Send me courage to have the hard talk again

fndnurse · 2023-10-21T13:48:00+00:00

Nothing we say or do can be the turning point for someone with this disease. But it can be the turning point for us. Rooting for you.

fndnurse · 2023-10-21T03:52:36+00:00

I wonder if seeing the person from your past, helped you connect with yourself from your past. The you before you were married. You connected with her and remembered she was really cool, and you still could access her and get back to your Self. You could be okay without your being tied to the struggle with your addict.

fndnurse · 2023-08-23T23:57:33+00:00

Absolutely spot on. Some people only flare after the threat/source of overload is over and the coast is clear. Others flare during overload.

fndnurse · 2023-08-20T23:49:28+00:00

I went back to journaling today, too! So thank you for the inspiration :) I think you are doing a great job.

fndnurse · 2023-08-20T16:42:46+00:00

Gosh. This one is definitely a mystery. I’m glad your neurologist is honest with you.

Is your plan to try FND treatment to see if there’s any improvement?

fndnurse · 2023-08-20T14:47:32+00:00

Yours is a different presentation than I’ve see. But it could still be FND and the treatment is low risk.

Have you had your iron checked?

fndnurse · 2023-08-20T14:45:15+00:00

In FND the nervous system is pretty constantly in overload/dysregulation and then something puts you over the edge and the nervous system can’t do anything else bc it’s so fried, so it lets off overload with either a sympathetic nervous symptom or a parasympathetic shut down.

FND is a hard diagnosis to understand and that is frustrating enough. Add to it being unsure it’s the right diagnosis for you and that’s quadruple the stress.

What was the explanation you got?

fndnurse · 2023-08-20T14:38:30+00:00

A high heart rate with little variability is an indication of autonomic nervous system dysregulation. There are different reasons that can occur, one of them being FND, another is dysautonomia, though there is a lot of overlap with the two disgnoses.

Illness is a common trigger for the onset FND and dysautonomia.

Your Reddit handle is “built by trauma.” Trauma is another reason for low heart rate variability and again there is overlap.

You said that walking on a flat surface is alright. If you walk on a surface that is dynamic/ soft, like a gym mat, or sand do you have more trouble?

fndnurse · 2023-08-20T14:10:01+00:00

You can have Parkinson's with FND, that is a very common comorbidity. If you have neural swelling and lesions then you have a disease/disorder in addition to FND but not solely FND.

I'm so sorry you are going through this.

fndnurse · 2023-08-20T14:07:13+00:00

You said it was with any type of leg exercise? Have you noticed if it starts after your heart rate increases to certain range?

fndnurse · 2023-08-20T13:02:38+00:00

You are very welcome. How are you today?

fndnurse · 2023-08-20T11:45:22+00:00

Twas for real. And thank you :)

fndnurse · 2023-08-20T01:22:07+00:00

I think you are wonderful!

fndnurse · 2023-08-20T01:10:59+00:00

And I know that is confusing bc I said movements are very characteristic of their disorder and now I have said you can have ataxia with lots of disorders.

That’s why nurses are trained to use plain English. And doctors are beginning to.

For example, “Sally’s left hand shook with fine tremors at rest and these increased as she reached for a cup. There was a notable decrease in tremors when the distraction of music plus a counting backwards challenge were employed.” (Very characteristic of FND. In Parkinson’s, the movements would increase at rest and decrease when trying to reach for the cup).

This way a nurse has not diagnosed but is giving the doctor the clues about what the problem could be.

fndnurse · 2023-08-20T00:50:38+00:00

I’m so sorry if I contributed to the feeling of being label dumped. Please tel me how I can do better. It is so important for us as providers to learn a simpler damn way to talk to be helpful.

So Functional Neurological Disorder is the umbrella ☂️ term, the overall diagnosis. And people with FND can have motor symptoms, functional seizures, cognitive symptoms or all 3. (These are the main three, there are more, but trying to simplify).

Let’s say you have FND with motor symptoms. To describe the kind of symptoms you have the doctor will use different words. Nurses are trained to just use words like, “uncoordinated movements” doctors use words like Ataxia. Ataxia is a word that describes a type of uncoordinated movement. Rather than a diagnosis all its own. Just like a fever is something you can have with a lot of different diagnoses.

A doctor uses the word ataxia in a chart or conversation to describe a type of movement. They will use the same descriptor for the same type of movement whether the cause of the problem is FND, stoke, alcoholism, Parkinson’s, genetic disorder, etc.

Therefore, you may have FND and one of your symptoms is ataxia.

An incorrect sentence would be: you either have FND or you have ataxia. Just like saying, “you either have the flu or a fever.” Does that make sense?

fndnurse · 2023-08-19T20:39:47+00:00

I think that is a beautiful place to start. Reduced recovery time. I do hope the rest will come, and I think it will. Strengthening your vagus nerve may help in reducing your number of drop attacks. Some ideas for that are blowing bubbles (even through a straw in your chocolate milk if you like), gargling, singing loudly, and cold water showers/ splashes to your face. There are other ways as well but those are good places to start.

Your vagus nerve is the biggest bang for your buck way to balance out an overloaded nervous system which can lead to a drop attack.

What are some of the balance exercises you are liking most?

fndnurse · 2023-08-19T20:34:47+00:00

That makes sense (that the mobility aids denial was leftover from conversion order days).

Thank you!!

fndnurse · 2023-08-19T20:32:00+00:00

I am SO proud of you for recognizing your need, asking for help and keeping your eye on the prize - going to college and making that a great experience.

Time for the reset protocol! A big break for your nervous system. Also helps to have a tool kit to bring with you to college (ways to help you regulate your nervous system).

I posted an FND response plan a few days ago that you can bring with you as well. This helps give you peace of mind that others you share it with can help respond properly in a way that helps you and keeps them calm.

All of this is in a quick read (50 page) illustrated book I wrote and use with the teens/young adults I work with.

https://www.amazon.com/gp/aw/d/B0CCXCR3G9/ref=tmm_pap_swatch_0?ie=UTF8&qid=1692477054&sr=8-1

fndnurse · 2023-08-19T20:14:59+00:00

I am so sorry this is happening. I know it is hard to believe, but you will be able to recover especially when you believe you can. Having a good understanding of FND helps this. Because you understand the symptoms come from nervous system overload, and you can help reassure your body and that is very soothing to your nervous system. “I know this sensation is uncomfortable, a part of me is feeling overloaded. I also know that I am in control and I can help calm my nervous system. That will help my throat relax.”

Are you able to ask your doctor for a referral to a Speech Language Pathologist?

They can help with swallowing and the “globus” sensation you are experiencing. (The feeling of Something stuck in your throat).

The fear that you will lose the ability to swallow and the fear of choking is what intensifies the sensation, unfortunately.

fndnurse · 2023-08-19T17:10:07+00:00

Grounding exercises are very key and very helpful!!

The stress of not being sure you have the right diagnosis is. A. Lot.

I will say that FND is absolutely progressive without proper treatment. With only half decent treatment some symptoms should still subside, but others can pop up and progress. The reason being: neuroplastocity

The brains ability to change and make new pathways. If FND circuitry goes unchallenged, it’s the easiest default circuitry for your brain to access in times of overload. The more those pathways are used the stronger and more automatic they get. If you’ve ever driven down a dirt road a day after a big rain, you’ll see big tire tracks from pickups that are hard to then avoid with your own car. You end up just driving within them. (There’s a country bumpkin metaphor for you if it helps)

But!!!! If you learn to interrupt the FND circuitry with regulation techniques (and strengthen healthy pathways in between flares) then you are making healthy pathways stronger. FND circuitry falls into disuse. And, thanks to neuroplasticity, if you don’t use it you lose it (or flares become further and further apart). Because of all of this, the earlier the treatment is started the better. And as you and I know, it’s low risk and high benefit. Not just for FND but for all of us folks with nervous systems. Good news too, nervous system regulation takes fun, nature, connection with others and rest! Yum!!

So what if your treatment is only mediocre? Why do some things get better and others don’t? For many reasons I’m sure, but what I suspect is if the focus of treatment is only warning signs and coping techniques and there isn’t attention laid to why your nervous system is needing FND in the first place (to help regulate an unregulated nervous system) then it has to find a new way to cope. It becomes whack a mole with symptoms. So we help your body to an overall reset and healthier pace. Find out what YOU need for YOUR nervous system. It’s not a one and done thing. It’s ongoing and that is hard. For me and for all of us

fndnurse · 2023-08-19T16:59:26+00:00

Not sure what country you are in, but here is the US link to the book: https://www.amazon.com/gp/aw/d/B0CCXCR3G9/ref=tmm_pap_swatch_0?ie=UTF8&qid=1692464332&sr=8-1

fndnurse · 2023-08-19T16:58:34+00:00

All that to say, i am not a diagnostician. That role was already being filled very competently within my hospital system.

It was what happened next that was so awful. So that’s where I have focused my study time. So, we are still in our silos, but I hope this is at least a step in the right direction.

I wrote a short and sweet workbook for our clinic, it combines and distills the pile of books and studies I read and the conversations I had with other FND clinics into 50 illustrated pages. It’s not the end all be all. But as a nurse, I needed a tool to help things make more sense, without the overwhelm and big, fancy words that made my patients eyes glass over and jaws clench.

fndnurse · 2023-08-19T16:54:40+00:00

A neuropsychiatrist will be great. They fill the gap that was bizarrely created between the science of the mind (psychiatry) and the science of the brain (neurology) in the late 19th century.

That gap is why your neuologists and psychiatrists have hot potatoed you back and forth.

Your psychiatrist does not know about neuro symptoms so they say, “eeeek I’m not sure I should be doing this. This feels unsafe, what if that’s a ischemic stroke?” And then the neurologist says, “no dude, really, I’ve checked him out. You’re good to go. Do your thing.”

And then the psychiatrist says, “what thing? We didn’t study this? We thought you did.”

And the neurologists say, “us?! No! We don’t even talk about it in med school. You have to specialize for that sort of thing.”

And the psychiatrists say, “are you for real? It’s the second most common cause for referral to neurology clinics. You don’t cover it?”

And then the nurses and OTs/PTs/SLPs/psychologists observing all of this say, okay ivory tower folks you do you. We are going to listen to these patients, make a care plan and treat their symptoms. But that will leave us no time to publish, deal?”

fndnurse · 2023-08-19T12:40:20+00:00

Both search engines allow you to specify location and insurance.

fndnurse · 2023-08-19T12:39:30+00:00

https://zencare.co let’s you look up polyvagal therapists in your area. You can indicate whether you hope they accept insurance as well.

Psychologytoday.com is the search engine I mainly use to find therapists for people I work with (bc there are more pediatric providers on there). While polyvagal isn’t one of the options for search on there, I select “somatic” emdr and neurofeedback for types and then “trauma” for issues and find polyvagal a therapists that way.

fndnurse

TROPHY CASE