered from brain tumours and all reacted completely differently; it's terrifying to think that the symptoms can be so drastically different with even just a a couple millimetres positioning difference.
Thank you so much for your bravery and honesty. You not only helped people who are suffering from brain tumors but also help others understand about them as well. So glad you are doing well! Love to you and Allie!
Have you ever considered therapy for PTSD? Or MBSR? Or even MSC. I am an RN and going through MBSR classes right now. It just might be a game changer for me. If you are still fearful (which is totally natural btw) it could help with that. A person can suffer from PTSD from much less than you went through. I know that you both are open to holistic and non medicinal treatments. It’s wonderful. I pray for your continued health and wellness! Love you both!
There are so many mindfulness videos on CZcams you could do all your training by right there!
Charles Trippy my heart goes out to you and everyone struggling with the same thing. You guys are one of the most strongest people ever to have to live with that fear and yet continue to live life the best possible. Charles your seriously someone I look up to. Thank you for being brave and as always opening up to us.
I know the feeling of trying to explain what it feels like when you're having a seizure. I had them for all of my childhood up until 18 years old and everyone always asked that question and it was very difficult to explain unless you had one. Thanks for taking about this.
Did you have any headaches or warning signs leading up to your first seizure?
Charles, to be honest I'm so happy you've finally made this video and decided to answer questions. The fact that you chose to vlog your surgery because you know that others may be going through the same thing, so naturally talking about your experience would be a good thing too. Lots of people look up to you and some can relate and just know that you're an inspiration to them and those of us watching daily, we are all here for you.
I'm a counselor & have worked with many people who seizure. Any increase in 'excitement' usually precipitated it. (Such as stress, anxiety, or even good excitement.) By being aware of events that may cause too much of this, and lowering the excitement, anxiety, etc. the frequency of seizures also decreased. Maybe watch for this yourself. I'm also a person with advanced & aggressive cancer which we were unable to treat plus a progressive serious untreatable lung disease. Having no medical treatments available that can help I depend on my immune system, and nurture it with lots of sleep, eating well, keeping on top of colds etc. I have outlived the doctor's expectations, & have been told its not medically possible to be as healthy as I am. I do require oxygen if I get a chest infection but people meeting me have no idea I'm even sick. Serious illnesses cause anxiety but I'm very Christian & my faith has helped with that. I figure, if I live I get to continue my life here on earth. If I die, I'll go to heaven. It's a win-win situation not matter what😄
Loved this video actually ... loved the aspect of "yep this is me, this is what i go through" not that youve ever hidden it, i mean you vlogged the whole hospital stay and even surgery ... but thats all the physical ins and outs. I was interested in hearing for you, how these things feel. Emotionally, mentally - ive been curious for quite a while actually. Im so sorry they happen to you but I love how brave you are for sharing these feelings and fears with us! *hugs*
I love you charles and allie! We will always be here for you two. You both are a great inspiration to us all. Thank you for sharing Charles, I know this video was tough for you to make ❤
I first heard about you from watching the Shaytards. I live in Boise and my husband has epilepsy and I was instantly drawn to you and your story. I imagine it's some crazy sh&t to live with and I also know has crazy it is to watch someone you love have them right in front of you. Shout out to Allie for being so strong and supportive, because it's scary on her side as well. We were in RC WIlly's looking at furniture one night and my husband started looking up and turning in circles. I was thinking what the hell (probably like Travis) and then realized he was going into a seizure and had to hold him and lay him down on the ground in the middle of the busy store. I applaud those that have to live with the unknown. :)
I am a cancer survivor and I always remember that every single day. I can relate. It really does take a portion of your day. If I think about it too long I get anxiety attacks, so I sometimes literally have to shake my head to stop thinking about it. It’s just part of my life, has been for 13 years now.
Thanks for being such a light surrounding cancer topics, it means a lot to me. I met you in philly on ten year tour and I was so excited. I’ve got a video of it on my CZcams if you wanna see!
My insta and youtube: insidekrystamind
I was diagnosed with epilepsy in September. I was having starring seizures but i never went to a neurologist to get checked because i was nervous and it was never life altering but May 18th 2017 i was at work and i felt myself having absent seizures again and than i fell into a grandma seizure. I don’t remember any of It. When i “came to” my vision is black but i hear my boss saying you’re okay katie I’ve got you you had a seizure” and don’t remember anything after that until I’m on the ambulance and my dad was there and he said he’s right behind me don’t worry and i told the paramedic that my tongue hurt and i bit my tongue hard. Than everything is blank again and I’m in the hospital and my mom Dad and boss are there with me. Everything else had to be filled in by the witnesses because thank god i had a coworker right next to me and a woman i was talking to came to help me. I was exhausted and super sore when i finally remember being in the hospital. I was sore for the next two days and my tongue took about 3 days to heal. Now I’m on keppra and getting on that medicine was horrible. Every side effect listed, i experienced. But all good now. May 19th I’ll be one year seizure free wahoo!
Charles you are an inspiration to people and Im glad you were able to finally talk about everything. I had severe epilepsy (grand maul seizures) between the ages 4-13years old but I had mine any time during the day which sucked big time and just like you talking about them creeps me out sometimes. Im glad you are getting them under control as well and hopefully one day you will be completely off the meds and seizure free ^^
As someone who has also had seizures and had to get brain surgery to stop them hearing you finally answer questions was really awesome. You and Allie both have helped me when I did have mine just with my mind set and how to kind of have fun with it in a way and laugh about it because that is my defense mechanism also. I hope to meet you 2 one day to thank you personally for what you have done for me
I started having seizures in my early 20's. They don't really know why, but assume it's genetic since some of my family has epilepsy. Stress and sleep deprivation are also my main triggers and I also have my seizures almost exclusively in my sleep. One of the things I find difficult about it is that people don't understand the implications on your life and it's a whole thing to explain each time. Like what Charles said about the stress of seizures causing more seizures, or the side affects of the medications, loss of autonomy, fear of falling asleep places, etc. It's hard to explain to people that something like this takes root in your life and touches a lot of different aspects.
I found you while looking around on the internet for any information regarding my oligodendroglioma grade 3 brain tumor a few months after my brain surgery in 2014. I have mentioned you to my neuro oncologist and was surprised he had never heard of you. I wish you would make a sample DVD video and send it out to all the brain tumor centers so that they could give their patients a video of you so they can see that people like you and me can continue to live as normal as possible lives. You have been such a great inspiration to me. I can relate to all of the things you talked about....especially wondering when the next recurrence will be. Also, please thank your mother for praying for me.
He is an inspiration my baby boy! Glad he helped you in your journey. Mama T
Finding Charles was like finding a needle in a haystack for me. Thank you again for your good wishes.
I've totally been missing the vlogs because I'm so busy in school, but Charles you're looking good!! Idk if you and Allie are still keeping up with being healthy, but your face totally looks slimmer!
We love you Charles!!
Thank you for this!
I was told I could possibly have seizures from a TBI that happened in '89. So far, so good, all I have is muscle spasms, flex and release in my arms and legs. Sometimes I lose any feeling in my hands or feet and either fall or drop something, stuff happens. As I most often like to think, 'I am not doing so awful, could really be so much better, but its not that bad'. Then I scratch my head and somehow wonder if I could get a refund on the guaranteed good life I was promised.
My TBI was from a closed head injury from a car accident and the car took it worse than my body did. I didn't break any bones, something hit me that bruised half my face, brain and received a cut on my head (needing stitches) and my hand. I was told that I was bleeding in my brain but it had just stopped and no one knew why or what happened. Thank goodness, I was wearing my seat belt.
Sometimes I feel bad when I forget something and then I recall that there are a whole bunch of people that don't have head injuries or a TBI and the can get away with forgetting so much more than me. Things just could be not has good as they are now, ya know?? See we aren't doing that bad, Char.
Thank you for answering my question! I am honestly so happy you opened up more about this, even though its been so long!
Watching your story and seeing you get through it and live your life fully is helping me get through something similar in my own family. You give me hope. Thank you for talking about this because my family member doesn't want to and when it's happening to someone else it's really hard when you don't really know what's going on inside them.
I'm currently going through a lot of health issues and testing to see if I could possibly have Cushing's disease. And one of the causes of this could be a benign tumor on my pituitary gland in my brain. So brain scans are soon going to be ordered. And when I found out that that could be a possibility I immediately thought of you and your channel. Going back and watching those videos when you were at the height of all this nonsense has helped calm my fears down a bit. I know that what you are going through is different but its scary as hell as you said to hear there could be a tumor in your brain. So thanks for your honesty and openness because its seriously helping me in this tough time.
Hugs. I know personally knowing I have cancer stresses me out. I do my best not to think about it. But it happens , I too use cbd oil. ❤️
For the longest time I was scared to miss a video because it seemed that every time I did, you had a seizure. You seem to be doing so much better now. So happy for you! And, I can relax, lol.
I have watched your videos for 6 or so years now. I watched your surgery video and that didn’t really bother me. But i could barely watch this video. Hearing you talk about what seizures feel like you are SPOT on. I have epilepsy and I’ve been seizure free for 2 years. Seizures suck! Thank you for being strong and making this video. I dont like talking about seizures
I just want to say that I am so proud of you for making this video!! I can't even imagine how hard it must have been to talk about. It was very brave of you. It's OK and understandable that you have anxiety, you have been through a lot. Don't be ashamed of your anxiety, take control of it. Once you get it controlled everything else will be easier to deal with. Remember the hard part is over. the more you talk about it the easier it gets to deal with. I Struggle With Anxiety too, and have most if my life so if you ever need pointers on how to deal with it let me know 🙂 you are awesome and you can. Overcome this once and for all. the CTFxC has your back!!!! 💛
I had suffered two seizures when I was going thru a stem cell transplant to put my cancer in remission. I was terrified and it always is in the back of my mind when I start feeling weird physically I freak out thinking it will happen again. Thank god it's been two years, same with the cancer too 👍 when I was going thru my cancer your channel kept me sane and positive thru it all.
Charles, you are such a role model and inspiration to so many in so many ways. I know it took a lot to do this. YOU FUCKING ROCK! This vlog is awesome!
Such a great video char. So proud of you for opening up about your situation more and explaining things with so much depth. I can’t imagine how nerve wracking it all must be for you. Stay strong dude 💪🏻
Good on you Charles! Crazy to see how much your life has changed since when i started watching back in 2009. Good luck with everything in the future man and keep being awesome!
Charles I’m so glad your good now and able to talk about it to help others. So I know this isn’t the same but as some one who has epilepsy since I was a year old it even helps me feel better to hear someone else talk about seizures. When I have one I don’t realize I’ve had one and am out of it takes a bit to come back. Just wanted to say thank you for sharing and I Love watching your videos.
I have these odd episodes where I feel really dizzy and nauseated, but also have feelings of deja vu, except I don't necessarily pass out on the floor and have a seizure. I looked up on google what I was feeling and it came out as FLE (Frontal Lobe Epilepsy), I decided to schedule an appointment with my doctor to see if I actually do have FLE. My doctor scheduled a CT scan and after taking the CT scan, they told me everything turned out normal. Then one day the brain episode happened again so I once again scheduled an appointment with my doctor, but this time she scheduled an appointment with a Neurologist. The neurologist explained to me that the cause of these symptoms could just be Anxiety, which is what I've had since I was 5. So, the neurologist prescribed me with what you are currently taking, Lamotrigine. It's been about 2 years now since I was first prescribed and I'm still having the episodes, except I'm having them less than before they prescribed me with Lamotrigine. Ps, Not a fan of the dissolving flavor! Lol, but at least its working.
I am 43 and had my very fist seizure recently and it sacred me so bad and i thought omg whats wrong with me. You are an inspiration to overcome them. I had tests done so we will see. Stay strong dude
My mom passed from a brain tumor in 2001. My cousin passed from a grand maul seizure. He had epilepsy. So a little different situation. I'm glad I stumbled across your videos.
Thank you. I know how hard it is to talk about chronic illness and the feelings that go along with it. So thank you for doing this video. 💜
We appreciate your candor and the courage it took to talk about this. Thank you for keeping it real for your subscribers. I personally can't relate to the subject of matter but like you said, it can help other people and it's amazing what you've overcome and that you opened up and filmed this anyway even though it made you uncomfortable
It’s interesting how seizures can be so different. My dad has a seizure disorder (he also had brain cancer) and he can feel them coming long enough to get to a safe place and call for help. He also has them mostly on the left side but he stays conscious the whole time and can hear us. He also sometimes tries to talk but you can’t understand anything he is saying. He also is weak on the left after and we never let him move until his grip includes. And yes, Dilantin SUCKS. It made him so loopy and out of it. Keppra ended up working for him.
I know it takes a lot to come out and talk about that Charles, you’re so strong and I admire that. Know that you have a great support team on your side :)
What timing of this video too. I last week saw a new doctor who thinks I might be having seizures. They currently happen about 3 times a week and I get that dizzy feeling as well and am so tired afterwards. It’s exhausting! Worst part is is that I live in Canada which means long a** wait times so I can’t get my EEG and next appointment with the seizure doc until June :( I’ve been watching your vlogs for years now and honestly love them so much! I actually met a friend in high school because we both watch your vlogs. When then made it a thing to watch your vlog together every morning and have tea haha! Love you Charles, stay strong
Thank you for opening up. So many people are afraid to talk about it because of old ideas and stigma. For you, I understand your feelings of dread. You had a traumatic experience. Others with similar conditions or medical histories or current seizures or even tumors will relate and you'd be surprised how much this will help them. I have a lung condition and talking about it in the vlogs has helped others open up. God Bless. Keep up living and don't let it rule you. I love your sense of humor.
You’re so brave for posting this Charles. I’m sure it’s helped people in similar situations and given all CTFxCers an insight into just how strong you are. Xx
That was so brave of you to answer those questions. I could tell it was tough going but you felt you had to do it for the sake of others going through the same thing. I met you once, before you ever had your first seizure, but right then I knew how much you cared about other people. London, Contiki meet up, when you went out in the street to greet the people in the line who were not going to get in before the event ended.
I had seizures as a child. Then my niece had them, but my son didn't. Turns out in our family, females are genetically predisposed to febrile epileptic seizures. More intense than just 'normal' febrile seizures. Which scares the hell out of me about having another baby. I remember my last grand Mal seizure. I was 5, just sitting on a bed talking to my aunt, and all of a sudden I couldn't breathe. It was terrifying.
I can't even imagine the anxiety you have about sleeping. That has got to be draining.
My Nan passed away from a brain tumour 4 months ago she was only diagnosed with it just 3 months before she passed, but whenever I thought of her, I always had you in mind knowing you’re well And living a “normal” life! I kept positive and I’d tell her about you and your story and we both stayed positive about the whole thing and she kept fighting! If she didn’t have that positivity and strength she wouldn’t have lasted as long as she did! But thank you! You (other people too) helped me stay positive during a very hard time! You’re amazing and strong and brave Charles! We love you so much!💜
Thank you for opening up about this Charles! I’m confident your experiences are going to help somebody! You’re an inspiration to me!
Charles your so strong a true inspiration ❤️☺️
I'm a 2x brain cancer survivor & you can actually die from a seizure. It depends on what type of seizures you have. I have tonic clonic seizures (grand mal) and before my first surgery I had seizures so badly I coded 5 times & was on the vent for 4 days. The doctors actually told my parents when I was coding that they didn't think I was going to make it.
In 2009, my first seizure has happened. And during my sleep. It was because of school. Starting a new job. And my friend passing away from the cause of a car accident. I graduated in 2010 and that was the last that I've had known seizures. I take medication. And now that I live on my own, I do think what might happen if no one is around? So finding a friend who can be a roommate that understands would be wonderful.
Very brave vlog, Charles. Very interesting one, too! I had a friend who grew up with epilepsy. He had a seisure when I was alone with him watching The Simpsons once. I didn't know what he was doing for a few seconds then I realised he was having a seizure. And we were smoking weed. Brian's house was the weed house on the beach in Encinitas, CA. This was 2005 before CBD oil was any good. Brian had an elaborate MySpace page dedicated to weed. I asked 'what should I do!?' He couldn't answer as he sat on the couch across from me groaning. His mucles tensed up non stop for 4-5 minutes. I got a glass of water but in a minute he came to, and I was like 'should I have called 911?' He said no you just ride it out, and said he was sorry. I was like 'No, now I know what to do and how to recognize it'.
Hope the CBD oil is helping!
Sorry you have to live with this. I have been watching your videos since the beginning. Glad your answering questions, as so many people have this problem.
thank you for sharing such a difficult personal issue. Your honest responses gives others a comfort they are not alone with their challenges. Keep bringing us beautiful vlogs.
I love you Charles I'm so proud of you for making this video. U give me so much strength
Proud of you for finally talking about it Charles! I’ve been epileptic for almost a decade now and the seizures really take a toll on you mentally. I really hope this lets you take a little break from the anxiety it causes you!
Charles you are a huge inspiration, and allowing yourself to talk about this shows a lot! Everything will be okay and it’s amazing the progress of the tumor shrinking and basically not growing at all in the past couple years. You have a amazing support system, especially with Allie !! FUCK CANCER ; toodles !
Sending you love, Char. You totally do have that strong face thing. Love that advice to the friend: keep her busy, make her laugh. I'd add Love her. Your description is so right on the money. I feel like my brain is doing that -dit-dit- thing. And I'm so weak.