Newly Diagnosed

[AxelBlue]

Hi, I’m Diane 52yr old. I had a non epileptic seizures and the ambulance took me to hospital. Stayed for 6 days while they conducted tests. I couldn’t walk initially as I had foot drop on left foot and turned inwards. By time I left with physio I could walk on crutches and sent home.

Since then I can walk normally but since I’m still having these seizures on a weekly basis I can’t drive or work. I’m waiting to see a neurologist but all tests in hosp were normal. They gave me the diagnosis of FND and a website to look up myself.

I have been writing a diary of symptoms and feelings leading up to these episodes for the Neurologist and to see if I can find a pattern but as of yet that is not clear.

It’s only been a month since all this first started I wonder where this journey will take me. I fear I will lose my job as I need to drive.

My symptoms are numbness and pins and needles, memory loss, fatigue, visual sensitivity and disturbance, sleeping issues and some pain periodically usually in my neck, shoulders or back. Then of course these seizures that writes the next day off completely with sore arms and legs and severe Fatigue.

I am seeing a psychologist weekly and walk most days for up to an hour, when I can.

If you have any advice I would appreciate it. I live in Perth Australia.

[Sugartime]

Hi, AxelBlue FND appears to have so many changeable symptoms and the fatigue factor is so debilitating for our 27 yr old daughter. She had a work accident and was put in hospital for a back injury, within 24 hrs she had her first seizure. This happened in

January 2020 and we have been on a roller coaster ride with Neurologists, OT,

Neuro Physio, Physiotherapist visits. Happy to discuss with you our findings we are

in NZ . Stay safe chat soon .

[artmom]

Have you been investigated for lupus? Seizures occur with that along with a whole host of other things. I’m not sure whether they show up on tests - someone else here might know.

[Guthriegabs]

Try upping your magnesium to replenish what you lose during seizures. Drink lots of water. Give in to the fatigue and nap/rest often.

[nurmihusa]

FND is an enormous basket that way too many quite disparate things are being thrown into and treated as if they are a single condition. PNES looks like an epileptic seizure but isn’t. Confusing matters is the fact that epileptics have been observed to have them AS WELL as actual epileptic seizures. For months I spent 8 to 9 hours a day in what looked like a grand mal seizure. So I identify with what you’re going through. Five years later I have a pretty good handle on what’s going on in my case. Although that may change. Mine seems best explained as Mt Everest sized panic attacks. Panic attacks come in many different forms which is why what you think it’s a panic attack is only a very very tiny subsection of a vast world of symptoms. It appears that my body produces too much fatty acid amine hydrolase which reduces the amount of anandamide in my body making regulating anxiety and stress highly problematic. Naturally because of my experience and journey of discovery when I hear somebody going through something very similar my first reaction is oh my God you got what I got. Which may not be the case. I will tell you that I had to discover this on my own by reading enormous amounts of cutting edge research. And doing enormous amounts of experimenting with one therapy or supplement/drug after another. Absolutely no specialist I went to see had a clue. Sadly I don’t see that changing in the near to medium range future. I’ve had to become the expert in my own condition because there’s no one else out there. Fortunately I manage. Yes I’m on disability. Yes I have days that I cannot function. But I am not spending 8 to 9 hours a day in what looks like a grand mal seizure. There’s that. You will get through this. Keep asking questions and research, research, research.

[1952blonde]

Hello Diane. I am Angela and I am in the UK. I’m sorry that you have had such a rotten time. This FND journey is such a mystery ride for everyone. Thinking about your job it strikes me that there must be disability rights organisations that could advise you about protection in law against you losing work? It may help to allay your fears and take some of the stresses out of your life. I wish you the best of luck.

[AxelBlue in reply to 1952blonde]

Unfortunately I am only on a 3 month contract and have been for 1.5 years... we are all to get interviewed for our jobs for permanency at end of sept... I live in Australia... that is another stress factor to me.

[1952blonde]

I’m sorry you are in such a worrying situation and wish you the best of luck.