How can I deal with family and my seizures from FND?

[Allyw]

I live with my parents. And they struggle to help with my seizures.'duck walk' and of course my emotions. Someone In the family commented that my seizures could be manifested. From what I found online; the seizures are either planned or are a temper tantrum. I don't plan the seizures. They are difficult to handle the day after and put more strain on my body than I need. I also thought I was a little old for temper tantrums. I turn 20 in June, so I should have out grown them. Is there a way to let family know that the seizures are uncontrolled and that I'm unaware of anything going on during them? I've just sat back and let family comment on what they think this is. I've done really well when it comes to dealing with it, but just wondering if I should say something or continue to just let them assume.

[kotovasv]

Hi Allyw, to show your parents that FND seizures are true and independent of your will, show them Dr. Stone's website neurosymptoms.org or print out the information booklet from his website. Dr Stone states explicitly that FND symptoms, unlike malingering, attention seeking etc. are NOT controlled consciously,

[tonker]

If you are on facebook there is a group that you can join its called Functional Neurological/ Conversion Disorder/fndhope.org it has people frm all over the world who are going through the same things that you are and they are so suportive and understanding they are also a closed group so no one that is not part of the group can see what you post i highly recommend joining ive had similar problems with my mom telling me its just happening because of stress when i know its not i finely told her to look up fndhope.org and she finely backed off i dont know if she did read the web site or if she realized that she was the one stressing me outt he most but this website has alot of great information

[Allyw]

Thank you both. I will look into the Facebook group and the site for Dr Stone.

[VivienneWaterworth]

I understand your comment about temper tantrums. My 'seizures' look like temper tantrums but they definitely aren't. I don't have control over whether I have them or not. I agree with tinker about joining that Facebook group It's excellent.

The group also has a lot of parents of teenagers (and younger!) who have been able to support each other with their frustrations of not being able to help their children. <IF> you are comfortable with them joining, you can invite them to join…but only if you are comfortable.

[parvenu]

Hi Allyw,

Try not to despair. This is not your fault, this is not your choice, this is not your plan! The best thing your nearest and dearest can do for you is become better informed, try neurosymptoms.org ( I put my story on the site, Becky), and FND.Hope. There is also a facebook page where people can share ideas and experiences. You are not alone!

[geordie-girl]

Show your parents the FND site, you are not putting them on and they are not temper tantrums. It is hard cor your family to see you like this and hard for them to understand . More emotions you have and stress does not help the situation. Hope this is helpful.