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Do you think transitioning between phases of sleep could trigger FND seizures?

Hey Chickadee, did you bump ya noggin...?

A living legend and a mesmerizing voice 🥹❤️✨

Put your story here to amplify the impact kindness has in healthcare and patient outcomes...when is a time a healthcare worker was kind to you + what impact did that have? Lets celebrate the good!

Em that's easy for you to say lol😊

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I need to talk to you urgently. If I've not mistaken, I've messaged you on Facebook. If that's not you, please let me know how I can contact you. It's a humble request.

When does this manual come out?

Amazing. Great job!

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Beautiful voice and lovely melody. Please keep up the good work. All the best to you. ❤

:What’s one thing you’ve loved your entire life, and how was that shaped your FND journey?

Thank you! I was diagnosed with FND in 2022. This is the perfect video to show family so they understand why noise and light are big triggers for me. You explained everything beautifully.

Get some sleep girly! You can do these videos but can always wait til your home. Have you had any genetic testing...? I am probably pursuing genetic testing for something called Turners Syndrome. Anyways food for thought.

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Your videos are very good and your editing skills are excellent, but your videos are not reaching many people. The main reason for this is that your videos are not SEO optimized. I am a UA-cam video SEO expert and would like to optimize your videos. Are you interested in this?

Update: epilepsy focused MRI on Monday (which I’ve never had apparently?) w/spine MRI for neuropathy in feet, severe back pain, and unaligned shoulders (who knew? Neurologists are very observant), continuous eeg starts Tuesday - Friday, still waiting on results from day three hour one with hyperventilation (triggered 2 min seizure) and light stimulation (that was fine), cardiac testing for two weeks starts Friday outspent due to high heart rate and qtc issues during seizures and during the day when not sleeping, then extreme bradycardia in my sleep (lowest was 28 bpm highest overnight -apparently I like to scare night nurses, and was 206 during seizure -which has always been true even during my FDS). The good news of with antibiotics, my infection markers have made improvements and I am now off them completely and have been fever free for 24 hrs. Additionally, even during nocturnal seizures my oxygen saturation and lactate has been stable, indicating that it likely isn’t epileptic. Unfortunately I am still needing constant suctioning for vomiting, foam, and blood during seizures, indicating they might be. Lmao. The seizures are very different from my FDS because my eyes are open, I don’t blink or flinch to stimuli, Only last for a few minutes, I tend to vomit/bite my tongue, am incontinent, and most importantly have zero awareness/memory of the episode which I have historically with FDS. I also have started having absence seizures that last max 45 secs. So, as always, I am complicated and there are conflicting pieces of evidence pointing either way. 1:1 nursing given the frequency of seizures and the risk of aspiration on vomit if they don’t come to my room fast enough. I have started taking a short term medication to try and stop the seizures -if they are epileptic, it should reduce the frequency. If they are FDS, it should help sedate me at night and reduce my seizure threshold bc it can also be quite sedating/calming. They are only using rescue meds if my heart rate exceeds a certain number, I desaturate (only happened once), or it lasts longer than they are comfortable with based on how the seizure is presenting (no arbitrary number given my diagnosis of FDS which are known to last much longer). I am very grateful for the neurology department here because they have stopped giving me kepra loads, which elevated my heart rate and made me extremely anxious when I came out of it. The consulting neurologist was very kind. He said, no matter what the outcome of all these tests are -Fnd, epilepsy, cardiac, etc. my seizures are clearly very real and I am deserving of treatment to get better. It is not for attention. God, I wish I had him when I was first diagnosed with Fnd. My best guess? Fnd. My symptom presentation has always been extreme, strange, and constantly developing/changing. With that being said, I am listening to countless providers concern that something more is going on. No matter what, I still have FND and need to work on that in addition to if something else is going on.

greetings from germany!! keep up the great work :)

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I love this. When I'm feeling low I reach for my acoustic guitar. Usually Townes Van Zandt or Fionn Regan..

Muy lindo! Saludos desde Buenos Aires, Argentina.

Just came across your video on recommended, you have a lovely voice and I wish you a speedy recovery!

Life update because I can’t film right now. I was admitted overnight for the antibiotics and seizure monitoring. They tried a new med before I went to sleep (clobazam) to see if it would help me relax and reduce seizure threshold. Unfortunately soon after I feel asleep I had a pretty severe tonic clinic seizure that resulted in an emergency button being pushed due to severe desaturation in oxygen. Due to this and a high lactate, I was given rescue lorazepam and then IV kepra, which spent the seizure say t=7 min. I had three more overnight, and received two more doses of Ativan and one more load of kepra. Just to be clear, anticonvulsants aren’t given for FND seizures, but they are concern for other infectious or epileptic seizures currently with me. I have not been diagnosed with epilepsy, but there are some warning signs emerging -just to be clear, this not an official diagnosis, I still 150% have FND and this would be a comorbidity. Because of the hospital I was admitted to not having a strong neuro department, and them feeling very overwhelmed by the complexity of my case, I am transferring care to elsewhere as soon as my insurance and FND home base team approves it.

I hope you get better soon!

Chriskent helio love you 😍❤ 😘♥ 😍 ❤

Is that like blood flow to the penis to make it enlarge bigger

Any tips? I'm all ears. I bought a mouth guard to start wearing tn, and have been gargling salt water like nobody's buisness, but please if you have any other ideas/suggestions I am truly desperate.

My instict is to make light of the situation which my therapist would get mad at me for.. but does anyone else find oddly satisfying how much darker the gauze is at the end of the video? LMAO like I know it's a bad thing but it is cool to see.

Ah, Teja, your sweet, powerful emotional singing, with your very personal story are so amazing. You have, and you will, touch hearts with this very important message. Be blessed, Bill

One of the things I meant to say -but spaced, is that being low income and/or experiencing racial discrimination can be a form of chronic/complex trauma, which put people at higher risk of developing FND. So the the people at the highest risk for development of the disorder -due to its etiology, are the least likely to get care for it.

I’m so excited to leave I can’t believe Didn’t know how much this place wound remind me Of a person I left behind, so why can’t I breathe? Please god, escape the terror in my body I would do anything To defeat the internal war Between body + brain With a choice Please what am I being put through this for I needed to stop For once once where is my voice It’s lost admist the noise You took the broken pieces of me and made me believe That I did it intentionally Sweetly why can’t you see How much I crave to be whole Please god, is that enough to fix me? I would do anything To defeat the internal war Between body + brain With a choice Please what am I being put through this for I needed to stop For once once where is my voice It’s lost admist the noise My lights dim, but there’s a voice in my head that says hold on to hope I am bigger than broken pieces of a past, that keep coming back So do anything To defeat the internal war Listen to your body Fight to gain its trust back I don’t know what this is for But I am stronger Hear my voice It’s louder than their noise

your very strong and brave

This makes me wonder even more how many with FND have connective tissue disorders or differences like EDS and HSD and if that could be one of the underlying biological issues. i'm not a biologist or medical person in any way but my physio explained that EDS and HSD can mean the veins are flaccid and not well supported and that that can be behind dysautonomia (POTS, other OI). Wonder if there could be something similar affecting the nervous systems in patients with FND. Hypermobility is very commonly co-morbid in other conditions of the nervous systems, like autism and ADHD. Thanks for the interesting videos.

Is there a connection between FND and hypermobile Ehler-Danlos Syndrome or Hypermobility Spectrum Disorder and/or POTS or other dysautonomia? Sounds like a lot of overlap in the co-occurring conditions: chronic fatigue syndrome, fibromyalgia, sensory processing difficulties, proprioception issues, chronic pain, anxiety, sleep issues, etc. For myself, I have chronic fatigue syndrome, HSD (with joint instability), dystautonomia, proprioception issues, dyspraxia, autism, ADHD, anxiety, sleep issues. As far as I know I don't have FND. I don't have any seizures or a movement disability apart from dyspraxia/autism. By the way, have you checked your Beighton Score? i'm not an expert, but how you hold your hands looks a little similar to my hands, (Hope that's not intrusive. It might also just be that i'm hyperfocussing on people's joints since finding out about my own connective tissue issues). edit to add: urinary incontinence is also often co-orcurring with hEDS, as is pelvic prolapse.

GHS will always have a special place in my heart, and I’m so grateful for the years I spent there. I witnessed students come together in ways I couldn’t imagine through my time with Bulldogs minds matter + Covid. But my heart breaks. This is the fourth shooting this year. To the friends of the student who died, I am so sorry. He deserved so much more. You do too. Feel sad. Feel mad. And use that. I wish I was there to give students, especially those that I know through my brother’s class, a giant hug. You should be celebrating graduation, but instead are grieving a classmate who tried to what was right. I know it seems impossible right now. But it will get better.

GHS will always have a special place in my heart, and I’m so grateful for the years I spent there. I witnessed students come together in ways I couldn’t imagine through my time with Bulldogs minds matter + Covid. But my heart breaks. This is the fourth shooting this year. To the friends of the student who died, I am so sorry. He deserved so much more. You do too. Feel sad. Feel mad. And use that. I wish I was there to give students, especially those that I know through my brother’s class, a giant hug. You should be celebrating graduation, but instead are grieving the loss of a classmate who tried to do what was right. I know it seems impossible right now. But it will get better.

Clinical features of PNES: ua-cam.com/video/Xe2FAa_ykoQ/v-deo.htmlsi=vM5bPkjSKsDS1fGT

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Such a great conversation. I have no experience with FND, but had to begin navigating the health system in major ways because of chronic illness starting from when I was in university (I'm graduated and 25 now.) I remember first hitting that wall of 'we don't know what to do with you, sorry.' Devastating to experience when you are suffering every day. You don't know where to look or what to do. This is a very important channel! Thank you both so much for sharing your experience

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can you upload videos of your seizures?

Love you, T

What is FND

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