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Need a supportive word

Mar 25, 2017 7:45 PM

So ive been pretty depressed and crying for the passed two days because i found out I have to take a EEG for a 3rd time. I am being tested for epilepsy and my eptologist ordered a at home video eeg. unfortunately the first one didnt catch good enough video of me sleeping because it was too dark. When they did it a second time the power kept going out and there was bluetooth interferance. So they have to do it a 3rd time. My doctor was gonna hospitalize me but my eeg tchnician convinced him to let me do it at a hotel near their office. (Because i live in san bernardino and they are all the way out in irvine)
So, im going to be without my kitty who supports me, without my mom, whom i live with and also helps take care of me, and worst off i cant shampoo my hair and have to wear this itchy cap and last time it left a scar because it was too tight and one of the electrodes hurt. I am also kind of ocd so i shower everyday wash my hair every other day and rinse it the days i dont wash it. I hated the first time but was like at least i only have to do this once. Tolerated the 2nd time but was like just one more time. But now i know what to expectt and how it feels so im anxious about the not washing and uncomfortable cap and everything and im upset because it should have only been one time. I'm so lost and other negative emotions i can't put my finger on. This isnt ok and i just want some advice or encouragement to get through this.

Mar 25, 2017 7:51 PM

Sorry you're going through that. I know it's not quite the same but could you bring a stuffed animal with you to snuggle? I have epilepsy too. I've never had the sleep eeg done but I have had eegs.

Mar 25, 2017 9:28 PM

Paperheartz, I'm so sorry you have had to do this twice already and now a third time! I can understand your frustration! I wish I had some wonderful words of wisdom for you, but as I've never had a sleep study of any kind done. I don't know what to suggest. I do think the stuffed animal could be a good idea. Was the cap uncomfortable the first time? Maybe the second time it was too small? We all need some encouragement now and then. Keep telling yourself you got this, because you do have this. You are strong and you will get through this!

Mar 27, 2017 7:14 AM

Paperheartz, my step daughter just got done with a 72 hour EEG, I know it may seem rough right now, but you can get through this, it's only one night and you can shower the next day. We are here for you... Both my daughter and step daughter had to do a 72 hour EEG, my Step Daughter did hers at home and my Daughter did hers at the children's hospital in Augusta Georgia, I know that it's not the same as a shower but maybe give yourself and washcloth bath with the washcloth being damppend and not soak and wet and wash the main area's.... We did that with my Step Daughter when she had to change her EKG electrodes pads. I'm here anytime you need.

Mar 28, 2017 2:35 AM

@gibber thank you for the support. and yes i am going to take a stuffed animal. i agree it isnt the same but i know itll help. thank you. im taking my heatable lavander horse.

@scaryann its ok i just needed to feel less alone i guess. just your suppoortive words as worth as much as wonderful words of wisdome. My husband does his best to support me and he is wonderful at it. i honestly dont know what id do without him (probably physically suffer more because i have to do everything but keep trucking along because im mentally strong) but its not the same when i look at the two of us and he goes to the doctor maybe once or twice a year. catches a couple flues and is tiired after work like every other normal person out there. when here im on several meds. am bed ridden alot and im only 22. I feel alone and terrible alot. especially with him doing so much for me. and i know im not the only one but when you dont have many physical irl friends or any spoonie friends at all and a healthy husband its hard to remember that. so just your encouragement and knowing the people here are going through their own thing is helpful. thank you soo much. and yes i think iit was too tight. my mom said to tell them this time if its too tight.

@sjogrenspain77 its actually 2 nights. i have it put on tuesday morning and sleep with it tuesday and wensday night and have it taken off thursday. so i guess mine is a 48 hr one. and they were gonna hospitalize me but my eeg technician convinced my epileptologist to let me do it in a hotel near them so at least theres that. and yes i plan on have a wash cloth bath thankyou for the idea. my husband agreed to help me and i got special soap from LUSH, its not a bar its not jell either its a soft cloud like soap so thatll go on easy and rinse off easy. and thank you for everything. this is all exactly what i needed, and if i feel bad im going to reread all this or message you

thank you so much everyone for your support.

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