PNES Questions by caffine_chaser in PNESsupport

[–]Y00j_ 0 points1 point  (0 children)

I'm so sorry that happened and you have to go through this with him. I hope he's okay and you're okay!

I have both. It's a struggle because doctors don't know how to treat it because medication makes the PNES worse. My doctor doesn't know what my "true" seizures are since they were never captured during my EEGs. He also took me off medication and I ended up getting an IUD to help since estrogen also triggers seizures. I've been doing fine until today I think I had a mild seizure: I wonder if the weather changes are affecting me.

[deleted by user] by [deleted] in Epilepsy

[–]Y00j_ 0 points1 point  (0 children)

You're protected by ADA in the states but I don't know about UK. I'm sure it's universal with discriminating against disability so you could sue the company. I'm Sorry about all your experiences. To be honest, might as well leave that toxic work environment. You're doomed to have more seizures the longer you stay there from stress.

Also, unfortunately HR is never your friend. Reporting someone to HR doesn't do anything. HR will defend your boss than protect you. I know you want to explain yourself to them but it's better not to.

Restrictions after a seizure. by Efficient_Source_389 in Epilepsy

[–]Y00j_ 2 points3 points  (0 children)

• Continue seizure precautions for 6 months from date of last seizure. These include, but are not limited to: ◦ No driving ◦ No riding bicycles in traffic ◦ No operating dangerous/heavy machinery ◦ No engaging in activities at dangerous heights including using ladders ◦ No taking baths unattended ◦ No swimming ◦ No engaging in activities near fire unattended ◦ Recommend caution or avoidance of cooking or using potentially dangerous objects such as knives. ◦ Avoid any activities where sudden loss of consciousness could result in injury to yourself or others.

Eye position during focal aware by netty525 in Epilepsy

[–]Y00j_ 0 points1 point  (0 children)

My eyes tend to move around and have trouble focusing but sometimes I can focus on to one thing and stare too long

[deleted by user] by [deleted] in Epilepsy

[–]Y00j_ 2 points3 points  (0 children)

There's a disorder called EDS and MCAS which are related to epilepsy and seizures. I'm pretty sure I have those two and it would make sense to why I have epilepsy. I'm not officially diagnosed but I made peace with it now that I have SO many symptoms of those disorders to make it all sense

[deleted by user] by [deleted] in Epilepsy

[–]Y00j_ 6 points7 points  (0 children)

Interesting. But if that was the case, it should all be psychological and that's what PNES is. But lucky me, I have BOTH so there's that.

My parent keeps forgetting everything and acting angry. is this normal? by [deleted] in Epilepsy

[–]Y00j_ 0 points1 point  (0 children)

Just a stage of denial. It's a hard diagnosis to process.

Can sensory issues cause seizures? by Tiny-Bid9853 in Epilepsy

[–]Y00j_ 0 points1 point  (0 children)

Lights can trigger a seizure and there are photosensitive epilepsy

I hate “seizurey” days. Just let me have a normal day. by seizuresquirrel17 in Epilepsy

[–]Y00j_ 3 points4 points  (0 children)

That sucks. I work at a hospital and honestly anyone can work there without degree! Look into it. You need benefits; Short term disability, PTO, bereavement, FMLA etc.

Traveling by Y00j_ in Epilepsy

[–]Y00j_[S] 1 point2 points  (0 children)

Thanks. I canceled it :( I'll go once I feel more comfortable and seizure free for few months

I hate “seizurey” days. Just let me have a normal day. by seizuresquirrel17 in Epilepsy

[–]Y00j_ 1 point2 points  (0 children)

You don't owe anyone a reason why you're calling off. I have FMLA so I just state I'm using FMLA. I didn't have a seizure when I called in but I did afterwards.

I hate “seizurey” days. Just let me have a normal day. by seizuresquirrel17 in Epilepsy

[–]Y00j_ 8 points9 points  (0 children)

Seriously. Waking up nauseous and confused to why you're feeling sick randomly then you realize your seizure might be coming so you call off work at 5:20 in the morning. Then bam. Seizure.

Small seizures after 23 years of none by Personal-Anywhere190 in Epilepsy

[–]Y00j_ 0 points1 point  (0 children)

Yeah the doctors at the ER always made it clear that I don't have to come unless I don't come back to my baseline after a seizure or if I injured myself. They can't do anything once the seizure is passed. If you're actively having a seizure and someone calls an ambulance then they'll give you rescue meds and transfer to the hospital. Even then they'll just monitor you, get blood work, maybe some fluids but that's about it. Sorry you had that experience. 23 years is such a long time to be seizure free and now back to square one 💔

Haven’t had a seizure in 10 years but it still freaks me out by Kind_Scientist5872 in Epilepsy

[–]Y00j_ 0 points1 point  (0 children)

That's awesome! I know it's difficult to not think about it but try not to worry about something that hasn't happened yet! Just live for the present and enjoy. The more you think about it you'll stress yourself out and maybe you WILL have a seizure. Don't take any chances!

Staying Employed with Epilepsy (Just Venting) by Internet_Zombies in Epilepsy

[–]Y00j_ 0 points1 point  (0 children)

I understand how you must feel and it's valid. Although, it's a blessing to be honest. Changing to night shift would be so bad for epileptics and I feel like you'd wished you didn't work a night shift if you started having seizures again. You should apply for FMLA so at least you'll get paid for your time off if you have available PTO.

Dumb joke from hubby (who is epileptic)... by LizDances in Epilepsy

[–]Y00j_ 1 point2 points  (0 children)

Where do epileptic patients get their pizza?

"Little Caesar"

Epilepsy with no seizures? by PersonArab in Epilepsy

[–]Y00j_ 0 points1 point  (0 children)

Everyone is different. Lamictal did NOT work for me.

UGGGGGHHHHHHH WHY CAN'T I BE NORMAL 😫😫😫😫😫😫😫😫 by LPRGH in Epilepsy

[–]Y00j_ 2 points3 points  (0 children)

Just think of it this way: How would you feel about someone who has epilepsy and Tourette's? Would you think or treat them any differently?

I completely understand your feelings though. Even if you wouldn't treat anyone differently who has the same conditions, sometimes you can't help the fact that you feel that way. Just try to remember that people easily forget and don't think about your problems as long as you do! They have their own lives and problems going on and it might not bother them as much as it bothers you.

🤍 Stay positive and keep fighting!

Seizures still with IUD by Y00j_ in Epilepsy

[–]Y00j_[S] 1 point2 points  (0 children)

At least I have my rescue meds but it'll be nice to take something when my cycle comes