alistone

Hi there!
New to this site but seeing your post struck a chord and I just had to join (: I'm 21 from Guelph, ON.
I began treatment for nocturnal seizures approximately four months ago, but noticed strange things in the morning first. For example, I woke up with a severely swollen bottom lip one morning, and another day it was the inside of my cheek that had been affected. Both of those days there was a small spot of drool on my pillow, but I wear a retainer at night and figured that must have had something to do with it.

Anyways obviously everyone's symptoms can be different but if you suspect you are having seizures in your sleep, please see a doctor so they can figure out what is really going on!

In my case, the seizure that allowed me to be diagnosed happened again in the night and my boyfriend walked in on it after a late night at the bar and frantically called my roomie in. I snapped out of it, but was in a post-ictal state and I had urinated in the bed and there was MUCH more drool than I thought possible could come out of me on the pillow!

I guess what I'm trying to say is that I would much rather that I spoke to my doctor before the "serious" one happened to find out if those strange happenings were indications of anything, before a more severe seizure occurred. I'm a lucky girl that my bf finally witnessed a seizure and was able to call an ambulance for me.


***THIS part might be going too far, but I'll go into it anyways, possibly for the poster and anyone else recently diagnosed or curious about symptoms. In the last few months I have experienced a lot of stress and depression about this diagnosis, and I would like to give some thoughts to anyone in the same situation -- so! If anything similar occurs to you or anyone reading, this is not the end of the world (: For a while I thought it was, and worried about losing my boyfriend, friends, social life, my driver's license and my job, etc. It's totally normal to worry and feel sad, but your health should always be your number one priority.
You can spring back from losing a job, time from school or your "independence" with a car, but you may never spring back from serious health problems. Make your health a priority and discuss your symptoms and ANY concerns with a doctor (: Don't be afraid to tell the truth with your doctors or have experienced anything strange like headaches, double vision, deja vu, etc. If you worry about money, or are in need because you are unable to work for a time, turn to family because they will always do everything they can for you even if you feel like a burden. If your significant other or your friends begin to treat you differently, have a talk with them about how you feel and how hard the situation is for you, and if they don't understand and offer you MORE support than previously, maybe they aren't the kind of friend you need to have for the rest of your life (: That last part sounds hard, and for a while I felt that I *NEEDED* my friends, supportive or not -- and I would just put up with whatever disrespectful/rude/dismissive attitude they had because they were my friends and I didn't want to be alone. Please, please - if you are feeling this way know that true friends don't care if you have epilepsy, or cancer, or a giant horn suddenly growing out of your forehead. True friends support eachother through the hardest times, and that makes the good times you will share together even better when some of the most difficult times blow over.

This all sounds very "Mom-like" and "easy for me to say", and I understand - I had that attitude, too. It took me some time to realize that events like this in your life help to strengthen your bond with others, friends or family, and although there is no way to put a positive spin on seizures or diagnosis of epilepsy, it is NOT the black hole that I pictured initially. You will have to make many adjustments in your life, but they are done to keep you safe, and denial of epilepsy and depression, etc. (which I am about to start a thread on myself, coincidentally!) will only make you more sick and more sad.

Take your health in both hands, try to advocate for yourself if you are unsatisfied with your care, and surround yourself in a supportive environment with people who truly love you. I delayed my "actual" treatment for these seizures by at least three months by telling myself the whole thing wasn't happening, and basically allowing a detrimental self-talk circle to continue and intensify.

Good luck to anyone/everyone out there (: