FND Diagnosis Support

[ButterflyInTheWind]

Hi, Everyone my name is Victoria, I was diagnosed in 2020 with fnd that include fainting & seizures. I wasn't unable to work until Oct 2020. When I was denied for social security told me I was high functioning I'm autistic. I made my condition worse by working at Amazon 10 hrs a day with active symptoms. Doctors are refusing treat me or explain whats happening or why I can't walk. Their also refusing my mental health medication. My life is falling apart. I have no friends or family that understand I am never better. I am always fighting. Half of family is 100% supportive the rest believe I'm faking. Fiancé is autistic & isn't possessing, he freaks out constantly. My stress is making it worse. I feel Even more broken.

[Lady4]

Hi Victoria, welcome. It sounds like you are experiencing what many of us have, you are not alone.

There also is a connection to autism, some people can be susceptible to FND but not always.

FND is real, ignore the ones that say otherwise.

Try not to get stressed out at your partners responses, he just doesn't understand.

I am not sure why they would refuse your mental health medication? Was that something you were prescribed before the FND diagnosis?

You also mentioned having faints (were these drop attacks - where you just drop to the floor) and seizures?, are you still experiencing symptoms?

[ButterflyInTheWind in reply to Lady4]

I am just going to rattle it off and try to summerize...🫡

I moved from Nebraska to Wisconsin: without insurance. Finances were extremely tight. I was working 30 hr a week at Amazon. I had to reduce my hours due to seizures. I was forced to quit by my condition. Amazon was understanding of funds made establishing new care difficult. My previous doctor gave me multiple refills until he couldn't. The psychiatrist state it's a neuro / physical condition not Mental and to see a neurologist. And the neurologist say its a psychiatric condition. The psychiatrist office lost may paperwork multiple times to prove my condition. Mentioning we have no record of you filling out the forms. it took 4months of their games and playing with my emotions. Treating me like I was crazy, and inflicting the falls on myself. They saw my fear, and they acted in high alert. They informed me the EEG is out of date.

Prescriptions not for fnd. Serquel 50 nightmare meds, anxiety, Gabapentin for anxiety, and depression/boost mood.

I had epilepsy as a child.

I have auras and know when to sit down. But I have fallen. And I have had to hang on to door way, to swing to safely get to floor when legs locked and wouldn't move. I was able to call for help, sat in a safe position.

I'm not allowed to see a psychiatrist until I see a therapist.

Neuro-Therapist January 6.

Psychiatrist January 15. I went to a fainting clinic/tilt table test diagnosis psychogenic pseudo syncope caused by fnd or conversation disorder. 2024

I went to neurologist 3EEGs. 1 was a whole week in the hospital. Diagnosis psychogenic non epileptic seizures.2021

Symptoms: Ifaint, I have seizures, tics, muscle spasms and cramps, electric shocks headaches instant, lose control of legs, hot and cold flashes instant brain fog, twisting muscles, head in pain with no headache. I lose consciousness for only a moment fall and it's getting worse every day. My quality of life is dwindling. Tics that repeat are a annoying and becoming pain full, nauseous, history of vomiting for long periods.

Triggers: blood sugar drops, period, mood swings or emotions 0-100, walking excerise, sound, stubbed toe, happiness, a good movie, excitement, wakeing up with a headache walking drunk. Thinking about it. Stress, lack of sleep/Insomnia, hot cold

I'm relate to a fainting goat.

[Lady4 in reply to ButterflyInTheWind]

The neuro-therapist is a good professional to have on your team.

Make sure you GP is regularly monitoring your meds. I would also have thought they would also have tried some therapy before putting on meds. If you have had a sudden withdrawal from your Serquel 50 meds that could also be causing additional symptoms which are reversible.

Gabapentin is for partial epilepsy, nerve pain from shingles and restless leg syndrome. Stay alert to changes in your mood.

I think mindfulness to reduce your stress levels, re-centering yourself to the here and now is rejuvenating and powerful, just taking that time out.

Once you get to manage your symptoms and see what works your anxiety levels will drop, you will have a better quality of life and feel less depressed.

[ButterflyInTheWind in reply to Lady4]

I have been on mental health meds s8nce 2013. I became a peer support specialist in 2018 due to multiple life experiences(CPTSD). I answered a holiness for hospital prevention or difficult situations and suicide. I love coping skills! I thought i was managing my mental health well and so did my old doctors. Even felt like I was finally moving forward in my life. Family is even proud of me. I thought i finally have peace from my past. I had reconstruction surgery on my ankle in 2022. I took Gabapentin. When I spoke to my psychiatrist about how much it helped they were eager to provide it. 300mg 3x a day. Helped with pain+mood+Depression. 😁

[Lady4 in reply to ButterflyInTheWind]

Its amazing that you have managed to come through it all and support others too.

The FND could have been triggered by surgery, did that go okay. Sometimes there are no precipitating factors, for others (like my son), it can be a series of events.

[Shimmyaway]

You are certainly having to cope with a lot of difficulties right now, the condition itself, the reaction of others to it, and of course your own reaction. one thing you could think about tackling is your stress level .. when it is higher or lower, and what or who the triggers are .. so you can avoid them for the present, but also take some measures to calm down your system.

The link below to a podcast from Rangan Chatterjee may give you some idea of things you can be looking at , and tips for ensuring a calmer journey through your day. Best wishes

youtube.com/watch?v=hsEq3yD...(Not working as expected?)

[thinkin]

Hi,

I'm not sure which country you are in, but try the FND hope website for FND friendly consultants. Prof John Stone's neurosymptoms.org is a good place to start. It has resources for professionals as well. As does FND Hope where there may still be - you'll have to check - patient advocacy, where they will have someone step in with your doctors on your behalf to put them straight.

Histamine released from all your stress and the focus on your illness instead of being able to live your life will be what is making your illness worse. Mindfulness can help some, but you have to pick what technique is right for you. Some people find low histamine diets can work well in reducing FND seizures, but there's no trials done on it.

There are people out there who know you are ill and can help. It just takes time to find them.

Hang in there you beautiful butterfly. xx

[ButterflyInTheWind in reply to thinkin]

Its been a life saver! And helped me find my therapist 🙂

[ButterflyInTheWind in reply to thinkin]

Rereading comments. I live in wisconsin Illinois. US

[Shimmyaway in reply to ButterflyInTheWind]

I didn't realise you were in the US .. other places of reference in the Uk, would be FND Action website, St George's Hospital, London @ 'myfnd .co.uk) (with help on managing the 'shakes') and in the US you have the REACT clinic in LA, with a directory of FND satellite clinics elsewhere in the US. Hope you get the help and attention you deserve. Best wishes from across the pond.

[Shimmyaway]

Hello again Butterfly .. have you tried using a weighted blanket on your bed? Some occupational therapists recommend them for people with autism, or for people with anxiety. They are said to help with turning on the parasympathetic nervous system To learn more, follow the link.

Wishing you restful sleep.

bbc.co.uk/sounds/play/m001r...

[ChaosCats]

Hi Victoria! I don't really have much advice but I will say that I think being neurodivergent can affect how people perceive you especially in regards to having FND. I have ADHD and when my FND symptoms started (my very first were involuntary movement) , we all brushed it off at first as just hyperactivity and then later that maybe there was an issue with my anxiety meds. I saw someone else mentioned FND hope which I absolutely agree with. Its how I was able to find this community and more information about this disorder after I was diagnosed with FND because the person who diagnosed me hadn't explained it very well. But regardless, yeah I agree FND is scary especially when then people around you just don't get it. But I hope you are able to feel a little less alone here.