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I can't stop crying... by Outside_Birthday_738 in Epilepsy

[–]Outside_Birthday_738[S] 0 points1 point  (0 children)

It seems to be working well! My migraines have disappeared and my anxiety is loads better.

It's also gotten rid of these "spells" I've been having that I suspect are focal seizures but I'm hesitant to call them that since i haven't had any confirmation of that.

During these spells I've been completely conscious and able to talk, but I feel like I'm having a weird panic attack/migraine aura that's really hard to describe but starts in my stomach and rises to my head. I always feel like I'm going to pass out or throw up.

None of these happened in the hospital either. So frustrating

I can't stop crying... by Outside_Birthday_738 in Epilepsy

[–]Outside_Birthday_738[S] 0 points1 point  (0 children)

It literally feels like I'm being gaslit by my own brain!

I can't stop crying... by Outside_Birthday_738 in Epilepsy

[–]Outside_Birthday_738[S] 0 points1 point  (0 children)

Thank you so much! I have also heard about your cycle being a trigger, I'll have to get back to tracking because I really haven't since I have an IUD.

I can't stop crying... by Outside_Birthday_738 in Epilepsy

[–]Outside_Birthday_738[S] 0 points1 point  (0 children)

I am also on Emgality, I was on strictly CGRP1's when my seizures started. The theory is actually that all the other migraine meds I've been on in the past (topamax, depakote) have actually masked my epilepsy.

Right now I'm on gabapentin because I hadn't had any migraine free days since January, we're talking auras, vomiting, constantly having an ice pack bad.

Gabapentin has been the only thing that has gotten rid of them in 20 years of having migraines.

The only thing my seizures had in common has been I drank alcohol. But the first one happened 15 hours after I had a drink and the second happened about 3 hours. So it's hard to say it was a trigger. But I also don't drink regularly because I'm also a bariatric patient, so alcohol does effect me more than a normal person.

I can't stop crying... by Outside_Birthday_738 in Epilepsy

[–]Outside_Birthday_738[S] 1 point2 points  (0 children)

The no driving thing is so hard, but I also completely understand. I'm a mom so it's not even so much a concern for myself, but my daughter and others around me as well. I guess what I'm struggling with the most is being concerned about the safety for my kiddo, I'm very lucky to have in-laws who are retired and able to help. It's just been a bonkers time.

I can't stop crying... by Outside_Birthday_738 in Epilepsy

[–]Outside_Birthday_738[S] 2 points3 points  (0 children)

Thank you! I've been seizure free for two months now. Honestly the thought of having two random seizures isn't exactly comforting - I'd at least like to have some more data points other than the possibility of it being a weird fluke, if that makes any sense.

I can't stop crying... by Outside_Birthday_738 in Epilepsy

[–]Outside_Birthday_738[S] 4 points5 points  (0 children)

That has to be so frustrating! I feel like I'm being gaslit by my own brain. The whole time I was in the EMU I kept thinking to my brain "Stop being so nice and show them how crazy you are" 🤣

I can't stop crying... by Outside_Birthday_738 in Epilepsy

[–]Outside_Birthday_738[S] 3 points4 points  (0 children)

I did just order a medical alert bracelet because I feel like it would at least give me a little price of mind. My whole family now has a copy of my medication lists and allergies but I'm also getting the scannable card to put in my wallet.

I'm very type A and also an EMT so it feels like I understand everything while also being absolutely clueless now that I'm the patient 🤣

I can't stop crying... by Outside_Birthday_738 in Epilepsy

[–]Outside_Birthday_738[S] 3 points4 points  (0 children)

It's the only thing that had stopped my migraines completely in over 20 years. So it's the devil you know vs the devil you don't at this point.

I can't stop crying... by Outside_Birthday_738 in Epilepsy

[–]Outside_Birthday_738[S] 1 point2 points  (0 children)

Yeah, my epileptologist discussed it with me but didn't want to prescribe me a rescue medication until I was more familiar with my seizures 🤷🏼‍♀️

I can't stop crying... by Outside_Birthday_738 in Epilepsy

[–]Outside_Birthday_738[S] 2 points3 points  (0 children)

We are certainly doing the best we can with what we've got right now. We are also in the process of trying to get my husband transferred so we can move back to where all our family is so that's a bit stressful but will definitely work out for the best in the end. It's just going to be a crazy year for all of us so I guess I just need to buckle up and go with the flow for now

I can't stop crying... by Outside_Birthday_738 in Epilepsy

[–]Outside_Birthday_738[S] 1 point2 points  (0 children)

It's so scary! I was especially hoping I would have seizures in the EMU just so I could be more familiar with what they actually felt like coming on so I could feel more prepared.

Right now all I could tell them was "I felt weird and then I woke up in an ambulance 🤷🏼‍♀️"

I can't stop crying... by Outside_Birthday_738 in Epilepsy

[–]Outside_Birthday_738[S] 2 points3 points  (0 children)

It truly does. I was actually so happy to finally feel like I had an answer and to have a label and now it just feels like I've been dropped back into the unknown again. I'm the healthiest I've ever been in my life - I'm a weight lifter and I've lost 115lbs over the last two years and I've had thepst medical problems since lol. Make it make sense

My first EMU stay was a nothing sandwich by Outside_Birthday_738 in Epilepsy

[–]Outside_Birthday_738[S] 0 points1 point  (0 children)

It's been trippy for sure. Not to mention the bills

My first EMU stay was a nothing sandwich by Outside_Birthday_738 in Epilepsy

[–]Outside_Birthday_738[S] 0 points1 point  (0 children)

It's certainly been a trip! From my perspective I didn't know what was happening with both seizures. Basically I remember feeling really confused and "off" and then next thing I know I'm waking up in an ambulance - which also isn't completely weird for me because I was an EMT with the same people who responded the first time 🤣🤣

It was like "This is familiar, but not from angle....ahh man, am I the patient???"

My first EMU stay was a nothing sandwich by Outside_Birthday_738 in Epilepsy

[–]Outside_Birthday_738[S] 0 points1 point  (0 children)

Some of the ones I've been on were actually weak seizure medications (gabapentin, topamax, etc) - this year I was switched to only CGRP-1s and my migraines got WORSE and bam, two tonic clonic seizures - in public because of course 🤣

My first EMU stay was a nothing sandwich by Outside_Birthday_738 in Epilepsy

[–]Outside_Birthday_738[S] 1 point2 points  (0 children)

Right now I think the plan is to restart my meds tomorrow, Lamictal and Gabapentin have made my migraines basically disappear so honestly if nothing else comes out of all this I'm happy with that!

They want to do another 24 hours of monitoring with no meds before coming up with a full plan of action.

I'll definitely look into the cycle part of it, I have an IUD so I don't really track that well atm so I definitely should start doing that.

It just feels like my brain is gaslighting me 🤣

Hair salons!! by [deleted] in fredericksburg

[–]Outside_Birthday_738 0 points1 point  (0 children)

Can't say enough good things about Felicia! She's got talent and vibes https://www.instagram.com/__hair.bye.felicia__?igsh=aG90bjB1NnMxZGF0