Tics on a bad day
2:08
8 ай бұрын
I Took A Break | FND Update
10:52
Жыл бұрын
1 Year Anniversary FND Diagnosis
16:28
Пікірлер
@user-dv1jz5od6k
@user-dv1jz5od6k Сағат бұрын
Hi! How long had you taken Clonazepam? Your daily dose 4mg you deleted on twice for 2mg?
@azaliebaumann3572
@azaliebaumann3572 6 сағат бұрын
Thank you!! My doctors are trying to figure out if I have this and it’s been exhausting
@amanigh2189
@amanigh2189 2 күн бұрын
Hello hope you will be fine . what happened in your trip to Vancouver , how was it and what did the doctor do to you?❤❤❤
@casseyklie
@casseyklie 2 күн бұрын
@@amanigh2189 hiya! I haven’t been to Vancouver yet. Not for a few months. They will call me when they have a spot available for me
@mariel6201
@mariel6201 2 күн бұрын
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!
@casseyklie
@casseyklie 2 күн бұрын
@@mariel6201 oh wow holy smokes good for you for still working! Ugh how frustrating that fnd isn’t recognized.. wishing you some ease and peace on your recovery journey 🫶
@filmfan3697
@filmfan3697 3 күн бұрын
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.
@casseyklie
@casseyklie 2 күн бұрын
@@filmfan3697 thanks for sharing that. I find if i try to dress up it just causes a lot of discomfort and also its tiring.. im on a mission to make my wardrobe more comfortable. And my kittys name is monty 😌 sending lots of love! 💕
@filmfan3697
@filmfan3697 2 күн бұрын
@casseyklie Aw Monty is beautiful! Lots of love to you too x
@tylerhamilton9564
@tylerhamilton9564 3 күн бұрын
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)
@casseyklie
@casseyklie 2 күн бұрын
@@tylerhamilton9564 goodness that is really stressful. Thats a reason why i dont want to marry until i can support myself because they would take my disability away as well. Yes the work thing is hard too which our limitations. It sounds like youre trying hard though, dont give up. Yeah ive also been waiting a few years to see a specialist 🥲 but sending good vibes to a fellow Canadian 🫶
@flower-forest
@flower-forest 3 күн бұрын
Just be you! Sending you love and strength.
@casseyklie
@casseyklie 3 күн бұрын
Thanks dear 🫶
@MarieBlackburn-l9t
@MarieBlackburn-l9t 4 күн бұрын
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🌲🙏
@casseyklie
@casseyklie 3 күн бұрын
@@MarieBlackburn-l9t yes stay strong! Use your voice and stand up for yourself and never give up on that. Happy holidays love 💕
@alinabohn765
@alinabohn765 4 күн бұрын
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!
@casseyklie
@casseyklie 3 күн бұрын
@@alinabohn765 hi lovely, thanks for writing and sharing that. Its so interesting the things that can trigger it. I do believe it’s quite complex and can have many factors to it. Thanks for the kind words. Happy holidays 🫶💫
@sonjamurphy
@sonjamurphy 7 күн бұрын
❤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.❤
@casseyklie
@casseyklie 6 күн бұрын
@@sonjamurphy Sonja! You bless my heart. What a lovely message. Thank you for sharing that. I’m so glad that you never gave up and kept a connection to the divine. The universe loves you and wants you ❤️ sending so much love to you
@amanigh2189
@amanigh2189 9 күн бұрын
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.
@casseyklie
@casseyklie 9 күн бұрын
@@amanigh2189 thank you so much! Hope you have a peaceful holiday 🫶
@filmfan3697
@filmfan3697 9 күн бұрын
It's really good to see you again. I love your updates. It helps to feel less alone
@casseyklie
@casseyklie 9 күн бұрын
@@filmfan3697 bless your heart 💜 that makes. Me happy to hear. Sending so much love
@filmfan3697
@filmfan3697 9 күн бұрын
@@casseyklie And to you x
@letitiabartow9683
@letitiabartow9683 10 күн бұрын
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.
@whimsyelf7832
@whimsyelf7832 11 күн бұрын
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.
@casseyklie
@casseyklie 11 күн бұрын
@@whimsyelf7832 hiya! Thanks for sharing. It’s so funny that drs do that. Thinking that they might know better. What was ketamine therapy like? I’ve been thinking about psychedelic therapy! Sending lots of love 💕
@whimsyelf7832
@whimsyelf7832 11 күн бұрын
@casseyklie I did intranasal ketamine under the brand spravato and it's done in a clinical setting. I did it for a month a couple times a week and found it didn't help my mental health. I found the trips were upsetting and I would question reality and fundamental rules of the world and society. But everyone has different experiences. I also read after the fact that you are supposed to do it alongside therapy for it to be most effective.
@flower-forest
@flower-forest 11 күн бұрын
I have been wondering how you are. Very glad to see you again!!!
@casseyklie
@casseyklie 11 күн бұрын
@@flower-forest awe you warm my heart! Sending love ❤️
@Usman_Chaudhary.
@Usman_Chaudhary. 11 күн бұрын
Nice to see you back on the channel, hope you are well now. I am Usman and have been following you for a year,!!! Cassey you look like better confident
@casseyklie
@casseyklie 11 күн бұрын
@ Hi Usman! Thanks for the follow I so appreciate it.
@Usman_Chaudhary.
@Usman_Chaudhary. 11 күн бұрын
@@casseyklie keep posting videos
@letitiabartow9683
@letitiabartow9683 16 күн бұрын
I’d love to know how you are doing now
@casseyklie
@casseyklie 11 күн бұрын
I just uploaded a new video 🫶
@AnnetteLindley-im7kj
@AnnetteLindley-im7kj 28 күн бұрын
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.
@casseyklie
@casseyklie 11 күн бұрын
I definitely get angry after
@wormplanet
@wormplanet Ай бұрын
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.
@Zero-Cool_
@Zero-Cool_ Ай бұрын
Yike that medication was horrible to come iff of abd actually caused my fnd 😔
@paulineiqbal5948
@paulineiqbal5948 Ай бұрын
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.
@lauragallop2916
@lauragallop2916 Ай бұрын
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
@555Mylann
@555Mylann Ай бұрын
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.
@monc81
@monc81 Ай бұрын
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!
@zekia9793
@zekia9793 Ай бұрын
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..
@Lee2k4
@Lee2k4 Ай бұрын
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.
@aidibachir6085
@aidibachir6085 2 ай бұрын
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.
@wormplanet
@wormplanet 2 ай бұрын
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
@jucasan19
@jucasan19 2 ай бұрын
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
@tonyak8354
@tonyak8354 2 ай бұрын
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!
@amyhart4032
@amyhart4032 2 ай бұрын
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.
@Jill.Know65
@Jill.Know65 2 ай бұрын
Thank you for sharing with us
@terriealabama7612
@terriealabama7612 2 ай бұрын
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.
@cityofangels4874
@cityofangels4874 2 ай бұрын
this medicine destroyed my moms liver!
@carmenelektra6099
@carmenelektra6099 2 ай бұрын
What!!????
@jeddred-e3m
@jeddred-e3m 3 ай бұрын
Good for you to be on asexual spectrum
@grawtex91dnb70
@grawtex91dnb70 3 ай бұрын
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
@jimferrill1790
@jimferrill1790 3 ай бұрын
Cassey, have you ever put a 9 volt battery up to that nose ring? Try it!
@kimadams6489
@kimadams6489 3 ай бұрын
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 .
@ButterflyHustles
@ButterflyHustles 3 ай бұрын
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 ! ❤
@karenmartin4479
@karenmartin4479 3 ай бұрын
I tried coming off pregablin for generalized anxiety and depression I take 450mg three times a day,with theses symptoms I get very bad diarrhea, shaking hot and cold,can't balance properly and slurred speech headache and hallucinations paranoia these symptoms,soon stops when I start taking pregablin again
@steveweiss6442
@steveweiss6442 4 ай бұрын
It works great for my Vertigo which is a crippling disease of the inner ear that I have had my entire life! 🤪
@darryldickerson9079
@darryldickerson9079 4 ай бұрын
Been on 600 mg a day for 6 years ,DONT TAKE IT ,,your body get addictive to it without you knowing, trying to come off is terrible side affects horrible
@insanestuff9470
@insanestuff9470 4 ай бұрын
What to do being scary on this withdrawal symptoms 😢😱 Even this is not prescribed for anxiety 🤔
@bluespruce786
@bluespruce786 4 ай бұрын
I clicked the link because I thought it was a word from the astral. Do you take any THC products, Psilocybins or LSD? Great review, thanks for posting ♥ I'm grateful for the whole thing, the whole universe, even with the ups and downs and struggles and triumphs and confusion its wonderful!
@garretfey6326
@garretfey6326 4 ай бұрын
I do a couple every week just for buzz and really good sleep, do drink with them. Just doing one day I get 2 days of withdrawal. Itching, moody, fog. Could not imagine someone doing this shit all the time
@paulineiqbal5948
@paulineiqbal5948 Ай бұрын
I was taking 600mg pregabalin for severe GAD for years. I reduced and discontinued. I had my last tiny dose four months back, and none since. I am still having hellish physical withdrawals and for this I am taking three extra antihistamines and an extra antipsychotic! Pregabalin is really not to be messed with babe. To be honest I never had problems like these when I quit smoking weed back in 2016. Pregabalin has to be the worst!
@Vvokhalid
@Vvokhalid 21 күн бұрын
​@paulineiqbal5948 are the withdrawals that bad? I took 150mg twice a day so 300mg per day for 4 months and now im planning cold turkey + use propranolol to help a bit, is cold turkey a good idea?
@lisa70-v6l
@lisa70-v6l 4 ай бұрын
Miss you and hope you are well
@holdingcopsaccountable6554
@holdingcopsaccountable6554 4 ай бұрын
I don’t understand why anybody can say it feels so real. don’t even remember the beginning. Don’t even remember the end and nothing in between. You just wake up. Glad I woke up though.
@08emily89
@08emily89 4 ай бұрын
This makes me feel AMAZING. I have so much energy and it doesn’t affect my appetite and sleep.
@SuperBarca1984
@SuperBarca1984 4 ай бұрын
I have just been prescribed Effexor,, i am really afraid after reading those negative feedbacks😢
@awernesschool
@awernesschool 3 ай бұрын
I am using effexor for my depression. And brain pain it helpt me a lot with depression i am on 225 mg ik took a few weeks to work in i hope it works for you let me know ❤
@SuperBarca1984
@SuperBarca1984 3 ай бұрын
@@awernesschool well i had allergic reaction to it ,, it was a three days ride ,, first pill hit me hard,, i am on prozac now. I hope we both get through it ❤️
@ashiebriggs5662
@ashiebriggs5662 28 күн бұрын
How did it go? My neurologist prescribed this to me 2 days ago.. I bought it but don't want to take it after watching lots of videos and reddit search.
@KarsonsChannel
@KarsonsChannel 4 ай бұрын
Have you been tested for covid or cirs or lyme?
@philcooke87
@philcooke87 5 ай бұрын
No need to apologise, we understand, we are all going through this, different symptoms and new ones arrive, we are the strongest people, its night time here now in the uk and i am dreading sleep as i know il wake up ill in the early hours of the morning shaking and sick.. sending u love
@casseyklie
@casseyklie 5 ай бұрын
@@philcooke87 much love 💗