FND seizures

[VR053]

Hey guys, so I'm still kind of learning about this condition even though I've been dealing with it for years now and I'm still trying to figure out all of my symptoms and I'm seeing if you guys could help me or at least understand. Some of the main symptoms I deal with with FND is seizures, knee buckling, and fatigue. But what I'm wondering about is the seizures because these years I've dealt with it, me and my family would always call it fainting because that's what it looks like and I was diagnosed with a condition called POTS that causes fainting so of course we thought it was that. But come to find out I might be misdiagnosed with that condition and it might actually be non epileptic seizures which I've had before but it was different than this. Anyways my seizures happen at least 3 times a day and at most 12, they also can last from a few seconds to almost an hour. When I come out of it I feel really drained and sometimes paralyzed for a while and sometimes emotionally upset and if I try to walk after, my legs don't want to stand or cooperate. I don't know what causes them because it always happens after I eat and when my heart rate is really high, but the weird thing is sometimes it happens right when I wake up and I don't even remember having a seizure I can just tell I had one because of the after effects. I know with these seizures doctors and people say that it's caused by anxiety and stress and everything and I know sometimes it causes that for me but I'm confused of why it happens after I eat and in the mornings and sometimes in my sleep. I don't know if anybody else deals with this or something similar but please let me know so I can learn and tell me anything else you know about it.

Thank you

[Jofisher]

I would contact the epilepsy society as they have lots of information on non epileptic seizures and would be able to answer a lot of your questions. My son has severe epilepsy and sugar for him has to be managed very carefully so I would suggest you try a ketogenic diet to see if that could help you. I would also look up fibromyalgia as I have FND and fibromyalgia as well check out fmaware.org and let me come back with the other website for you Dr Devin Starlynl has fibromyalgia and is extremely knowledgeable there are some medical handouts do check them out and her book called the fibromyalgia advocate is brilliant it has all the information you need to understand Fibromyalgia and the handouts are also in there that you can print off. If you can’t afford to buy the book your library maybe able to get it in for you.

Information

[VR053 in reply to Jofisher]

Alright thank you so much. Yeah I've tried to change my diet a few times but it still happens after every food but I will check out the ketogenic diet. Thank you for letting me know about this. Yeah I saw a neurologist and they almost diagnosed me with fibromyalgia but that was the last condition they thought of because my symptoms don't make sense but I'm not sure if i have fibromyalgia or not and they don't know either. I will check out those things you suggested. Thank you very much.

[210272]

Hi VR035 and thanks for your post. My understanding is that if we feel symptoms have changed (with whatever condition/s we have), as you describe, then we should always report this and may need to undergo further testing, if only for peace of mind. When we eat our blood pressure can drop and if we are prone to fainting or seizures bp fluctuations could play a part. Your dr should be able to hook you up to a monitor so they can track any changes and see if there's a link as well as finding out if you are having bp fluctuations when you're asleep.

Dietary changes may help but I would see if they can figure out the cause first since diets like the Ketogenic diet can be hard on our systems and/or not provide the specific 'fuel' we need.

I agree with Jofisher that contacting the Epilepsy Society is a very good idea

[VR053 in reply to 210272]

Hi! Thank you for responding. Yeah I've had several monitors to track my heart rate and blood pressure for a few days and yes my blood pressure drops pretty low and very often which causes me to faint or seize even in my sleep because we've caught it on my heart rate and blood pressure watch which was accurate like a bp monitor because we compared them, the interesting thing is that my BP would drop every hour and my doctors didn't know what caused it especially in my sleep. But alright I will see what I can do and what they will do for me to hopefully find it out. Thank you so much!

[210272 in reply to VR053]

I hope they can help you Our systems are great when they work but not so much fun when they don't.