Conversion disorder "relapse." looking for someone who understands this disorder first hand

[boazk]

hi. my name is Kayla and i'm 16 years old. i had a few consecutive conversion disorder episodes (muscle tensing, seizures, palatalization, breathing trouble, etc). I haven't had anything in 4 months, but i've been battling this disorder since April of 2015. i just want to talk to someone who has gone through what I've been through, because i feel so alone. i have people who i trust and love in my life, but none of them know what i am going through. i don't really understand what is happening to me either if i am being completely honest.

[123lisa]

Hey there I have FND but someone will be along to help you, your not alone anytime you want to rant or just need a friend we are here all with somthing we cant quite get a handle on

[boazk in reply to 123lisa]

Thank you so Much!

[DNE92 Moderator FND Hope UK]

Hi

Sorry you are so young to have to deal with this totally perplexing disability. I first started having drop attacks in my early twenties. I just ignored them for years! Eventually I went to find out why I just suddenly fell to the ground - after playing in a charity football game where I just crumbled down like a building being removed by blowing it up. My foot was completely bent in half. I had to go private for the drop attacks diagnosis as my GP and others just repeatedly reported that I had twisted my ankle. Then about 10 years later I was admitted to A&E as I was completely mute and paralysed for 5 days. The docs were good - ran a barrage of tests and spoke to Dr Jon Stone and hey ho I have FND. I get very bad seizures at least 1-2 per day.

It sounds mean but sometimes those closest to you can make you feel worse about yourself because they are afraid for you going outside on your own. I finally had to sit my family down and explain this. But yet they remain so fearful- loads of calls from A&E depts just leaves them feeling desperate. But please press on with your life. Difficult I know but as I keep saying to people see me not my disability. This site and its website are a good support and also neuro.org.UK if you want some more technical info. My consultant sent me a link to articles and books. Happy to send to you but let me know when you feel up to reading such things.

Hello and regards

Lou

[boazk in reply to DNE92]

I would love for you to send me those links. I have come to terms with my disorder over the past two and a half years, but I still don't feel I totally understand it. I have my disorder in the form of episodes, so I have never had to stay in a wheelchair or been unable to walk for more than a day. Thank you so much for your advice, because It can be really hard to keep fighting Sometimes.

[Lima-B in reply to DNE92]

I’d love to read something, can you please send the names of those books to me?

[DMA1664]

Hi, I was diagnosed with Non Epileptic Attack Disorder early last year and FND this year. They're putting mine down to PTSD (multiple traumatic events witnessed at work and life events) which were triggered by car accidents. For me personally, the fatigue/muscle fatigue afterwards is difficult to deal with and the pain when I pull something or trap a nerve as a result. Remember life is and can be good. Surround yourself by people who care, who understand and importantly who make you laugh. Look for things to do when you feel an attack coming on, for example rub your fingers or thumb against something rough. Apparently it's called grounding. Look for inspiration. I've recently watched the Invictus Games, it proves there's so much that can be done even though people aren't able to function fully.

[boazk in reply to DMA1664]

Thank you for that advice. It can be really hard to stay positive sometimes, but i'm doing my best. I am thinking i'm going to check out the invictus games soon, they sounds inspiring

[Bluecat99]

Hi kayla, I unbeatable what you are going through. I have fnd and asthma, am currently in hospital following an asthma attack and pneumonia, but the worst is that it has retriggered my tremor, functional dystonia and lack of mobility. Every time I try to move it affects my asthma. Before this happened I was mobile, at least around the house, and able to transfer by myself.

I hope you start to feel better again soon, thinking of you.

[boazk in reply to Bluecat99]

Thank you I'm sorry to hear that you are having trouble as well. I was doing better until i started having episodes again today, but i'm trying to stay positive. I hope things get better for you soon.