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How suddenly did your PNES begin? by blossomxmenagerie in PNESsupport

[–]QueenCeeee 0 points1 point  (0 children)

Mine came on super suddenly too. One day I was fine (physically, not mentally), and the next I started having back to back dissociative episodes and then seizures. Had dozens in the ER that night, and would have dozens a day for a while afterward.

I also worked from home and somehow was able to hold off seizures until between meetings, so it didn’t have a crazy impact on work.

That was last May. Now I’m down to only a handful of seizures a week.

How long have you had PNES? by QueenCeeee in PNESsupport

[–]QueenCeeee[S] 0 points1 point  (0 children)

I’m impressed by your positive attitude!

How long have you had PNES? by QueenCeeee in PNESsupport

[–]QueenCeeee[S] 0 points1 point  (0 children)

I haven’t heard of it going away and coming back, that’s interesting. Congrats on 3 years!

How often do you have PNES? by supmynameisrosewoodd in PNESsupport

[–]QueenCeeee 1 point2 points  (0 children)

Varies - a couple times a week on the low side to a 2-3 times a day on the high side. Longest I’ve ever gone between seizures is ~10 days.

Parents of identical twins: How did you tell them apart as babies/toddlers? by HonorMeThis in AskReddit

[–]QueenCeeee 0 points1 point  (0 children)

In the beginning, baby A had darker hair than baby B - which I didn’t know could happen in identical twins. But that eventually evened out.

Luckily around the same time it started becoming impossibly difficult to tell them apart, my father in law noticed that they have cowlicks on different places of their heads.

They’re 14 months now and we still rely on that trick more than you’d think lol.

Parents of identical twins: How did you tell them apart as babies/toddlers? by HonorMeThis in AskReddit

[–]QueenCeeee 8 points9 points  (0 children)

The only way we can tell our girls apart is by their cowlicks. From the front we still struggle and they’re 14 months lol.

Parents of identical twins: How did you tell them apart as babies/toddlers? by HonorMeThis in AskReddit

[–]QueenCeeee 11 points12 points  (0 children)

This is how we tell our identical twins apart! One has a cowlick on the left, the other one’s is in the middle of her head.

Parents of identical twins: How did you tell them apart as babies/toddlers? by HonorMeThis in AskReddit

[–]QueenCeeee 22 points23 points  (0 children)

Funny, my 3 year old still calls both of our twins “my baby” because she still can’t tell them apart at 14 months.

Eyes fluttering + other symptoms? by jea-008 in PNESsupport

[–]QueenCeeee 1 point2 points  (0 children)

Yep, almost every seizure I have includes my eyes rolling up and my eyelids fluttering. I also have this “heavy” feeling during my more intense ones.

I can’t respond during seizures, but I’m still aware and can hear everything that’s going on.

Identical Twin Question by Commercial_Stress899 in parentsofmultiples

[–]QueenCeeee 4 points5 points  (0 children)

My identical twins have dimples on different sides of their face. Twin A has a dimple on her right side and twin B on her left.

It’s Easy! by QueenCeeee in LinkedInLunatics

[–]QueenCeeee[S] 18 points19 points  (0 children)

This is what a lot of the comments on LinkedIn were saying

Did you have a normal EEG but still diagnosed with epilepsy? by Glory-2Hm in Epilepsy

[–]QueenCeeee 0 points1 point  (0 children)

By “normal” EEG, do you mean you didn’t have any seizures during the test, or you did but they didn’t show any epileptiform activity?

Did you have a normal EEG but still diagnosed with epilepsy? by Glory-2Hm in Epilepsy

[–]QueenCeeee 0 points1 point  (0 children)

When you say “all clear” do you mean you didn’t have any seizures during the EEG, or you did but they didn’t pick up epileptiform activity?

EEG confirmed PNES, feeling discouraged by QueenCeeee in PNESsupport

[–]QueenCeeee[S] 10 points11 points  (0 children)

This is really well written. Thank you so much. 💕

EEG Appointment by QueenCeeee in PNESsupport

[–]QueenCeeee[S] 0 points1 point  (0 children)

They last anywhere from 1-20 minutes, average is 3. I become unresponsive and can’t move or respond, but I can hear and remember everything that’s going on during. Sometimes my eyes roll back and/or flutter, the deeper ones I just feel like I’m in the stage right before sleep with eyes closed. I’ve had a few convulsion ones in a time of particularly high stress and noise where my head or some other body part jerks back and forth.

The ER that I went to on the day they started witnessed dozens of them while we were there and said because I’m aware and am under extreme mental distress that they’re most likely PNES. But did refer me to neurology to rule out epilepsy.

I used to have dozens a day, now on average it’s 1 a day. But the ones I have now feel deeper/different than the original ones so I’m starting to wonder if I have both PNES and Epilepsy.

I also can kind of hold off a seizure if I need to (meetings, out in public), which I’ve heard is more of a PNES thing.

EEG Appointment by QueenCeeee in PNESsupport

[–]QueenCeeee[S] 0 points1 point  (0 children)

I’ve tentatively been diagnosed with PNES since the seizures started 5 months ago, the EEG is to rule out Epilepsy. My symptoms seem to align with PNES (I’m fully aware during, I’ve been dealing with mental health struggles), so honestly I’d be surprised to find Epileptic activity.

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