Video

Don't give up

agreed… the authors’ position on fnd was oddly inconsistent. if they believe, as mentioned later on in the article, that fnd has increasingly identifiable neurobiological markers, then they might recognize that long covid patients & fnd patients are actually in a similar boat: trying to access support & treatment for disabling conditions with common symptomology whose etiology & ongoing mechanisms are incompletely understood at this time. they should have been advocating on behalf of fnd patients when they realized how inadequate their treatment options were; instead, they just tried to differentiate their long covid patients from fnd patients (via outdated conceptualizations of fnd) in order to prevent the long covid patients from experiencing the same fate of inadequate care as the fnd patients. & why werent they curious about shared features (e.g. comorbid dysautonomia, autoimmune dysfunction)? …disappointing. thanks for sharing your knowledge & perspective.

And the answer was… well all of the above AND I forgot to take my meds this morning 😂 for everything.

This reminds me of my father supporting sick me. What a song!

Thanks to @BrandiCarlile for writing the perfect song.

Nice smile

Where are you from

How old are you

Nice

Awesome

Nice

Awesome

You are absolutely gorgeous ❤

How old are you

Where are you from

Nice

Beautiful

Nice

Super

Awesome

Nice

No way?? You have a beautiful voice, nice high note 👊🏻

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i love your voice, keep going

Sweet girl, I have so much love for you. I can hear this song coming straight from your heart. You are right, you know - you will be found - by the One who loves your soul eternally - Jesus. He's right beside you. Thank you for sharing your heart.

Angelic voice ❤

Maybe about suffering and feeling some healing after a time...I feel sadness in your voice but it's a kinda like beautifully broken. ❤ the broken hearts are the best ones.

great

It's very scary to have Nocturnal Seizures. Because of SUDEP. Glad you don't have and need epilepsy meds!!! Have you been tested for Sleep apnea... anyone can have this...and don't have to have to have the breathing issues or snoring...and can mimic nocturnal seizures. The Cyst on your Vagus Nerve = FND symptoms makes so much sense. They attach the wires for VNS on the Vagus Nerves. AND have you tried EMDR??? You're a smart little cookie. Hope you get a medical degree with all your experience and research... chickadee!!!

What questions do you have for Dr. V?

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😊

I need to talk to you urgently

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!

🔝🔝🔝

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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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.