New here- 17 years old- Please read and reply! :S

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

I hope things go well with your EEG tomorrow. Let us know how it goes!
 
I will!

I actually wanted to take a nap today but then realized that I can't. I cant believe I have to stay up 'till one and wake up super early.. Ugh.. It's like school all over again. Lol

I'll be washing my hair soon and I'm dreading the fact that I cannot pit any hairproduct on it! I mean.. My hair does not work if it has nothing. :/
Oh well.

In regards to the jerks... Today has been a so-so day with a few less subtle jerks. I've been getting new symptoms like nausea out of nowhere which makes me feel disconnected and the desire to go to sleep that's so strong that i get in a really bad mood if we are out at a mall or something.

The MRI is on Tuesday and it is with contrast. Hopefully, with the bloods, EEG, and MRI, I'll be able to get some answers.

If these are seizures( IF), then I do not have single clue what other condition could cause this aside from Epilepsy and vitamin deficiency. I didn't ask the doctor what we are looking for and excluding because I didn't want to pressure him.

It is currently 6 pm and I already want to sleep hahaha
 
Just keep telling yourself that the less you sleep, the more likely your brain is to generate abnormal brainwaves on the EEG (assuming that epilepsy is what;s going on for you).
 
Thanks everyone! Just got home from the tests! It was really weird.. I was hooked up for around half an hour. I was put in an almost completely dark room. I was told to not grind my teeth or forcibly shut my eyes and to not open my eyes at all( although I did at times.. couldnt resist lol). I didn't fall asleep but was just really relaxed. The technician came in, turned on a strobe light closed the door and left that very annoying flickering light on for around three minutes. It was really weird; I wasnt scared at all, but my heart raced soon after the strobe light went on . A good minute into that tet, both my arms twitched/jerked very slightly but I hesitate to consider it a jerk at all. I did not have my typical jerks i have daily( of which I have at least 10 per day.. Ugh). I mean, what would you expect? It was recording for less than an hour.. Chances were the doctor would get to see little to no "seizure" activity. The technician guy also told me to breathe heavily at a fast pace for 2 minutes. Really weird once again! Twice, I felt as if I has stopped amd starte again but had no recollection of ever stopping breathing like that. Dunno... My mind must have been fuzzy from it all.


The second stuy that was done was the evoked potentials thing. First, I had to hear sounds with some electrodes on my head and neck. Then, a device was placed on my left wrist. It gave me a continours shock or current or something that felt funny and made my thumb jump continuously.. Same goes with the right hand. Then came the feet.. Now those hurt a bit.

The MRI is tomorrow and hopefully we will be seeing the dcotor to go over the results next week.
 
Yeah the breathing heavily is to make you hyperventilate -- that's a good way to trigger brainwaves associated with absence seizures, so that's why you were asked to do that.

I remember with my first EEG, I was positive that I didn't go to sleep the whole time, but the technician said I did at one point. So it can be a strange disorienting experience, that's for sure.
 
The MRI results showed a congenital small arachnoid cyst in the left middle crannial fossa.
It also showed an anatomic variant of a part o my brain but is still considered normal.

The office EEG came back normal.

He doesnt believe I have seizure-like activity because the 30 minute EEG was normal. He have me a prescription for a tricyclic antidepressant!!!!:mad:
I am already on one antidepressant and anti-psychotic! Plus, that type of antidepressant is know to be with the most risk to cause seizures in people who have or may have Epilepsy. Once I found out what that drug was( Elavil), I told my mom that I refused to take it. Sue calle the office soon after and the doctor was informed. He just said to come back in a year for another MRI.. -.- so much for getting rid of these daily jerks!

Plus, my psychiatric condition is stable and delicate in regards to drug usage and doseage. That's what I have a paychiatrist for. I dont want that neurologist prescribing me something that's known to cause drowsiness and suicidal idealization at first in some.

Do you think that the doctor doesnt believe me? If i do have Epilepsy( what is probably JME ), then I guess I'll just have o wait until I'm hit with a tonic-clonic to get diagnosed.

I dont think my famiy even believes me anymore. My sister is like.. " you dont have Epilepsy! My muscles twitch violently too- I see them jump." but thats not my case, my limbs and/or body move. I dont see my muscle in my thighs jump, the leg moves.

So, I'm just stuck with all this.. Until I see the neurologist next summer. I think he believes I'm making them up since he is aware of the drugs I'm taking. This is not the first time medical personnel have been prejudiceD against me. In April, at school, I fainted and bumped my hea on a wall.. Had this bump on mty forehead. The school nurse didnt even call my mom or arrange papera or a refferal to the E.R. I was the one to inform my mom. The nursejust left me there sitting on a chair. When other students came in complaining of a stomach ache, she would lie them down on the two beds there and give them a lot of attention. ( the nurse knows of my self harm). And, when the school chaplain walked in and asked what happened, she asked if I banged my head against the wall because I was mad! I said no and she still asked me if i was sure! Ugh? SERIOUSLY???!!!!

Discrimination indeed.

So basically, just because i recently left the life of a cutter behind, every medical condition or situation that arises I am either looked at as if I was faking or questioned about it to see if I had cause it!!!!!

When I hady wisdom teeth surgery on April, i had a reaction to the general anesthesia after icame home. I had acute urinary retention. We went to the E.R. and the nurses were laughing and the doctor questioned it.. As if i was just holding it in. They emptied me out... Mu bladder was full with 1 liter of urine!
After that.. I still couldnt pee and they denied me catheterization until I was excruciating pain. I eneded up wailing in pain on the E.R. Bed until they decided to put in a catheter. With an already distened bladder( injured and stuff) even less uring caused inmense pain. They emptied 800mL the second time.
I was ignored that night at the E.R. And was dubbed "the one who DOES NOT want to pee.. Its because all they would lool at were scars!

Im just really mad with everything.
 
Ugh, I'm so sorry you're having to deal with all this. It seems to be a common refrain here at CWE -- doctors being disbelieving or dismissive. And once someone gets labeled in the healthcare system, it gets harder and harder to get docs to see beyond the label and actually treat what's going on.

I don't know what your options are, but is there any way you can see another neurologist? Another possibility would be to look into neurofeedback to see if that will help instead.
 
Ugh, I'm so sorry you're having to deal with all this. It seems to be a common refrain here at CWE -- doctors being disbelieving or dismissive. And once someone gets labeled in the healthcare system, it gets harder and harder to get docs to see beyond the label and actually treat what's going on.

I don't know what your options are, but is there any way you can see another neurologist? Another possibility would be to look into neurofeedback to see if that will help instead.

Exactly that. I hate being labeled. No, I cannot see another neurologist. There are barely any ped. neurologists here and my mom did a lot of things in order to see this one in a relative short notice.

They're not going to go through this again. I believe my parental units are as dismissive and/or disbelieving as my doctor.

You see, I live with my mom and 22 year old sister. My dad lives in an apartment. I have some problems with my relationship with my mom. She "has it for me" ever since I called in Social Services on her..well, I told the school and everything just escalated from there.

The case just closed this April and she says she's too traumatized at what I did to her.
Oh well......

I am dependant on her on needs so there is no way for me to arrange an appointment, drive myself there, and pay for it. Plus, I'm a minor.

Everything is just.....bad.
 
I would tell your parents. There is a chance that your parents might not believe you, but it's worth a try. My parents still don't beleave me after 5 years.
As I told may other people on CWE keep a seizure book, write down how long it lasted, when it happend, any unusual things that happend.
I would make a doctors appointment. Yes, you might have to wait while but it would do no harm in making one.
Have you had these before?
I m no doctor but they sound like some sort of partial seizure maybe even mayoclonic (I think that's the word).
Try looking online at the different kinds of seizure and print out the sytomes and high light the ones that your experience, it will help u and the doc.
Take care
 
Back
Top Bottom