I'm so happy to hear you have such a large and loving support group around you. Living with FND can feel extremely isolating. I also know what it is like to have anxiety about going out of the house for events or just to run errands. My symptoms have unfortunately gotten worse as of late and affect me about 75% of the time now. I don't have seizures, but instead becomed completely paralyzed, unable to move, open my eyes or speak. If the episode is bad enough I will also get dystonia in my hands and feet which is quite painful. The episodes are getting more frequent and lasting longer, sometimes 24hrs or more leaving me incredibley weak. It is hard when your whole life changes drastically. My heart is with you. ❤❤❤
@@haileyparlette8083 I'm sorry to hear this. Obviously I can't be sure but sounds like you could possibly be experiencing a functional or absent seizure during those moments where you can't move or speak and get dystonia. Seizures can present in many different ways. Do you get any warning before these moments happen? I've only had two experiences when I couldn't speak, move or open my eyes and it's absolutely terrifying so I really feel for you. I can still hear people and it's so frustrating not being able to respond!
Yes, I do get a warning before they occur. Not any specific symptom, but it is like I can feel a shift in my brain. I usually have a couple minutes to get comfortable in bed or on the couch first. I use a 4 wheel walker when out and about so I have a place to sit right away if I feel one coming on.@@SassyFNDLife
The paralysis has been the main symptom of my flare ups until I had my first seizure just 5 days ago. Paralysis is scary and mine has presented differently every time. FND is weird and I’m still learning how to live with it.
@@ange1mom438 it is weird! The symptoms of seizures, paralysis, etc. don’t seem to have any logical structural root. Yet it persists. So grateful to have a medical team that understands. I’m trying to be patient and accept that there is no cure for this.
@@juliebey8240 I’m grateful that there is one neurologist in Calgary who is an expert in this. She has helped educate ER docs and we have a specialist team that run a clinic that has psychiatrists, psychologists, rehabilitation specialists, nurses, physiotherapists etc and a program that helps patients learn to live with this condition and supports families. UA-cam though has been a fantastic teacher! Wow I’m learning so much from all the videos. Information is power and I’m not as scared as I was a year ago. Commenting and sharing with others has also been a great help and source of comfort. Sending you best wishes for a happy Christmas 🎅🏻
I totally get it. I was recently diagnosed which explains the seizures. I had one just this morning, fortunately, prior to entering the restaurant. By the time my friend got me home I was falling out of the car. Very embarrassing and I also felt like I ruined the outing. She was so gracious and kind. This disorder sucks….
@@juliebey8240 sorry to hear that but it sounds like you have a good friend there! A lot of the time for me the embarrassing part is how strangers sometimes react to it. Most leave us to it or silently check to see if we need help but others are louder about it and I find it can prolong the seizure and recovery time because my bodies even more tense hearing them.
@juliebey8240 I will try my best 😊 after nearly 6 years even I'm still learning. Writing it out I can't believe it's been 6 years! I find it's all about adapting to the current situation. It can change suddenly for the worse but it can also change for the best.
Thank you for sharing your experience and educating the people around you at the restaurant. Please give yourself the same compassion that you would give to a friend.
I had my first functional seizure on Monday, I had dizziness for 4 days before the seizure and was sent to the emergency room. I was in a wheelchair when it happened and at triage, my daughter had taken me to the hospital and was with me when it happened and it scared the life out of her. She was traumatized because it’s the first seizure she has ever witnessed. Luckily I had my diagnostic records with me so the emergency room dr who assisted me through the seizure knew not to give me epilepsy meds. I was taken straight through to resuscitation room just in case. Now I don’t remember a darn thing, I’m missing about 28 hours. My daughters told me some of what happened at the hospital. I experienced wobbly body.. the only way I can describe it because everything was wobbly for four days. It’s Friday now and I’m a lot steadier, but still getting some uncontrollable jerky movement in my legs. I’ve been told that once you start with functional seizures they become more frequent and the after effects last longer. If dizziness is my alert I can prepare for a seizure to happen, but this FND is weird. I had an episode where I blacked out for 3 hours and woke up on the floor with paralysis which resulted in a ten day hospital stay, as far as I know I didn’t have a seizure. I’ve been diagnosed with FND for 3 years now and still learning about the disorder. The seizure is by far the scariest episode.
I'm so happy to hear you have such a large and loving support group around you. Living with FND can feel extremely isolating. I also know what it is like to have anxiety about going out of the house for events or just to run errands. My symptoms have unfortunately gotten worse as of late and affect me about 75% of the time now. I don't have seizures, but instead becomed completely paralyzed, unable to move, open my eyes or speak. If the episode is bad enough I will also get dystonia in my hands and feet which is quite painful. The episodes are getting more frequent and lasting longer, sometimes 24hrs or more leaving me incredibley weak. It is hard when your whole life changes drastically. My heart is with you. ❤❤❤
@@haileyparlette8083 I'm sorry to hear this. Obviously I can't be sure but sounds like you could possibly be experiencing a functional or absent seizure during those moments where you can't move or speak and get dystonia. Seizures can present in many different ways. Do you get any warning before these moments happen? I've only had two experiences when I couldn't speak, move or open my eyes and it's absolutely terrifying so I really feel for you. I can still hear people and it's so frustrating not being able to respond!
Yes, I do get a warning before they occur. Not any specific symptom, but it is like I can feel a shift in my brain. I usually have a couple minutes to get comfortable in bed or on the couch first. I use a 4 wheel walker when out and about so I have a place to sit right away if I feel one coming on.@@SassyFNDLife
The paralysis has been the main symptom of my flare ups until I had my first seizure just 5 days ago.
Paralysis is scary and mine has presented differently every time. FND is weird and I’m still learning how to live with it.
@@ange1mom438 it is weird! The symptoms of seizures, paralysis, etc. don’t seem to have any logical structural root. Yet it persists. So grateful to have a medical team that understands. I’m trying to be patient and accept that there is no cure for this.
@@juliebey8240 I’m grateful that there is one neurologist in Calgary who is an expert in this. She has helped educate ER docs and we have a specialist team that run a clinic that has psychiatrists, psychologists, rehabilitation specialists, nurses, physiotherapists etc and a program that helps patients learn to live with this condition and supports families.
UA-cam though has been a fantastic teacher! Wow I’m learning so much from all the videos.
Information is power and I’m not as scared as I was a year ago.
Commenting and sharing with others has also been a great help and source of comfort.
Sending you best wishes for a happy Christmas 🎅🏻
I was recently diagnosed with FND. Thank you for sharing your story. Stay strong. Your family love you.
@@Nathan-vn5tg thank you. Sorry to hear you also live with FND. I hope you're not having too much of a rough time if it.
I totally get it. I was recently diagnosed which explains the seizures. I had one just this morning, fortunately, prior to entering the restaurant. By the time my friend got me home I was falling out of the car. Very embarrassing and I also felt like I ruined the outing. She was so gracious and kind. This disorder sucks….
@@juliebey8240 sorry to hear that but it sounds like you have a good friend there! A lot of the time for me the embarrassing part is how strangers sometimes react to it. Most leave us to it or silently check to see if we need help but others are louder about it and I find it can prolong the seizure and recovery time because my bodies even more tense hearing them.
@ please keep posting. Share your story and your journey. Most of the stuff on FND is years old. Help me and us to understand 😊
@juliebey8240 I will try my best 😊 after nearly 6 years even I'm still learning. Writing it out I can't believe it's been 6 years! I find it's all about adapting to the current situation. It can change suddenly for the worse but it can also change for the best.
Thank you for sharing your experience and educating the people around you at the restaurant.
Please give yourself the same compassion that you would give to a friend.
Thank you, that is very good advice ☺️
I had my first functional seizure on Monday, I had dizziness for 4 days before the seizure and was sent to the emergency room. I was in a wheelchair when it happened and at triage, my daughter had taken me to the hospital and was with me when it happened and it scared the life out of her. She was traumatized because it’s the first seizure she has ever witnessed.
Luckily I had my diagnostic records with me so the emergency room dr who assisted me through the seizure knew not to give me epilepsy meds.
I was taken straight through to resuscitation room just in case. Now I don’t remember a darn thing, I’m missing about 28 hours. My daughters told me some of what happened at the hospital. I experienced wobbly body.. the only way I can describe it because everything was wobbly for four days. It’s Friday now and I’m a lot steadier, but still getting some uncontrollable jerky movement in my legs.
I’ve been told that once you start with functional seizures they become more frequent and the after effects last longer. If dizziness is my alert I can prepare for a seizure to happen, but this FND is weird. I had an episode where I blacked out for 3 hours and woke up on the floor with paralysis which resulted in a ten day hospital stay, as far as I know I didn’t have a seizure.
I’ve been diagnosed with FND for 3 years now and still learning about the disorder.
The seizure is by far the scariest episode.
Thank You for sharing this video. I’m newly navigating FND. Your video was very relevant. 💖
Sorry to hear you live with FND too. Welcome to the warrior club! I'm so glad you are able to relate to this video 💕
Thank you. I very much relate.❤
I'm sorry you relate, meaning you experience this too but am so glad it may help 💕
Aw so sorry this happened. This is the problem with FND and how unpredictable it is. Onwards and upwards Sarah x
Absolutely. You have to expect the unexpected! Thank you. Hope you're doing okay? X
Well done you…
Thank you.