Yes I am sharing more!!! Stay tuned! I’m starting to do a daily diary of life with FND! Today I had speech problems and it was on the video. I will post anything and everything FND and life with it! My goal is to start a nonprofit organization to provide financial support for travel to and from treatment centers or appointments and the waiting period during disability, and for medical equipment. I can do that once I get more subscribers and spread the word to help get donations for the organization.
Yes, I can most of the time feel them coming on now but that took lots of practice paying close attention to details of specific physical feelings in my body.
I had started off with the phone in my hand, but propped it on something. Yes, my seizures usually only affect my left side, tongue, neck, and head. However, they change and lately they have become more like a complete body stiffening, especially my whole trunk area making it difficult to even breath.
Well, about a few weeks after I developed a sudden severe onset of FND, I was severely startled from a bookcase crashing across the table from me and that was my first seizure. I didn’t know what was happening so I called them episodes until I was diagnosed with nonepileptic seizures. I’m sure the noise of the bookcase crashing stimulated a PTSD experience I went through and triggered it. Sudden loud noises are just one trigger for me.
These aren’t fun to have, but I don’t go to the hospital because they don’t do anything for me except run stroke tests which always come back negative. This has been going on for five years and happened less than two years after a head injury.
Bless you 💐 Hope you get some relief most of the time
It comes and goes. Sometimes it’s daily and sometimes it’s a couple times a week, but yes, I’m blessed when I find the relief!
I want to thank you for sharing your seizures can you share more
Yes, I will share more as they come and when I have someone prepared to video for me when I have them.
Yes I am sharing more!!! Stay tuned! I’m starting to do a daily diary of life with FND! Today I had speech problems and it was on the video. I will post anything and everything FND and life with it! My goal is to start a nonprofit organization to provide financial support for travel to and from treatment centers or appointments and the waiting period during disability, and for medical equipment. I can do that once I get more subscribers and spread the word to help get donations for the organization.
Do you ever know your seizures are or do they surprise you
Yes, I can most of the time feel them coming on now but that took lots of practice paying close attention to details of specific physical feelings in my body.
Actually both happens. Sometimes I know when they are coming and other times they are sudden.
🙏
Beautiful woman love you too baby Tony and miss you too baby Tony ❤️
You're so brave❤, do you get an aura before your seizures, if you do can you describe them plz?
Yes I do but they are different and I have to pay close attention to what my body is telling me.
Are you holding your phone while having a seizure? Does it only affect one side?
I had started off with the phone in my hand, but propped it on something. Yes, my seizures usually only affect my left side, tongue, neck, and head. However, they change and lately they have become more like a complete body stiffening, especially my whole trunk area making it difficult to even breath.
I have too pnes
I’m sorry to hear that. Maybe you can join us sometime for peer support group.
What kind of tonic clonic seizures are those
Functional Neurological Disorder type 🥺
K💜👍😭🇪🇦🇪🇸⚠️⚠️
Do you know what started your seizures
I developed them when I developed FND. I can identify the triggers, well most of them now.
Well, about a few weeks after I developed a sudden severe onset of FND, I was severely startled from a bookcase crashing across the table from me and that was my first seizure. I didn’t know what was happening so I called them episodes until I was diagnosed with nonepileptic seizures. I’m sure the noise of the bookcase crashing stimulated a PTSD experience I went through and triggered it. Sudden loud noises are just one trigger for me.
K😭😭👍🇪🇸🇪🇦🚑🏥💜
These aren’t fun to have, but I don’t go to the hospital because they don’t do anything for me except run stroke tests which always come back negative. This has been going on for five years and happened less than two years after a head injury.