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Just started taking it heres hoping

Dearest cassey, so sorry you are having to navigate travel on your own. I have been house bound for 3yrs now. Losing my independence has been so hard!! Very happy you are doing movement. I have been doing some tai chi. Definitely feel your feelings, don't become controlled by them is the trick. Sending you love and strength! You are amazing, keep going beautiful soul, you can do this!

Have you been through balance therapy with a PT familiar with FND? Not trying to push advice on you, but I went 6 years not seeing any improvement and balance therapy not only helped my balance but also helped me get diagnosed with POTS and understand the way my brain fails to work in general.

I am so sorry to hear you have been struggling. I have been as well. Keep your head up! You will make it through.

I am very Happy to see you with that cat! I can tell u are a good person and you are gonna take care of that cat! Always feed cat when hungry and they will meow for you ❤

It’s like Xanax but not as strong

Yes I can answer that if you take kilonopin every day or not even it’s really strong and really good at loosing memory

Follow me Cassey... I will do my bag "I call it Harry Potter Bag" that I carry.

I suffer seizures and severe depression and Pregabalin and Venlafaxine are the line of treatment. Without them I’d be in trouble but they deaden the senses.

I never Believe in fnd from the day they Gave me, the symptoms where brutal, and of course no answers.. everything change when i go carnivore, so i had huge inflamation in the brain, and co- infections..so healing the gut was crutial for me😊

They also Gave me fnd, but i dont Believe in this diagnose, carnivore helped me so much, i try everything to lover inflamation, all the best😊😊

I have FND. When I put my feet heel to toe, I fall over.

Hi! How long had you taken Clonazepam? Your daily dose 4mg you deleted on twice for 2mg?

Thank you!! My doctors are trying to figure out if I have this and it’s been exhausting

Hello hope you will be fine . what happened in your trip to Vancouver , how was it and what did the doctor do to you?❤❤❤

Hello, I also have FND and dysautonomia. In my country, FND is not recognized as a disease, so it is practically impossible to get disability support. I have trouble walking and experience fainting episodes, but I still work as a university professor. However, my condition has progressed, and it’s now difficult for me to even take a few steps. I completely understand the debts it generates; I have to pay for consultations, physical therapy, etc., and everything is very expensive. At least I have to go to a private hospital because, in a public hospital, they would just say it’s stress. Stay strong!

I'm so sorry about the financial struggles. Chronic illness affects so many areas of our lives. I wear pyjamas, oodies and stuff like that most of the time. I cant tell you how much it helps that you talked about that and wore your housecoat. Which looks great, by the way. It normalises it. I don't change clothes for days at a time etc. I find it nearly impossible a lot of the time. Its always lovely to see a video from you. Aw your cat is really sweet! He/she has just made an appearance as I'm watching this! Anyway, take good care of yourself.

I'm in the same boat. Can't get disability due to my wife making too much money. As I don't have any incoming g income, the debt consolidation option doesn't work. They said co.e.back when you are working again. Have been trying to get work for a year and haven't had any luck. Wishing you the best. I'm in Canada, too and trying to see.my neurologist take forever. (More than 8 months now)

Just be you! Sending you love and strength.

That's awesome that you are able to go & get checked out & be heard. Ive had fnd 2 yrs now everyday is a challenge but gotta keep trying ive been my own advocate, since Drs. In michigan do not understand fnd. Keep up the good work & wish you luck look forward to hearing your update. Merry Christmas & a Blessed New year🌲🙏

It’s nice to see you back. I have been following you for a while. I also had COVID before my FND got bad, but I feel my FND was more from a nervous breakdown and just escalated from there. I never hit my head (unless as a child counts). My symptoms came on more when I took a medication a psychiatrist gave me. I only took it for 2 days and the 3rd day it was only half a dose before I quit. I hate taking medication because I fear side effects. From there it was like a switch, it seams like I developed turrets. I don’t actually know the root cause, but I’ve learned to live with it and be grateful that i don’t get full blown seizures and my gait is fine. I hope you keep posting because it does help others process what we are going through. Merry Christmas!

❤not only beautiful but very creative. I’m inspired to try something on my wall now!❤ I always appreciate your courage to share your life story with the good and the bad. As a fellow artist and FND sufferer myself, you have helped me to feel less alone in this world and inspired to continue to live my life not just shut down completely and give up. Because that is something that I find to be very hard for me considering my long list of chronic illnesses and conditions that I have been struggling through since my mid twenties. I’m almost 43 and I have certainly had a lot of years of hopelessness but I’m more than grateful that I never have given up but I’m also grateful for the strength, courage and resilience that I have gained from the suffering that I have endured and the incredible insight into what it means to be happy and the enjoyment of the moments that I used to overlook and I couldn’t even begin to appreciate the beauty that this universe has to offer. I have to thank you for being a great blessing and contribution to my journey you have provided me with your amazing authenticity. You are more special and inspiring to this world than you give yourself credit for.❤

glad to see you and I wish you have a fruitful journey to Vancouver keep us informed about your progress . Merry Christmas and a happy new year.

It's really good to see you again. I love your updates. It helps to feel less alone

Thanks for sharing. I was diagnosed in March when my whole world flipped upside down and nothing is the same. No job, driving, independence, I can walk again most of the time now, my vision is off, my voice not mine, just to name a few… I happened to find an online class taught by a Dr in Colorado who has been caring for FND patients for 20ish years. I just finished this FNDcourage course. Another one starts in January and I HIGHLY recommend it. I’ve been fortunate to have good medical care since diagnosis, but so many people in this course had not. And even with my care, I’ve learned SO much about how our brains and nervous systems are wired and why our bodies do what they do. The lectures and the study groups are full of information there is no time to learn in Dr appts. I learned how to manage physical and mental frustrations with FND. Ex. Understanding why seizures happen and how to manage. Or paralysis. No one gets cured from FND, but the goal is to live life in spite of it. I’m excited for that. I have knowledge and resources and a connection to a much bigger FND community now, and I will be forever grateful for it. Anyhow, I’m so grateful for you sharing your story. We all need to encourage one another. Hang in there.

It is really nice to see a video from you. I don't know anyone in my real life with FND, and it is nice to hear other people's experiences even if it is just online. FND has really slowed down the trajectory of my life also and it has made me scared to go out in the world. I've also had lots of testing, for some reason doctors love to tell you to take the same test again except with their people or whatever, but it has all come back normal (hence the FND diognosis). I was diognosed with Tourette's syndrome by some quack neurologist first before my dad discovered FND online and found someone to test and diognose me with it. If you are looking to get diognosed with POTS you want to get a tilt table test. I wish you the best of luck and hopefully you'll be able to get more appointments and testing now. I'm about to try dialectical behavioral therapy to see if it helps with my mental health and FND. I've heard that ketamine alongside therapy can help with neurological disorders like FND, but I didnt find ketamine helpful.

I have been wondering how you are. Very glad to see you again!!!

I’d love to know how you are doing now

Does anyone get angry b4 or after a dissociation. Top tip avoid screens getting over tired and pushing to do a list of things. Write one thing to do that day.

I agree with a lot of your sentiments about medication and doctors. Trying to come off klonopin and it’s the hardest thing I’ve ever done in my life.

Yike that medication was horrible to come iff of abd actually caused my fnd 😔

Thank you for sharing. I have a diagnosis of Bipolar 1, severe GAD, mild learning difficulties following stroke, and some other medical issues. Antidepressants did not work at all and some made me feel worse. Pregabalin did improve my anxiety symptoms for quite a few years, as did Diazepam. However i heard that they were addictive, so asked my psychiatrist to reduce and discontinue these. The Doctors did this, however i felt too quickly. I was left suffering severe itching causing insomnia, bad nausea leading to weight loss, almost fainting due to pulse of 130, restlessness but also fatigue. It has been quite annoying that even months after the last dose my symptoms have not really gone away. I am actually taking three extra antihistamines and an extra antipsychotic! This medication has the worst protracted withdrawals of all the medications ive been on - and i have been prescribed a lot! I am not taking medication for anxiety now, nor do i wish to. I am happy to take my Bipolar meds and my physical health meds to prevent another stroke. Thats all. Physical withdrawals from Pregabalin have been shocking and four months after my last dose are still there! Im glad you are doing this very slowly. If you did it as quick as me youd be suffering a lot more. Doctors should be aware of this and plan a taper to minimize suffering. Good health to you! God Bless.

I take this drug to help control my cataplexy which is associated with narcolepsy apposed to depression, however I have also been diagnosed with depression. I have been taking 175mg modified release daily for about 17 years. Recently maybe due to other events in my life I have been questioning certain side effects. Does anybody feel that this drug numbs your brain’s ability to fully understand consequence? I live in the UK and since Covid have no support from my specialist and i feel they don’t really understand or want to listen to me It’s totally ruining my life and having spend so long on this drug I feel I need more input from people who actually take it so videos like this are so helpful to me If anyone can offer any advice please please do

Thank you for sharing your experience <3 It means a lot and makes me feel less alone in saying that there's hope. I'm on 300mg, and I can't help but tend to abuse it there and then, and hearing about other's reactions to their withdrawal honestly makes me anxious even with me floating around the idea that I have Xanax as a plan B to taper down but thank you for this, you encouraged me to see though.

I've had 2 failed back surgeries (laminectomy) in 2021 and 2023 and have had weakness and pain 24/7 on both legs. Was taking Gabapentin 100 mg since 2020 but doesn't help. My PCP prescribed Pregabalin 150 mg 2 x day but because of reading and watching side effects, I opted not to take them and just keep bearing with the pain. Afraid to take the risk since I had a heart attack/ triple bypas/stroke in 2020!

I have always exercised... I had a panic attack in the car because I worried too much about my disabled son... this medicine or whatever they call it... gave me real nightmares... pressure on my chest... cardiac arrhythmia... restless even when I was in bed.. depression and anxiety we will always have, it is part of life.. just live with it and deal with it..

I’ve been on it for 24 years, yes 24 years and I can tell you right now the withdrawal effects are so bad when you miss a dose they have almost driven me to suicide. Electrical shocks in the brain, nausea, unable to think clearly, heightened anxiety, trembling.

Hello, please learn about Islam and read the Holy Quran. It is the best book I advise you to read in your entire life. Thank you.

Quarter reductions are no joke, I was told it was a small reduction! A month into my taper and starting to get over some of it

Thank u , u don’t look bad at all on your tapering , you seem pretty happy and you are thankful , that’s nice hope you are doing great by now

I'm on 1mg of klonopin. Thinking of starting a taper. I'm hoping a slow taper of a decrease of .25 every two to three months. She wants to add gabapentin during the taper. Any opinions on my plan, please feel free. Best to you in your taper!

Thank you for sharing. My 32 yo son just got diagnosed in August and we as a family have been trying to learn more about FND.

Thank you for sharing with us

I am NOT a medical professional. Lol. But, maybe ask around about Trintellix for another drug that works on Serotonin as well. It is a unique one. But, not used for seizures. Helps brain fog, and you feel like yourself I think. Not too numbed out.

this medicine destroyed my moms liver!

Good for you to be on asexual spectrum

What if I manifestes almost everything, but at the same time get sick and even I belive and manifest as I can, health go still down, chronic infection

Cassey, have you ever put a 9 volt battery up to that nose ring? Try it!

I am currently coming off clonazepam I’m on an 8 week weaning off , i as taking it for 4 years for my anxiety and I found out it causes dementia for prolonged usage .

Im on week three off venlafaxine my psychiatrist didn't wean me properly the withdrawal was so hard but i got through it thank goodness 🎉 What helps me now is a clean diet no sugar carbs and low salt & taking a supplement called ashwagandha has helped tremendously. Im finally starting to feel again ! One day at a time we'll recover ! ❤