New diagnosis: Hi, I've recently been... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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New diagnosis

ChelseaBlue01 profile image
5 Replies

Hi,

I've recently been diagnosed with FND which is believed to be triggered by PTSD (diagnosed by neuropsychiatrist).

My symptoms are mainly dissociative seizures (kind of looks like I'm daydreaming) where I can hear and see everything but I cannot respond until once I am out of the episode. I was wondering if there was anyone on here with similar experiences. I'm only 22, and can no longer driver due to the episodes still being everyday! I just want my old life back prior to these seizures!

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ChelseaBlue01 profile image
ChelseaBlue01
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5 Replies
Lady4 profile image
Lady4

Hi Chelsea

If you can sense yourself going into a dissociative seizure, try and distract yourself or ask a loved one to see if they can see what triggers you.

There is advice on:

neurosymptoms.org.uk

neurosymptoms.org/en/sympto...

Concentrate on working through your PTSD with the professionals. I wss just goggling how to spell Amygdala (as it sounded different in speech) and found this advise on a medical site (which as basic as it sounds makes sense):

How Can You Keep the Amygdala Healthy?

It may sound strange to consider the health of your amygdala, but there are a few things you can do to reduce your stress and protect the overall health of your brain. Keep your amygdala as healthy as possible by doing the following:

Practicing stress-reduction techniques such as meditation, deep breathing, and exercising.

Work through symptoms of PTSD, severe anxiety, or panic with a trained professional.

Eat a healthy diet, drink water throughout the day, and get enough sleep to contribute to general good health.

Don’t rely on caffeine to keep you going.

The Amygdala is the part of the brain that processes emotions and activates the fear and threat centres, this is a normal response.

Maybe things have just become overwhelming and you need to breathe, be kind to yourself.

Irietrekker profile image
Irietrekker

I can relate to you. My doctors (in the US) called it Catanoia. My eyes are wide open, my mouth is open but I can't speak, and I can't hear. It is very scary and frustrating all at the same time. I understand that you want your old life back. I do to. But you will need to find a way to manage these symptoms until they settle down. So far, I used meditation, FND CBT therapy (which worked well) and exercise if you can. Hopefully there is a therapist the specializes in FND or is at least willing to learn more about it so that s/he can help you.

The hardest part and the first step in managing the FND is radical acceptance. I know that sounds woo woo. I felt that way when my neurologist in the epilepsy center said that to me. But he meant that we have to radically accept we are people living with FND, this is where we are today -- and to take each day is they come.

I hope this helps. Best if luck on your journey.

LouBL0u profile image
LouBL0u

Hi ChelseaBlue

I was very lucky to receive in-patient treatment for FND ( Rosa Burden centre in the U.K.) and it was through that I started understanding some of my FND experiences.

EMDR has been exceptionally helpful to me. I have done lots of different therapies and this one worked! Good luck

michelesmith profile image
michelesmith

good morning, yes I also have PTSD . I struggle with the “fixated stare” ,recently being dx with FND.I dont know where I go , but it is a blank space and it comes and goes. I dont know if this is to help the brain rest(?)but I also will be seeing a neuropschy in the following week .

Goodliving profile image
Goodliving

Hello, Chelsea,

Well all very normal stuff to those that have FND, but those who never heard of it family, doctors, hospitals etc. it is not.

This is what I learned and helps me.

Just a coping mechanism for the body and brain. Emotions are not being processed properly and this for me started at birth and childhood with events. Never was really diagnosed because for many years the healthcare world did not know it existed and we often separate in American the psychological parts of the body with the physiclogical parts which it is all connected, especially the gut to the brain which can really influence chemistry in the body.

I was diagnosed after about 8 months and now that we know what is going on, finding good support is important with most illnesses and pier support especially. Chatting with people who have it also.

This might be helpful to you. This is what it looks like for me. Experiences happen in life to all of us and they are then interpreted and then emotions are generated. But much of my life my emotions, did not process correctly so the emotions are stored up and from a science standpoint this is basically stored energy in the amigula. The energy there can affect my life daily in many ways not knowing when how or why. But now that I know. what I have, the most important thing is to make sure that energy is released and managed properly and at the same time train the mind to process events and emotions. Someone responded to you and listed many great ways to live life while you have the illness and yes while you have it. From what I understand at this point if i live my life a certain way and retrain my brain, I can fully recover from FND, but it takes time and work so just keep that in mind that this is not something that cannot be corrected or changed with time and effort. Some additonall knowlege I gained over the last 4 months, is if the neuro team does discover TBI or brain tissue damage, one is more susseptable to FND. TBI is Traumatic Brian Injury often occures from an event like a impact to the head. Often seen with the soilders in combat.

Hope that helps you a little. You are wise to reach out and learn from others. Just a bit of a bump in the road for you at an early age, but they are learning a lot now about the illness and how to treat it.

Well done!

Pat

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