See Alike in...

Alike App

Browser

katieliz

789d

I’ve been experiencing some sort of episode (maybe seizures? Couldn’t tell ya) for the last 3+ years, and they are interrupting my life so much. Unfortunately due to my psych history the first neurologist I saw didn’t want to do any testing, but finally I found a new neurologist and will be going to an epilepsy monitoring unit soon to see what’s up. I’m really really nervous and don’t know what to expect. If they are epileptic it will be good to have answers but also my life may be changed, and if they are PNES I’m worried people won’t take me seriously :/ I just want them to stop

Top reply
    • AZblue

      713d

      My experience was different got there got set up with the leads and stuff they went faster because I warned them I felt an episode coming after that the 1st day they left me alone but gave me a button to press since I'm able to sense mine if I felt it press the button then let it happen I had multiple the 1st day because of anxiety the only times I had many people around me was because I'd been seizing for over 45mins straight they'd tried to give me meds prior but I denied it and let them know my episodes usually last longer anyways it's normal for me the hard part was because of Covid I was alone and constantly having episodes I was supposed to be there 5dsys I was there 2.5 because I was struggling so much both nights I seized so bad I hyperventilated and was put on oxygen my emotions play a big role in my episodes same with sensory stimuli but the nurse I had during the day was extremely nice and helpful she made accommodations because for me trying to make phone calls which was how you got food my anxiety gets to bad it prevents me from doing so I explained it to her and to accommodate that so I'd actually eat she would come in write what I wanted then order it for me if I was uncomfortable she helped fix that days were ok nights because she wasn't there and night staff weren't as nice in my case my episodes would get much worse by the 2nd day they'd gotten more then enough and I got sent home the next day early because they got what they needed and for my own wellbeing that's my experience it depends on where you go honestly

    • AZblue

      713d

      My experience was different got there got set up with the leads and stuff they went faster because I warned them I felt an episode coming after that the 1st day they left me alone but gave me a button to press since I'm able to sense mine if I felt it press the button then let it happen I had multiple the 1st day because of anxiety the only times I had many people around me was because I'd been seizing for over 45mins straight they'd tried to give me meds prior but I denied it and let them know my episodes usually last longer anyways it's normal for me the hard part was because of Covid I was alone and constantly having episodes I was supposed to be there 5dsys I was there 2.5 because I was struggling so much both nights I seized so bad I hyperventilated and was put on oxygen my emotions play a big role in my episodes same with sensory stimuli but the nurse I had during the day was extremely nice and helpful she made accommodations because for me trying to make phone calls which was how you got food my anxiety gets to bad it prevents me from doing so I explained it to her and to accommodate that so I'd actually eat she would come in write what I wanted then order it for me if I was uncomfortable she helped fix that days were ok nights because she wasn't there and night staff weren't as nice in my case my episodes would get much worse by the 2nd day they'd gotten more then enough and I got sent home the next day early because they got what they needed and for my own wellbeing that's my experience it depends on where you go honestly

    • katieliz

      786d

      Thank you so much everyone this is so helpful

    • PicklesTheCat

      786d

      If your eeg is gonna be overnight I would suggest bringing some coloring books or something to do as it can get rather boring at times. PNES is a valid and real diagnosis and there is no shame in having it. Best of luck ❤️

    • Maddismanicmoments

      789d

      Epilepsy monitoring unit so basically they are going to do a EEG. They stick a bunch wires on your head and monitor your brain waves to see if there is epileptic waves. if you feel like you’re going to have a seizure you normally push a button also some have camera so if they see you have a seizure they will push the button for you The light will turn on your bed will lower people will rush in take your blood pressure your heart rate marker EEG from the computer in the screen the doctor will come in they may give you something basically what will happen if you have a seizure normally in the hospital. they may also during the day flash some lights in your face to see if lights trigger seizure. They may take you off some of your medications. They may add some medications. You will have padding on your bed called seizure pads. depending on the hospital you go to for the test it may be slightly different but most likely it will be kind of what I described. It can last anywhere from overnight to 10 days in the hospital. I had a three night EEG I had six episodes while I was there. Two were epileptic The other 4 were non-epileptic. You can have epileptic and non-epileptic seizures. PNES is just as real of seizures. it can be caused by intense of motion or it can be caused by a heart condition like pots. Which is what they believe could be causing my non-epileptic. Because even intense emotions don’t really seem to cause nonepileptic seizures in me. but if my heart rate jumps because I stood up too quickly and my blood pressure drops I have had a seizure before because of that and I fell flat to the ground. recently I started having absence seizures. and those are the most frustrating because people sometimes don’t know I’m having a seizure. i’ve also been having sensory seizures where I will make repetitive noises while not being aware that I’m doing that. and it’s very hard to distinguish if it’s a seizure or if it’s my autism. Like I know but other people don’t know. So I totally understand the frustration it took years to finally get a proper diagnosis’s. And it is totally OK to ask for a second opinion. See a different neurologist if you don’t agree. don’t give up. You got this. Hope this helps a little.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

Thank you! Your submission has been received!
Oops! Something went wrong while submitting the form.

Want to chat or share? Download the Alike app now and get complete access to Alike.health's unique features.

Find people who are
experiencing a similar
medical reality

100% Free
100%
Free

Download Alike for the full experience

JOIN

View All

Bupropion

night sweats

paranoid

Valium

sertraline

palpitations

Anxiety (Including GAD)

Depression

palpitations

Depression

Valium

Bupropion